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Hello Kevin and everyone,
You said don’t be shy, here goes:
We attended the first conference but missed the second. Glad to see there is going to be a third and we are definitely going to plan to attend.
From attending the first year conference as well as watching videos from the second I do have feedback. I was very impressed and thankful for the knowledge and dedication of the doctors and researchers. We are always interested in the latest research and studies and grateful that there is so much being done in the medical community. However, (no offense intended), for much of the conference, I felt like I had dropped in on a biology class and that the content would probably be better received by a group of primary care doctors seeking more information rather than patients and caregivers who already know their diagnoses.
I feel, as do several others I spoke to, that what we really need is information and help with daily living. My son has a rather severe case of BMD, so it’s very possible that we have had to deal with many issues that others have not. However, just the fact that these others are attending the conference, leads you to believe that they probably are not dealing with the mildest form. So, even though they may not yet have had to deal with some of the issues we have, it’s likely that they may have to deal with some of these issues in the future.
Some of the issues we’ve had to deal with and research on our own as well as a few that we still need information on are listed below. If there could be at least some breakout sessions on some of these issues, I think it could be very helpful:
· Schools—IEPs, college selection
· Social Security—qualifying for disability benefits, ticket to work, etc
· Medicare—qualifying for the different parts, reinstatement, paying a premium for extended coverage
· Driving—finding a driving rehab instructor, purchasing and getting help with funding for an adapted vehicle
· Equipment—what’s best at what stages—canes, scooter, power chair, what will Medicare cover
· Exercise—what’s best, what’s too much
· Brief coverage of ADA—what modifications an employer must provide, how to ask for the modifications
· Supplements—which are safe to try, which should be avoided—creatine? CoQ10?
· Bathroom issues—mechanics of getting on and off commode, suggestions for dealing with pelvic muscle weakness affecting bowel movements
· Dating—advice on entering the dating scene as a disabled person
· Info for caregivers—how to help getting patient from a sit to stand without injuring yourself
· Aides—getting and keeping a reliable aide for dressing, toileting, etc, what will Medicare or other insurers cover
· Respite care—what may be available, what to expect
I’m sure everyone with BMD and their caregivers have learned something along the way about overcoming obstacles that would be worth sharing with others. With so many people with the same diagnosis being gathered together I think it’s a perfect time to share some of those solutions.
I hope my list spurs others to think of issues they’d like to see covered.
By the way, would it be possible for Cedar Sinai to negotiate some kind of deal for renting handicap accessible vehicles? |
