ALS clinic as opposed to MDA clinic

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llacort

Member
Joined
Aug 16, 2010
Messages
14
Reason
CALS
Diagnosis
07/2010
Country
US
State
NY
City
Merrick
Hi Everyone,

My husband, Joe, was diagnosed this past July with ALS. We live in Long Island New York. We went first to Sloan Kettering and than for a second opinion to Columbia Presybeterian and saw Dr. Mitsumoto who we understand is tops in the field. We have been to the center twice so far and have an appointment next month. I want Joey to have the best possible care and am glad Columbia is an option. This morning Joey called me to say he's been thinking and is entertaining the thought to switching to Stony Brook. Now from my understanding, Columbia is funded by the MDA and Stony Brook is funded by ALS. Has anyone switched from Columbia to Stony Brook? If so, what has your experience been. I know there was an article in Newsday last week about a patient Christopher Pendegast who has been living with ALS for 17 years now and he receives his care from Stony Brook. Any information would be greatly appreciated.
 
Hi. Unfortunately I can't answer your question, but since it's been over a day since you posted it, thought I'd look for an answer elsewhere... I do not know about the two hospitals and their respective clinics, other than they both have great reputations. What I have read is that you can call and ask if they have support groups available (if you're interested) and how frequently will your husband be able to be seen in the Clinic. Whether the MDA or the ALS Clinic is better depends entirely (I read) on the specific Clinics, which of course leads back to your precise question. I hope someone who has experience will respond. Incidentally, I did read where someone "tried out" both the MDA and the ALS Clinics before deciding.
 
I think we will stay with the ALS Clinic at Columbia/Presybeterian for now. I think down the road Stony Brook might be a better choice. Since I dread going into New York, (we have to have someone drive us because parking is hard and the traffic is heavy) we will have to think about the practicality of the location. Since the visits monitor progress and offer suggestions to make life more comfortable, I wonder if it really will matter which facility we go to. They both have the same approach, assign a team, have each member of the team meet with you individually. Both say a visit should take about 3-4 hours. Though everyone is nice at Columbia and I heard raves about Dr. Mitsumoto's compassion and his nurses help, I found the visits (two so far) to be kind of cut and dry.
Thank you for your interest.
 
... Has anyone switched from Columbia to Stony Brook? If so, what has your experience been. I know there was an article in Newsday last week about a patient Christopher Pendegast who has been living with ALS for 17 years now and he receives his care from Stony Brook. Any information would be greatly appreciated.

I am sorry about your husband's diagnosis. I know nothing about the two clinics but don't base your decision on the fact that a PALS who attends Stonybrook has lived for 17 years. This has nothing to do with any (non-existent) therapy he might have received at one vs the other.
 
alsa vs mda
coke vs pepsi

go 4 the doc who seems most responsive.
 
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