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Financial Planning for Multiple Sclerosis

“I understand how hard it is to talk to people about MS. You don’t want pity or random advice.”
–Teri Garr

“Stop shaking your head when you sing. You’re trying too hard.”

That was what my wife’s voice teacher told her one day during a voice lesson. She was a little confused. She wasn’t straining. She wasn’t shaking her head.

At a concert the next spring, my mother-in-law noticed it too. She asked if I’d seen my wife’s head shaking. I hadn’t.

I didn’t notice it until several months later. I think I had noticed it before then, but Monkey Brain had jumped in, ever so helpfully, and told me she shook her head when she was reading because she was concentrating so hard. But, then, it dawned on even me.

I felt guilty about not noticing it before. It’s funny how when you see something every day, you can sometimes become blind to it. There is a psychological phenomenon for this effect called change blindness. According to Drs. Daniel J. Simons and Daniel T. Levin, our brains really don’t have the capacity to remember everything that has ever happened to us. Even though we think we can remember, our minds are shrinking our memories to fit our limited capacity, giving us heuristics of what happened. It’s like a digital photograph. When you take a photo, it’s impossible for the camera to have enough memory to capture every detail, so it compresses the image to give us a representation of what we saw. Change blindness is the same way, and we can often overlook several changes before we realize what’s happening. It’s the excuse I can conveniently give for not noticing a haircut, particularly since I shave my own head!

When even I noticed the head shaking, my wife decided to go get it checked out. She went to her primary care physician, who did a basic neurological test on her and then referred her to an actual neurologist for more testing. The neurologist sent my wife to get a MRI. The sign on the neurologist’s office said “If results are negative, we will not contact you. If further follow-up is necessary, the doctor will contact you.”

A week passed by. We thought that we weren’t going to hear from the office and could go on our merry ways.

My wife was back in Charlottesville for work when the neurologist’s office called and left her a message. The message said that she had what appeared to be lesions in her occipital lobes and that they were indicative of multiple sclerosis, but they weren’t definitive, so they wanted my wife to get a spinal tap.

Even writing that paragraph still makes my stomach drop through the floor.

It would be a couple of weeks before she could get a spinal tap scheduled and then another couple of weeks before we would get the results, so we’d have to wait about a month between hearing that she possibly had MS and getting a definitive diagnosis.

Neither one of us knew much about multiple sclerosis and didn’t know what getting a definitive diagnosis of MS would mean for us. There were some great sites which helped a lot, which I’ve listed at the end of the article. Getting information about what a life with MS means really helped us because we were otherwise dealing with the unknown. If you’re facing a potential MS diagnosis, spend a night or two reading all of the articles in those websites. They will really help you to come to grips with the battle you face.

Even though I’m a financial planner, I was, admittedly, at a loss for how to think about approaching the potential of facing a life as a family dealing with multiple sclerosis. Very little good, useful information is out there for how your life changes financially when you have to battle MS along with the rest of life’s fights.

At that point, I vowed, regardless of the outcome of my wife’s diagnosis, to help people who face what we faced, and to give them guidance on how to plan for their futures.

Every doctor will tell you that each case of MS is different. They know generally how the disease progresses, but not the specific path that an individual’s case will take. For that reason, it’s really impossible to provide a one size fits all template for financial planning for multiple sclerosis. I can, though, provide you with foundational information to build up your own knowledge so that when you plan and meet with a planner, you’re armed with the right information.

We got my wife in for a spinal tap. For those of you who haven’t had a spinal tap and are facing one, according to my wife, it wasn’t bad at all. She was a little sore for the next couple of days, but was VERY diligent about appropriately rehydrating to avoid the spinal headaches. She is prone to migraines, so the spinal headaches were our biggest worry, but because she actually did the 24 hours of bed rest that the doctor ordered (and took advantage of me waiting on her hand and foot!) and hydrated like crazy, she avoided them.

A couple of weeks later, we had the follow up appointment with the neurologist. We were fortunate. The neurologist told my wife that it was a benign essential tremor, which responds very well to medication. Apparently the lesions represented scar tissue caused by a skiing accident and were no cause for worry.

We were lucky. About 100,000 people in the United States aren’t so lucky.

While I’m not going to abandon Monkey Brain (after all, he lives inside of everyone’s head!), you will start seeing me add articles about financial planning for multiple sclerosis.

Here are some of the topics you can expect me to cover on this website. As I publish this information, I’ll make the topics clickable so that you can go directly to them.

Just as there is no cure for MS, there is no magic bullet which will make the costs of dealing with the disease go away. However, both are manageable with smart planning and early intervention. As people with MS can attest, it’s just one more obstacle in life, but it teaches you resilience, bravery, and appreciation.

Resources:

By

Jason Hull, CFP®, was the co-founder of Broadtree Partners, a firm that acquires $1-5MM EBITDA companies. He also was the co-founder of open source search consultancy OpenSource Connections, a premier Solr and ElasticSearch firm. He and his wife FIREd (financial independence retire early) at 46 and 45, respectively. He has a BS from the United States Military Academy at West Point and a MBA from the University of Virginia Darden Graduate School of Business.

You can read more about him in the About Page.

11 replies on “Financial Planning for Multiple Sclerosis”

I am so-so-so very glad to hear the Mrs. is okay and she doesn’t have MS. My heart goes out to both of you.

Also, I think any person facing an illness or disease will benefit from your future posts. After all, anytime you’re facing something like this your financial plans for the future will dramatically change.

I was whooping and hollering once we got into the car. I think I was more relieved than she was! I was reminded of the scene in Major League where they say don’t mention making the team in the locker room because there are people in there who didn’t make the team. I didn’t want to react in the neurologist’s office because there are some who aren’t as fortunate as us.

If there is one piece of advice I can give to people, it’s this:

Don't Panic Badge

Gripping article, Jason. I was rooting for her the whole time! Actually, before I got the the relieving part, I wondered to myself if she had essential tremor. My Father and Grandmother both have(/had) it, and it mostly effects their hands. Mostly they just swear more when they have to sign a check ro a restaurant bill. Relieved that the news turned out well for you two.

Thanks, John! The doctor and neurologist both thought it was an essential tremor, but it’s part of due diligence to eliminate MS as a cause. We’re fortunate in that the drug that she’s taking controls the tremors to about a 99% level. You’d never know unless she told you or read this article!

I curse enough to make up for both of us.

Oh, I think “panic” is a perfectly rational response to this situation. I guess the good news is that this experience clarifies your priorities and makes you a stronger team when the next panic opportunity pops up.

“Apparently the lesions represented scar tissue caused by a skiing accident and were no cause for worry.” — Yikes!

The first 24-48 hours are pretty close to being frozen in place by fear, at least for me. One important action for people who face that, particularly in those first few days of shock, is taking no action until you can clarify the situation more.

We definitely had some discussions about what we wanted to concentrate on if the diagnosis showed MS. Part of the problem with MS is that, until you get a diagnosis (and some symptoms), you don’t really know what brand of it you’re facing. Some versions of MS progress much more quickly than others. We certainly contemplated our “proceed as if (almost) normal” line and “maximize current living capabilities” line.

It is counterintuitive that such a diagnosis about brain lesions could be viewed so positively, huh?

Reading this and having flashbacks to five years ago when my wife was diagnosed with MS. It changed everything for us – we planned to travel before we started a family but we scrapped that idea and decided to have kids right away. Now my wife stays home full time to look after our girls and we’ve adapted to single-income living. Thankfully, her MS symptoms are manageable right now and she’s avoided taking any medication for it (so far).

I’m so glad to hear your wife is okay.

All the best!

Hey, Robb – Thanks for sharing your story. In the U.S., people may or may not be fans of Obamacare (or the Affordable Care Act), but the one benefit it offers for people who have MS is that they cannot be denied coverage because of MS. When we first went through this several months ago, we weren’t sure whether or not the Supreme Court would uphold the ACA, which could have made health coverage potentially quite expensive. I’m glad that your wife is doing well with her MS; for some people, from what I read, you’d never know they had it, and they live full and productive lives. I hope that continues to be your story, and the Engens will be in our thoughts.

Reading this and having flashbacks to five years ago when my wife was diagnosed with MS. It changed everything for us – we planned to travel before we started a family but we scrapped that idea and decided to have kids right away. Now my wife stays home full time to look after our girls and we’ve adapted to single-income living. Thankfully, her MS symptoms are manageable right now and she’s avoided taking any medication for it (so far).

I’m so glad to hear your wife is okay.

All the best!

My wife was officially diagnosed with MS a couple of years ago. The medication costs alone are in excess of $33,000 a year without insurance (and that’s the cheap one) , so it’s extremely important that at least one of us works for insurance alone.

We had suspected MS a while ago when she had a optic neuritis episode a when she was in her 20s. Thankfully she has a very mild case (so far), and she has only had a total of three episodes including the optic neuritis.

You’re one of the cases where Obamacare might help. Obviously, if you’re under a group plan with an employer, then you’re covered, but if you get in the position where you need the insurance, then at least she can’t be denied for the previously existing condition. Hopefully it’s a very mild case and you’d almost never know that she has it.

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