Financial Planning With MS

Imagine being new to a city, new to your career, settled into your apartment, under 30 and ready to take on the world. After work, you meet friends for dinner, then head to a rooftop overlooking the scenery. Life feels open. Expansive. Normal. 

Now imagine waking up the next morning feeling as if a 16-wheel truck has parked on your feet. You try to move, inching out of bed, but the sheets brushing your legs feel like sandpaper. You tap your feet. Then your leg. Nothing. Maybe you’re still half asleep, you tell yourself. Your grandmother’s voice echoes: You slept wrong — change your pillows. 

If only “sleeping wrong” and changing your pillows were the panacea to our MS maladies. 

You have MS. That is the diagnosis. And at that moment, whether you realize it or not, your life begins to shift. And whether you have been diagnosed at age 25, 35, 45, or 55, financial planning is something you should seriously consider. 

I was diagnosed in 2000. Over the years, one of the most stabilizing things I have learned is this: get your financial house in order early, even when you feel well.

Start with a Clear Financial Snapshot

Begin by making a comprehensive list of all your accounts: 

• Checking 

• Savings 

• Retirement accounts 

• IRA or investment accounts 

• Existing insurance policies 

Know where everything lives. Write it down, and keep it updated and accessible. 

Build Your Financial Team

Seek guidance from a financial planner. This could be: 

• Someone you trust at your bank 

• A vetted professional financial planner 

• A knowledgeable family member or trusted advisor 

You do not want to navigate long-term financial decisions in isolation. 

Understand Your Workplace Protections

If you are working, schedule time with a trusted HR representative and ask detailed questions. Do not assume you understand your benefits. 

Review: 

• FMLA eligibility and protections 

• Workplace accommodations 

• Short-term disability insurance 

• Long-term disability insurance 

• Options to increase your disability coverage percentage 

Many people do not realize some employers allow you to “buy up” disability coverage, for example, increasing income replacement from roughly 60–66% to closer to 80%. That difference matters if you ever need it. I learned this the hard way; no one explained it to me when I first went out on short-term disability.

Run the “What-If” Scenarios

Even if you feel great right now, pause and ask: 

• What if my income drops to disability pay? 

• Can I cover my monthly expenses at 66% of my salary? 

• Do I support children, parents, or other family members? 

• Am I single or partnered? 

• Who depends on my income stability? 

Your budget should reflect your real life, not your best-case scenario. 

Put Legal Protections in Place

Financial planning with MS is not just about money. It is also about protecting your decision-making. 

Consider: 

• A will 

• Advance directive 

• Power of attorney 

• Trust (if appropriate) 

• Representative payee or financial designee 

Even though significant incapacity is not the typical course for many people with MS, planning ahead reduces panic and protects your wishes. Get documents in writing. Have them properly executed. Notarize what needs to be notarized.

Plan Early Even When You Feel Well

This part is important. 

Even if you look great.
Even if you feel strong.
Even if your MS feels quiet. 

Plan early. MS is unpredictable. Thoughtful preparation today creates options and peace of mind one year, five years, and ten years down the line. Be proactive because it places you in a position where you can steer the ship. There is nothing worse than being forced to react to a sudden change in income when you could have prepared and positioned yourself ahead of time. MS is unpredictable but your financial foundation does not have to be. MS may write part of the story but with preparation, you still hold the pen.