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ALS Clinics
Has anyone had success with an ALS Clinic for support and guidance? I feel like my husband is just a number to them. You go once every three months, they ask a bunch of questions, put everything in a chart and say come back in three months. I thought there would be more direction and coordination of what care is needed.
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20 Replies
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I’ve been going to my ALS Clinic for 13 yrs now. At first, like you I was disappointed that I wasn’t receiving the traditional “rehab & recovery” information like what we all expect from our medical providers. But, the hard truth is, there’s no rehab & recovery from ALS. However, I’ve learned how to “pick their brain” to help me maintain my health and strength. I wrote a detailed post here:
https://alsandwellness.blogspot.com/2021/07/1-thing-to-always-bring-to-als-clinic.html
The staff are knowledgeable in helping other conditions… stroke, MS Parkinson’s, etc., so tap into that knowledge and ask them how it can be of help to you too. Let me know if you want to know more about how I interact with my ALS Clinic staff.
alsandwellness.blogspot.com
1 Thing to Always Bring to the ALS Clinic
1 Thing to Always Bring to the ALS Clinic
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Excellent. I agree with you a 100%
Thanks for your words
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I attend clinics at both VA and private doctor (who diagnosed me). We go to one or the other clinic every three months, going back and forth. I have found the support amazing. While the examinations/questions are standard, all will answer questions and provide support. I value both teams! Now if only the pulmonologist at either location would join clinic it would save an extra trip.
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My husband had a similar experience with the ALS clinics. What really helped so much was having a great palliative care doctor who helped with every side effect and was available locally. I strongly believe every ALS patient should have a good palliative care doctor.
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I have had a wonderful experience with the Duke clinic. I go in with questions and they are helpful with giving me ways to adapt with eating, mobility, daily living, speech and more. They recommend big changes as needed, such as feeding tube and ventilator and don’t scare me with them before I need them . Everyone is friendly and helpful. When I have a concern I message them and get a response that day or the next. The only draw back is clinic days are long.
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Our clinic in Calgary is made up of a full team of ALS experts. Each appointment includes time with a respirologist, OT, PT, physiatrist, dietitian and if requested, a neurologist. A social worker is available if needed as well. My ALS society representative is also there each visit. We’re usually there for three hours. They are very supportive and encourage me to call or email anytime I have a question or concern. I guess we’re fortunate to have this available to us as I’ve heard too many people say their clinic isn’t helpful.
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dbvb12,
I’m so saddened to hear about your experience at the ALS Clinic visits. No one should feel like a number. I get that sometimes doctors do not have all the answers and ALS can be confusing, even to the specialist; however, you should feel confident in the team looking over your/pALS medical conditions. The team I see at the University of Miami is awesome! I’ve had family members see Dr. Miller’s team at The Washington University in St. Louis and they have wonderful things to say about them. Is there another clinic that you can go too? Is there anyway to share your frustrations with the team that may help them approach cases differently?
Amanda
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Here is a thought, could you reach out to the local ALS Association chapter and see if anyone can advocate on behalf of pALS? Perhaps a social worker can go with you?
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I’m surprised by your description of your ALS clinic. My ALS clinic, mayo clinic is excellent. I was diagnosed 18 months ago and have been to five clinics. The first two I did in person and the last three I have done via zoom.
Each of my clinics were in excess of five hours. I’ve never felt that I was a number I felt that they went above and beyond my expectations. In fact they have been advocates for me in helping me expedite my power wheelchair, obtaining a shower, commode chair, and providing me with a Hoyer lift
Without their help, I would have been lost. Reach out to me if you want to I can I can assist you.
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I have been going to the ALS Clinic in Fort Myers Florida since May 2023. I have been seen every 4 months. The The appointment is usually 4-5 hours. They are very knowledgeable and compassionate. Everyone is polite and caring. At anytime if I have a question or issue I contact them either by email or telephone. The response is very quickly returned. I have never felt like a number. Each encounter has been dealt with concern and compassion.
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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.
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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.
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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.
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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.
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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
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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
And they everything one would want out of a clinic. Online appointments with my neurologist last an hour. Together no stone gets left unturned!
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Sounds like you found a winner, Monica! Good for you!
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Bravo for advocating and not settling for appropriate care! Are there any specifics you can share?
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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.
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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.
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