can you get through this w/o going to an ALS clinic

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Kim C

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JUst wondering if anyone can get through this without going to an ALS clinic? we have an appointment with an ALS clinic in two weeks but mom really doesn't want to use the hospital associated with this clinic, should the need ever occur. She would rather go back to the neurologist and have her coordinate, if she would, the journey through this hell.
 

ottawa girl

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Not so long ago, all PALS were sent home to die. So I think you can get through it without the clinic. Your neuro can help you - but typically, they are not always up to date on absolutely everything a PALS requires. The ALS clinics I've heard of are generally excellent.

Your Mom should go at least once before deciding she'd rather be treated elsewhere. The clinic helps the entire family. The PALS, first and foremost, is in charge of his/her care. In Ottawa, I decide which professional I will see on a given visit and I'm apprised of those who ask to see me. I have learned so much and above all, they help me and my family, stay ahead of the progression as best they can.

In my opinion, your Mom would doing herself and her family a big disservice by not taking advantage of all an ALS clinic has to offer.
 

skikaz

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I agree with ottawa girl, go at least one time to the clinic, then decide. A lot of people doubt the need of attending these ALS clinics, and afterwards most of them are glad they did. I am.
What most ALS clinics have is equipment to loan out to those that can not afford them. Even if you or your insurance are going to buy the equipment, the clinic will try to loan you what is needed until the new equipment arrives. For example, the clinic here loaned me a power-chair and 6 months later I received a new power-chair from the VA. Those 6 months I was able to go out and do things instead of being stuck at home.
 

sadiemae

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Going to Clinic does not mean she can't still see her regular doctors. And her regular hospital. Also, a clinic us the only place where she can participate in clinical trials.
 

hjlindley

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I absolutely agree she should go to the ALS clinic at least once. As this disease progresses the multidisciplinary approach will be of great use. I sit in one room and see the neurologist, physical therapist, the occupational therapist, the nutrition consultant, the social worker and the respiratory therapist. Can that be coordinated in the community. Yes. But understand this is an unusual disease and its progression and its presentation. Only at an ALS clinic will she find a neurologist who primarily can help you know what to expect. Once she's there, and has that information, then she can make an informed decision. Hope it's not too far drive. I only have to drive an hour.
Hollister
 

patrick123

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I have been going to to the ALS clinic for every 3months I am well monitored. They are multi disciplined and help with just about every issue you have. I am on Diaphragm Pacing System study and that can only be at the clinic. Just take one day at a time and find your path there is no right path or wrong path
 

BrianD

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I also agree to go at least once. Get the business card or contact information from each of the professionals so you can still ask questions between clinic visits, or if you decide against continuing them.
 

cervus

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I agree she should go at least once. Also important to get in touch with your local ALS Society. Both will guide your mum and family through this "adventure" as my husband called it. Take care. Yasmin.
 

Katie C

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Kaiser doesn't offer an ALS clinic in Northern California but has one neurologist who specializes in ALS and does a wonderful job of coordinating/referring various specialists and even running a support group. So to answer.. yes, it's possible, but not as convenient and you may find that convenience (and the time saved) are worth it.
 

ValleyMomma

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I hate the ALS clinic. It's depressing quite honestly. I'd much rather do physio at other places. Only reason you need an ALS clinic is if they are the only ones offering the service you need. Many times you can get the services elsewhere.
 

ottawa girl

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I must be lucky at our clinic. It's the opposite of depressing. Interesting, the way appointments are scheduled, I have rarely encountered another ALS patient. The Ottawa team is uplifting in deeds and words.

Too bad the Vancouver clinic is so different. While one can receive services elsewhere, one must be cautious as few professionals actually understand the nuances which are ALS.
 

affected

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We also aren't going to any ALS clinic now, went twice and decided 3 hours driving when there is no traffic just isn't worth it. We get all our physio, speech pathology etc locally and are now with a Consultant Physician who has an interest in ALS and is only 40 minutes drive.
 

John1

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I live in a small province which doesn't have an ALS clinic so I've never been and don't really know what I'm missing. My neurologist is excellent and my pulmonologist and family doctor all coordinate. I try to stay on top of ALS related issues myself that I feel may help and all my doctors have been supportive in implementing them when they feel they agree they would, or might, be helpful. These have included items like taking the HIV cocktail (not recommended in hindsight), getting Botox injections for spasticity, discussing the baclofen pump, etc.

One advantage of not attending a clinic is that it has forced me to educate myself on ALS. If I had the option of attending a clinic though, I would.
 

rictak in IA

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We went 3 or 4 times, and while I felt I was learning new things that could help along the way, my wife felt it was too depressing and time consuming. 3 hour drive + overnight in a hotel (probably impossible now that she is 100% Hoyer) + Meals + 2 days of lost work time.

In the end she probably was right, they weren't giving us any more useful info than we can get for free from our ALS assn.
 

FightingAttorney10

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ALS clinics are worthless, they try to prescribe Rilutek which is another worthless drug. Your better off buying your own MIR spirometer and taking care into your own hands, just my opinion.
 
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