Just not feeling it

[bigmark1954]

I cancelled my last clinic 3 months ago, and now I am cancelling my appointment next week.
I just don't wanna go! This is such a struggle overall, I just am not feeling it. MY progression has not been significant. Maybe a little more choking and swallowing issues. Spasticity and dexterity loss are a little more prevalent.

I will make sure my meds are current, and call it good. They can't do anything about my symptoms, so I don't need to hear it again.

 

[Atsugi]

We did the same thing. Once there was nothing the clinic could do for us, we stayed home.

 

[JimInVA]

I hear you, BigMark1954!

At our March clinic, last year, the Doc told Darcey that based on her breathing numbers and progression he was reasonably convinced that she was within her last 6 months and that he probably didn't need to see her again. For us, clinic meant closing our business for the day. But with each visit, we always felt as if we'd come away with enough positive things (new information, some "feel good" item, etc) to justify the time. We went again, 3 months later, in June.

At the June clinic, none of the participants had anything new to offer us. It was more of a "great to see you, again" type of thing. Even the breathing test wasn't performed... as the therapist was out sick. I asked if someone else was going to do it and was answered, "it really doesn't matter any more at this point, does it?". Upon leaving that June clinic, we realized that we had reached the point that we didn't need to return again. We had no more questions or needs... they had no more suggestions or answers (to questions we didn't know to ask). The next session was in September... but Darcey was to be at end of life, then. So... with nothing more to be gained, we quit clinic.

We're now firmly into 2016 and still making our days as good as we can. But we're doing it. And though great for its time (and we really DID value early sessions), Clinic is no longer a necessary or helpful entity. So yep... BigMark... I get it...

Jim

 

[affected]

We only ever went twice - for diagnosis and then 3 months later. 3 hour drive for us to get there, and then there was traffic coming home and it took nearly 5 hours to get home.

If you have a good health team close to you for needs, then you can always make a clinic appt at some time if you have some reason you want to see the team there.

Great to hear your progression remains fairly slow Mark!

 

[Nikki J]

As long as you are getting what you need and can get your meds sounds like you are doing the right thing!
If you ( or anyone else) is told you need to be seen for meds ask about telemedicine. My clinic is now doing this for people who live a distance. For locals who are not able to come to clinic ( as some with vents) one of the RNs makes home visits

 

[notBrad]

I'm shining mine as well. It's a 7+ hour drive one way and an over night stay and we don't take away enough from it to justify the effort, expense and wear & tear on me.

 

[ShiftKicker]

Your wellness is the absolute goal here- so if going to clinic has no, or even negative, benefit (fatigue, lack of "new" treatment or info), you are right in making your decision. They're there for you, but if they haven't got anything for you, no point.

 

[bigmark1954]

Thanks for all of the comments. I felt like it was just another thing that I'm not doing that I should.

I feel a little better about it now, and for me it is the right decision.

 

[affected]

Mark because we had no local neurologist we ended up seeing our GP for regular or urgent stuff and a Physician instead of a neuro. He was seeing around 14 other PALS at the time and was a highly skilled doctor and incredible communicator. He has taken a huge interest in ALS and is working with our MND NSW, even looking at a possible local clinic being established.

Our GP was also very interested in working with us and learning.

We also were registered with palliative care early, so the nurses were in touch with us weekly and they would work with our GP giving advice and he would take their calls on matters as valid. So we had a great team, we had an OT that came regularly to us as well.

So you find the best care where you can locally, and sometimes it's more about how well they are looking after how you want to handle the disease, than in attending a clinic on their schedule.

I'm glad you spoke up as this is an important topic and you should have the right to run things your own way. Sure every PALS needs to learn about ALS and take good advice, but attending clinic is a personal choice to some degree.


Tillie

 

[Ells]

With you on this Mark. I rarely go to clinic (only go if and when I want to ) as it's just same old same and a pain in the butt!

Having said that, I have an excellent GP & Community Nurse.
As long as you're well, you call the shots.

Take care,
Ells.

 

[gooseberry]

To me clinic has lost its benefits for us. Steve is seen everyother month at the va but several members of the team. Still, he wants to go to clinic just in case they can change his outcome

 

[frankb]

Have participated in two medical trials conducted by my ALS clinic and each trial covered just about everything, if not more, as did clinic visit. Also, the trials provide me a "good feeling" about doing what I can to potentially help our PALS who follow us. Clinic visits were very important in the early months following diagnosis since we were trying to get every bit of information that we could possibly get and always hoping for some "good" news. So, if one gets needed help at the clinic please keep going. Otherwise, what is the point? I must say, however, that I do miss the personal contact with the loving and caring staff at the clinic, although I still remain in contact via email. - - -can't wait until another trial comes along that I qualify for ! !

 

[Trixie80]

I just got ripped a new one by my family for cancelling my appt. apparently they feel they should make that decision. I disnt have any quesions for the drs and the benefits dont outweigh the emotional toll and physical effort it takes to go.

 

[Atsugi]

I just got ripped a new one by my family for cancelling my appt. apparently they feel they should make that decision. I disnt have any quesions for the drs and the benefits dont outweigh the emotional toll and physical effort it takes to go.

Sorry you're getting guff from relations. I'm sure they mean well. Just tell them that I said "the PALS gets whatever the PALS wants!"

 

[Michellesews]

I don't blame you. We broke our neck to get to a VA appointment by 9:00 yesterday, only to be told the appointment had been cancelled. They had called to tell us after we had already left for the VA. It was a miserable day since getting him in and out of the house is a major problem still. They are supposed to begin installation of the lift on Friday.

The neurologist he sees at the VA does his visits over the computer.. A program called Jabber. Right now I've been screaming about a Hoyer lift, he has fallen so many times. Supposedly that comes Thursday. My neighbor has been so good to run over and help me get him off the floor but I know that gets real old.