Forum Replies Created
April 23, 2020 at 10:18 am #187486Reply To: How does everyone else do it?
I wouldn’t worry too much about work.
Fact is you have muscular dystrophy, mine is discrete but I still get DLA (not yet transferred to pip).
If you can get a muscular dystrophy nurse to come they would be able to help you. I was told I might not get PIP because my condition isn’t as obvious even though it has a massive effect on me, these pip assessors might not understand MD and might miss a lot of what will affect you. I was told if I don’t get PIP we would appeal it.
It sounds like you need someone to speak to, your neurologist might be able to put you under the nurse.
You still need energy to live, not just trying to survive at work.April 23, 2020 at 10:09 am #187485Reply To: LGMD2i
I don’t have your MD but I totally understand where your coming from, mine is very discrete. The tiredness, I can have a full nights sleep, then sleep for a couple hours during the day.
I did a diary with my physio and on average slept 16 hours per day.
It’s so annoying!!
Lifting heavy kettles causes spillage haha.
I can walk but people always think I’m fine, so I have to be careful because it’s easy to be knocked over!December 3, 2018 at 11:25 pm #164711Reply To: Is crispr going to cure us all?
Do you not think?
When you read about it it all sounds positive, but I wouldn’t like to guess how long it would take.
Some dogs were cute from muscular dystrophy. https://www.google.co.uk/amp/s/www.bbc.co.uk/news/amp/health-45355556
Rats have also been cured.
How lucky are they
Some other muscular dystrophies are apparently in line to be tested too.
Probably be at least 10 years though? I’ll probably be dead by then hahaMay 24, 2017 at 10:20 pm #149746Reply To: Achilles Tendon lengthening!!!
I had this surgery but I’m not sure if the results would be the same. I have emery dreifuss not Becker.
Ok so when I had this I could walk, but it was on my toes. I had the surgery at 17, had the cast on for about 6 weeks and I did lose a lot of muscle. When they took the cast off I lost so much muscle I couldn’t even stand up. However, my angle movement was fantastic. For weeks after my family and I had to keep trying to get me up onto my feet to learn to walk again because it’s totally different and to build the strength back. It’s quite hard after the casts come off, but weeks down the line it’s definitely worth it. I would totally do it again. Your walking improves sooo much, it just takes a bit of hard work. I would hate to think how bad my legs would be now without it 10 years on. He will walk so much better and easier. And always wear the splints after surgery as they will go back fast and you do not want to go through it again.
The only downside I can see now is that I haven’t got the same strength back in my ankle or lower leg. But the mobility far outweighs that, and it’s lasted 10 years.May 24, 2017 at 10:04 pm #149743Reply To: Neck support
I went to orthotics and they specially made a neck support perfect for me. They made a 3D model of your head/chest and the support then fits your body perfectly. Mine is just for use when tired but they can make it any shape/design which might work better. Mine is like wearing a bra (haha) connected to a support that is similar shape to your spine running up to my neck. Larger smaller ones can be molded depending how tired or weak.
Only problem was it took a while to get it made and work properly as changes might be made.February 12, 2016 at 11:31 pm #121504Reply To: Meeting girls
Hi thanks for the reply.
I’m not sure if there is any social events as I don’t really talk to people, how would I find out about these?
And I will check that website out thanks I’ve never heard of that before!June 22, 2015 at 12:16 pm #96645Re: contracted elbows, side effects of straightening them?
I was also told that I cannot have surgery on my elbows because I will not have the strength to pick up my arms.
My elbows are fixed to around 90degrees.
However, with a lot of very painful stretching I have managed to gain some range in 1 arm. I have not yet worked on the other.
The reason I am asking this question is because I have found some equipment online that will force my arm straight over time.
Does anyone know if this will cause serious damage ?March 5, 2015 at 10:35 pm #96316Re: How to staighten the elbows?
Hi, this is the exact same problem I am having.
My contractors are really bad and have lost the ability to reach and do things with my arms.
The physio just says to do stretches, but I don’t think she knows if my arms will get better or not, as most of the work is guess work.
Can I just ask how did you find out that your elbow bones have set? As I am wondering f this has happened to me.October 7, 2014 at 1:15 pm #94841Re: Resting
i have this problem.
I am not in a wheelchair, but i get really tired and have difficulty sleeping.
If I get up early, around 8-9 in the morning i will end up falling asleep during the day. If i dont go to sleep i will collapse.
Whereas, if i wake up at around 11, i normally dont need a sleep until around 9 at night.
I understand the guilty feeling, i get this because i do not want to go to sleep and allow my condition to worsen and get weaker.October 2, 2014 at 1:46 pm #94780Re: Why isnt there a cure for MDED
In over the 25 years of me having MD, i haven’t seen any real change in what the doctors do. I believe the people who have MD should be told about the steps forward that take place, because i dont know of any.March 12, 2014 at 1:17 pm #94108Re: E.D sufferers gaining muscle?
Ok thanks! I was wondering, when you try to build muscle, say you are trying to build your arm muscles by lifting weights, what has worked best for you, low reps with slightly heavier weights, or lots of reps with lighter weights?