ALS Clinics - When to stop going

[brooksea]

When do you finally decide it is no longer worth it to travel the distance to the ALS Clinic? Is it after you've obtained all of the necessary equipment needed, or can this be handled by the local GP that is willing to assist you?

My husband's GP is willing to "treat" him, but requires total control over meds and everything - no clinic involvement. She's great and my husband trusts her. (Can you believe that? He trusts a woman!?!)

We just aren't getting the warm fuzzies anymore with the clinic, although we love the regulars we see. My husband feels like a lab rat and is frustrated with trials that he has participated in: OK you feel better, but sorry, no can do. Wait on the FDA! or Zapped you good Mr. J, sorry that MRI was so strong. See ya next time...etc...

 

[joelc]

I'll forget the trusting a woman thing and respond to your main question. LOL.

I have not seen a neuro for over 2 years or been to the clinic in more than 1 1/2 years.

If you have a good GP then there is no reason to go to an ALS clinic.

That is my 2 cents on the issue.

 

[indigosd]

Cj, I am sure that you know our situation with ALS CLinic vs our Family Dr. Here is what we did and why.

The ALS Clinic charged our private insurance $1600 for the WORTHLESS 4 hour team meeting. Who cares what his reflexes are or how much strength he has lost? Honestly, they did absolutely nothing for us. NOTHING! MDA will pay for it once our private insurance is gone. THEY WILL PAY $1600 to the ALS Clinic but will NOT pay anything if we go to our private Dr. whose charge is $65.00. I guess that is a mute point now that they [MDA] are significantly reducing assistance in 2010. It is a 2 1/2 hour drive across the desolate Prairie for us to get to the ALS Clinic and then 2 1/2 hours back home. It is less than 5 minutes for us to get to our Family Doctor. Our GP knows us as a family, is available 24/7, will come to our home when Web is no longer able to leave, is extremely supportive and encourages us to try ANYTHING that I think will help or make it easier for us-no problem writing scripts for us AND BELIEVES IN PEG's and TRACHS! Our ALS Clinic would not give us a referral for a PEG and told us that they would NOT give us a referral for a trach if Web decided that was what he wanted! "A trach is TOO expensive and toooo much of a burden to the family and it doesn't prolong life" was the exact statement that slithered past her lips. We are definately in a caring relationship with our GP, local Clinic and local Hospital. I have not officially severed the professional relationship with the ALS Clinic because I never burn bridges. :] We are happy, grateful and appreciative for having our GP on this journey with us. He happily writes any referral for any service or consultation that I think we need. It is such a stress reducer to not have to deal with the "ALS CLINIC"! I guess if they were offering us some treatment it would be different. I keep the door open with them just in case there is a possibility for new treatment that our GP would not have access to-go with the GP :] hugs, Kay Marie

 

[DgtofTNfan]

CJ,

My Dad got to the point where the 1 1/2 hr drive to ALS appt was too much and we learned that our ALS clinic re-located and had not completely re-assembled the entire interdisciplinary team so we opted to work with his GP and call the ALS nurse as needed. This eased some of the stress for Dad.

Maybe you can cut back on the q 3 month frequency (that was the routine at the ALS clinic here) and go as needed or every 6 months? Probably the critical information I wanted from the clinic was what is new and effective for the treatment of ALS and I just did not get the feel that there was more to offer. You are so involved and informed you may know as much or more in that regard than the team!

Dana

 

[BethU]

If your MD is good and up to the challenge, and you're getting nothing worthwhile from the clinic visits, it sounds like it's not worth the trouble.

Because of my HMO, mY PCPs are all residents (under the supervision of full-fledged MDs), who change every two years when their residencies are up. My current one started last July: I'm the first PALS he's ever seen. My previous one admitted cheerfully she "knew absolutely nothing about ALS," and I got the impression she wasn't interested in learning much. I figure my role in the equation is to educate them as much as possible in case another PALS ever wanders into their practices.

I stick to the clinic for expert feedback about when to get a leg brace, wheelchair, EL meds, a PEG, etc., etc. Last year, my PCP wrote referrals for hospice for both my husband and myself; the clinic people had a fit, since I did not yet have the necessary equipment to live independently, and wouldn't be able to get it on hospice. My husband's kidney expert also nixed the idea, as he felt aggressive treatment would improve his function, and it did.

Each situation is different. Trust your gut instinct.

 

[John1]

I agree with Beth; each situation is unique. In my case, I live in a small province and the closest ALS clinic is in Halifax, NS, a 900 mile drive one-way including a seven-hour 100 mile ferry ride. I do have a good neurologist and good GP. I have not seen my neurologist in over six years except when I bumped into him at a restaurant and have seen him a couple of times at ALS fundraisers. My progression is slow and most of my medical needs are not directly ALS related. Even if I were to go for bipap or trach, I'm not sure I would go to my neurologist because these are not his areas of expertise. I would likely ask my GP to refer me to a pulmonologist. We are fortunate in Canada that medical care is universal and the constant bickering over insurance is not an issue. We go to the doctors that we want and are most suitable for our needs. I will likely have my neurologist refer me for FVC testing again in the next year or so. I will do that by phone.
-John

 

[trfogey]

A GP who demands total control of therapy and no clinic involvement when dealing with an ALS patient sounds like like an egotistical disaster looking for a place to happen, from my point of view. I'd be interested in the reasoning behind such a demand for control and what training the GP has that makes her evaluation of his conditions and needs better than those of the ALS clinic doctors.

My experience has been that my other doctors were more than happy to push all of my care off to the doctors at the ALS clinic. They didn't want the responsibility of dealing with ALS in any form or fashion except to observe and learn. If one of them had made me the same offer that your doctor did, I'd have been absolutely stunned and instantly suspicious. But that's just me.

Personally, I'd find another GP, if it were me or one of my loved ones. I can't think of one good reason to put up with a "my way or the highway" attitude from a GP.

My two cents.

 

[BarryG]

My ALS clinic is invaluable to me because without it I would not have access to anyone who has much, if any, knowledge about ALS. Sure it is a hassle and is tiring to travel 3 hours each way but for me it is worth it. I talk to my wonderful SLP often and we are working together to get improvements to NextUP, the speech program I use on my netbook.

Like others have said, it is a personal decision based on circumstances and I am so glad that I don't have to worry about what insurance covers what.

 

[pmbenb83]

Thanks for asking this question CJ. I guess I just "assumed" Eric had to be seen at the ALS clinic. I have also felt that they were just following him and not really much else. We both like the clinicians at the clinic and appreciate their knowledge, but if this can be managed closer to home when things get too tiring, that would be wonderful.

Thanks again.
Pam B in Va

 

[GlenBrittle]

I use the best of both worlds.

My GP has ALS experience, and makes house calls (bless her heart). Her office is in the hospital, and lately , I choose to not go near the hospital. Too many sick people there.

My team at the ALS Rehab Center, is awesome. Even though its more than an hour drive each way , it worth every moment I spend there. I go every 3 months.

 

[fec139]

I don't know about anyone else, but my GP is 5 minutes away. However, I wait 2-3 hours in her waiting room among coughing and sneezing sick people, only to be put in an inner room for another 30 minutes, and when she comes in, I'm lucky if I get 5 minutes with her. She knows diddly about ALS, and for the first two appointments she refused to talk to me; instead, she asked my aide all the questions as if I were a baby, until I wrote a note to her that said "Please talk to me. I am an adult", and she said "Oh, you can hear?!". Anything related to my ALS, she says "Ask the neurologist". She still sometimes talks to me slowly, and with vocabulary befitting a 5-year-old. Thank God it's only a 5-minute appointment, or I would end up bopping her on the head.

My ALS clinic makes an appointment and as soon as I arrive, they put me in a room where, over the next 3 hours, I am visited by each part of the team. I never have to sit in a waiting room full of sick people, and they treat me with respect. I don't know about anyone else here, but the choice is a no-brainer for me.

 

[Zaphoon]

I stopped going to the clinic (4 hour drive) because they'd spend 5 minutes examining me, shrug and say, "Well, there is something wrong but we don't know what..."

I'm getting too testy these days to put up with that nonsense. For Pete's sake! I drive 4 hours and this guy spends 5 minutes and shrugs...

I have elected to continue to be seen by the V.A. neuro. He seems to have more on the ball for me. He is only 40 minutes away and does a more thorough exam. No shoulder shrugs, either!

I'm done...

Zaphoon

 

[BethU]

For what it's worth, I've read that "outcomes" are better for PALS when seen by a multi-disciplinary team of specialists. Of course, I think the outcome is pretty much the same for all of us eventually. ...

After my last hospital visit, my GP sent an OT, who sat down and started working out an exercise plan. She said, "You've got to strengthen those arms." I typed, "Not with ALS, it's range of motion only when limbs are involved." She said, "But, I do exercise plans for all my ALS patients," (if she'd ever seen one before, I'd be surprised).

 

[tajmom]

I'm fortunate in that my local neurologist had a family member with ALS so he is not only knowledgeable on both a professional and personal level, but also very compassionate. BUT I continue to visit the ALS clinic also. I like that I can sit in one place and see all the specialists at once; beats driving around town for multiple appointments, and everyone is on the same page. They are all so helpful and friendly and as others have mentioned, they really know their stuff when it comes to ALS. Plus they give us lunch. I go about every 4 months. Our drive isn't too bad, about 1.5-2 hours. If it were longer, maybe I'd be inclined to go less often.

 

[Zaphoon]

Okay, they did validate my parking for me but I'm not driving over 4 hours just so I can park my car cheap! I can do that sitting in my driveway and validate my own parking:-o

Zaphoon