dysferlin at Yahoo! Groups

Re: LGMD / Miyoshi (sp)

Jennifer Millican — Tue, 10 Nov 2009 00:38:41 GMT

I am glad we have the MDA but my local group is mostly older people or single. There are no young families there. We go to just a regular counselor and it has

Re: LGMD / Miyoshi (sp)

Roxanne Kraft — Mon, 09 Nov 2009 15:09:19 GMT

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

Re: LGMD / Miyoshi (sp)

Roxanne Kraft — Mon, 09 Nov 2009 15:04:23 GMT

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

Re: LGMD / Miyoshi (sp)

Suzanne Croft — Mon, 09 Nov 2009 10:11:48 GMT

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

Re: LGMD / Miyoshi (sp)

Jennifer Millican — Mon, 09 Nov 2009 05:53:12 GMT

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.

Re: LGMD / Miyoshi (sp)

Roxanne Kraft — Mon, 09 Nov 2009 05:24:34 GMT

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

Re: Miyoshi and working

Kimberly Niehaus — Fri, 06 Nov 2009 01:17:13 GMT

Thank you for the information. ________________________________ From: John B To: dysferlin@yahoogroups.com Sent: Wed, November 4, 2009

Re: Miyoshi and working

Kimberly Niehaus — Fri, 06 Nov 2009 01:16:17 GMT

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

Re: Miyoshi and working

Thayer, Joshua — Thu, 05 Nov 2009 21:23:56 GMT

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

Re: Miyoshi and working

John B — Thu, 05 Nov 2009 02:59:06 GMT

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

Re: Miyoshi and working

cadum — Wed, 04 Nov 2009 20:26:53 GMT

Hi Kimberly, Sorry, I don't know the answer. I do wish you the best of luck. Cadum (Marne)

Re: Miyoshi and working

Jenster — Wed, 04 Nov 2009 19:37:16 GMT

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

Re: Im 26 and have had Miyoshi myopathy for 7 years now :(

Suzanne Croft — Wed, 04 Nov 2009 12:05:07 GMT

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

Miyoshi and working

kimberly.niehaus — Wed, 04 Nov 2009 04:17:55 GMT

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

Re: Im 26 and have had Miyoshi myopathy for 7 years now :(

Thayer, Joshua — Wed, 04 Nov 2009 01:47:59 GMT

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