No problem. It's been 5 years since and my health has deteriorated but the elc is still prevalent. Hope you find one. Speak to social services if need be.

Same here always looking for a place to get up. Crawling or just wait till someone gets home

DolceVita I

Right they invent a car to drive itself but nothing for this!

Marley Owen great question. I could, if needed, use the bed in my room or the chairs in my kitchen/dining room. it depends on the fall and how I am feeling to move. in this example, And in the presence of my children, the armchair was the safest and most convenient place to go. the white battery pack also needs charging after each use and that is the main central charge point too. 😊

Martyn, Thanks for answering! I totally understand! I am just about to finish my DPT degree and be a physical therapist, watching these types of videos helps me to better help and give ideas to people I'm seeing, and also send them your way if they also have FSHD. Thanks for being such a positive and real example for everyone!

Sorry only just seen this. I would love to connect more. You have a great idea

Im here if u have any questions i have fshd also and many of my family do including my daughter

Sorry, missed this. Of course, feel free to connect and share

shoshanna fachima to buy independently they cost between 1.5k - 2.5k. I was given mine by social services after requesting assistance assessment. It's worth contacting and speaking to them.

Martyn Kitney thank you so much.i will look into that with the social services in my city.all the best and again,thank you.

Except that in that study, which is 6 years old showed that there were massive problems within the study participants. You can't claim the epigenetic route when the fault is within the genes the enzyme release that damages the muscles. That release varies significantly from FSHD patient to another. Which as you should know is why it's so difficult to track and it's not even consistent within family members. That's all down to the Type of FSH and the individual. Your family member may have been bed ridden but the only way to rebuild muscle after that would be that they allowed their lack of movement to deteriorate the muscles. This means that muscles aren't damaged but weakened and therefore they can be strengthened. However, those of us who are mobile but are having muscle deterioration will actually see that the muscle has been damaged by the enzyme That's released. To which there is no cure. Now unless I'm missing something. The FSHD society and Muscular Dystrophy team all say it can't be cured. There's therapeutic muscle support which I'm guessing is what your family member had. But for people like me with muscles that have been damaged due to the genetic condition and not the epigenetic actions can't actually do that. Which is exactly what the 2015 study said.

@@martynkitney6357 Thank you for this clear explanation. I also have FSHD. I really appreciated your video . You made me feel less lonely. Sending you my best regards from Québec, Canada .

Adult social services got it for me via assessment and occupational therapist meetings. However, you can buy these from anywhere online.

@@martynkitney6357 so sorry i don't even say hi. And how are u feeling today ? I apologize. I hope u are feeling well. If u don't mind letting me knowq how are u doing? I'm 46 i have Fsh about same stage ur at this video. When was this video?

@@ednamvega18 no worries. I'm ok. This video was 3 years ago. I'm 37. My health has changed now. I'm barely walking. I use hand rails and a walking stick indoors only. The rest of the time I use a wheelchair. I am about to upgrade to an electric power chair.

@@martynkitney6357 same here my im 47 have to get a power chair.

@@ednamvega18 I was told 9 years ago to use a wheelchair but I refused. It was safer to do so because of falling but I knew I would get weaker quicker if I used a chair. I can no longer stand or walk long enough and falling is now 5x a day so it's a must. I will always refuse what they specialists say and do what I want my own way and see if I can last longer. The time is definitely right for a chair.

It's Emergency Lifting Cushion

glassman204 hi glassman204 i can say the same thing. He's certainly got more muscle wasting then I. I can relate to the pain component though. How about yourself? What do you use to help on everyday life. I recognized your Winnipe Jets symbol! I moved to Calgary from the Peg 8 years ago. I would love to pick your brain about your experience please write back. May you be well!