ALS EXPERTS

[lgelb]

For clarity, I cast a vote against Bedlack, based on what multiple PALS have recounted to me privately. Kim cast a reputational vote for.

There is much more to any pretense of ALS artistry than pubs, I'm afraid.

 

[Doing My Best]

sbstrum, I was interested in your mention of Don Cleveland at UCSD. I had never heard of him although my husband has been a patient at the UCSD ALS Clinic for 3 ½ years. I assume that's because he is a researcher, not a clinician (and I see he is in the molecular/cellular medicine department, not neurology), but I imagine the ALS Clinic neurologists are well aware of his work. The Clinic itself is excellent and makes a number of clinical trials available to its patients. Thank you for sharing what you're learning about various expert resources, and I'll be interested to hear what KO's experiences are as she starts reaching out to them.

 

[Doug Frazier]

I'm going to suggest a hybrid approach. As you well know, your approach is right for almost any disease. Get the best heart surgeon, etc.

However on the medical side, that approach won't yield any different result with ALS. There are only 3 drugs approved for ALS and two of those were not approved in Europe because they likely don't do anything. We ALS patients are choosing drugs hoping they will give us a few more weeks or months. Of course, clinical trials can't split hairs this small. Every ALS clinic doctor knows these drugs.

On the procedure side, there are feeding tubes when we progress to the point of not eating. Then there are tracheotomy and laryngectomy when breathing and aspiration risks are the issue. These definitely extend life, unlike the drugs, but how long is unknowable because many patients die of non-ALS causes that become more likely because of ALS (decreased activity, etc.)

I have a feeding tube and got a laryngectomy in July. I went to Mayo Clinic in Jacksonville, Florida and I live four hours away. They have a comprehensive ALS clinic. Dr. Oskarsson was great. The overall ALS team was great. Like any team effort there were some standouts and one average member but overall it was great. I let them set up my breathing equipment supplier, feeding tube formula suppliers, wheelchair, etc., and all that has worked great. These suppliers are very responsive because they know Mayo is behind me. Mayo Jacksonville has hundreds of ALS patients at any given time.

The only downside is that on major procedures, her local doctors will not want to and in my case, refused to, even take out my laryngectomy stitches.

There are some great hospitals in St. Louis. One of them is bound to have a comprehensive ALS clinic. Staying in state solves all kinds of issues with setting up suppliers across state lines. One call to your ALS Association local rep can give you the complete rundown. If she is near there this solves even the later issues by getting all care there. Don't get hung up on the clinic not offering the research function. The odds of her hospital curing ALS are slim. She needs all the other functions.

Here is the hybrid approach. If she has to drive a long way for a clinic, do everything there except for procedures. I asked all my local doctors if this would cause an issue later and they all said no. No doctor wants to admit this is true but it a fact with US healthcare. They don't like these prestigious hospitals stealing lucrative procedures.

Know that going to Duke versus Mayo or any of the other clinics will not find you a miraculous artist that can meaningfully impact ALS longevity outside the known tools. What they can bring you is experience with many more patients, better supplier setups, etc., that small places might not be able to replicate.

So, keep it close if possible, if not do the hybrid approach.

One caveat, your approach comes back into play when considering more complex procedures like a laryngectomy for example. You want someone who does a lot of these. My doctor does 100 a year for example. But there will be someone in St. Louis with that experience.

The Les Turner Center for ALS at Northwestern may have the single best site on the web for ALS so I imagine they have a first rate clinic as well if that is doable for her. Plane travel becomes difficult later on so I suggest keeping it to a driving distance.

Hope that helps.

Doug

 

[Mana]

Dr. Bedlack is my husband’s doctor. We go toDuke ALS Clinic, which he runs. You can check out their web site, watch some of his videos on YouTube, and go to ALS Untangled to learn more about him. He is quite outstanding in the ALS community and totally lives up to the hype in person. He is as humble and compassionate as he is brilliant and we are very grateful to be where we are.

 

[steve613]

sbstrum, I am the physician husband of a PALS and my initial approach was to run around the country based on publications and reputation. At the moment, we are much happier at a community hospital ALS clinic than the University ALS center, where the key ALS guy is never in, has no clinic hours, and the clinic at the community hospital is much more comprehensive, thorough, responsive, and amazingly better plugged in to the research trial we are in. So I second the suggestion that the ground team in a well run ALS clinic locally may well trump the academic superstar experience, when it comes to ongoing care.

 

[Mana]

We have personal experience and I strongly disagree with the idea that there is ANY pretense to Dr. Bedlack. He's warmly present and available to us and to everyone else I've spoken to who goes to Duke. He is dedicated to promoting research and to helping all current patients live the best life possible.

 

[Clearwater AL]

Well, that's your experience. I'm glad you also apparently know several others who
have ALS that go there. The ALS clinic visits I have gone to... we were not at any time
in a group were we could chat with each other. We'd be in separate rooms and
departments, different times that day. I do know three Neurologists who have
declined participating in Bedlacks' promotions, conferences and meetings.
One even commented that Bedlack is a big self promoter and seriously question
his ALS reversal findings.

( I've had 1:30PM, 8:30AM and 10AM appointments.).

Your experience with Dr. Bedlack is fortunate for you, maybe it's been on some
of his better days. But, as Igelb wrote above... it hasn't been that way for others.

Maybe I live in recluse. I only personally know two people with ALS... one I
see at Wal Mart pharmacy occasionally and one from my days at the casino.
None personally from my ALS clinic visits. A lot of people know me and Ann,
none of them know anyone else with ALS. It is a rare disease.

But we all know of someone with Alzheimers. I believe a major break through
for that disease will give an insight to ALS also.

 

[Nikki J]

I think this thread has run its course and the op has not been here for 2 weeks.

People have very different experiences even in the same clinic and different personalities may bond or clash. This is true on the professional side as well.

I am closing the thread as it has veered off course