How often do you/your PALS visit his/her neurologist/ALS clinic?

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rosec

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Joined
Aug 2, 2012
Messages
330
Reason
Lost a loved one
Diagnosis
11/2009
Country
US
State
CA
City
Costa Mesa
My PALS was diagnosed almost 3 years ago. He got his feeding tube about 18 months ago. Initially he was asked to to come to the clinic once every 3 months. When we go, his vitals are taken, his breathing (FVC ?) is measured, then his neurologist or the RN (a very fine RN) checks his arm/leg strength. For the past year or so he has been asked to come every 2 months. He is not keen on going that often. His main reason is that there is nothing much they can do, so there is no point in enduring the hassles, like my having to take time off from work, and the general disruption of his routine, etc. We average about once every 4 months.
 
It has been over a year for us. Too long of a drive and once you have all the equipment and information, it isn't really necessary in our view. The only reason in my opinion to go is for clinical trials, and for us, the window of opportunity has passed.
 
My husband and I quit going to clinic over a year before he passed, as there was nothing they could offer to improve his quality of life. Why go through the hassle for both of you if there is absolutely nothing they can offer to help?!?

Now, you also have to consider his wishes for life sustaining procedures, such as a trach.

We switched to the local Internal Med doc. She was able to prescribe meds to control various symptoms and it was less of a problem than dealing with our clinic. She was then familiar with his situation in order to suggest local hospice at the end.

Good luck to y'all!
 
Thank you so much. Now I won't feel guilty about not taking him to the clinic more often.
 
We've been a year since last visit. Going Oct.10. He mostly wants to see his physical therapy people. The doctor doesn't really do anthing.he told my lar "ive been treating als patients tor 30 years blab blab blah..I'm important.blab blab." Lar says "yeah. How many did you save ".
.my husbands funny:)
 
we have decided to stop going unless something comes up...they just document his progression and he leaves miserable and depressed..takes weeks to get ove it.I can call if i need anything.
 
Very early on, we simply had no use for the neurologist anymore, and so we had palliative care people visiting the house, instead. I met with each one before they entered the house and told them basically: The only thing we need is physical comfort and emotional happiness, so that's your mission for this patient as soon as you step inside the door. And I didn't let anyone in who wasn't ready to make our lives happier or easier in some way.

I think that was an important thing to do, and successful.
 
I see no reason to go to clinic unless something has signifigantly changed!
 
I missed the last 2 appts ironically was sick for one, didn't have transportation for the second)... so my NP came out last week to see me, check on my situation, and check my breathing. MUCH easier than going in! I also don't really feel the need to go in unless there are changes to deal with... and I also have my bloodwork done via the Dex trial.
 
once we got all our stuff--we only only go now once a year. It is a huge undertaking for really no medical care (basically). I hubby needs something, the neuro office is great about scripting over the phone.
 
I feel better now too. Glad to hear others feel the same as we do
 
3 months, my Mom's progressing rather quickly, so there has been significant change each time.
 
We went every 3 months. It made my husband feel better to go. We had a FABULOUS neurologist. His grandfather died from ALS, so he was very understanding. I don't think we would have gone that often if it hadn't been for that.
 
sadly so true Sadiemae re the 'window of opportunity'. I think regular visits are more about either 'medical accountability' or more the neurologist to study/monitor i still search though for any news regarding latest drug trials etc ... and a part of me does not give up on that -but somehow i think it is too late - there is so much more money/resources available and put into research in the states.
 
We have been struggling with going every 3 months as well. It is getting more difficult to go every time. It will be 4 months between visits this time due to not getting the appointment set right after the last visit. Even though Dave is pretty set up with equipment, I'm always afraid if we don't go, there could be something he needs that I don't know about. It's hard because I want to do the right thing, but most of the time they are not much help. This forum is helping with that too.
 
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