Preparing for your retirement takes a lot of thought. There are many things to consider. Will you have enough money to afford your current lifestyle? Can your home accommodate any future disability? If not, are you able to move?

When you live with an unpredictable disease like multiple sclerosis (MS), retirement planning takes on a whole different dimension. For one thing, it’s hard to foresee when you’ll have to stop working. You also don’t know the exact kinds of special accommodations you’ll need to stay independent in the future.

The good news is that retirement is a reality for most people with MS. Treatment advances have improved to the point where most people with MS can live almost as long as people without MS.

Now is a good time to take stock of your health, living, and financial situations. Start to think about how you plan to get by once you’re no longer receiving a paycheck.

1. Assess your health

The course of MS can be hard to predict. You might be disability-free for the rest of your life, or you could have trouble getting around. Use your current health to help anticipate what your future might look like.

Is your medication managing your symptoms? How quickly is your disease progressing? Ask your doctor to give you a loose idea of what you might expect later in life based on the type of MS you have, and how the disease typically progresses.

2. Imagine where you want to live

Where do you see yourself during your golden years? Think about where you’d like to live once you retire. Do you plan to stay in your own home? If so, you may need to make some accommodations to help you get around with less mobility.

Do you want to retire somewhere with a resort-like feel, like a lake house or oceanfront condo? If so, will any of your loved ones be nearby to help care for you should you need assistance?

3. Get your financial options in a row

You’ll have more flexibility during your retirement years if you’ve saved up enough money. Maximize your savings potential. Set aside money for everyday needs and unexpected expenses. Then, put away a good chunk of money for the future.

Check on any investment portfolio you may have. Make sure you’re maxing out your retirement investments with each paycheck, so you’ll build up savings over time. Periodically reevaluate your current investments to make sure you have the right risk-reward balance.

You can save more when you spend less. Cut back on nonessentials and luxury items. See if you qualify for any benefits or government programs like Medicare, Medicaid, VA benefits, Supplemental Security Income, and tax deductions. These can help you save money.

4. Keep good records

To qualify for certain medical and financial benefits, you’ll need to provide records. Keep all of these important papers in one, easy-to-find binder:

  • birth certificate
  • checking and savings account information
  • credit card statements
  • employee benefits
  • insurance policies (disability, health, life, long-term care)
  • investment account information
  • loans
  • marriage certificate
  • mortgage
  • power of attorney and advance directives
  • Social Security card
  • tax returns
  • titles (car, house, etc.)
  • will

Also, keep a record of your medical expenses and insurance coverage.

5. Hire an advisor

If you’re not sure how to manage your money for retirement, get expert financial planning advice. It’s good to have one or more of these advisors on speed dial:

  • accountant
  • attorney
  • financial planner
  • insurance agent
  • investment advisor

5. Get on a budget

A budget can help you stretch your money as far as it will need to go in retirement. Figure out what you have now, including your salary, savings, and investments. Look at how much you owe. Figure out your monthly expenses and consider how much you’ll need once you retire.

Based on those numbers, create a budget that will allow you to save enough for retirement. A financial planner or accountant can help if you’re not good with numbers.

Also, estimate for the future. Envision what types of products and services you might need to help manage your MS. These could include a home nursing aide, a stair lift, or a bathtub remodel. Set aside money to cover these potential expenses.

6. Prepare for a premature retirement

Sometimes your condition will make it impossible for you to keep working. After two decades with MS, about half of people are no longer employed, according to a study in PLoS One.

Losing your job can really cut into your savings. Before you quit, see if your company will make some accommodations to help you stay.

Under the Americans with Disabilities Act, your employer may be required to make adjustments to your role so you’re still able to do your job. This can include changing or cutting down your hours or shifting you to a less physical job. You also have the option of using family and medical leave time or going on disability, rather than quitting altogether.

7. Consider your future care needs

Thanks to improved MS treatments, disability is less of a threat today than it was in the past. Still, you have to prepare for the possibility that you may not be able to get around as easily in the future.

Think about what home accommodations you might need, and how much they’ll cost. Widening doorways, adding wheelchair ramps, installing a roll-in shower, and lowering countertops are a few of the adjustments you might consider.

Also look into a variety of care options — from hiring a nurse to moving into a long-term care facility. Find out what your insurance covers, and what you’ll be responsible for paying out of pocket.

Takeaway

You never know what the future will bring when you have MS. But it’s always a good idea to plan ahead.

Start by going over your current financial situation. See what you have already saved, and how much money you think you’ll need for the future.

Take advantage of every program and benefit that’s available to you. If you’re not sure where to start, ask a financial planner or other advisor to guide you through the process.