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Georgia Peach

Distinguished member
Joined
Mar 26, 2011
Messages
294
Diagnosis
02/2011
Country
US
State
GA
City
Gwinnett
Scott and I went for his PT evaluation today and we came home with a wheel chair and a request to VA for a power chair. Thanks to what we've read on this forum and our ALS Chapter nurse I made a list of things we wanted to talk about while we were there for the consultation. The PT was wonderful, took an hour to talk with us during the appointment and sent my husband over to prosthetics to order a AFO for his foot drop. This is the most encouraged that I've been since he received his diagnosis. Just wanted to share this with someone else that knows how important this is to our family and my husband's well being.
:p
 
I know exactly what you mean. That's just how we felt when we first got started with the VA. It is very comforting to know that your husband will have the equipment he needs to have a quality life. I am aware every day that we are blessed.
 
I can't imagine how much harder this would be without VA. Tampa's ALS team and the SCI team have really been a Godsend.
Mayo Jacksonville has a lot of knowledge, and the Center for Independent Living really hasn't helped, so I'm not sure ALSA FLorida could do any good or lend any help.
VA is the way to go!
 
My father has ALS and we go to the Tampa VA also. I am my father's sole caregiver and I dont know what we would do without the VA. Tampa is so amazing. We went to Gainesville 1st and it was a horrible experience compared to Tampa. Thank God for someone in their SCI unit connecting us with Tampa now we only go there. The PVA has also been so unbelievably helpful. I am scared and sad about the future everyday but I know we are so blessed to be going through this with the support we have. I cant imagine my father having ALS and not being a Vietnam Vet. I will be of any assistance i can to anyone (being that I have a lot of knowledge about ALS and being a caregiver) but hope people will help and pray for us also. There is so much help out there but if you dont know to ask a lot of times you will not get it. My father has a PEG tube (but still eats by mouth only) can walk with the assistance of a walker a little but gets easily tired and is using his powerchair more often. He was diagnosed Dec 09 but showed symptoms at least 2-3 years before that (he was in denial and would not go the doctor). In most aspects I think he is doing well for the timeline but part of me is terrified everyday about the future. I was adopted and my mother left when I was 2 so its always been my dad and I. This is my first time writing even though Ive spent countless hours on here reading since his diagnosis. No one around me understands how hard and scary this is and Im hoping opening to everyone on here will be a blessing to me and I may be able to be a blessing to some of you. Most people don't even know what ALS is....
 
Your dad is lucky to have you as well as the VA
 
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