The question this time is about sudden falls and how upsetting and unsettling they can be as you never know when and where you’ll end up on the ground.
My name is Jamey Jo Steele and I am 24 years old and live in Washington State in the USA. I was diagnosed with CMT when I was 8 years old. Near as we can tell my CMT is a result of a spontaneous mutation as nobody else in my family is affected.
I had surgery on both my right and left feet when I was 8 to relax my tendons in my arches. I then had surgery at the age of 16 on my right foot which included a heel slide, hammer toe relaxation and fusion of my big toe. Recently at the age of 24, last December I had a subtalar fusion on my right foot.
I have been wearing AFOs for about 3 years now and have had nothing but trouble with them. They cause a bad callus on the outside of my foot which on both feet has got infected with staph infection and caused a lot of problems. In the past 3 years I have had 3 different AFOs made for my left foot and 4 for the right.
Recently, while working (I am a school teacher) I was simply walking around my classroom lecturing and my left knee gave out causing me to fall. I went to the hospital, nothing broken, etc., given a knee brace and told to come back in a week if things weren’t better. That same afternoon I went to stand and the same knee gave out again. Two days later while getting into a car, with a knee brace on, not putting any weight on my leg, the knee gave out again!
I saw an orthopedic surgeon yesterday and he has ordered an MRI to see what’s going on in there. He fit me with a higher quality brace. My knee is completely black and blue from bruising. I have never ever had any knee pain or problems until now.
Is this something you have experienced or know of other CMT’ers experiencing? If so, what is done to help this NOT happen. I am literally scared to death to ever walk again with out a knee brace and crutches for fear for my knee giving up on me again!!
Just looking for some advice, insight, words of wisdom from someone who seems like she knows a lot and had lived with CMT for a long time.
Hi Jamey Jo: Having lived with CMT a long time I can relate to your problem. CMT can affect your knees and having them give out without any warning seems to be a common occurrence for many of us. One minute we’re up and the next second we’re down. It’s not only frightening, extremely unsettling but very painful and you can’t help but wonder what’s down the road for you.
I would often fall crossing the road where the road crests because it is a bit of a hump. I recall falling in the middle of Saint Catherine Street in Montréal. If it hadn’t been for a Good Samaritan scooping me up and carrying me to the curb, I would have been human fodder for all of the taxis and sundry vehicles revving their motors to move as soon as the light turned green. I also used to knee it up curbs because my knees simply weren’t strong enough to hold me.
Angela Graham’s Facebook page CMTUS just had a discussion on what to do when you trip over a speed bump and land on your face or hands or boobs or whatever. The consensus there was that it was time for a small portable electric scooter and I fully agree. I really don’t know how you school board would react to you teaching seated on an electric scooter. If they are at all humane there should be no problem. It’s not what you are sitting on that counts but what’s in your brain.
See what the doctor comes up with after the MRI is done and try a stronger brace but if it’s like the knee problems most of us have a mobility device is the answer.
Pride makes a little light scooter called a GoGo. I bought one in the spring two years ago for about $1400 and I believe it would likely be cheaper in the United States. I also ended up buying myself an extra battery pack so that I would always have one charged and ready to go. I get up at night and have to move my scooter to use my urinal beside my bed and the picture you have to have a battery pack at night so there really isn’t any time to let it fully charge. Having two means that I can always have a charged battery pack ready to go.
A couple of things you should be aware of before you buy: the charging unit is not easy to plug-in to the battery if you have weak hands. It’s under a flap under the seat. I find the easiest way to do it is to have the charger somewhere where I can get at it very easily and then move the battery pack to it.
The battery packs are heavy so figure that into the equation.
The seat swivels but you have to have the strength to pull up on the release under the seat to let it swivel. My hands are very weak and I can barely do it but I can do it. If your hands are normal, or almost normal, you will have no trouble.
The coloured lights on the tiller that tell you if you need to charge your battery are so bright that they can impede your night vision. I have put a little black circle over them that I can lift up to see how my charge is.
I find the seat a little hard so I have an Action gel pad on it that seems to do the trick.
All in all, I like the Go-Go very much for indoor use but I would not use it if I were going to do anything on a trail or anywhere where there are a lot of bumps. It is great for a shopping plaza and would be great for school as long as there was an accessible entrance.
You can also attach a GoGo basket on the front and carry books, papers, etc. in it. I carry a water bottle, a small box of Kleenex, a Tele-Stik reacher, my wrist brace and my Kobo and in four glasses cases, the kind with the clip on the side so I an keep them from slipping down into the basket, I carry: pens, pencils, scissors, an emery board, Lipsyl, a letter opener, you name it, ready at hand.
You can also buy a device to lift a GoGo or any scooter into a trunk or the back of a van and out again at the touch of a button.
Why not contact a dealer of assistive devices near you and ask to borrow one for a weekend and see how it feels. I think the relief will be palpable.
I will also mention that there are foot ankle knee orthoses aka KAFOs. Some people with CMT use them and you could talk to your doctor and a good orthotist about them but I know that riding in style on a nice little scooter is a heck of a lot nicer than strapping on a great big KAFO every morning. But that’s just my take on it.
Will exercise help? I very much doubt it. In fact, exercise could simply exacerbate the problem.
I can hear the fear of falling in your written word and I remember it well. It’s horrible and you feel as if you want to be hanging onto something all the time, using crutches to hold you up or be carried. That reminds me of Footprints in the Sand and knowing that when you are at the worst time in your life and the most frightened, you are being carried. I’m not a religious person but I’ve learned to have an open mind and perhaps the suggestion of a Go-Go is the answer for you. God knows answers come from just about anywhere.
Good luck and let us know how you do.
If anyone out there has had the same experiences please comment on this blog post.