“I understand how hard it is to talk to people about MS. You don’t want pity or random advice.”
“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.
- Getting over the initial shock and drawing up your first plan
- How MS affects your biggest asset – your ability to earn income
- MS and health insurance
- MS and long-term care insurance
- MS and life insurance
- MS and estate planning
- …and much more
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.
- The National Multiple Sclerosis Society
- The Mayo Clinic’s Multiple Sclerosis site
- The WebMD Multiple Sclerosis Center