View Full Version : ALS clinic experience
tabney
04-24-2007, 11:11 AM
Hello everyone. Yesterday, I attended the ALS clinic for the first time. What a group of people! I found this to be a wonderful, uplifting experience. I felt embraced, supported, and completely understood.
The respiratory therapist wants to do a sleep apnia (sp?) test due to decreased respirations when lying down. The OT and PT were very helpful with adaptive tools and exercises/stretches.
I just wanted to share with all of you. I was exhausted when I left but felt like I had just met a team of people truly interested in my case and my care.
CindyM
04-24-2007, 06:25 PM
After reading stories like yours I feel sorry for those who don't have an ALS clinic nearby. Glad you found the center, Tabney. Cindy
tabney
04-24-2007, 10:07 PM
After reading stories like yours I feel sorry for those who don't have an ALS clinic nearby. Glad you found the center, Tabney. Cindy
I cannot imagine not having the clinic. I did not realize it was not an option for anyone with ALS. Sad....:(
CindyM
04-25-2007, 06:54 AM
When I first started having trouble my hubby wanted to move permanently to our home in Florida. He said, rightly, that it needs very little remodeling to make it accessible (it even has a walk-in shower,) and it might be better to be away from winter ice and snow since I like to go out so much.
But the nearest clinic would be an 8-hour round trip. Possiby longer if I actually measure the driving distance between Sarasota and Jacksonville. But there are 4 cllinics in the city in which we now live. So the snow and ice won that argument! Cindy
patricia1
04-25-2007, 07:42 AM
Cindy I just bought a home in the villiages about a hour south of orlando Are there any ALS clinic there. I heard there is one in miami ,but that 12 hours round trip Thanks Pat
JACKIEMAX
04-25-2007, 09:42 AM
good morning friends,
we live in a very small town in middle tennessee, but were referred to a wonderful als clinic in nashville, tn. about 90 mi. from us. it is a difficult drive because of the heavy traffic, and our appointments, for some reason, are always early in the morning.
my husband, who was dx with als in jan. 07,'s first cousin lives nearby and insists on driving us there for each visit due to the stress of driving in that awful traffic, and this is a blessing to us.
only, and i do mean 'only' in that als clinic do we find the caring people to help us that we need. they deal only with this disease and therefore all of them know the angst that goes with als.
the doctors in the town close to us, 7 miles, are not knowledgeable in als, and they just about drove us over the edge by being so wishy-washy with his dx, and their bluntness in telling us 'this is terminal, no treatment, no cure'. it is necessary to know this, but i do feel there is a right way and a wrong way to spring this on the patients.
has anyone else here had the experience of the doctors not having the empathy we feel we need?
have a nice day. jackiemax
tabney
04-25-2007, 09:54 AM
I agree totally with your post. Most family practitioners do not have the compassion of a pencil. It is a patient mill....come in....tell me what you are feeling while I make no eye contact and ignore your symptoms.....pay the copay on your way out! I cannot tell you the color of my doctor's eyes. That is what I loved Monday. The eye contact, the positive attitudes, the understanding when I would describe something I was experiencing. It saddens me this is not available to all that suffer from this disease....
Hi Pat. Go to alsa.org and then to the In Your Community tab and see the drop down menu and then type in the state you want and it shows the clinics and centers. There is also chapter listings there.
AL.
I Sure Envy All Of You, In Mexico We Don't Have Als Clinics That I Know Of.
Paty
Husband's Caregiver Dx 10/17/05
Baja California, Mexico
thank God We Live In The U.s.a. Mexico Border
patricia1
04-26-2007, 08:14 AM
Hi Pat. Go to alsa.org and then to the In Your Community tab and see the drop down menu and then type in the state you want and it shows the clinics and centers. There is also chapter listings there.
AL.
THANK YOU AL I HAVE ALOT OF TROUBLE FINDING DOCTOR THAT PARTICIPATE IN MY HMO MEDICARE IN FLORIDA TOO.PAT
Sorry Pat. we don't have that up here so I forget about that. AL.
