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Reply To: ALS Clinics

Alan Larrivee — Mon, 08 Jan 2024 18:46:53 +0000

I have never felt like a number at the clinic I go. I dare say maybe it’s the best ALS clinic in the States. It’s Metropolitan General Hospital in Boston. Most of team are the same folks at the Andrew Healy ALS clinic. I feel like everyone there from the top down the parking lot people treat me like a friend. The care is impeccable. They do in fact treat ALS although they do other diseases. I see a full team at each appointment,PT, OT, respiratory, speech, and neurology. If I have questions an email is answered quickly.

Reply To: ALS Clinics

Monica — Fri, 05 Jan 2024 19:35:54 +0000

Honestly, whatever moves the needle toward improved function and movement I keep asking for. I now alternate my clinic visits with online Synapticare visits. Synapticure has this mentality. I would check them out.

Reply To: ALS Clinics

Amanda — Fri, 05 Jan 2024 18:58:28 +0000

Bravo for advocating and not settling for appropriate care! Are there any specifics you can share?

Reply To: ALS Clinics

Dagmar — Fri, 05 Jan 2024 17:35:38 +0000

Sounds like you found a winner, Monica! Good for you!

Reply To: ALS Clinics

Monica — Fri, 05 Jan 2024 04:38:41 +0000

I go to what is considered one of the best clinics in the Chicago area, Northwestern Medicine. I am less than thrilled with my doctor, and it is very difficult to switch practitioners. I had to advocate for physical therapy and speech. They only focus on palliative care. I had to research and be quite proactive to find out and get into their Healey drug trial program. Now I also do telehealth through Brian Wallach’s

https://www.synapticure.com/

And they everything one would want out of a clinic. Online appointments with my neurologist last an hour. Together no stone gets left unturned!

Reply To: ALS Clinics

Roman — Fri, 05 Jan 2024 01:06:57 +0000

I go to clinic every 3 months. In El Paso, TX., its small facilities but the personnel is great. They help me to obtain authorizations of my medicines (riluzole, radicava,relyvrio), also a electric wheelchair , they have records of my Wright, ALSFRS, respiratory values, answer all my questions and always I receive an advice. They understand my situation and be compassionate with me.

Really I am Thanksfull with my clinic

Reply To: ALS Clinics

Lisa Whittaker — Fri, 05 Jan 2024 00:53:03 +0000

I 100% agree. My husband was diagnosed 9/26/2022, and the first appointment with the ALS clinic Vanderbilt Nashville was Feb 3, 2023. We were just a number literally they put a number sign around his next and called him by his number, they asked questions, checked boxes and pushed us out the door to the next person, it was such a horrible experience. In June 2023 we drove to Baltimore John Hopkins ALS clinic wonderful experience, they cared and treated us with such compassion. Unfortunately, Bob has Bulbar ALS and it progressed so quickly he is on hospice now, unconscious and unresponsive. I promised him I would stay involved with ALS I want to be his voice and fight for better treatments, better medical personal and when I say better treatment, I don’t just mean medicine. ALS is a horrible disease as we all know and there is so much not talked about. I want to be a part of bringing more awareness.

Reply To: ALS Clinics

Reese — Thu, 04 Jan 2024 23:59:19 +0000

I loath being ranked on the ALFS-r every 3 months, it’s not helpful and is depressing. Same goes with the FVC. I stopped the spirometry testing, and I cancelled attendance at my last clinic. They’re nice, but all you get are the 3 R’s for recommendations to live longer. I watch Dr Bedlack’s presentations on you tube on reversals and refer to his ALS untangled for the supplements I take. I can’t figure out why the FDA approved orphan drugs for ALS and the supplements or other stuff that are shown to slow progression (like Ji Wu Li patches) are not recommended by the clinic- I feel like I’m on my own to figure how to survive as long as possible. I must admit they helped with my NIV for sleep and my ankle braces – that did make life easier. But nobody knew Nuedexta could help swallowing or speech, I had to discover this on my own thanks to Dr Bedlack.

Reply To: ALS Clinics

David Rothschild — Thu, 04 Jan 2024 21:17:30 +0000

I have felt the same way about one of my two ALS clinics. I think their value is in keeping an eye on your respiratory function as that can be supported and give you better quality of life but otherwise, these clinics are disappointing if they don’t put you in a trial or can’t seem to give you good ideas. I am a physician, and in general many of the younger, newer physicians, seem to have forgotten how to talk to patients and how to listen and examine patients and this is quite disappointing. I agree with some of the other writers that you need to have a set of questions, and to be very involved in your own care . You must educate yourself, and this newspaper does present some interesting facts and information about studies that you can ask your doctors about. This is a horrible disease and we need all the help we can get not just we’ll see you in four months.

Reply To: ALS Clinics

Heide Miller — Thu, 04 Jan 2024 20:52:24 +0000

I visit my ALS clinic in Toronto annually. That is a 2 hour plus drive for me and why I go only once a year. A second visit is done virtually. I’m by nature a problem solver and many years of doing Yoga mean I am able to ‘listen to what my body needs’. So often in my interaction with the doctors there, I simply get confirmation that what I am doing is appropriate – but the fact that they are able to to confirm gives me great confidence and ease. And the fact that they are available at any time to address my concerns is invaluable.