Please share your experience at ALS clinic - very frustrated!

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Cherise77

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Hi all! We’ve only been to our ALS clinic once to meet neurologist and clinic nurse which was two weeks ago.

During the visit we inquired about a couple trials my Dad may be interested in as well as treatments Riluzole and Edaravone. The Neurologist and Nurse said they could give us no advise or guidance with trials and tried to talk my Dad out of taking either Riluzole or Edaravone. Said there was little evidence that either had much impact on slowing progression.

After leaving clinic we had some follow up questions which we sent to the nurse regarding vitamins that he’s taking and she passed on email to dietician who said there is no proven benefit to any foods, vitamins or supplements taken with ALS. She recommends not taking anything.

My mom is crying and devastated that they’ve given us nothing at all to try and have said to just do nothing, no treatment, trials or vitamins.

I’m confused as to if this is everyone’s experience at their ALS clinic and if it is why can’t they recommend anything for the patient other than just waiting for symptoms to progress? I understand it’s a terminal illness with no known cure but what’s the problem giving a patient a little bit of hope and positivity? Taking vitamins and eating heathy and having hope should be something that’s promoted with any illness. What is the harm to the patient?

Thank you for your advice and letting me vent.
 

ShiftKicker

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No, just that particular one. I am so sorry. They are very conservative in their approach to care for ALS patients. I recommend you create a care team of your own with providers that you trust and who are willing to think a bit outside the box.

You are not obliged to use the ALS clinic exclusively for your dad's care. You can use them for access to things like braces/mobility aids, the social worker (she's outstanding and proactive), regular neuro visits to track progression (not mandatory!) and the SLP. For things like prescriptions, nutrition, physio, etc, find people convenient to you and who are more proactive in care for your dad. His GP can totally coordinate his care.

I am so sorry you've encountered this frustrating and upsetting situation. I sympathize with your dad.
 

affected

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That's awful, I'm sorry you had this experience :(
 

KarenNWendyn

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I’m sorry you had this experience.

The truth is there is no cure for ALS at this time, but I’m sure you already know that. However, there are many things a person can do to improve comfort, to compensate for loss of function, and even to slow down the disease progression a bit. A good clinic will emphasize these interventions.

At the very least, they should be assessing functional status and determining which adaptive equipment would help your dad — eg. wheelchair, AFOs, feeding tube, BiPAP, communication aids, hoyer, etc., etc.

If they are not doing those basic assessments and interventions, then your choices would be to find another ALS clinic or let your primary care physician run the show.

I have found this forum a great source of information. I find that if I go into the clinic armed with specific questions and requests, then they can serve me better — e.g. telling them you want to consider a specific therapy or asking if it’s time for BiPAP, etc. Ideally the patient and family shouldn’t have to take the lead on these discussions, but it sounds like you might have to should you continue with this clinic.

As far as the dietician giving you the cold shoulder about supplements, now you know her MO. You could do a search on this forum about supplements and try some you think might give your dad some hope. The dietician doesn’t have to be involved.

Best of luck.
 

captaingary

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I'm really new to this. Only diagnosed a month ago. Actually, never did get a FIRM yes it is ALS Because there is no definitive test for it. Moved to Florida 2 weeks ago from the Midwest. Supposed to be my retirement. Made an appointment with Mayo clinic in Jacksonville. Couldn't ask for better care. They use the "team approach". Met with the Dr. first then spent the next 5 hours meeting with all the rest of the team. Answered all the questions I could think of and have phone numbers and email addresses of every team member if I have more. I have to drive 3 hours each way to get there and it is well worth it. I strongly recommend you find a clinic that is ALS certified.
 

ShiftKicker

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Welcome, gary! I am so glad you had such excellent care. It's a bit different for Canadian clinics. The next closest Canadian clinic is a 13 hr drive away. Or a cross border visit to Seattle.
 

Cherise77

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Thank you all for your supportive words and advice. Really helps to hear that this wasn’t everyone’s experience at their own clinics. Unfortunately, I guess we don’t have a great clinic here.

I agree with you Shiftkicker we should find our own nutritionist and physio. We’ll use the clinic for just follow ups with the neurologist to track progress.

My Dad’s GP has been good. He’s is doing research now into ALS for him as I guess he’s never had a patient with the disease before. Seems like he’ll be helpful though.

It’s too bad in BC there is only the one ALS clinic.
 

affected

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Where I live (in rural Australia) we don't even have an ALS clinic unless we were to travel interstate. We only saw the neurologist there anyway the 2 times we went, and a different one each time, so stopped going.

We built a team here and it meant I had to kind of coordinate it (instead of a clinic doing that), but we saw who we needed when we needed, rather than once every 3 months seeing everybody all in one huge day.

A very local clinic would have been awesome, but I wouldn't hope the incidence of ALS increases so we would get one either!

I hope you can find a good mix. Many PALS stop going to clinic anyway once they have received most equipment as the amount of energy it takes can be too much to be worth it after a point.
 

ARCG

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Yes, even though our clinic isn't far and has a good reputation, the very long days were too way much for my Pals and we probably should have stopped going a while ago. You will find you need to form your own team, be your own advocate and do your own research, Some things that have helped, like Nuedexta, I had to call the clinic and ask for myself after doing research. This a great site for information and support. Don't look too far ahead, but far enough to get things in place before it becomes a necessity.
 

tripete

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i have gotten more here than ever from the clinic. i believe because i would not take their meds they dismissed me. they give obvious non helpful advise. the only help was with some equipment.
 

Firefighter58

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Cherise, too bad you were treated the way you were, l find the clinic that I attend to be one hundred percent I also find the program that I was put on to be very good. I don't know if my progression or lack of it is due to the program or just good luck, but it makes my feel good. In the years I have been on this program I have never had a cold, a head ache or any aches or pains,I feel good and I am happy.
Al
 

Tedstehr

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Cherise,

I go to the GF Strong clinic too. My experience has been very good. But the simple truth, as Karen stated, is there is no cure. They do not want to give you false hope. I have tried Edaravone and Riluzole. I stopped Edaravone after about six months. It was just too disruptive and I couldn’t say there were any benefits. In fact, I have noticed no change to my progression since I stopped. I feel I may be progressing more slowly since stopping but it would not be fair to say that. Most likely I am on a plateau that would have occurred regardless. I only took Riluzole for a few months and I stopped that too.

What the clinic is great at is helping with day to day techniques and equipment that helps PALS live a better life. They work with the ALS Society and their equipment loan program to help.

You and your mother will go through different stages of ALS grieving. For me, the first was I am screwed, take it like a man and face what happens. And don’t bother with any external equipment/aids. Then Edaravone appeared to be a real help so I was all in. I thought it could be a cure. Hallelujah! But as things went downhill and I lost the ability to walk I got very depressed.

Finally, with the help of powered wheelchairs, I am back on my feet again (metaphorically) and I enjoy rolling around the neighbourhood. I now understand how aids can help live a more fulfilling life.

It is not easy, but I hope you and your mother can find a way to live in the moment and provide comfort and love to each other. I would never say ALS is an easy disease, but I have seen people spend the end of their life in terrible pain or simply die of a stroke or heart attack with so much left unsaid.

Please let me know if you would like to talk...
 

jethro

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@cherise1977 as i said somewhere, doctors are (incredibly sounds) humans, butchers are butchers... everywhere you go.
you should know that even caregiver can not help to als affected like he can do to himself.
i dont want to talk to doctors. actually, they are technicians, they do babinski refles, some do mri, some do emg... no complete interdisciplinar expert. that position is left for you.
asked my neuro to write me receipt for edaravone. he:"khm... whta? ed ervon? i think he worked here as i remember. dont understand you"
me:"ok, ever heard of mn-166 (ibudilast)? he:" who is last?"

no comment. god, help our souls
 

lgelb

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Jethro, while I gather you haven't had great interactions with physicians, I don't think it's fair to say that PALS have to go it alone, even without caregivers.

Health care systems and resources vary. Undeniably, many P/CALS will be better off with their pre-ALS physicians or others in the community, outside of the ALS clinic setting.

Best,
Laurie
 
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