By Marcie Kim
When I look back on our journey with MS, I can’t help but cringe at some of the major life decisions we made based on really bad guidance from the medical community. We had NO CLUE what we were in for, despite conducting extensive research, meeting with neurologists, GPs and even a genetics counselor. Surely they weren’t lying to us? But I look back at the pollyanna nonsense they told us – and I scratch my head. I used to naively imagine my husband in a wheelchair – decades in our future, of course – and I’d think how sad that would be if he was among the 1 in 4 (as we were told) people with MS who someday need a wheelchair. The medical community talked about mobility almost exclusively – everything was about walking and not walking and balance! Oh, the discussions we had about balance. We quickly glossed over references to incontinence and pain. No one mentioned cognitive decline in any of the research we did online, the books we read, or in the meetings with medical specialists. Most still minimize the incidence of dementia, casually cautioning about a possible ‘lack of focus’. Oh, I almost forgot my favorite: You cannot die from MS! We heard that a lot. I’ve imagined in recent years the number of people attending a funeral who would be amazed to know their loved one didn’t die from MS. <note sarcasm> Like so many in these forums, we thought our worst case scenario would be the loss of mobility, and we soon discovered that wasn’t even in our top 5 concerns.
My husband has had MS for 25 years, but it became progressive in 2010 at age 40. In these last 7 years, he has declined from a busy career as an aerospace engineer, an active volunteer and involved father of young children to being confined to a power chair with use of one hand, one shoulder and his face. Otherwise, he’s a quadriplegic. And he has dementia. He’s been through all the DMTs and – to state the obvious – none of them ever worked. He comes from a huge extended family with zero cases of MS, which is only moderately reassuring to me when I read all the forum comments from people who are 2nd, 3rd or 4th generation MS patients in their families.
As a mom, the hardest part for me is that we brought two little children into a quagmire of a life, thinking “a parent in a wheelchair isn’t a big deal, if that happens”. Guess what? I still feel that way. Who cares about a wheelchair? I mean, it’s horrible. I don’t want to minimize the impact of having to use a wheelchair. But you can be an amazing parent and use a wheelchair. You can be an engineer. You can cheer at your kids’ ballgames. You can travel. You can engage with your family and friends. You can do everything everyone else does – except walk. So we had children and my husband continued his DMTs and everything was peachy until the kids turned 5 and 2 and then suddenly everything was not OK. And that genetics counselor who had assured us that our future children were no more likely to get MS than anyone else? Well, I wasn’t so sure I believed her anymore. I had to look at two sweet little faces and wonder if their own mother had set them up because she had been naive.
There’s better information available now – thanks to bloggers. The MS community finally acknowledged that yes, of course, you can die from MS; and yes, sadly, the brain damage can result in dementia. And that neither of these things is unusual. But I rarely see those acknowledgements from the medical or research communities – or even from the MS advocacies – I get most of that from people with MS.
I don’t ACTUALLY think anybody lied to us. But I do think they were negligent in downplaying the myriad of complications this disease can bring. I hate that I trusted the experts – and I wholly own my own optimism. My husband is kind of a worst-case-scenario and maybe it didn’t make sense to scare a young couple with a list of unlikely possibilities.
What about you guys? For those of you who have been at this for a long time now, do you feel like we have better information now? Did you get good information in the early years?