mostly4moebians_difficulty

While we all are probably glad to know we're 'not the only ones' any more ... there probably are many others "out there" who have Moebius (and may not even have a diagnosis!) and have no access to support groups of any worthwhile kind. Just as there undoubtedly are individuals who have the strength to 'rise to the challenges' there probably are others 'out there' who, for whatever reasons, don't have easy access to such strengths.

The following was sent in by Tom Voorheis, webmaster for "Moebius Warriors"
"I'm writing from New Brunswick, Canada. I just visited your website and
was very impressed with how quickly I was able to access and digest
information on this syndrome.

I was visiting your site because of a recent referral to our agency. Although I have been working in the field of disabilities for 20 years, I have not worked with anyone with this diagnosis. He (age36) is living at home with his parents who have approached us to help him expand his social network beyond their immediate network. He is working in sheltered employment in a bottle redemption centre 3 days/week, and is seen quarterly by our Mental Health clinic's psychiatrist.

I am writing to ask, given his introverted personality, if you could
provide any advice for our programming. My quick review of the material
I printed from your site would lead me to believe that this syndrome is
primarily physical in nature, although this man also suffers some degree
of developmental impairment. Are you aware of any "best practices" for
"day programming" in this your area of speciality.

I'm sure you're very busy, but would appreciate even a suggestion of
current reading material or the addresses of agencies providing day
services to families who could talk about their experience.

Thank you for your time"

Just a thought ... we could develop some kind of "reading materials" that would describe (from our different experiences) how Moebius impacts our lives.

Any thoughts on this? email me - [email protected]