Hi Marne, I am 22 years old and was diagnosed around 17 or 18. Since then, I have been getting noticeably weaker. I was hard to cope with the situation as I...
Miriam, I am 28 years old and went to a wheelchair 2 years ago. It has really improved my quality of life as I can get out, go shopping and actually LOOK at...
Hi Jennifer, Thanks for sharing, this is all very helpful to me. I have been thinking about using a wheelchair even though i am still pretty mobile just to get...
I have a powerchair. My arms were not strong enough to push me and strain of pushing could have caused more muscle damage. Do you have an MDA clinic...
Thanks Jennifer. It was good to hear someone say that because you are right. I do need to do what is best for me, even though it may be tough on others. I do...
Well, for counseling you first need to call your insurance and see if they will cover it. If they do then you would look at the counselors they cover first. I...
Hello to everyone, I have been reading your posts and in the process of following the discussions I am learning quite a lot. My thanks to everyone who...
Hi Cadum, The short answer is that there really isn't a difference between the two, except in terms of the initial muscles that are affected. Before the genes...
I know where you are coming from regarding a wheelchair!! Im 26 and have been using one for 3-4 years now. I started first using a stick when i was around...
Hi all my name is Claire and im 26 years old. I started to show the affects of this condition when i was about 18-19 and it has since progressed to the point...
Thanks for sharing Claire! What a familiar story is so many ways! I first broke bones in my foot in a fall in 2002, then again in 2003 and then again in 2005....
welcome Claire! I guess I am a scardy cat because I only broke my foot one time before getting a walker and then went to wheelchair as soon as it started being...
Once more I am very glad I joined this community. The comfort of knowing that so many of us share the frustration, pain, challenges and also the successes when...
Thanks Jennifer for the blessing - need as many of those as possible!! Im just at the stage were ive had enough as im so down and depressed currently with all...
I am so glad I dont work! I can only imagine how frustrating that is! What kind of work do you do? Can you do it using a walker or wheelchair? The MDA even...
Hi Claire, I am really sorry to hear about what you are going through. don't know what your rights are as a disabled employee in the United Kingdom, but you...
I wonder if anyone can help me with a question. I have been working at home as a claim rep for a major insurance company for the last 8 years. This has been...
Hi I work part-time. This means I still get to have a social life, but am not too tired to enjoy my kids and family life. Is this an option in your job - as a...
I would say that you would qualify for disability (assuming you live in the us). Also, once you recieve SSD they have a program called "ticket to work" where...
I have lots of information about working with a disability. I have Miyoshi Myopathy and am currently working a full time position in the office. There are many...
Hi Kimberly, Thanks for sharing. So much about what you write, including the inability to get out in bad weather and worrying about using toilet facilities at...
Josh, Thank you so much for the information. I don't remember receiving a certificate of insurance but will look into this. I fear that when the company...
Thank you for the information. ________________________________ From: John B <bluedestin@...> To: dysferlin@yahoogroups.com Sent: Wed, November 4, 2009...
Thank-You so much for your postings. I strongly agree with you when you said that you need to do what is best for you and your quality of life. But I just...
I am sorry. That is difficult but the truth it, she should not be ashamed of you. Physical disability is not something you can help and she is being a snob....
Hi I also have a seven year old daughter (and a ten year old son). I also took my daughter to a party this weekend. She helps me get my wheelchair out of the...
Thank-You! This has been hard because my children have been born into this. And I guess that I have also tried my hardest not allow them to see this...
Thanks I am going to our local MDA tomarrow so I am going to see if they have a support group that we could attend so that we can see that we are not the only...
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