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

[vzandt]

Going Oct.10. Last time was last Nov.

 

[Susan10]

We go every three months. And I think the visits are very valuable. It seems I learn something every time. I am limb onset. It took four doctors and about six months before I got into the MDA clinic. When I go, I see a full team not just the Dr. this includes respiratory therapy, nurses, dietitian, and occupational therapy. For three months I was able to use aloaner wheelchair from the MDA closet. Without regular visits, I would not have been able to do this. Maybe it's just because were only a year into this process, but I find a lot of educational and emotional support when my cal and I go. We also regularly attend the ALS support group sponsored by our clinic and MDA. There is really just as much value in these support groups as there is in our clinic visit.

 

[ruthiep]

Scott goes every 6 months. It's almost a 300 mile trek for us, so I'm pleased we don't have to go more frequently! That being said, reality is slowly setting in....although everyone at his clinic is amazing, there's only so much they can do to "help".

 

[ltbeauti]

I go every 6 months since my progression has been slow. I like the team approach personally and I am still ambulatory.
If It gets difficult to travel later I would opt for not going through the hassle, and try to do things through email.

 

[Sharks1967]

I've been going every 3 months but also see my GP normal doctor every month. My specialist appointments last about 10 minutes, most of which is him reading my notes on what's been happening since last visit which I type out on my iPad the night before. I suppose all he's doing is monitoring my progress. In saying that, he's a nice guy too which helps a lot.

 

[mthapa]

I haven't go to the neurologist since I diagnosed MND on 2003. I don't have resource to spend for nothing !

 

[momap53]

I'm going every 3 months for Clinic. I was going monthly for the Clinical Trial and had a brief visit with my regular Clinic Doc during the Trial visit. That was nice if anything had come up, he would take care of it during the Trial visit. It is getting more difficult to go (2 hours away) so am glad we're only doing every three months now. I see my local GP about every 3 months as well.

 

[JLRNL]

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.

A big thumbs up!