Back in 1997, when I was first officially diagnosed with multiple sclerosis (MS), I never thought I’d need a list of helpful resources for managing the condition. I felt fine enough to believe that an obvious disability was not in my future — that I’d exercise and eat well, and I’d stay healthy because of my will.
But after living with MS for 30 years now, I realize that presumed reality was naive. I wish when I was a senior in college when I first heard, from a doctor, the words “possibly MS,” that I’d made some decisions and taken the heads-up as a life lesson. However, hindsight isn’t particularly helpful as I continue navigating MS decades later. I do feel that I can help people who are new to the condition, though.
To that end, I have come up with a list of must-haves and must-dos that I wish I’d understood back then. I share them with you and would love your feedback about what you do and wish you had done to make life with MS easier and your prospective future more manageable. Leave a comment and let me know.
At the first opportunity to sign up for long-term care insurance without a medical exam, I should have done so. I wish family members and doctors had told me to sign up. I am managing my 94-year-old mother’s care right now, and the cost of a nursing home is eating through her savings. She never thought she’d live this long. I thought I’d care for her because the MS would not have advanced. Wrong. Not that you should always assume the worst, but it’s smart to be careful.
I did eventually sign up for long-term care insurance, but I was too naive to realize what it was and that I was paying for it, so when my job ended, I didn’t know enough to keep it going.
I’ve seen a psychologist on and off at different points in my adult life. When my issues were more commonplace, like juggling work and family, I did not see much benefit. But as my MS progressed and my responsibilities shifted (including managing care for my mother and brother, who was recently diagnosed with MS), I needed someone to help me manage anxiety, guilt, despair, and even hope. Which brings me to …
I have always tried to take as few pills as possible, and there was no need for an antidepressant as long as my MS was not visible. But when my feet faltered, the possibility of a decline added to the stress of work and family and house and life, so I understood the need to medicate. Just to help with sanity in the face of juggling a lot, including working to treat MS.
An advocate could be a family member, spouse, friend — you decide. But there is a lot of information to absorb and give, at the doctor’s especially. You decide how present they should be.
For example, does your advocate go to every neurology appointment with you, do you call them if you go to the emergency room? A friend of mine had breast cancer, and another friend created a binder for her with the names and numbers of her providers, the treatment plan proposed and finally used, prognosis information, medication to take, and more. The breast cancer survivor has the binder, but my other friend checks in regularly.
Regarding my MS journey, I’ve forgotten a lot of what has happened over the years — relapses, steroid treatments, disease-modifying therapies, and common symptoms. Making a binder to share with my advocate is on my list. One last thing — every time I go to the doctor, I feel better. So when he tests my reflexes and strength, I tend to perform better. When I bring my husband, he can say how I am day-to-day. It helps the doctor zero in on the most helpful treatment.
When I was first diagnosed, I went swimming two to three times a week. Then that got tough to manage, so I walked or went to the gym. Once kids arrived, I stopped, figuring that running after them was exercise enough. But it wasn’t.
A trainer or physical therapist sees where you are weak and helps you target those spots. It also helps to talk to someone when you are feeling a little less than optimal in the face of disease progression. Insurance often pays for some or all of it, and it’s super important to keep it consistent. I’ve also seen an occupational therapist, and she was terrific. She gave me helpful exercises to strengthen my hands and fingers and also work on my dexterity to help improve my quality of life.
We moved into a new house a few years ago that had only one story. It was one of the hardest things I’ve ever done (beating childbirth and my MS diagnosis). I still question whether I jumped the gun, because the stairs in our previous house kept me moving, and the trauma of moving had an impact on my mobility. That said, I see the wisdom of having an architect or physical therapist look at our new place and help us determine where bars might come in handy, if we need toilets with higher seats, and what could make the kitchen more weak leg-friendly, among other issues. Right now, I don’t do what I can’t do easily. And that seems like a self-defeating approach.
I think we’d all benefit from each others’ thoughts, recommendations, and maybe sources. This is stuff we should be thinking about with or without MS, but it’s most relevant to those of us living with a chronic illness.