ALS Clinic

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raggedymary

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My mom is finally scheduled for the ALS Clinic at Cleveland Clinic. Can anyone give me an idea of your first time at an ALS Clinic? Especially if you have participated at Cleveland Clinic.

My mom is pretty much in denial of ALS and I am afraid has some unrealistic expectations. I think it might help if I could maybe tell her what to expect.

Thanks for any help
 

CindyM

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Hi raggedymary. I've been going to the clinic in Boston for four months now but they are still watching my symptoms and waiting to give a DX so my experience is probably different from what your Mom will find. I did want to touch on the point you made about denial. It is probably a common emotion for both the patient and those around him or her. But the disease teaches us. Reality will set in soon.

Is the appointment coming up soon?
 

SoniaT

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Hi raggedymary,

The first time my Mom went to the ALS clinic in Vancouver, BC, she thought it was a good experience. I thought I might lose my mind. I had to finally come to grips with the fact that she had ALS.

The staff were very nice and we learned a lot, especially about eating and drinking. My Mom had a lot of problems eating and drinking, she would choke and it was unbearable to watch. They had an array of food and drink there, they had her try each one and watched how it affected her. We learned that she couldn't eat anything that was too dry and I had to cut up things into little tiny pieces for her. Eventually everything had to be put in the blender (she didn't care for that very much!) The drinking of her favorite beverage was interesting as they had these little packets of powder that could be added to her coffee to make it just a little bit more thick so it was easier for her to drink. From the testing of liquids they found the exact amount of powder to put in her coffee or her soft drink.

They also had an occupational therapist there to show us different utensils used for eating, such as a spoon and a fork that had a bended handle to make it easier for her to hold on to.

We also learned some weight bearing exercises to help her arms and legs to stay as strong as possible for as long as possible. Very simple exercises.

Well that's all I can remember now. But it was a very good experience for both of us.

I hope this helps in some way,

Hang in there!

SoniaT
 

vantec

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raggedymary said:
My mom is finally scheduled for the ALS Clinic at Cleveland Clinic. Can anyone give me an idea of your first time at an ALS Clinic? Especially if you have participated at Cleveland Clinic.

My mom is pretty much in denial of ALS and I am afraid has some unrealistic expectations. I think it might help if I could maybe tell her what to expect.

Thanks for any help
I was at the ALS Clinic at the Cleveland Clinic. They seems very professional, maybe too professional. What I mean is they don't seem to show much compassion, when you tell them how you feel. My problem is that I am not in denial of ALS, but can't seem to get anyone to diagnosed or believe that I have it. It is amazingly frustrating.

The doctor was nice, but didn't do enough tests, even after I told him I have muscle twitching (he didn't check for that), and when I showed him the atrophy in my body, he said he really didn't see it.

I think that if your Mom is in very bad shape, like she can't get out of a chair, without using her arms, or her voice is very poor, you will get good treatment at the Cleveland Clinic. I think they need to see an ALS patient that is well into major systems, before they will diagnosed her. I was there about two weeks ago. I just saw another doctor late this week, and he is not from a big hospital, but I feel he will be the doctor that finally finds out what is wrong with me. My tests will be back next week. Wish me luck.

Maybe your Mom has Myasthenia Gravis, Lambert-Eaton myasthenic syndrome, or Wilson's Disease, which would be a much better condition to have, than ALS.

Conrad
 
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