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ALS Clinics — Why Do You or Why Don’t You Participate?
A year after my diagnosis and 18 months after symptoms, I have attended my first ALS Clinic. I didn’t receive any “treatment” from the PT or OT or the neurologist. I’m on the fence about attending another (auto scheduled by the neurologist every 3 months) vs just having a one-on-one with the neurologist. I’m wondering if this is just a “follow me til I die” info gathering session. Who else attends and why? And if you’ve chosen not to attend, why not?
Cate
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22 Replies
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I have been going to my ALS Clinics ever since first diagnosed in 2010. I began with every 3 months and am now at 6 months apart (I’ve had no changes in the past few years).
Initially, I was surprised by the “palliative care” model the team was following: lots of empathy and suggestions for ways to make my life “easier.” Which I felt was leading and encouraging me to do less, move less and transition into a life of sitting. The words “rehabilitation & recovery” were never, ever spoken.
I decided to speak up, ask questions and show interest in my well-being – – along with voicing expectations – – just as a non-ALS patient would. Now, when I go there, the team is enthusiastic to see and learn about my progress and various ideas. They make helpful suggestions and respect my opinions and input. What magic words did I use? “What do you suggest I do to maintain where I am at right now?” ….plus, it helped that I began writing blog posts and articles about ALS resilience and attitude, that the team and my neuro regularly read and commented on when I was at their clinics.
Do I think clinics are helpful? Yes. But as a patient, you need to let the team know you are not ready for palliative care. They are a good resource (remember, they do help patients of other diseases with rehab) – – we just need to change their mindset. The clinics are also a good real-world measurement of symptom progress (at home, we tend to over or under- exaggerate how we think we’re doing) and they are a good sounding board for when “alternative or too-good-to-be-true” treatments are tempting me to try.
Here are 2 helpful articles I’ve written about my clinics. One is serious, the other humorous.
https://alsnewstoday.com/2017/11/28/als-clinic-the-one-thing-to-always-bring-with-you/
http://alsandwellness.blogspot.com/2015/11/theres-pill-for-that-als-humor.html?spref=pi
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I only attended one ALS clinic group. It was fine, but I don’t care to follow disease progression in participants. Palliative care is different than hospice care. Many people confuse the two. Mayo describes it as:
Palliative care is specialized medical care that focuses on providing patients relief from pain and other symptoms of a serious illness, no matter the diagnosis or stage of disease. Palliative care teams aim to improve the quality of life for both patients and their families. This form of care is offered alongside curative or other treatments you may be receiving.
Palliative care is provided by a team of doctors, nurses and other specially trained people. They work with you, your family and your other doctors to provide an extra layer of support that complements your ongoing care.
They help as best they can, but ultimately, it is you and your disease you have to cope with daily. I find care giving is just as, if not more important than ALS clinics.
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You are correct Walter – – maybe the word I’m looking for is somewhere between Hospice and Palliative….leaning more towards a hospice mindset.
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It’s fantastic advice from Dagmar. The article on ‘the one thing to bring’ should be read by every newly diagnosed pALS.
My experience in Australia was similar in that I felt like I was being prepared for death rather than maintaining where I’m at. That said, I think a positive change in mindset is fundamental in how we approach this journey we are on.
I have personally sought out a private team of healthcare specialists that are proactive and provide me with things to add to my daily routine to maintain my current health for as long as I can. I see them more regularly and in conjunction with the ALS (MND here) clinic.
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My husband and I think the ALS clinics are valuable for gathering, confirming or otherwise discussing issues and questions that have come up since his last clinic. At first, it was much more about waiting to see what the care providers were going to do for him. We quickly realized there were no magic bullets. We do think that each specialty has something different to contribute to his well-being and comfort. Our first impression was that his neurologist was going to be the driver. We don’t feel that way now (not a bad thing) and have more in-depth discussions with him about studies and new thoughts on the disease. The clinic manager has been invaluable to us in connecting Steve to other resources. We are asking more informed questions and focusing on what he can do to maintain his current strength and movement, as long as possible. Because of COVID-19 he’s missed a couple clinics but his whole team has been responsive to questions or concerns we’ve had during this time.
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I have had a positive experience at my clinic. The team is helpful and open. My PT is very supportive of my need to exercise while helping me find the right balance between rest and activity. My neurologist discusses, at length, any research or strategies to help me adjust and cope. The others, speech, OT, SocWrk are always available as needed. Most importantly I don’t feel rushed.
I am on a 3 month and whenever needed schedule. Video appts during COVID. They also respond by phone or email.
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It sounds like many of our forum members have had positive experiences when going to their ALS Clinics. I think the clinic staff do want to be helpful and put their training to good use. We, as patients should be open and share our expectations, be willing to dialog about the realities of those expectations and, make a good effort to follow-through with the advice given. We are building a long-term relationship… and it’s a two-way street 🙂
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I would only add that you don’t have to go every 3 months. It could be 6 or more if you don’t feel a need to see the clinical team. I was going yearly and now I go every 6months. The team tends to see more fast progressing patients so then need guidance if you are not in that category. Dammar is right on as usual with her guidance.
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I was diagnosed in June 2019 and attended my first ALS clinic in July 2019. I then went to the same clinic in October and January and switched clinics in March 2020. I was surprised when the new clinic offered me Nuedexta because it had not been offered to me before. I’m still able to talk and swallow solids and liquids which I attribute to the Nuedexta. Every time I go to the clinic I get angry because in place of effective treatments I’m greeted by future forecasts and underestimation of my current abilities. I’ve told all the providers that all I have to treat myself is a positive attitude and most of the providers do their best to reduce my positive spirit. But since I learned about Nuedexta, and get to bounce ideas off of the providers, and since the clinic I currently go to will be a participant in the Mass Gen clinical trial, I plan to keep going to the clinic. It takes me a day or two to recover.
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I have gone to ALS clinics at 2 different hospitals and wasn’t really pleased with either of them so I didn’t want to go back. I live with my mother and she said to me , ” Well, you have to go somewhere for follow-up care, and no place is going to be perfect.” Also I think it’s kind of ridiculous that there’s only one day a month that patients can even go to the clinics. The doctors act like they are so smart and sometimes I have wondered why they have no cure for this if they are so smart. I am disappointed that there is no cure. People who have ALS are really suffering a lot both mentally and physically and a cure is what would help them the most.
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I absolutely agree with Dagmar. I go to ALS clinic every 6 months as fortunately my ALS moves slowly. I always prepare my questions. I am big on following research and have been in multiple studies and drug trials. I enjoy the conversation with each discipline because I know what I want from them for information. I find I’ve read more of the study data than they have in some cases. I still go to a university neurologist between clinic visits on a 6 month interval also.
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At the ALS clinic I go to, there is only one day each month that pALS can have an appointment there. I was just wondering if this is the case at all ALS clinics or if this is unusual.
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Hello Kathy, great question! The ALS Clinic that I go to every 3-6 months has specific days each week set aside for pALS seeing the doctors, and there are specific days set aside for the people participating in research pALS.fALS, and pre-fALS. I believe they also have one day a week set aside to review cases and make plans. The doctor there also participates in forums and research collaboration.
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Thanks Amanda. I guess what I described is unusual then. I think they should give pALS more options than that. Maybe there’s only one day a month that the entire clinic team is available to have an appointment.
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Gosh Kathy, I hope it is not that limited. Could it be partially because of COVID?
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I don’t know. I will ask them, though.
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Wouldn’t it be nice if ALS Clinics were fully staffed and available 5 days a week – – just like a dentist’s office? But, drawing on my 30 years working in a hospital, I have empathy for the challenges of scheduling and blocking time for the PTs, OTs, dieticians, speech therapists, nurses and support staff. These staff see patients in the hospital as well as out-patients… patients whose appointments are limited by their therapist having to spend 4-5 hours at the ALS Clinic.
It’s a matter of give and take… and sharing… and understanding that every patient wants to be treated as a VIP.
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They should have more options than one day a month, though. I think that’s a totally reasonable expectation.
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Dagmar, good points. Sometimes I get a little tunnel visioned and forget about everything someone else has to juggle. The state of our country has really been impacted, especially those people who work with others in clinical, therapeutic and medical settings. Perhaps as we (hopefully) recover from the pandemic and as ALS becomes more known, we will see clinics become fully staffed like you stated. I’m always learning and growing 🙂
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When I was first diagnosed in April of 2014, I was treated at the Indianapolis VA ALS Clinic and loved it. I went every 3 months, sat in a room for 6 hours, and the providers came to me. My Wife (a retired RN) was really pleased with my care and the ease of scheduling. We moved to Florida 18 months after my diagnosis. I am now treated at the Gainesville VA, which does not have an ALS Clinic (although they are trying to get a Clinic started). Being in a non-Clinic setting, I have to set individual appointments with the Neurologist, Pulmonologist, PT, etc. The care is very good (per my Wife), but the scheduling is a real pain. We have discussed going to Tampa (4 1/2 hour drive) to get back in a Clinic.
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I was diagnosed in December 2020 (misdiagnosed for 3 years) attended my first ALS clinic in early February, met with everyone on the team and was fairly satisfied. Being new and still in shock I didn’t know what to expect. My doctor there referred me to Duke University ALS clinic for a 2nd opinion. Spent two days at Duke and was very very pleased with the knowledge, compassion and information we received. Duke is a three hour drive for us as compared to a 45 minute drive here, we go back to Duke after six weeks and then every three months. Fortunately both clinics are good.
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hi everyone i’m new can i join
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