Check out this wonderful short documentary about Pierre, a 40-year-old who has shared this intimate view of what it is like to live with facioscapulohumeral muscular dystrophy.
Posted on: Mar 08, 2016
Lighting the Way to a Cure
Posted on: Mar 08, 2016
Check out this wonderful short documentary about Pierre, a 40-year-old who has shared this intimate view of what it is like to live with facioscapulohumeral muscular dystrophy.
Thanks so much for the documentary — and reality check for me. Now over 70 and long “retired” from (paid) work; I’m at roughly the same level of Ability — still ambulatory but pushing my limits. Yes, “Every day is an adventure, and every hour, every minute is a puzzle to be solved.”
I can only suggest that for me, cheap ankle-braces have almost eliminated foot-drop falling; and this year a cane has become an easy invaluable part of my attire, and mobility support. The cane also “explains” my issues — and initiates welcome small offers of help. You put on a smile, and do what ya gotta.
Pierre, I am exactly the same as you. Same age and in the same condition. Here are some things that have helped me:
Buy a pair of adidas ultra boost. They are very light, very comfy and they turn up at the end. This helps to stops catching our feet. My left foot is worse so if I am going for a walk over 1km I wear one of these – http://www.orliman.com/en/product/calf-support-for-the-boxia-drop-foot-ankle-brace/ You will walk better and be more confident as you won’t have to worry about your foot all the time.
2/ Put your trousers on sitting on your bed. Standing up and doing it is very difficult.
3/ Put two planks of wood under your sofa legs. We know how much difference 20 cm makes when we try to get up right.
4/ Avoid going up those slopes. They will over extend your knees. You will not know you are doing it at the time then one day one of your knees will stop working. I did it carrying stuff up a steep slope for 2 weeks. Then one day I couldn’t walk. took about 3 months to get better.
Hopefully some treatment comes along.
All the best,
Jam
I am not very knowledgeable about FSHMD and have a question about pain. My brother-in-law has FSHMS and is in a wheel chair and can not use his legs anymore. He complains of pain. Are you in pain at this stage?
We’re sorry to hear about your brother-in-law. Unfortunately, pain is common in FSHD at any stage. There may be many reasons and causes for the pain, with treatments ranging from physical therapy, exercise, massage, acupuncture and medication. He should consult a pain specialist on a strategy to manage his pain. Please encourage him to contact the FSH Society, if he is not already a member.