FSHD - Falling over and using an ELC
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- čas přidán 12. 09. 2024
- In celebrating #WorldFSHDDay I am promoting both on my blog and across social media how I fall over and use an ELC to help me up.
For more details please click on the link
www.insidemarty...
thanks for Sharing Martyn..i have this condition from my Father and his mother too [ they were carriers ].. i too fall over often like you do in this video, not anymore as i am now confined to a power chair..i did'nt suffer any pain but [ unless my head hit the pavement as certain times ]... i just deal with it, and couldnt walk upstairs at 23 y/o... after 27 yo most of my muscles deteriated in time, im 55 now and still work and employed at my brothers radio station.. i know certain things is a struggle, and you don't want to be a burden to anyone ,...but i still do my day to day routine and just go with the flow. but i do miss the days i could walk and run around and drive a vehicle...reaching for a mug up high in the shelves to make me a coffee... the simple things in life gone to this condition - for those guys out there that are normal physically i urge you to never take the simple things in life for Granted, Martyn you are a Inspiration and God bless you...
Martyn, thank you so much for making this video, it's been really helpful to me, Now I need to hunt for an ELC. Best regards Sarah
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.
I have the same condition but more at my shoulders ....i meditate alot .and im very spiritual ..its hard being like this but we are stong in our will..best of luck to u brother
Martin has shown enormous fortitude,grace and honesty in preparing this eye opening video, which informs people about this decease that we don't hear about that often. May God always Bless him and all those with this horrific decease , I know God has a special plan for Martin and those afflicted ,I will always pray for them and thank God for my aches and pains.
Glad you got the video back up! Can't begin to know how much you have to cope with on a day to day basis. Thank you for sharing. Hope this raises awareness. Hope this helps people understands.
(hats off to William for the awesome videoing!!)
Great video, that really is a nifty device. I know the worst part of making this had to be doing the controlled fall. I hate having to go to the ground like that. I always wonder how many miles I've crawled in my adult life trying to find a place to get back up. Thanks for the courage it took to make this video.
Same here always looking for a place to get up. Crawling or just wait till someone gets home
Martyn I still can't get over how much courage it must have taken to do this video. You are awesome and a total inspiration! Well done to William too, as always you were awesome with the camera 😉💜
Kudos to you my friend. Thank you for sharing your experience(s). I hope you continue to have good friends like your camera man. Be safe
Thank you for sharing, really important to raise awareness X
God bless you and your family
Oh wow martyn. That is such a clever device and although it may struggle with the box, you are doing well with it. Such an eye opener x
Wow you think with all the new technology they could incorporate some kind of a voice mechanism on heavy machinery to follow you to the chair LOL. That's bloody insanity! I Mean they have robotic hoovers that move by themselves for goodness sakes. I know
I'm not being helpful, but It frustrates me to no end what we disabled people have to do to accomplish a task as little as lifting a glass for me. I have a friend with MS and I also have a chronic debilitating disease as well!!! Maybe you should all get together and try and figure out how we can help ourselves with a making of a machine to assist all of our symptoms LOL thank you for the vlog it was very informative❣️🇨🇦
Right they invent a car to drive itself but nothing for this!
mate that was hard work.
DolceVita I
I have FSHD too,I can still get up when I fall so far,it’s not easy.Just a thought,if you have to crawl to the hallway to get the air lift.Wouldn’t it be better to just bolt some type of electric lift to the wall in the hall with a harness and just lift yourself in the hallway? Or maybe put the chair (or another chair) in the hallway with your airlift?
I keep some small foam mats around the house,like exercise mats only smaller, for my knees.
Hey i like your video and i want to create some now because i basically have the opposite FSHD my legs pretty strong, but cant use mt arms basically and have no core muscles. PLZ reply back and help spread the message cuz we look normal but need help and i wanna make videos that have focus on my sort of FSHD, your video inspired me to try and make a destination channel for this disability. Where ppl can talk about the troubles in life and how to get over some every day barriers and there ppl deal with it, because i know i have thought of suicide, the only this that keeps me going is i don't wanna hurt my family.
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
Honest question because I think I am just slightly confused, if you have to get to the arm chair to use the ELC, why don't you just leave the ELC plugged in in the lounge, closer to the chair, that way you can get yourself to both the ELC and the arm chair after a fall?
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!
such a device would be a great help for me too as i also fall and am unable to get back up in my own. i was wondering what this costs and where does one purchase this device.thank you for posting.
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.
Oh u poor dear that looks so exhausting, makes u just wanna help him up
Hi, great video I too have FSHD. You mentioned pain early in the video. It is also my battle. If you are interested could we connect and swap stories and suggestions?
Sorry, missed this. Of course, feel free to connect and share
Where u get this machine Elc?
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.
What is the ELC
It's Emergency Lifting Cushion
Hey, as per new research by T. Jones et al 2015 Clinical epigenetics, FSDH is an epigenetics disease and not really a genetic disease. So, one of my family members who was bedridden due to FSHD is now able to reverse his condition to 70% within a span of 9 months. In fact, within 6 weeks, his body started responding to the (natural/herbal) protocol which started following after becoming bedridden. I am happy to share the details if you're interested.
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 .
The condition of persons with Muscular Dystrophy is very pathetic, I am John, associated with Mobility in Dystrophy Trust, in Kerala working among persons with MD and SMA.
👏🏼♿️👏🏼❤️
Aap jis bimari se grast ho me or mera pura paribar is bilari se gambhir h yah jeewan jina bahut bekar h es jeewan me bahut kathnaiya aati h
And I thought my FSHD was bad. Yours is way worse then mine.
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!
Hey i like your video and i want to create some now because i basically have the opposite FSHD my legs pretty strong, but cant use mt arms basically and have no core muscles. PLZ reply back and help spread the message cuz we look normal but need help and i wanna make videos that have focus on my sort of FSHD, your video inspired me to try and make a destination channel for this disability. Where ppl can talk about the troubles in life and how to get over some every day barriers and there ppl deal with it, because i know i have thought of suicide, the only this that keeps me going is i don't wanna hurt my family.