Status
Not open for further replies.

jaura

New member
Joined
Jul 27, 2015
Messages
5
Reason
Friend was DX
Country
US
State
NJ
City
Leonia
Hello,

One of my best friends of 40+ years was just diagnosed last week with Bulbar Onset ALS and I want to help him in any way I can. We live about 50 miles apart and he is soon to return home to live with his mother. He is 60 years old and cannot speak at all. He is using a walker and must give up his profession as a private teacher of music. This has been a gradual progression of symptoms since only last fall and I didn't even know about it until June. He will be living only 2 hours from the Johns Hopkins Medical Center but is intending to become a patient instead at the clinic at West Virginia University, which is a lot closer. My question is; even though WVU is an official ALS clinic, wouldn't the JHU Medical Center be a better choice? I want to know from anyone of you who would know because I don't feel comfortable trying to direct his personal care. But if it seems that there is a big difference then I think he should go for the very best. He has had no second opinion, by the way.

Thanks so much.
 
There are a couple of issues to think about. There are the neurologists and for a second opinion you want the best diagnostician you can find. Hopkins has superb doctors. But once you have the diagnosis the issues change. He needs the think ehat he wants from the doctor. Conventional treatment? Someone who is thinking outside the box for supplements? Research focus?
And then there is the clinic. They vary a lot and a clinic that meets your physical and emotional needs means a lot.
My sister originally went to Hopkins. She liked the doctor but hated the clinic. What I saw/ heard of it I did not blame her though that was 3 years ago. I think one of our current members goes WVU and is not happy there at all. Where is he going to be? What about Duke? Or UVA?
 
Thank you, Nikki J. He will be living in Cumberland, MD, which is about an hour from Morgantown. I have no idea if he could get down to Durham or Charlottesville for any length of time as that could get extremely expensive. It was my thought that a couple of hour's drive would be reasonable.
 
hey jaura, i am in WV and i go to UVA clinic where i really like the dr and the team is so,so, now looking to go to Duke for 2nd opinion. that's all i know, good luck you sound like a true friend and that means a lot to pals. later chally
 
Thanks, chally, maybe he could go to one of those places. But I don't know how it works if you go there and have to find a place to live. Do you rent an apt? And what if you need people to take care of you? Well, I think my friend's family could fairly easily drive him to Baltimore, so maybe that's the best option. Thanks!
 
He is only going to go to clinic every 3 months or so. Maybe less. He should live where he wants to live. I heard one person did not like Hopkins but liked U of MD. No personal experience. He can always change clinics though it is a little annoying and nice to get it right the first time
 
Jaura,

I currently go to the WVU ALS Clinic. I was diagnosed in April of this year. From our experience with WVU, I cannot recommend it. They have offered us absolutely nothing. We had to demand the only two current approved medications for ALS, Riluzole and Nuedexta. All of the specialists we saw at the clinic echoed the same phrase, "do what you can while you still can". They knew nothing about any of the clinical trials going on throughout the US. I will be going to Duke's ALS Clinic in Raleigh, NC in September. The head of the clinic there is a very caring and accessible doc and is interested in finding new treatments and possible cures for this disease. WVU, on the other hand pretty much just documents your decline. Both my wife and I were VERY disappointed in WVU. If there is any specifics that I can help you with, let me know. He would be better off trying to go to Pittsburgh.

Vince
 
Maura, what you're doing is admirable.

But remember that this is his journey, not yours.

And I most definitely do not mean for you to not help, research, ask and whatnot.
But we sometimes see friends and family getting pushy and even angry at the PALS when they don't share the 'enthusiasm'.
 
We did not have a positive experience with the JHU clinic the one time we were there. We have been going to MGH for clinic after my PALS participated in a clinical trial there. As travel gets more challenging for my PALS we may need to look for something closer to Virginia, but for now we love our doc as he is very forward thinking and the clinic is great.
Tracy
 
Also, we ended up at MGH because my sister did the research on the clinical trial and made the contacts for us. Sometimes it is really helpful for someone else to do the research and give direction when everything else is overwhelming. It is nice of you to help your friend.
Tracy
 
Thank you all very much, I really appreciate all the thoughtful replies. Codyclan, where is MGH? I have not heard of that one. Could it stand for Morgantown General Hospital?

GregK, I completely understand and will not push at all. I think perhaps that if I could help him find a clinical trial, suggesting that might be alright, but his ability to travel looks like it is going to be difficult.

And Vince, I think I will probably pass on your feelings about WVU, but gently, as the last thing I want is for him to become emotionally distressed about the future any more than he is already.
 
I am fairly certain codyclan meant Mass General in Boston. It is fabulous and people with ALS do travel from all over but if he does not have the major support needed for the trip not an option.
You can check clinical trials at clinicaltrials.gov ( search amyotrophic not ALS) worth checking every couple of weeks as there are a lot of things supposed to be starting up in the fall. You can narrow your search to open trials and the states that would be possible
 
Thanks, Nikki J, you are indeed an extremely helpful member! I will certainly check out these clinical trials.
 
Status
Not open for further replies.
Back
Top