Friday, August 12, 2011

Charcot-Marie-Tooth Disease

For those that don't know, my husband is affected with a debilitating disorder called Charcot Marie Tooth (CMT).    It is an inherited disease that came from Hubby's mom (although she denies she has the disease) and her side of the family.   In addition to Hubby having the disease, so does his brother, and I believe 3 of his cousins.    Hubby started to show the symptoms at an early age while he was in high school and eventually had to have a bunch of surgeries on his legs and feet because of the damage the disease caused. 

When we first met, I knew he had these surgeries, but he clearly did not try to let it limit him.   Our first date was bowling, our next date rock climbing (in a gym), we went on lots of walks - although they were short and slow by my standards, but overall he tried to stay active.   We joined a gym together, but he only went when we went together and he couldn't do much - so he was done in like 20-30 minutes (whereas I was looking to be there for like 90 minutes).   

Eventually we stopped doing dates that were as active, partly because I was trying to save our money and not spend it, and partly because I was around him more often, so i could tell his legs bothered him more than he let on.

As I mentioned, Hubby's brother also has the disease, and he's been a bit better about going to the CMT specialist, so last year I finally got the information from my sister-in-law and Hubby went to the doctor.   He went for 2 reasons, one was because I really wanted him to start going to the doctor and do whatever he could to keep his body in its best shape possible, the second because there was a new study that was awarded to a few doctors, including the local one, and Hubby and his family could participate in it.

Anyways, there is the background on this disease and my new "relationship" with it - now to the reason of my post.    I'm of course worried about the fact that we could pass this on to our kids when we have them, but in reality, there are lots of things we can pass on that we do know about (diabetes, heart disease) and that we don't, so I don't let this bother me that much - although I'm hopeful that since Hubby, his brother and his cousins are participating in the trial, they might find something that might get them to a point where they can actually treat the disease.   (now a side tangent on the annoyances of my MIL - she refuses to participate in the study because it doesn't change anything for her, even though we continue to tell her this isn't for her, or even her boys, but her grandsons and other future family members).

Over the past month, Hubby's legs have been bothering him A LOT more.   When we are going somewhere that requires some walking, his pace has definitely slowed down a lot - I struggle to stay even a couple steps ahead of his pace (most people struggle to keep up with fast walkers - I struggle to slow down to the pace of slow walkers :)).    His legs have gotten bad enough that we've talked a bit about him getting a wheelchair (now that he has health insurance) for when we go somewhere that will require a lot of walking - not something for him to depend on - but something to keep us active when his legs limit him from doing that. 

Recently Ive started to think about this a lot more, and I realized over the past 3 years I see a large progression - some of this might be because he was hiding some of it from me in the beginning, some of it might just be me - but it makes me really worried for Hubby.  CMT is an incurable disease, and in many ways an untreatable one. 

I say untreatable because the whole purpose of the doctors visits is just to see how you are doing and if you are getting worse, and if so, how much.   But the only treatment they have is to tell you to wear braces to help you a bit with balance, or to tell you to stay off your feet as much as you can so you don't tire them out unnecessarily.   Hubby's doctor even said physical therapy won't provide much benefit it will just tire his legs out even more.

The disease primarily starts with your lower limbs, but can eventually affect your hand function, and Hubby had started to see those symptoms last year, and while at the doctor, he did do some tests and it did show some decline in his hand/arm mobility.   Nothing that will affect us even to the smallest bit right now, but just another sign of progression with the disease.

With the progression that Ive seen of the disease over even just the last 2 years, I'm just so worried that Hubby will end up in a wheelchair on a more permanent basis before I ever even expected...

1 comment:

  1. Hey Lynda..Great post. Brave post! I wish you and Adam all the best in this regard. It is sad to think of Adam having to rely on a wheelchair, but at the same time it will give you guys the freedom to spend even more quality time with each other (I think about Mike getting to this point often and how I would deal with it.) It is a testament to how much he loves you that he has done what he could to keep up with you all of these years. Go Adam! Go Lynda!