Psychologist Response:

Roz Kalb, PhD
Senior Programs Consultant, Can Do MS

Thank you for your question. The answer isn’t a simple one because it involves your perception of weakness vs. your neurologist’s, as well as your definition of weakness vs. the doctor’s. When the neurologist measures weakness in your limbs, it’s an assessment that takes place at a specific point in time. The doctor is gauging the resistance in your limb at that moment. Is the weakness you feel present all the time or only after you have been using those parts of your body for a few minutes. In MS, there is something called “muscle fatigue,” which refers to a muscle that suddenly tires or runs out of gas after repeated use (while walking for example, or while engaging in extended activity with an arm or hand). After you stop the activity and give the muscle a chance to “catch its breath,” it feels OK again. If you feel weak all of the time, could it be MS fatigue as opposed to weakness that you are experiencing? Exertion fatigue in MS refers to the fact that daily activities often require more energy and effort for a person with MS than for someone else. This means that activities take more than the usual amount of energy because you have to exert more effort to do them with the result that feels more fatigued.

This is a long way of saying that a little more detective work may be required to figure out what’s going on. I would suggest that you consult with a physical therapist and/or an occupational therapist. They do different types of assessment than the neurologist typically does during a neurologic exam. They can actually measure strength more accurately and help you figure out what’s going on when you are engaged in activity. You can ask your neurologist for a referral or you can contact the National MS Society (1-800-344-4867) to ask for a referral to someone in your area. In the meantime, take note of when the feelings of weakness occur, what you’re doing at the time, and exactly what it feels like. This information will help the PT or OT assess what’s happening. I wish you the best. If you have additional questions, please don’t hesitate to get back to us.

Psychologist Response:
Rosalind Kalb, PhD
Can Do MS Senior Programs Consultant

First, let me say how glad I am that you have found accommodations that work for you and that your employer has been so supportive. Not all employers are that helpful. Two things come to mind that may be contributing to your colleagues’ reactions to your accommodations. First, the pandemic has placed a huge toll on the healthcare community – even on those that don’t work directly with COVID patients. Providers are feeling stressed and overwhelmed in ways that may affect their interactions with one another. They may simply be unloading their frustrations and discontent on you.

Second, and more likely, is that your MS symptoms are not as apparent to them as they are to you. Most MS symptoms are invisible to others, and therefore difficult to understand – for example, fatigue, cognitive changes, pain, among others. You didn’t mention in your question what types of symptoms you have and what accommodations you have been given. But if your colleagues feel you’re getting special treatment, it may be because they can’t see anything wrong and wonder why you’ve been given accommodations that make your workload appear lighter than theirs.

Education is probably the key here. If there is a nurse with whom you are closer or who might be open to a sit-down with you to talk this over, I would start there. Let the person know that you have sensed tension and resentment and you’d like to figure out a way to clear the air. Be open about the symptoms that are the basis for your accommodations. You can explain them in your own words and also provide reading material (the National MS Society offers free brochures on virtually every symptom, and also one called “But You Look So Good,” which talks specifically about the impact of invisible symptoms). Offer to answer any questions the person might have. I would also recommend that you ask this colleague for suggestions about how best to reach the other nurses on the staff. Perhaps she/he might be willing to help you educate the others.

My hope is that your willingness to be open and transparent about the impact of your MS will make it easier for your colleagues to understand what’s going on and support you. If they were in a similar situation, they would certainly want the benefits of the Americans with Disabilities Act to work for them too! We can never control the behavior of others, but open, honest communication can often help. If you have additional questions about this, please don’t hesitate to write back to Ask the Can Do Team.

Can Do MS Staff Response:

Sarah Kurtz, MPA
Programs Manager

Great question!

While Can Do MS is unable to provide direct financial assistance, there are several great programs out there that provide solutions where resources may be lacking. Each program has its own criteria and will likely conduct an assessment of need and available resources as part of its application process. Here are just a few resources to check out:

The Multiple Sclerosis Foundation offers assistance paying for-

• Communication devices
• Aids for daily living
• Computer aids
• Environmental control systems
• Home and vehicle modifications
• Orthotics
• Seating, positioning, and mobility devices
• Aids for vision and hearing
• Cooling aids
• Wellness education and adaptive exercise

To inquire about financial assistance through the Multiple Sclerosis Foundation, complete the application here.

Other organizations that offer financial assistance include the National Multiple Sclerosis Society. Their financial assistance program may help pay for:

• Rent, mortgage, and utilities
• Home modifications and assistive technology
• Other services such as respite care and counseling

To inquire about financial assistance at the National Multiple Sclerosis Society, email ContactUsNMSS@nmss.org, or call 1-800-344-4867 to speak with a MS Navigator.

Lastly, remember that there are often community-based organizations that provide aid as well. To learn more about what resources are available in your community, visit United Way’s 211 program here, or simply call 211 directly.

Psychologist Response:

Rosalind Kalb, PhD
Can Do MS Programs Consultant

The Social Security Administration (SSA) recognizes MS as a chronic illness or “impairment” that can cause disability severe enough to prevent an individual from working. If you have any of the following symptoms, or any combination of these or other symptoms that prevent you from working, you might qualify for either Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI):

• Difficulty with walking and other motor skills
• Vision challenges
• Difficulty concentrating or completing simple tasks
• Memory challenges
• Extreme fatigue, regardless of sleep
• Speech impairment
• Side effects of medication(s)

While SSI and SSDI provide different benefits, SSA uses the same disability determination process for both. You can even qualify for both at the same time. To understand steps involved in the application process, I recommend that you download Applying for Social Security Benefits: A Guidebook for People with MS and Their Healthcare Providers from the National MS Society’s website and share it with your MS provider. Successful applications for these benefits depend on a close collaboration between the two of you to ensure that the information given to SSA by your provider adequately documents your symptoms and the ways in which they impact your ability to work.

In addition, the Employment and Benefits Team at the National MS Society (1-800-344-4867) can answer your questions and offer assistance. The Society Security Administration (www.ssa.gov) also offers a myriad of resources to assist you.

Occupational Therapist Response

Stephanie Nolan, OTR/L

Can Do MS Programs Consultant

Driving is an activity of daily living that is often associated with independence and freedom.  Being able to drive oneself to and from places is very empowering, but it’s also important to remember how dangerous it can be to drive if our body is struggling to properly function. This can be a very serious issue and I highly recommend considering the safety risks you may be experiencing and truly determine if driving is safe for you at this time.

First, I’d like to say, I am not a driving specialist and if you’re having safety concerns with driving my suggestion is to see a driving specialist.  These specialists are trained to formally assess driving from many aspects (cognition, motor control, reaction times, vision, etc).  They are also specialized in being able to recommend modifications that can keep you driving longer while also keeping you and those around you safe.  In this situation a driving specialist might suggest switching to a hand controlled accelerator/braking system instead of using your lower extremities. These modifications should be installed by a professional to make sure that it is properly installed and functioning.  Many states (if not all) require that they are installed by professionals.

Generally, when searching for a driving specialist I suggest searching for a ‘Driving Rehabilitation Program’ in your area.  They can be challenging to find sometimes, but  your neurologist may have recommendations in your area.  And don’t forget the MS navigator through the National MS Society (1-800-344-4867).  They are a great resource when looking for all types of specialists.

As for techniques that may be helpful to start with:

·       Stretching- prior to driving it may be helpful to stretch your lower extremities and trunk to prevent muscle spasticity and tightness. A physical therapist is a great person to reach out to for customized stretching programs and training to ensure you’re doing them correctly.

·       Massage- some people find massaging the area can help relax the muscles some to help manage cramping and muscle pain. Some people find that magnesium foams and lotions also help when massaging painful muscles.

·       Positioning- if your body is not properly positioned (hip and knee positions with lengthened or shortened muscle position can impact cramping and pain. This is something that a driving specialist could formally assess for you.  And if you have an OT or PT already providing care you can discuss this with them as well.

·       Hydrating- often muscle cramping can be a result of dehydration.  This is often seen in the MS world when people avoid drinking water to prevent frequent urination however this is not a good strategy and can lean to many other issues.

·       Strengthening- Sometimes our body will use the wrong muscles to compensate for weakness in other areas. If our body is trying to use a small muscle to do the job of a big muscle we can suffer from pain, cramping or difficulty completing the correct motion.  I highly suggest seeing a PT any time pain or muscle control is an issue so they can determine exactly where the breakdown is and provide a custom exercise program to strengthen the correct muscles.

·       Mindfulness/meditation- Deep breathing and meditation has been shown to help with pain management as well.  Adding meditation and deep breathing exercises to your daily routine may help manage the pain globally and in the given moment deep breathing may be an option as well.

·       Modifications- Use cruise control when you are able to so you are giving your lower extremity a break as often as possible to conserve the energy needed to function better. Consider hand controls as mentioned above. Use modified lumbar supports or cushions for positioning if needed. Determine if your car shape/size is causing some of the issues and weather or not it’s realistic for you to purchase a different car that may support you better (yes I know that’s not a cheap option but is something to consider). Some people drive very low cars with poor postural support that makes driving more difficult (I had to beg my father to get a new car after major medical changes because he is 6’3” and was practically sitting on the ground in his car!)

·       Medication- Discusses the issues with your neurologist to determine if medications might be helpful in managing the pain and cramping in your lower extremities.  Keep in mind, medications may cause drowsiness or delayed reaction speeds so this could therefore impose a new risk factor. This is why I saved this option for last.  Make sure you are explaining your situation to the neurologist so they can properly determine what would work best for you.

In closing, my number one recommendation is to consider your safety and the safety of those around you. Discuss your driving concerns with your neurologist, family, therapists and a driving rehab specialist if possible. It may be difficult to accept that driving is no longer safe for you at some point, but it’s important to consider the safety of you and those around you. Best of luck finding the best way to keep you safe and driving!

Can Do MS has several resources on tips and exercises to help manage pain.  This webinar, in particular, has some great information on driving safely.

Employment Specialist Response

Steven W. Nissen, M.S., CRC 

 Director, MS Navigator Services Delivery

This is such a tricky situation and nobody can tell you specifically what to do, but here is  some general information:

Disclosing your MS diagnosis to your employer is one of the most difficult decisions people with MS face. You need to consider carefully before making the decision to do so, as it has legal and job-related implications that can be ongoing.  When disclosing to an employer, there are many issues to consider.

There may be good reasons to disclose and benefits from doing so. Once information is given, however, it can never be taken back; so, it’s important to make certain that telling does benefit you. If you require an accommodation or need to take medical leave, these are reasons that require some level of disclosure.  However, some people choose to disclose just for the sake of disclosing .  This may reduce their stress level or make them feel more comfortable asking for accommodations in the future when or if their symptoms change.

There are several key issues to consider: who at work needs to know; when does your employer need to know; why would your employer need to know; and what do they need to know?  Planning ahead is key as knowledge is power and this should help protect you should you decide to disclose.

Under the Americans with Disabilities Act (ADA), if you work for a private employer with 15 or more employees, an employee is required to disclose if he or she needs an accommodation.  The accommodation can be requested during the interview process or over the course of your employment.  You need to be able to perform the essential functions of your job, with or without accommodations, but in order to get the accommodations needed, you must first disclose.  Some of the practical or emotional reasons for disclosure include reducing stress, being able to more freely examine insurance and benefits, and it simply may make you feel more comfortable in case there is a change in your symptoms in the future.  It is also important to be proactive and not delay until you have a poor performance evaluation.  Once it has gotten to that point, it may be too late.

Be sure to consider both the legal and practical sides of disclosure, the advantages and disadvantages of disclosure, and explore the components of a disclosure script.  Some general suggestions on how to disclose include:

• Your disclosure should be brief, concise, nearly devoid of technical medical terms, and end with how you manage your symptoms so you are able to get a job done.  Make is a win-win for both you and the employer.
• Show how the disability is just one aspect of your life.
• Assume that the employer either knows nothing about your disability or perhaps has misconceptions.  A big part of disclosing is educating your employer.  Remember to keep it simple.
• Write out your disclosure script and practice it on friends and family.  Ask if it is too technical, medical, or scary.

There are many resources available to help you navigate this important decision.

• National MS Society employment information
• National MS Society Disclosure Decisions Guide
• Job Accommodation Network (JAN), 1-800-526-7234 (voice)
• Job Accommodation Network (JAN) Disability Disclosure and Employment

The National MS Society can provide assistance and support regarding your employment questions.  Connect with an MS Navigator by calling 1-800-344-4867, visiting https://www.nationalMSsociety.org, or emailing ContactUsNMSS@nmss.org.  You can discuss disclosure issues and accommodation strategies, as well as obtain referrals to other employment resources.

Whatever you decide, don’t do it alone.  Remember that no two situations are the same and you want to be the one in control.

• Registered Dietitian Response

  Mona Bostick, RDN, LDN

  Can Do MS Programs Consultant

  Thank you for the question.  The Can Do MS Coronavirus and You webpage has some tips for grocery shopping and other tips for managing life during the current pandemic.

  Now is the time to make sure your pantry is well stocked.

  Because you may be preparing to stay home more than usual, it’s important to have healthful foods on hand. It also means shopping for food that will last for an extended period of time — about two weeks’ worth for those who are quarantined. I hope you won’t be holed up for too long, but just in case, here’s a list of foods to keep in mind when making your list.

   Sanitize your shopping cart Use the wipes that grocery stores are providing at entry and using them to scrub down the handles of your cart.

   What about produce? You can grab a plastic produce bag and put their hand inside and use that to pick up something like a head of lettuce. Then drop it into another bag and seal it up. Use the produce bag(s) kind of like a glove.

   Skip the salad bar. Sneeze guards are not enough protection at this time.

   Consider using your own shopping bags. These bags can be washed immediately after use and ready for the next visit. If you choose instead , to use disposable bags, check this out for more guidance.

   Wash your hands, kitchen surfaces, and food.  Wash your hands after returning home from the grocery. Wash your hands before and after you handle food. Wash countertops and utensils with hot soapy water between food items, especially raw meats, fish, and poultry. Wash fresh fruits and vegetables thoroughly before you eat or cook them. Clean the tops of cans before you open them. These are normal precautions, but this may be a good time for a refresher. Here is some more great information for food safety during this time.

   What about take-out food? During this uncertain time, it is important to follow CDC guidelines along with all local regulations. It is also important to support small local businesses. Here is some great information about take-out and delivery foods.

   What the heck should I cook? These times are a great reminder of how important it is to have back up plans, or strategies to use pantry foods for quick, easy and nourishing meals. Everyone has a few examples that they rely on but may be growing tired of the same old thing. To that end I’d like to poi t you in the direction of some inspiration! I am a big fan of Budget Bytes and she’s compiled a list of 15 pantry recipes. Smitten Kitchen’s blog is one of my favorite recipe resources. She’s also got a section for pantry recipes on her website. This is a great article from CookSmart that provided a wealth of information as well.

    For additional information regarding MS Disease Modifying Medications and immunity the MS Society has provided guidance here.

   Wash your hands, and be well!

Psychologist Response

Roz Kalb, PhD 

I would recommend that you connect with a physical therapist or an occupational therapist to talk about the tools or strategies you could use to simplify some of your tasks and manage your fatigue. Your neurologist and/or your primary care provider can help you with a referral. The National MS Society (1-800-344-4867) may also be able to help you find a PT or OT in your area.

You could take pictures of the areas of the farm where you work and perhaps some pictures of the tasks themselves, so that the PT or OT would have a clear picture of the environment in which you’re working and the actual work you are doing. You could either takes those photos to a rehab session or you could share the pictures online if you are having a virtual therapy session.

I would also encourage you to contact the Job Accommodation Network (askJan.org) for suggestions about reasonable accommodations you might request from your employer. And at some point, if these strategies are not sufficient, you might need to think about changing the kind of work you do. I would suggest that you find the Vocational Rehabilitation agency in your state. They might be able to do a worksite assessment/evaluation to brainstorm what is needed to help you maintain your current job, but also work with you to think/plan for the long term if a career change is necessary. They can do a vocational evaluation and possibly help with training for another kind of work.

Attorney Response:

Brian Thompson, Esq.
Associate Director of Programs, Can Do MS

The answer depends on which benefits you are referring to.  For many programs, specific caps are set by individual states.  My recommendation is to consult with your state agency or an experienced attorney (every state offers free legal clinics with attorneys that can point you in the right direction).  If you are looking to apply for Social Security Disability Insurance, there is a cap on the amount of assets you have ($2,000 for single person; $3,000 if married).  Money in a typical savings account counts towards the asset limit; however, there are many types of savings accounts that do not count toward the asset limit.  Bethany K. Lawrence of Disability Secrets does a great job of explaining the different types of assets in this article and outlines how to apply for SSDI with multiple sclerosis here.  You may be well-served to seek the advice of a financial planner experienced in SSDI.

Employment Specialist Response

Steven Nissen, M.S., CRC and Christina Forster, MA, CRC, MSSMC

National MS Society

Thank you for the question…in order to determine whether your employer would provide this as an accommodation, you would first have to decide to disclose your MS, which would be a requirement to requesting the helmet or any other accommodation under the Americans with Disabilities Act (ADA).

This decision requires thoughtful planning.  We know that talking about MS in the workplace is difficult.  Whether a person has invisible symptoms, or symptoms that require use of medical equipment or devices, the decision to disclose and how to communicate your condition and need for accommodations is a highly individualized one.  Disclosure has both legal and emotional implications.  Legal reasons to disclose primarily involve the tapping into protections including the ADA and the right to request reasonable accommodations.  Emotional reasons for disclosure may include reducing stress, feeling comfortable on the job (particularly with one’s boss and co-workers), and it may reduce feelings of guilt or dishonesty that can sometimes occur.

 No two people or situations are the same, but here are some general things to keep in mind:

 To request a workplace accommodation a person needs to disclose information about their disability related limitations – including, possibly, their diagnosis.

• The person with MS determines the initial extent of disclosure, but employers do have the right to request additional relevant information if it is needed to determine the disability and need for accommodation
• Avoid medical terminology and complete medical history; use “sound bites” and easy-to-understand language
• Determine the most appropriate person, the most appropriate time, what to say, and consider your reasons for disclosing

 With visible symptoms, or symptoms requiring medical equipment or devices, it is sometimes better to talk about the obvious than pretending there is nothing noticeable.  But don’t dwell on your MS or the equipment; instead focus on abilities and productivity. What skills and expertise do you bring to an employer?  How can accommodations allow you to be even more productive and efficient on the job?  Remember that this is just a part of you, but you are wanting to convey you are a highly qualified, competent employee.  With coworkers, it is not necessary to inform them about your MS.

If you again feel like it would be better for them to know when you are using some equipment, then the important thing is for YOU to control that information.  Communication is key and you want to be the one talking about your MS and the equipment you are using.  Your employer has an obligation to keep your disability status and need for accommodations private, so they should not share it.  You, the employee, determines who knows, how they know, and what they know.  Sometimes talking about the “elephant in the room’”allows you to control the flow of information better and opens up the lines of communication.  Remember to take time to think about it and plan your approach as once it is out there, it’s out there and you cannot take it back.

 There are resources to assist in learning more about disclosure, reasonable accommodations, and talking through the advantages and disadvantages of disclosing.  Some include:

 Job Accommodation Network (JAN), https://askjan.org/, 1-800-526-7234

ADA National Network, https://adata.org/, 1-800-949-4232

National MS Society, https://www.nationalmssociety.org/, 1-800-344-4867

Occupational Therapist Response

Laura Kingston, OTR/L

Can Do MS Programs Consultant

Decreased coordination and possible numbness in hands as well as decreased strength can be common symptoms that someone may experience with MS, which may make working at a computer difficult, frustrating, and exhausting.

I would start by making sure you have tried to work on daily strengthening exercises for the intrinsic muscles in your hands.  These exercises could include:

1) with your palms flat, spread your fingers a part and then bring them together

2) touch each finger tip, one at a time, to the tip of your thumb

3) with your palms flat, raise and lower one finger at a time.

I would do these exercises 10 reps, 2-3x/per day.    Your best resources to find the best exercises for you is a qualified occupational therapist, physical therapist, or other healthcare team members.

Also, you may consider a few modifications to your work space:

1) Keyboard overlay to increase texture over the keys to help you type easier.

2) Voice activated software like Dragon Dictate would minimize and/or eliminate the need to type and you could just speak the content you want written.

3)  Many IT Departments can slow down the speed of your mouse to provide improved control over your cursor.

4)  Info Grip – This is a brand of a one handed keyboard that some people like if one hand is just not working well.

I would also remember to think about your energy management and trying to incorporate more breaks into your day to stretch your wrist/fingers out.  By simply pacing tasks out that require fine motor skills and spread those tasks out throughout the day, you are less likely to wear out that muscle group.

Taking into mind your overall ergonomics is also something to look at: If your body is well supported at your desk top/computer work space it will function better.  You can make sure you are following “The Rule of 90’s” which means you try to achieve a 90 degree angle at your ankles, knees, hips and elbows when sitting at the desk/computer.  You want your arms well supported on either armrests or the desktop.  You also want to make sure your eye gaze is hitting the top of your monitor screen to make sure you are not straining your neck looking at the screen all day at the desk.”

Recently, La Trobe University published a paperwork that offered these additional tips:

Posture-related injuries from computer use

Back and neck pain, headaches, and shoulder and arm pain are common computer-related injuries. Such muscle and joint problems can be caused or made worse by poor workstation (desk) design, bad posture and sitting for long periods of time. Although sitting requires less muscular effort than standing, it still causes physical fatigue (tiredness) and you need to hold parts of your body steady for long periods of time. This reduces circulation of blood to your muscles, bones, tendons and ligaments, sometimes leading to stiffness and pain. If a workstation is not set up properly, these steady positions can put even greater stress on your muscles and joints.

Preventing computer-related muscle and joint injuries

Tips to avoid muscle and joint problems include:

• Sit at an adjustable desk specially designed for use with computers.
• Have the computer monitor (screen) either at eye level or slightly lower.
• Have your keyboard at a height that lets your elbows rest comfortably at your sides. Your forearms should be roughly parallel with the floor and level with the keyboard.
• Adjust your chair so that your feet rest flat on the floor, or use a footstool.
• Use an ergonomic chair, specially designed to help your spine hold its natural curve while sitting.
• Use an ergonomic keyboard so that your hands and wrists are in a more natural position.
• Take frequent short breaks and go for a walk, or do stretching exercises at your desk. Stand often.

Computer-related overuse injuries of the hand or arm

Muscles and tendons can become painful with repetitive movements and awkward postures. This is known as ‘overuse injury’ and typically occurs in the elbow, wrist or hand of computer users. Symptoms of these overuse injuries include pain, swelling, stiffness of the joints, weakness and numbness.

Preventing computer-related overuse injuries

Tips to avoid overuse injuries of the hand or arm include:

• Have your mouse at the same height as your correctly positioned keyboard.
• Position the mouse as close as possible to the side of the keyboard.
• Use your whole arm, not just your wrist, when using the mouse.
• Type lightly and gently.
• Mix your tasks to avoid long, uninterrupted stretches of using the computer.
• Remove your hands from the keyboard when not actively typing, to let your arms relax.

Occupational Therapist Response

Stephanie Nolan, OTR/L
Can Do MS Programs Consultant

According to the Multiple Sclerosis Association of America, showering can be one of the biggest challenges for people with MS because of “slippery surfaces, temperature changes, and energy needed to stand.”  This can have profound impacts in many areas of our lives.  Many people with MS have had success modifying their bathroom with a walk-in shower that includes with a grab bar and bench (see below).   The National MS Society offers resources on increasing accessibility and finding resources to help make these modifications affordable.

If a complete remodel is not in your budget, here are some general suggestions that hopefully will create new ideas and successes. Please keep in mind that every person and every shower is different. For the best results, you should consult an occupational therapist to get specific guidance and prescriptions for your specific circumstances.

Typically, I recommend that people remove their glass doors and replace them with a shower curtain. I know this can be a lot of work and some people prefer not to make big changes. However, this will allow enough room to use a “Tub Transfer Bench.” This is one of my favorite shower safety tools. It’s a bench that hangs a few inches over the edge of the shower lip just enough to allow you to sit on the edge of it, turn your leg in, and slide over into the shower. This completely eliminates the need to step over the lip of your shower, as well as the need to balance on one foot at a time while on a slippery surface.

This bench is VERY helpful in preventing falls and injuries and runs between $60-130. You can find these at local pharmacies like Walgreens, RiteAid or CVS, as well as local hardware stores such as Lowes or Home Depot. You can also order it online at Amazon.com. Many churches and community centers also lend out these benches since most people who have had a knee or hip replacement use them for only a few months after their surgeries and then donate them. Here is a video of a few different techniques: https://www.youtube.com/watch?v=ckuZ4JoN8V4 .

Please be aware that there are weight limits on these benches of 250 lbs. However, there are also “Heavy Duty” versions for anyone over that weight. I usually recommend the ones that have suction cups at the bottom to stabilize it. However, if the bench needs to come in and out, it can often be more challenging for other shower users.

Here are few more suggestions to make your bathroom safer:

• Use bath mitts and soap-on-a-rope, along with bath, hair, and tooth-care products in pump dispensers; for teeth, try large-handled electric toothbrushes and flossing swords.
• Wall-mounted soap dispensers can be used in the shower or at the sink to save space, reduce clutter and make it easier to access. Some even have no-touch systems.
• Use non-slip tub decals and rubber-bottomed bath mats.
• Slip into a terrycloth bathrobe, saving the need to towel off.
• To keep your bathroom cool, install a window fan and/or make sure your built-in ventilator works properly.

I hope this helps you with your shower transfers and makes you feel more safe and independent at home.

For more information, I’d recommend this webinar that I co-presented on making your home more accessible.  Here are some other resources specifically focusing on bathroom modifications.

https://www.everydayhealth.com…

https://medium.com/@LivingFree…

https://multiplesclerosis.net/…

Long Term Disability Attorney Response

Jamie R. Hall, Esq.

Social Security Disability Insurance (SSDI) benefits may be taxable, depending on your income level.  Generally speaking, tax liability for a single filer begins at an annual income of approximately $25,000.  For a married couple filing jointly, tax liability begins at approximately $32,000 of annual income.  Claimants should be aware that the SSA will perform tax withholding upon claimant request.

The taxation of private long term disability benefits can vary, but is typically based upon whether the insurance premium was paid in pre- or post-tax dollars.  If the premium was paid in pre-tax dollars (such as the employer paying for the policy), then the benefits would be taxed.  If the policy premium was paid in post-tax dollars, the benefits would not be taxed.  More simply, all long term disability plans are taxed; it is simply a matter of whether tax is paid on the policy premium or on the policy distribution.

The above are general concepts of taxation for disability benefits, and there may be variation from state to state or based upon the individual.  Always consult with your tax advisor and/or legal counsel for proper planning when receipt of disability income is anticipated.”

For more information on SSDI, please watch this webinar and this webinar that I presented for Can Do MS.

Employment Specialist

Steven W. Nissen, M.S., CRC 

 Director, MS Navigator Services Delivery

Fatigue is one of the most-often cited symptoms that poses challenges in the workplace.  There are some practical things that can be done to minimize the effects of fatigue on the job.  This can include energy conservation techniques (e.g., planning for the day ahead, laying out work clothes the night before, making lunch before going to bed, etc.) as well as specific accommodations or modifications to the workplace and work schedule.  Many employees with MS are protected under the Americans with Disabilities Act (ADA).  This legal protection protects against discrimination in a variety of settings, including the workplace, and allows for qualified employees with disabilities to request reasonable accommodations.  If you work for an employer with 15 or more employees, or for a state or local government with any number of employees (or are applying for a position with either), you may have the right to request reasonable accommodations under the ADA.  Although the basics of the law are relatively simple, the steps to initiate these protections can be complex and subtle.  So it might be important to make sure you understand how the law works before you speak to your employer or potential employer about your accommodation request.

There are many examples of accommodation strategies for a wide range of MS-related symptoms.  The Job Accommodation Network (JAN) offers extensive information about accommodating MS on the job at https://askjan.org/disabilities/Multiple-Sclerosis.cfm.

Specific examples of accommodations for fatigue can include the following:

Taking periodic rest breaks

• Ensuring workspace is located in appropriate location
• Utilizing ergonomic equipment
• Requesting a flexible schedule
• Having the ability to telework or work remotely

Adjusting job schedules or location may be considered a reasonable accommodation.  This may include adjusting hours to minimize commuting times – working earlier or later in the day when someone has the most energy and/or minimizing commuting time when there is likely less traffic on the roads.  It may also include telework – working remotely to completely eliminate the need to commute to an office.  It is important to realize that teleworking 100% of the time might not be possible.  However, working from home even a few days per week can be a very effective way to manage fatigue.  The U.S. Equal Employment Opportunity Commission (EEOC), the enforcer of the ADA, has a useful factsheet that addresses telework as a reasonable accommodation:  https://www.eeoc.gov/facts/telework.html.

Please know that reasonable accommodations are determined on a case-by-case basis and the bulk of the responsibility in requesting accommodations falls on the employee with MS.  Therefore, it is important to get educated about the process including the relationship between disclosure and accommodations.  You can do that by tapping into the resources available including:

Job Accommodation Network (JAN), https://askjan.org/, 1-800-526-7234

ADA National Network, https://adata.org/, 1-800-949-4232

U.S. Department of Justice ADA Information and Technical Assistance, https://www.ada.gov/, 1-800-514-0301

National MS Society, https://www.nationalmssociety.org/, 1-800-344-4867

Your state’s vocational rehabilitation (VR) agency, https://askjan.org/concerns/State-Vocational-Rehabilitation-Agencies.cfm

In addition, Can Do MS and the National Society offer many resources on employment issues, including:

Employment Webinar Can Do MS

Reasonable Accommodations Webinar Can Do MS

Managing Your Employability With MS Article Can Do MS

Careers Resources

Employment Resources

Attorney Response

Brian Thompson, Esq.

Yes, there are laws to protect people living with MS from harassment, which can be a form of discrimination.  Everyone has a right to freedom from discrimination. If you feel that this right is being violated, you should seek advice from legal counsel.  Every state has free legal clinics that can provide resources and, in some cases, representation.

Your options will depend greatly on the type, severity, and pervasiveness of the “bully harassment” involved, as well as where it takes place.  For example, if the harassment is occurring at work, this could constitute a hostile work environment and/or disability discrimination.  You may be entitled to remedies under the Equal Employment Opportunity Act and the American with Disabilities Act (ADA).  The ADA also protects the rights of people with disabilities in public accommodations, transportation, government services, and telecommunications.  For more information, you can call the Department of Justice ADA Information line at 800-514-0301.

Beyond claims under the ADA, every state has laws on verbal assault.  These claims may require proof of psychological or emotional damage.  There is a growing movement to expand hate speech laws so that proof of actual damages may not be necessary.

In 2009, crimes motivated by a bias against “a victim’s actual or perceived disability” was included in the federal hate crime statute; however, a federal cause of action typically involves the commission of another crime.  “Bullying” someone based on their disability without another crime, most notably an act of violence or an immediate threat or incitement of violence, may not arise to this level.

However, over the past 2-3 years, many states are expanding their hate speech laws to include certain denigrative insults without an act violence or another crime; the harassment alone- and certainly if it’s accompanied by threats- may be prosecutable.  In addition to criminal penalties, civil remedies may be available in a tort lawsuit for certain harassing behaviors.  Please seek legal advice from a lawyer in your state to determine the best courses of actions.

Disability Attorney Response

Reprinted with permission from Disability Benefits Help

(SSDI) benefits do convert from Social Security Disability benefits to Social Security Retirement benefits once you reach retirement age. Nothing will change. You will continue to receive a monthly check and you do not need to do anything in order to receive your benefits. The SSA will simply change your disability benefit to a retirement benefit once you have reached full retirement age. When you reach that age, however, can vary depending on which year you were born in.

Many people think that their SSDI benefits will automatically change to retirement benefits when they reach age 65. Some of these people are correct, but only those who were born before 1937. Anyone born after 1937 does not reach full retirement age at exactly 65 years of age so their SSDI benefits will not change to retirement benefits as soon as they turn 65 years old. When will these benefits convert? It depends on the year you were born. The following outline will help you understand at what age your SSDI benefits will convert to retirement benefits:

• 1938 – 65 years and 2 months
• 1939 – 65 years and 4 months
• 1940 – 65 years and 6 months
• 1941 – 65 years and 8 months
• 1942 – 65 years and 10 months
• 1943 through 1954 – 66 years
• 1955 – 66 years and 2 months
• 1956 – 66 years and 4 months
• 1957 – 66 years and 6 months
• 1958 – 66 years and 8 months
• 1959 – 66 years and 10 months
• 1960 and later – 67 years

By reviewing the age breakdown above, you can see at what age your Social Security Disability benefits will convert to Social Security Retirement benefits. Once you begin receiving Social Security Retirement benefits, you will receive your benefits without any limit on your earnings. This means that you will begin receiving your monthly benefits regardless of your income, unlike when these benefits were simply SSDI benefits. When your SSDI benefits convert to retirement benefits, the SSDI rules no longer apply to the benefits as the benefits now fall under the retirement guidelines.

Visit https://www.disability-benefit… for more information

Occupational Therapist Response

Stephanie Nolan, OTR/L

Can Do MS Programs Consultant

If you’re not already getting therapy services from either an OT or PT, I would highly recommend starting services and addressing your environmental barriers with them. They can work with you to create a personalized plan.  In your case, stairs seem to be the biggest barrier. Do the stairs have railings on both sides, and if so, can you reach both while on the steps? If not, have you ever worked on stepping sideways with both hands on one railing? Sometimes having four points of contact (both hands and feet) can allow for increased stability and less exaggerated muscle use.

Are you able to sit on the steps and “bump” down on your bottom using  more arm strength and having less risk for loss of balance?  There are rentable ramps that can manage shorter flights of stairs or exterior hydraulic lifts.  There are also various techniques that can help you negotiate stairs. A therapist can assess your movement patterns to help develop these techniques and determine your best options.

Next, consider energy conservation. When planning to go out, limit fatiguing activities before and after managing the stairs. For example, maybe instead of showering the morning before you go out, shower the evening before so you have time to recover. Get more rest the night before if possible. Plan rest breaks (during and after)!

Depending on the facility and size of each landing you could have a chair placed on each landing. This would allow you to sit and rest between flights to recover before moving to the next. Arrive to your destination early when possible and rest before your planned activity. Using a shared-ride van with a lift is a great way to conserve some energy when getting in and out of the vehicle and not having the burden of driving!

Communicate! This is very important when dealing with the symptoms of MS. In this case, to communicate will also mean to advocate. Contact your apartment complex and ask about their potential for installing a ramp of railings for easier access.  Having chairs placed on the landing is simple request that may be a quick solution. Talk to them, see what other solutions they may come up with.  Communication may also mean asking for help from a friend. Maybe someone can help carry items down for you or provide physical support (best to have a therapist train your friend who may be helping).

As a last resort, I would suggest considering moving to an apartment that is handicap accessible and that does not have stairs. I know this is a big task to consider, but imagine how much more energy you will have- and how many more activities you could enjoy- if didn’t have to navigate stairs.  Also, keep in mind that your MS may change over time making stairs even more difficult or unsafe. I often suggest that people look for accessible apartments before they need them since wait lists can be very long! Consider how those stairs affect your overall quality of life and determine if moving would change that for you.

Hope this helps!

Physical Therapist Response
Michele Harrison, P. T., CSMS, ATRIC, ATP
Can Do MS Programs Consultant

We know that exercise is essential in our lives to maximize our health and to improve our ability to participate in all the activities that comprise our lives. Once we have committed to this concept there are a few things we need to do to be successful:

1. Choose an activity you enjoy participating in.
2. How accessible is the exercise chosen to my abilities?
3. How accessible is the exercise chosen to my location?
   a. What local and financial resources are available

Aquatic exercise is a great option for exercise for many reasons. A couple of benefits include:

1. Greater ability for movement and standing up due to buoyancy in the aquatic environment.
2. If the water is the appropriate temperature, it is a great way to be active and stay cooler.

The next step is to locate a pool in your area. If this is a recreation center, then there may be exercise classes and programs available, or a person may choose to participate in their own workout during open swim times. Contact your local physical, occupational, recreational therapist or exercise physiologist for information regarding an effective aquatic exercise program that can address endurance/fatigue, strength, balance, flexibility and mobility is important. The local National MS Society chapter or MS clinics may offer classes as well. Sometimes there really are no local pools close enough to utilize. Some people have private pools or decide to have one built for their own residence. The options for this are numerous and varied. A custom therapy pool could be designed and fabricated to most any specifications desired. There are above ground pools and pools that are in ground. There are pools that accommodate only one person or multiple people. There are pools with a variety of sizes, depths, pool surfaces, seats and whirlpool jets, for example. A decision for pool design will be driven by the types of activities the person wants to participate in. For example, if a person want to swim laps but has limited space in their home or yard, they may want an endless pool. This is a pool that is 1 lane and has a current to allow a person to perform laps while swimming in place. This style could be used with or without the jets for water walking but configuration will limit other uses. Someone that wants to do other exercises may need a space that is bigger to move around in.

Other considerations include pool depth for the best utilization of buoyancy, ability to sit for rest breaks during a workout if needed and access to a pool. There are a variety of ways to get in and out of the pool including a ladder, steps with or without a railing, ramp or a lift (this could be a permanent lift or mobile). A pool that is above ground may not be as easy to get into and out of but more economical and easier to install. Safety and ease of getting in or out of a pool consistently is important. There are small walk-in types of pools with a door but these are very limited in space and sometimes expensive options. The person putting a pool in there residence also needs to think about the expense of putting the pool in but also the continued maintenance to keep the water clean and safe for use. The tests to keep the chemicals and Ph levels often require daily maintenance. Is the pool indoors or outdoors with only seasonal availability for use? This needs to be considered as well.

Do people use a private pool? This is the $1,000 question. As with any type of exercise equipment, it is up to the person and their motivation to use the equipment, not to just look at it. If you are motivated and able to schedule use of the pool 3 – 5 times per week, it may be a good investment. However, if you only use it occasionally, finding an existing local pool may be a better choice.

There are a number of custom therapy pool designers and manufacturers. There are often local pool designers as well.

Endless Pools or Waterwell
1601 Dutton Mill Road
Aston, PA 19014
(866) 559-7946

Hydroworx
1420 Stoenridge Drive
Middletown, PA 17057
(800) 753-9633

Ferno
70 Weil Way
Wilmington, OH 45177
(937) 382-0895

Whitehall Manufacturing
15125 Proctor Ave.
City of Industry, Ca 91744
(800) 782-7706

Aquatic Access Inc.
417 Dorsey Way
Louisville, KY 40223
(800) 325-5438

Physical Therapist Response
Mary Kay Hausladen Foley, PT, GCFP, CHTP
Can Do MS Programs Consultant

First of all congratulations on your obvious commitment to exercise and self-care!

As you probably know aquatic therapy and exercise can be a wonderful choice for people with MS. The water, given it is an appropriate temperature, helps to keep your core temperature down during exercise, while the buoyancy of the water often allows for greater function and freedom of movement. Having a pool at home can help alleviate some of the common pitfalls of aquatic exercise including travel time to a pool, heavy chlorination of public pools, and finding a place to do standing exercise if the pool is being utilized for lap swimming.

Some aspects to consider in your decision to get a home pool would include;

1) Do you truly enjoy aquatic exercise? Some people start aquatic exercise because of its benefits, which are many. However, unless you truly enjoy pool exercise it may not be a wise investment.

2) Have you thought about safety considerations? Are you able to transfer safely into and out of a pool, or do you have someone to assist you? Will someone be home while you are in the pool if you need assistance?

3) Do you enjoy exercising alone? Some people prefer the camaraderie of an aquatic class setting, while others much prefer a quiet place to do their exercise alone.

4) Have you tried aquatic therapy? Even if you have done some pool exercise in the past, I would recommend consulting with an aquatic therapist before making this purchase. They can help you look at your specific needs and recommendations for exercise presently, as well as considering what might be appropriate for you in the future. They can also help you look at the different pool models which are available and recommend what features are important to maximize your exercise potential, as well as safety. The American Physical Therapy Association has an Aquatic Physical Therapy Section which has a locator for aquatic therapists. The link is: http://www.aquaticpt.org/findaclinic/index.cfm (I did notice that all resources are not listed on this site, but it is a good place to start. If they do not have a listing for someone in your area, I would ask a local physical therapist for a recommendation.)

I work in a physical therapy clinic where we have a Swim Ex exercise pool. We have had patients come in to use our pool on a regular basis for their exercise programs. Most have not used the current for swimming, but several have used it for resisted walking. You might want to consider this use when deciding whether or not to get a pool with current. In addition to allowing you to work on walking for functional distances, a current allows you to more easily include resisted walking or running for cardiovascular exercise in your routine.

Aquatic exercise is a wonderful way to feel refreshed and energized while gaining the cardiovascular, strength and flexibility benefits of exercise. I wish you the best with your decision on this potential investment in your health. Whether or not you decide to get the pool, be sure to keep moving.

Community Liaison Community

Lisa Giogetti

Social Security Disability Help

Social Security Disability Insurance (SSDI)provides financial assistance to disabled workers and their families. You can qualify for SSDI if the Social Security Administration (SSA) deems you medically disabled and finds that you have worked for long enough and have paid into the Social Security tax pool, the amount depends on your age, from where these benefits are drawn.

The first step is to determine if you qualify.  An SSDI attorney or community liaison (including MS Society Navigator) can help you with this determination, which can be, unfortunately, frustratingly complex.  The basis for qualifying is the SSA’s Blue Book, which has medical conditions listings that typically must be met.  These conditions are outlined in  http://www.disability-benefits-help.org/disabling-conditions/multiple-sclerosis-and-social-security-disability

The listing for MS is found under the neurological disorders section of the adult Blue Book listings, 11.09 Multiple Sclerosis. In order to meet the listing, you must show:

• Limb dysfunction causing walking difficulties
• Vision decrease despite corrective lenses
• Nervous system issues causing fatigue
• Mental disorders, including mood swings or memory loss.

If you believe you meet these qualifications, the next step to complete an application, which can be found at https://www.google.com/url?sa=….

You will need to gather any medical information that may help your claim. A list of daily activities will be invaluable because MS can affect many different aspects of life. Consider asking for statements from doctors and include records of hospitalizations, any treatments prescribed, and in the case of a child, statements from teachers and other professionals who regularly see your child and can attest to the effects of their condition. Be as thorough and detailed as possible in order to give yourself the best chance of qualifying. You will also need the financial and employment information required by both the SSDI and SSI programs. http://www.disability-benefits-help.org/content/application-process

When you are ready to begin the application, take the following steps:

• Gather all necessary medical and non-medical documentation.
• Begin filling out the application forms online or in person with an SSA representative. Applications for children can only be processed in person.
• Wait. The wait time for a decision can be anywhere from a month to over a year.
• If you receive a denial, know that you may appeal that decision within 60 days of receiving it. Many initial applications are denied by the SSA for being incomplete or incorrect. The appeals process is how most folks are finally approved.
• If you have difficulties with any of the steps or are unclear of the process, consider hiring a disability advocate. These specialists are well versed in the application process and will help you prepare and present your claim to the SSA examiners.
• A disability advocate can be particularly helpful when it comes to receiving back pay. As the application process and decision-making process also takes time, you can be awarded back pay from the time that you became disabled. Note: this only applies to SSDI applicants.

The application process for Social Security Disability benefits can be lengthy, but entirely manageable if you stay organized and consider hiring an advocate to represent you. They can help you structure your application, so that you stand a better chance of receiving the benefits. With or without representation, receiving these benefits will help you afford treatment for MS and lead a financially stable life.

For more background information on SSDI and MS, please utilize these resources:

Disability & Social Security Benefits in MS – Can Do MS Article

The New MS Listing for Social Security – Can Do MS Webinar

Knowing How To Navigate Leaving the Workforce – Can Do MS Webinar

Applying for Social Security Disability Benefits – National MS Society Guidebook

Occupational Therapist Response

Stephanie Nolan, OTR/L

Can Do MS Programs Consultant

Hello CAN DO MS readers! Thank you for this great question about life-saving equipment for those with MS in the case of emergencies. While many people think “this won’t happen to me,” emergencies are sudden and unavoidable.  Prevention and preparation are key to survival and success. Since reading long paragraphs can be challenging visually (and sometimes cognitively) for those with MS, I am going to make bullets for you to use as a ‘checklist’ in preparing your home for safety.

1.    Create an ‘Emergency Info Packet’ and keep it out in the open with something written on it like “in case of emergency, please read.”  This can be easy for you to grab and go in an emergency situation or for someone to easily find in case you are incapacitated. This should be in a waterproof container and include the following:

a.    Your diagnosis (with current symptoms, e.g.  explain speech difficulties so that if someone finds you struggling to talk they don’t assume this is a new symptom and incorrectly diagnose you with something else)

b.    Current medications

c.    Allergies

d.    Care instructions

e.    Past medical history (surgeries, diagnosis, injuries, precautions e.g. thickened liquids)

f.     Emergency contacts

g.    Information about pets & service animals

h.    Primary care doctors or specialists (ex neurologists)

i.     Copies of insurance cards

2.    HAVE A PLAN! Depending on where you live you might need to plan for something like a hurricane, earthquake, heat waves or maybe even forest fires.

1.            Have a few people for emergency contacts that know your plan.

a.            Discuss your limitations with people in your neighborhood or apartment complex and practice evaluations with those willing to help.

b.            Keep the plan written down and organized with phone numbers and addresses.

c.            Have an emergency ‘meetup’ place in different locations depending on the direction of the current threat. (e.g. if a fire comes from the north, than you might go south to your aunt’s house; if a hurricane comes from the south, you might go to your sisters house in the north. Also, if possible, have some extra medical equipment stored at that home like walkers, shower chairs, etc.).

d.            Keep the written plan in a place that is easy to get to (e.g. hang a copy on your refrigerator or put a copy into your go bag).

e.            Towns or neighborhoods often have an emergency preparedness program for people with disabilities- Contact your local emergency management agency to see if they keep a list of people with disabilities to know who to assist in the case of an emergency or disaster.

3.    Signs: post a sign in your window that indicates someone with a disability lives in the home and needs extra assistance in the case of emergency.

4.    Have an ‘Emergency Go Bag’ (maybe even 2- one in the home and one in the car) that includes the following:

a.            At least 7 days worth of medications and copies of prescriptions

b.            Some form of payment (cash, checks, extra debit/credit cards or prepaid gift cards)

c.            Pen and paper

d.            Physical copies of local maps

e.            Wheelchair equipment (e.g. patches for tires, correct allen wrenches for adjustments etc.)

f.             Food and water (for you and any service animals)

g.            Power packs, chargers or batteries for medical equipment you need to bring (CPAP, wheelchair batteries, hearing aid batteries, etc)

h.            Flashlights, whistles and batteries

i.              First aid kit

j.              Catheters and gloves

k.            Cell phone chargers, extra batteries or power packs

l.              Emergency blankets, instant ice packs to prevent overheating and ponchos

m.           Contacts or extra glasses

n.            Emergency flairs

o.            Another copy of your ‘Emergency Info Packet’

6.    Install the FEMA app or dial in to NOAA weather radio to be up-to-date on disasters or potential threats. (NOAA also has options for deaf and hard of hearing).

7.    Sign up for Smart911- if you call 911, this program will provide the listener with important information about you in the case that you can’t speak or someone is calling for you but doesn’t know your medical info. It also allows responders to provide the best possible care upon arrival.

8.  Wear medical alert tags/bracelets (often home security systems will offer these).

9.  Set up home systems with voice activated devices to be able to quickly call 911 in an emergency (ex. Echo Dot, Alexa, Google Home etc.).  If you have a watch that is linked to your phone, this can be helpful as well

10.  For those who use a power chair, have a lightweight manual option available for emergency evacuations.

11.  Other supplies that may come in handy in the home but may not fit your emergency bag:

a.            Stair evacuation device (some slide down, some chairs ‘click’ down step by step and some are sling like for carrying a person)

b.            Fire blankets and fire extinguishers

c.            Fire evacuation masks (Evaculife makes products specifically for people with disabilities).

d.            You should have fire blankets in your house (preferably near the kitchen where most house fires start) in order to extinguish fires.  Fire blankets cut off oxygen supply, which is one of three elements on which a fire thrives.  For this reason, however, they are not intended to cover your face as this will cut off your oxygen supply, as well.

12.  Knowledge is the greatest resource!  Take some time before an emergency happens to know what information and services may be available:

Smart911: https://www.smart911.com/ FEMA : https://www.fema.gov/office-disability-integration-and-coordination

Disasterassistance.gov : https://www.disasterassistance.gov/information/disabilities-access-and-functional-needs

Red Cross Disaster preparedness for people with disabilities (checklist included): http://www.disastersrus.org/MyDisasters/disability/disability.pdf

Emergency Preparedness Kit for People with Disabilities (Oregon specific called  ‘ReadyNow’ but great resource for all people): http://www.ohsu.edu/xd/outreach/occyshn/upload/ReadyNowToolkit.pdf

Ready.gov: https://www.ready.gov/individuals-access-functional-needs

Build a Kit Video: https://www.youtube.com/watch?v=kJuDXorO9_g

NOAA for hearing users with loss: http://www.nws.noaa.gov/nwr/info/shhh.html

Also, the Pennsylvania Department of Health created a great chart on emergency preparedness for people with physical and mobility disabilities. http://www.health.pa.gov/My%20…

Finally, the National MS Society has some great resources on emergencies, disasters, and fire responses, including this website: https://www.nationalmssociety…..  I would also recommend reaching out to a local MS Navigator to discuss local resources that may be available to you by calling 1-800-FIGHT-MS.

I hope these resources are helpful.  Be well and be safe!

Occupational Therapist Response

Juliann Hanson-Zlatev, OTR/L

Can Do MS Programs Consultant

Around 60-80% of individuals living with M.S. experience heat intolerance.  A small rise in your body temperature — as little as one quarter of a degree — can make it harder for your nerves to send electrical impulses.  This, compounded with the other symptoms of MS, can make you feel overheated, tired, and weak.  Cooling vests can provide relief by absorbing your body’s heat and sweat while cooling your chest and stomach.  Some vests can be quite expensive, so you are smart to do homework first.  Your MS doctor, nurse and rehab professionals can make recommendations based on your specific needs.

Can Do MS has worked with Polar Products.  They have a wide variety of vests and a good understanding of MS heat intolerance.

As far as information on products and strategies, Active MSers, the Department of Veterans Affairs MS Center of Excellence, and the National MS Society has some good resources on keeping cool.  The Society’s Navigator Program can also connect you to local resources by calling 1-800-FIGHT MS.  I’d also recommend this webinar and article by fellow Can Do MS Programs Consultant Beth Bullard. The Multiple Sclerosis Association of America’s Cooling Distribution Program and the Multiple Sclerosis Foundation’s Cooling Program provide financial assistance for people with MS to access cooling products.

Occupational Therapist Response

Stephanie Nolan, OTR/L

Can Do MS Programs Consultant

First, I congratulate you on your initiative to modify your kitchen to make life easier for you and your family.  Can Do MS believes strongly that the answer to a disability is mobility.  You can stay active in the kitchen, while also being mindful of your fatigue and, most importantly, your safety.  The first resource I would recommend is the National MS Society’s Navigators, who are available at 1-800-FIGHT-MS.  They can provide local resources to trusted contractors who specialize in kitchen modifications for your specific needs and abilities, as well as financial assistance opportunities to help make the modifications affordable.  They can also connect you to others living with MS to share tips and suggestions.

The Society’s website, www.nationalmssociety.org, has an extensive library of resources, including this brochure on adapting your home environment. Can Do MS can also provide ideas through our online resources, including this webinar on “unlocking barriers in your home” that I facilitated with physical therapist Mandy Rohrig.  You can also view the slides of a presentation I co-presented with dietitian Baldwin Sanders on nutrition and kitchen adaptations:  1 Eating Well Eating Easy Take Charge Norfolk2016.  Finally, MoveOverMS and AboveMS have some great ideas to make your kitchen more “MS Friendly.”

Social Security Disability Attorney Response

Jamie Hall, Esq.

Attorney-at-Law

There are multiple ways for a person who becomes disabled before age 18 to qualify for benefits.  First, if the child has had a part-time job, they may be eligible under their own earnings history for Social Security Disability income (SSDI).  For instance, earning only $3800 during two separate years would be sufficient to financially qualify an individual under age 24.  Second, the child may be eligible for SSDI benefits if they have a parent who is receiving Social Security benefits under either a retirement or disability program.  Third, if the family income and assets are low, the child may be able to qualify for benefits under the Supplemental Security Income program (SSI), which pays a much more modest benefit than SSDI.

Notably, the above addresses only financial qualifications; a claimant must also prove medical disability.  Although disability claims on behalf of minors are challenging, they can be successful when significant limitations exist, the treating physicians support the claim, and the individual or attorney presents a well organized claim.  I would recommend consulting with an attorney that specializes in SSDI to determine the qualifying factors in your particular situation.  For more information on these changes, please view this webinar that I co-presented with Can Do MS Programs Consultant Coordinator and clinical psychologist Roz Kalb, as well as this guide from Can Do MS and the National MS Society.

Response by Paula Hardin, MS News Columnist; reprinted with permission from Multiple Sclerosis News Today 

You might think that the Fair Housing Act required multifamily buildings to have elevators, but no, it doesn’t. For example, multifamily dwelling of four units that does not have an elevator is not required to have one. However, the ground floor units must be fully accessible (no steps). Policies like this cut the available housing stock for disabled people in half. How is that FAIR?

For equal access to housing, all housing would have to be accessible, designed to universal design standards. This would benefit everyone, just as the “curb cut effect” helped many people at street crossings.

Would you take an elevator or stairs?

Cost is the primary argument against mandating all multistory residences, including single-family dwellings, to have elevators. However, the cost would decrease with mandatory requirements, vastly enlarging the demand.

Truly fair housing requires all homes that are multistory, and all multifamily multistory dwellings, no exceptions, to have elevators.

Hear me out

Able-bodied people can choose from all available housing, even housing with elevators and universal design features. They can visit any family or friends living in any kind of home. People with multiple sclerosis (MS) often do not have that luxury.

Another feature that able-bodied people can manage, like basement laundry rooms accessible only by stairs, are usually assets for them. Actually, having no in-home laundry facilities has a disproportionate negative impact on people with disabilities and other vulnerable groups.

“Aging in place” would be much more possible with residential elevators. Mandating elevators for future housing would mean everyone could age in place.

Residential elevators cost too much now because the demand is artificially low. This creates a negative feedback loop: People don’t put in residential elevators because they are too expensive, and residential elevators are expensive because there is no demand.

The following quote is from a report by the U.S. Department of Housing and Urban Development, Accessibility of America’s Housing Stock: An Analysis of the 2011 American Housing Survey (AHS).”

“A quarter century later, our analysis of United States (U.S.) housing data suggests that although around a third of housing in the U.S. is potentially modifiable for a person with a mobility disability, currently less than five percent is accessible for individuals with moderate mobility difficulties and less than one percent of housing is accessible for wheelchair users.

The availability of accessible housing is critical to enable people with disabilities to live independent lives with a minimal amount of support. It is also essential to enable people with disabilities to participate in society by visiting the homes of friends and family. Housing that meets the needs of people with disabilities is increasingly important for the U.S. as the population ages.”

Less than 1 percent of housing stock is accessible for wheelchair users.

ADA is not a building code

The ADA responds to civil rights needs. With rugged individualism the pride of the nation, and the sacrosanct nature of private property, some would resist mandatory elevators. Bathrooms are expensive too, but that won’t be a feature eliminated from building requirements any time soon.

We could change that by bringing attention to the advantages of universal design housing at every level of government and pitching it to developers. Maybe even talking to elevator companies about increasing options for residential housing elevators.

Click and see the possibilities

Here’s a video of  a clear tube for one person to stand up in, though that wouldn’t meet our needs with wheelchairs without enlarging it. Visilift, a home elevator manufacturer, has a video of a woman with severe knee problems that made stairs in her home impossible. Their octagonal version at 48 inches square might fit a wheelchair. Being able to fit in a tube with a toddler would be good, too!

Ah-ha, a company called Pneumatic Vacuum Elevators has an elevator that will fit a wheelchair! No surprise that they are located in Florida. Elevator Ready also has elevators for outside access.

It’s not all or nothing

Changing home requirements to at least mandating the space for a potential elevator to be added (used for closets otherwise) would help, but would probably double the cost burden for a buyer with disabilities to install after purchasing.

People with disabilities and others will never have a chance for fair housing unless we persuade municipalities and developers that it will pay off on the primary sale and resale value.

But first, we need to start the discussion!

For information on your rights under the Fair Housing Act and guidance on financial assistance, contact a National MS Society Navigator at 1-800-FIGHT-MS.

*  This article is the copyrighted material of Multiple Sclerosis News Today.  Thank you to Multiple Sclerosis News Today for permission to reprint this article.  

MS Patient and Freelance Writer

Judy Lynn

(This response is reprinted by permission and with gratitude from Multiple Sclerosis News Today.)

When my physiatrist diagnosed my MS “foot drop,” she wrote a prescription for vehicle hand controls. I was both elated and terrified. Could I drive long distances again? Arrive pain-free, able to do a short hike? Could I regain the freedom of knowing I would not have to cancel an outing because I couldn’t drive there? After many months of increasing limitations, I was giddy at the prospect of less pain and more freedom. BUT … What if I couldn’t do it? Maybe I would never get the hang of it … or worse, what if I got in an accident? I kept thinking about the time my grandmother hit the gas instead of the brakes and took out my uncle’s front porch!

I checked in with my State Department of Vocational Rehabilitation (DVR) caseworker (look into yours if you haven’t). DVR, along with the National MS Society, covered the nearly $3,000 for the lesson, certification, and installation because I use my car for work. They assessed my vehicle and my abilities and recommended “mechanical” hand controls. These can be turned off and on so that others can drive the car. (While there are costs to be considered and installation details will be different for each person and each automobile, getting hand controls can be quite easy!)…

I give you this history as a way to set the stage for my adoption of hand controls in my vehicle … a way to say, “If I can do it, believe me, you can too!”

Of minor importance

• No one can see that you are using hand controls. Stop worrying about how it looks!
• Yes, this does give you some “street cred” when using your handicap placard.
• Improves muscle tone of triceps and forearms. (I take my perks where I can!)
• You may need to chat less with your passengers, because new driving skills require greater concentration.
• It’s OK if people think you are rude because you don’t wave back. Really, it’s OK.
• You can probably beat that kid in the Mazda off the line… if you wanted to. Hand controls have some serious pick-up!

Of moderate importance

• Put the car in park, or feet on the floor brake if able, while you exchange cash, ticket, etc., at drive-up windows or machines. (Both brakes always work.)
• Take a drink of your coffee, change the radio station, or adjust windows or heat when you are in cruise control or stopped at a light.
• Use whatever music technology you have. I mastered the car’s Bluetooth and my iPhone music playlists in order to avoid being trapped with crummy radio commercials.
• Buy a water bottle with a pop-up top. No time to screw a cap back on when the light turns green!
• Roll up windows before getting on the freeway. If you forget, just pretend you are a carefree youth until you get cruise control going. Hopefully there aren’t any loose papers in the back seat.
• Park a little farther away from high-pedestrian areas. I’ve come to appreciate those handicap parking spaces that are not right in front of the door!
• Turn signals, or indicators, are tricky. It depends on the placement of your hand controls and how far you have the accelerator pushed down. In the beginning, err on the side of turning it on early. I’m hoping for a voice-activated turn signal one day.

Of major importance

• Master cruise control. It’s your best friend.
• Always use your side mirrors and rear view mirror, and turn to look around you before backing up. I also roll my windows down a little and keep my music off. I used to turn and look over my shoulder while backing up, but this doesn’t work with a hand control.
• Watch your speed. The hand accelerator requires less force than a foot pedal.
• Leave lots of space between you and other cars.
• Don’t be afraid to pull over and regroup. Maybe you need to adjust the heat, turn off that Kenny Loggins song, scratch an itch, blow your nose, or eat a couple of almonds. You may have to pull over to do these things safely.
• Believe in yourself!

It took a few months, but eventually my mechanical hand controls became my new normal. The instructor was right, I’m a natural! And so are you! If you need hand controls but have been afraid to try them, please reconsider. And if you have used them yourself and have some tips for me, please share!

Judy’s two articles on hand controls, as well as other great resources, can be accessed on the Multiple Sclerosis News Today website, https://multiplesclerosisnewstoday.com/).

Physical Therapist
Amanda Rohrig, PT, DPT

Can Do MS Programs Consultant

Serving as a caregiver/support person for someone you love can be a truly joyful blessing that can offer many benefits to both parties. It is also a responsibility that, at times, have heavy tolls- physically, emotionally, and mentally- even though you feel proud of the role you play in your loved one’s life. You may find yourself experiencing a wide range of emotions as you adapt to the day-to day variability of this unpredictable disease. Knowing when to help and how to help when changes occur can be challenging. Despite your questions and concerns, please remember your attention and care make a huge difference!

First, I would recommend having an open conversation with the person for whom you are caring. Confirm that she is experiencing what you are observing. Then, potentially together, consult with her health care team (especially a physician or MS nurse) to determine if there are any appropriate and/or necessary changes that need to occur with the medical management of her MS, as well as a request for a prescription for physical therapy. A consultation with a physical therapist who understands MS can help to identify abilities and areas of improvements. For example, there may be alternative bracing or mobility devices in combination with specific exercises that may be helpful. Often, implementing some key fatigue management strategies or environmental changes can help, too. Most importantly, identifying when to help versus when to empower the person with MS to do an activity or exercise independently is key to strengthening mobility and for both of you to live well with MS.

In conclusion, seek that consultation with a physical therapist to help both of you learn to optimize exercise and mobility. In the meantime, consider education and investigation into some of the online resources from Can Do MS (there are some excellent webinars and articles pertaining to exercise, flexibility, and mobility are available on the CDMS website, www.mscando.org) and the National MS Society (www.nationalmssociety.org). I would encourage you to explore the Stretching for People with MS as well as the Stretching with a Helper for People with MS manuals from the National MS Society. These 2 resources would be appropriate to bring along to a physical therapy session. With the help of a PT, you and your loved one can identify and prioritize those that may be appropriate for your situation. Thank you for your question and best wishes for health, wellness, and happiness!

Finally, join me and renowned psychologist Roz Kalb, Ph.D., at the upcoming Can Do MS webinar on support partners. This free, interactive presentation will offer some great suggestions on the types of questions you are presenting here, and will connect to MS care experts that can provide support, as well as other caregivers going through similar situations. You can register for this webinar, broadcasting live at 8pm Eastern on Tuesday, October 11 (if you cannot attend live, the webinar will be archived and available to stream at your convenience), by completing this brief online form.

Occupational Therapist
Stephanie Nolan, OTR/L
Can Do MS Programs Consultant

Hello Marla! First off, I am sorry to hear that you are struggling with transfers to your toilet. Using the bathroom independently is very important when people are trying their best to maintain their dignity and I hope I can provide some helpful advice. Sadly, it sounds like your wheelchair limits the chances of using a slide board for transfers which would have been my first recommendation. One thing you may consider is finding out if your chair is able to be changed or adjusted. Is it a custom fitted wheelchair or a standard chair? In many states and with many insurances the standard wheelchairs are ‘rent to own’. If that is your case and you do not own it yet, you could consider contacting the company to find a chair that would fit your needs better. If it is a custom fit chair you could also contact the provider of that chair and ask what options they can offer to modify your chair because it no longer accommodates your physical needs.

If neither of those options work, here is another solution: I have helped some people transfer to their toilet forward with a grab bar placed at the back of the toilet. This would require removing lower body clothing prior to the transfer which does take more energy (some women choose to wear skirts and velcro underpants or briefs to make this easier). I know it sounds strange but it works very well for some people as long as there is a little strength in their legs to push up and clothing management isn’t too challenging for you. This is how it would work- Line your chair up to the toilet facing it and get as close as you can with your knees apart. Remember to lock your breaks. Place your feet on either side of the toilet and scoot as far forward in the chair as you can. Take hold of the grab bar behind the toilet. Push up with your legs and pull forward with your arms toward the toilet seat. This will result in you sitting straddled over the toilet facing the back wall. Coming back off the toilet may be more of a challenge depending on your strength and the position of the arm rests on your chair. Reach behind you to the arm rests and push up while you use your legs to push back toward the wheelchair. At this point you will be able to put your clothing back on. I would suggest trying this with a family member who is able to assist the first few times while wearing a gait belt for safety. It will take time and practice to make this type of transfer smooth, but it does work well for some people.

Not seeing your posture, strength, endurance and environment makes it a little more challenging when trying to determine the best/safest option for you, but I sure hope this helps you be more independent at home. If this doesn’t work, I suggest seeking an occupational or physical therapist in your area if it is within your means. An OT or PT, especially ones with a background in MS, could further assess your home setup and your physical needs for other transfer options.

Editor of Emerging Horizons, Author, and Travel Expert
Candy Harrington

Air travel can certainly be fatiguing. Sometimes, the hardest part is just getting to the plane! Here are some tips to make checking-in and getting through security easier, less tiring, and less frustrating. In addition to referring to my tips from the Accessible Travel Basics webinar, which is available to stream from your home computer, here are some ideas to consider when facing the TSA checkpoint:

• You don’t have to take off your shoes if you’re physically unable to do so.
• You are entitled to private screening.
• You can take your liquid meds through the checkpoint (even if you have more than 3 ounces), but you need to inform the screener in advance.
• If you can’t do something during the screening, then just tell the agent you are physically unable to do it.

Also, here are some resources that you should consult when planning your travel. Don’t be afraid to ask questions!

TSA Website
Outlines the screening process for passengers with a disability.
www.tsa.gov/travel/special-procedures

TSA Care Hotline
Call at least 72 hours in advance for airport specific security questions and concerns.
(855) 787-2227

Accessible Travel News
http://emerginghorizons.com/

Bed mobility is often impacted by the type of bed or mattress you have and the amount of access space around the bed.

A suitable bed height would be 18 inches as it is similar to most chair heights. Your height or the height of your mobility device might play a role in what works best for you as moving along an even surface is the most efficient way to transfer. If you need to raise the height of your bed, you can purchase bed frame height extenders at many local stores and on-line. Ensuring you have adequate room around the bed and, most importantly, on the side where you enter and exit, eases transfers. Consider a queen or full sized bed over a king for more space in your room. Remove clutter and excess furniture to improve access to your bed. If it’s only you sleeping in the bed, it’s okay to move the bed closer to the wall to give you greater access on the side you use. Your mattress selection can also impact bed mobility. If your mattress has a pillow top or is a tempur-pedic foam that conforms to your body, it can be more difficult to roll or shift in bed. A plush or firm mattress offers a more stable surface to move on. Sleep number mattresses and adjustable beds allow you to change the firmness or shape of the bed, but can be cost prohibitive for many.

There are adapted devices that aid in moving in, out and around in bed. The key is finding the device that works for your situation. Bed assist bars or transfer poles help when getting in and out of bed, and moving from lying to sitting. Bed pull-up straps or ladders aide in pulling up and moving in bed. These aides come in many different sizes and varieties and can be found in medical supply stores and on-line.

To find a bed and mattress that meet your particular needs, please consult an Occupational Therapist, Physical Therapist, or sleep specialist. Professionals on your health care team are the best resources to find the best solutions to overcome your particular challenges.

For more information, please follow these links to articles on adapting to your home with multiple sclerosis by the National MS Society and the Department of Veterans Affairs:

http://tinyurl.com/AdaptingYourHomeEnvironment

http://tinyurl.com/SelectingMSMattress

Beth Bullard, OTR
Occupational Therapist & Can Do MS Programs Consultant

Occupational Therapist Response
Linda Walls, OTR
Can Do MS Programs Consultant

I would like to share a couple of thoughts regarding your dilemma with your wheelchair lift.

First, I would like to suggest that the extreme temperature of -20 degrees can cause many mechanical devices to not work. In these temperatures, the lift may not work, but the lift is not damaged. Once the temperatures rise, the lift will probably resume working. If you feel you still have concerns, an inspection from a company that installs wheelchair lifts may ease your fears. Don’t let one negative experience influence your confidence in a lift which has probably worked for you many other times.

Second, I think you should feel positive about your ability to use your community resources. Your community volunteer fire department is an appropriate resource for you to call upon in such an extreme situation when temperatures are that low. Follow up with the volunteer fire department by sending a thank you card, or even visiting them in the spring and bringing them a basket of cookies. They will appreciate your thoughtfulness and gratitude. This will then help you to build a relationship with the volunteer fire department should you need them again.

A final thought may be for you to look at this situation as a motivator to explore other mobility options that may be available in your area. Talk with the MS chapter in your area, if they have suggestions for mobility for people with power wheelchairs. You can also contact the local chapter for people who have suffered a spinal cord injury and are in power wheelchairs.

Most important is that you do not allow this unusual situation stop you from being active! It is important to have your independence and ability to get out of your home and access your community.

Physical Therapist Response
Patty Bobryk, PT
Can Do MS Programs Consultant

There are many styles of braces (also known as ankle-foot orthoses – AFO’s) that are utilized for foot drop. The main purpose of the brace is to hold the foot and ankle approximately at a 90 degree angle to the leg so that as you swing your leg through to take a step and your toes and/or foot do not drag. A properly prescribed and fitted AFO can make a huge difference in your walking pattern, keeping the mechanics of your walking as close to normal as possible and also decreasing the amount of energy it takes to walk. Without an AFO, many people are at high risk for falling because of their foot drop, or they develop painful musculoskeletal problems that occur because of poor body mechanics.

The best way to obtain an AFO is to ask your physician to refer you to a physical therapist who has experience in gait analysis and bracing. If you physician does not know a therapist in your region, contact your local chapter of the National MS Society for a referral. Your walking pattern should be thoroughly assessed and recommendations should be made by the therapist on the type of brace that is most appropriate. Ideally, the orthotist (the person who fabricates the brace) should be included in the analysis and your team (your physical therapist, orthotist and YOU) should make decisions on what brace is right for you.

Braces can be custom-made which can provide the necessary support and can be tailored to your needs. They are typically worn in a shoe that ties because you want the shoe and the brace to act as one unit to provide the support you need. Having said that and living in Florida myself, I understand the heat factor when it comes to close toed shoes. With some strict parameters, I have worked with my patients to use their brace in a sturdy sandal (the sandal MUST have a back strap and hold your brace in it, otherwise the benefit of the brace is lost).
Another option to consider is the technology of functional electrical stimulation coupled with the walking cycle. As you take a step, a small electrical current causes a contraction in the muscle that lifts your foot so it does not catch as you swing through. The two companies that manufacture these units are Bioness and WalkAide. You can learn more about them on their websites (www.bioness.com and www.walkaide.com). The units are expensive and not all insurance companies provide coverage for them. You can work with your therapist to do a trial to see if this is something that you may be a candidate for.

I agree that you need to have a product that works for you. You may have to advocate for yourself and contact your insurance company to discuss your particular situation and see what can be done to obtain the appropriate brace for you.

Occupational Therapist Response
Laura Kingston, OTR/L
Can Do MS Programs Consultant

Thank you for your question, especially as we head into wintertime. I am sure many people are in the same situation if they live in cold weather climates!

I would first recommend trying to talk to your apartment manager, friend or family member to see if they could do a better job salting the pathway and shoveling the snow around the entry point to your apartment door. They should be able to accommodate this request. I would also make sure your mode of transportation (car, shuttle, etc.) is as close to your apartment door as possible to decrease the distance you have to go. If you do have someone picking you up for your appointments, I would consider asking them to come up to your door in order to assist you during the inclement weather to prevent a fall.

Footwear is particularly important in the winter. Chose a pair of shoes that gives you the best support and traction when out in the elements. I have recommended to clients that they consider purchasing metal cleats that either are built into your shoes or that can easily attach to your shoes to help prevent slipping.

As far as using a walker outside, I would make sure that the posts have walker ski glides on them to allow for easy control over your walker vs. standard posts with rubber caps on the ends. You can order these from any medical supply store in your area or from a website such as Amazon.

Lastly, I would recommend a home safety evaluation which your MD could order to have a Physical Therapist come out to your home and make further recommendations to increase your safety and confidence.

I hope these tips help make your winter more manageable.

Psychologist Answer
Peggy Crawford, PhD
Can Do MS Programs Consultant

Jack, thank you for your question! It sounds like you are dealing with several big issues–fatigue, changes in your mood and stress all at the same time. We know that energy level, mood and stress can each affect the other making for complicated symptoms. Just as increased fatigue can negatively affect your mood and your ability to cope with stress, reduced fatigue can result in better mood and attitude and more effective coping. Because it can be difficult and sometimes impossible to sort out what is causing what, taking some action and experimenting with a change in one area can be helpful.

For example, addressing your fatigue could be a good starting point. You have a demanding schedule that includes a significant commute and long work day that could wear down someone without MS. You might consider options for getting to work such as carpooling or public transportation, changing your work hours even by 30 to 60 minutes to avoid rush hour, and/or working 4 slightly longer days with a day off in the middle of the week. Sometimes, it can be helpful to have even a brief (15 to 20 minute) period of down time when you first arrive home from work to make the transition from work to home life. Simplifying chores/tasks at home such as meal preparation, laundry and cleaning can reduce what you describe as not feeling motivated. For example, you can plan meals for the week so decisions don’t have to be made at the end of a long day, use a crockpot, and cook larger amounts of a favorite food and freezing leftovers for busy days. Setting realistic and attainable goals are essential ingredients to reducing feelings of being overwhelmed. Some people do this by breaking an activity into smaller parts and spreading them out over one or several days. Throwing a load of clothes into the washer before you leave for work and then putting into the dryer at the end of the day is an example of this strategy. Another option is to set a time limit and do what you can in 30 minutes.

In addition to having effective strategies for getting things done and feeling good about your accomplishments, it is important to have things to look forward to, e.g., phone call with friend, a movie or show (preferably something funny) you’ve wanted to watch, a new book you’ve been meaning to read, or a special dinner you enjoy. Getting a good night’s sleep can help you to start off the day with your battery charged. If MS symptoms are interrupting your sleep, talk with your MS provider. If you have trouble falling asleep because you are not able to turn off your mind and are thinking about all the things you need to do the next day, write them down before you get into bed.

It’s likely that if you make positive changes in one area, other symptoms will also get better. If after making some changes to better manage your fatigue, mood and stress level, your attitude and level of motivation do not improve, it might be helpful to talk with a mental health professional whom can assist you in determining if you are depressed and/or unusually anxious. Problems with mood are very treatable. If your fatigue does not improve, it might be helpful to meet with an occupational therapist especially one who has experience working with people who have MS to generate additional strategies for managing your fatigue.

Remember, you deserve to feel better than this!

Insurance Sales Representative
Misty
Progressive Insurance, Denver, CO

The answer to your question depends on where the van will be registered because every state has different laws concerning insurance coverage. In Colorado, you would need your own coverage for the van even if you were never the driver. However, there is special “helper” coverage that is very affordable. Because you are unlicensed, you could qualify for this policy, but you need to specifically name the “helpers” who will be driving the van. There is no limit in Colorado to the number of helpers you name, but, generally speaking, the more drivers you have, the more expensive the premiums. The cost of this insurance will be based on several factors, including the driving history of your helpers and the specifics related to the van itself. Therefore, an insurance company could not give you an accurate quote unless they know the details of the van. Once you have more information, call Progressive Insurance and we’ll take good care of you!

Occupational Therapist Response
Anna Cotton, OT
Can Do MS Programs Consultant

Hello!

Thank you for your question. You are smart to think about making changes to your home and planning for the future now. Many people wait until a major event happens and then wish they had made changes to their home sooner. I recommend starting now so you can put more thought and time into your modifications and be able to enjoy a safer, more comfortable home now and into the future.

I suggest you think about which activities in your home are the most difficult and use that information to begin prioritizing projects. For example, do you have trouble safely getting into your home, getting around in your bathroom or preparing meals in your kitchen? Are you using a mobility aid such as a walker or wheelchair and not able to access parts of your home because of stairs or narrow doorways? Also, consider what your budget is and what help you have to make home modifications. From this information you can make a plan and start making changes.

You mentioned balance issues in your question, so I’ll provide you some examples of small and big changes you can make to create a safer environment.

• Make sure your lighting is adequate in all areas of your home including entrances, hallways, bathrooms and the kitchen. If it’s not, you can simply install higher wattage light bulbs and/or add night-lights in areas of low light.
• Remove tripping hazards such as throw rugs and cords off the floor.
• Widen doorways to be able to fit a walker or wheelchair through. It can be especially common in older homes for bathroom doors to be too narrow for a mobility aid, and this creates a big fall risk.
• Consider making large changes to allow for all your essential living space to be on one level including a full bathroom, bedroom, kitchen and laundry area.

As you can see, creating a more accessible home can run the gamut of small and large changes. As you begin to think about the modifications you need to make, don’t hesitate to reach out for help. An occupational therapist can assess your home and give you recommendations. You can ask your physician for a referral. Additionally, look into community-based groups, such as Rebuilding Together (http://www.togetherwetransform.org), whose volunteers help repair and modify homes for those who can’t afford to do so. I applaud you for being proactive and starting the process now. Beginning with small changes now will make your home safer and more enjoyable for years to come.

Occupational Therapist Response
Ann Mullinix, OTR/L
Can Do MS Programs Consultant

First, I want to commend you for your motivation and determination to enhance your independence! I know you are working very hard to care for your family and keep up with the demands of life. It is not easy, and your health is a priority, which has become more consuming over the past 2 ½ years.

Know that yes, there are ways to modify your home environment to enhance your independence and there are resources in the community to assist.

Your first step will be to contact a MS Navigator through the National MS Society (1-800-582-5296). An application will be sent to you to fill out to receive financial assistance/start the process for a home evaluation by a medical professional, such as an occupational or physical therapist, pending on who is available where you live. A home evaluation will give you the specific recommendations you are looking for to make your home handicap accessible.

Modifications that are made to homes include structural adaptations such as increasing width of doorways for accessibility; railings, ramps, or stair glides, if stairs are a challenge. More minor changes may include obtaining durable medical equipment such as grab bars in the bathroom or shower chairs; bed rails and commodes. Other examples of easy modifications include changing doorknobs to levers, and hinges on doors to swing clear hinges. Some modifications don’t require purchasing or installing anything, but only simple re-arrangement of where frequently used items are located for easier, energy saving convenience. The MS Navigator will also be able to assist you will obtaining items needed, and know there is grant money for medical equipment, daily living aides, and even household chores!

There are many ways a home can be modified, from simple to more complex, and a health care professional’s evaluation will give you the specific direction you need to take. With the right set up, you can do it and like you said Maria, you can “take your life back.”

Physical Therapist Response
Mandy Rohrig, DPT
Can Do MS Programs Consultant

Thank you for your question. I do hope I can provide you and your husband some guidance.

If your husband receives Social Security Disability benefits and has Medicare as his primary health insurance, he should be eligible for a power wheelchair with Medicare helping to cover the cost. The steps he should take to access this benefit are as follows:

1. Contact a physical therapist who is familiar with multiple sclerosis and/or power wheelchair assessment and fitting. The physical therapist can help you connect with a wheelchair vendor that can show you the many options available to you in terms of power mobility. A key component for Medicare, or any insurance for that matter, to cover the expenses for a power wheelchair is justification of need. Documentation from the physical therapist and the physician demonstrates the need for a power wheelchair. The physical therapist, wheelchair vendor and physician should all be familiar with the necessary language.
2. Have a conversation with the health care team about the anticipated uses of the power wheelchair. Will the wheelchair be used in the home, community, or both? Will you be able to transport the wheelchair in your current vehicle or will you need to consider a van? Will you be able to access your home (entrance, doorways, etc) with the power wheelchair? These are just a few questions to consider. I would highly recommend having additional conversations with the wheelchair vendor and physical therapist regarding the anticipated use.
3. Investigate, trial, and select the power wheelchair that best suits you. Then, request a prescription from the neurologist for a power wheelchair. The physical therapist and the wheelchair vendor will help define what needs to be included in the prescription.

I wish you and you husband the best as you start on this journey. I do hope the wheelchair you select brings improved mobility and great joy to your lives.

Occupational Therapist Response
Juliann Hanson-Zlatev, OTR
Can Do MS Programs Consultant

This is a good question! This can be a distressing turn of events, but the good news is that there are a variety of ways to adjust and accommodate limited handwriting.

An important aspect of making any big change in life is recognizing that there will need to be an adjustment period where the “new” form of writing will improve to the individual’s needs and satisfaction. In other words, it might take a little time and practice to come “up to speed” on a new system.

If your sister enjoys technological systems (computers, iphones, etc), then she will be in good shape to shift to technology to answer her writing/scheduling needs. Even if she is not, Apple products make using their systems very easy, and you can get a lot of help that is simple to come by to make the system work well. (You can trust me on this from experience!!)

If technology is not your sister’s favorite tool, then there are a number of handwriting assists that she could try to see if they smooth out her coordination in order to make writing useful again.

1) Technology. I have a client who is blind and uses an iphone with voice activation to write and send emails, texts, schedule and make calls. As you can imagine, this includes limited interaction with the keyboard as well. A computer can be used with voice recognition software also.

2) Sometimes keyboarding is actually easier than writing because upper arms can be stabilized while typing, and at that point, I recommend switching to a computer that interfaces with your phone to schedule, write notes, etc. since the information can be easily shared between devices. Again, I am an Apple fan, simply because their products are simple and easy to use, but the other businesses do this well, too! She may want to see if using her finger on a Smartphone is easier vs. using a stylus. I would encourage her to try both to see what works best for her.

3) Hand-writing Tools: There are a number of products out on the market to help with handwriting, and this is best decided by use. Your sister may wish to visit a local outpatient OT to see what they have available or to discuss her situation specifically for specific recommendations. A few of the choices:

1- pencil/pen grips
2- weighted pens
3- easy glide writer
4- ergowriter
5- klick pencil holder
6- ring pens
7- magnetic pens
8- claw pen
9- wrist hold down

As you can see, there a multitude of choices, some of which may be ideal for your sister and some of this would not be ideal. If she decided to pursue a handwriting aide or tool, I would recommend a visit to an occupational therapist to exercise her options. Sometimes using a slanted writing board can be helpful, in addition to coordination and strengthening exercises!

I had a client whose handwriting became very challenging, but after a short rehab program involving coordination, strengthening and stretching, she was able to write again to her satisfaction.

I hope this answer has been helpful for you and I thank you for asking a good question, since it is usually a disruption of the “little” events in our life that cause us considerable frustration!