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Lynnmoore

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Loved one DX
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I'm so angry I could SCREAM and am hoping that maybe others can help me with what my next step should be before I go off the deep end.

Here's the short version of what has happened:

My father-in-law was diagnosed with Bulbar ALS last November at Baptist Hospital in Winston-Salem, NC. In April, he had a feeding tube put in b/c he was having so much trouble eating and his weight had dropped dramatically. For his short-term rehabilitation, my husband and I moved him closer to us in Charlotte (about an hour aways from Winston-Salem) so we could help manage his care and to set up appoitments with the ALS clinic in Charlotte. However, when I called to set up an appointment with the ALS clinic in Charlotte, they told me that:

#1 - they want to conduct their own battery of tests versus using the ones we already did (over a 2-day period) at Baptist Hospital.

#2 - the tests take two days and they only do one set of those tests a week, for one patient. The next two-day opening is July 21 & 22.

I was INCREDULOUS! Given the number of people being diagnosed with ALS and the short life span for some of them, I couldn't beleive they only do 52 tests a year and that we have to wait almost 3 months to be able to get an appointment.

So - here are my questions:

#1 - has anyone else expereince this?
#2 - if so, any advice on how to get him in earlier?

My husband and I are sick that we've moved him since we're having to start over from scratch. Now we are wondering if we should just move him back to the Winston-Salem area so that he can continue in Baptist Hospitals Care. But that puts him an hour away from us and we are his only care-givers.

I would love any and all advice, positive and negative. I'm sick over this and can't sleep b/c I feel like we've made his situation worse -- not better. Currently he's staying in the same nursing home that administered his rehab (our home isn't set up to take care of him) while we try to find an assisted living place that will take someone with a feeding tube.

I've been reading posts here for quite a while and have learned so much, thanks so much for being a great source on information as we try to deal with this disese.
 

brooksea

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Lynn,

Welcome to the forum. Terribly sorry about your FIL.

Have you spoken to or emailed anyone with authority at the Clinic regarding your situation and the stress your FIL has endured with moving and a new PEG? It seems that if they haven't even looked at the test results from Baptist, how could they want to totally do the tests over? IMHO, I think you should try to talk at least to the nurse in charge at the Clinic and speak to him/her directly about this.

Here is the director of the Carolinas Medical Center for ALS- (unless they are no longer there, as doc that led the ALS center left over controversy.)

MDA/ALS CENTER AT CAROLINAS MEDICAL CENTER
(704) 446-6212
(704) 446-6255 FAX
E-mail: [email protected]
Elene Bravver, M.D., Director
1010 North Edgehill Road
Charlotte, NC 28207
 

Lynnmoore

New member
Joined
Mar 26, 2008
Messages
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Loved one DX
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Thanks for the suggestion!

Thanks so much, it's great that you know who to talk to at the ALS clinic. I'll give them a call on Monday and plead our case, hopefully I can find someone to help get my father-in-law into the clinic earlier. And while I certainly aren't asking them to "bump" someone else to get him an earlier appointment, I jus:-Dt want them to understand our situation better.

Thanks again!
 
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