Advice sought for ALS Clinic #2

[Tomswife]

Tom is meeting with the clinic Thursday, November 17.
My thoughts are:
- Tom's health 9/8 to now.
- make sure the request has been submitted for AMX0035.
- discuss Nuedexta, RX submitted? CVS does not have
- why is there a delay in getting wheelchair eval to Kessler
- why delay in responding to VNA?
- how will they do the rating scale now. The first was done as a verbal interview by an assistant. (In my opinion it should have been done hands on.). Since Tom cant speak how will they do it?
- need to discuss all the breathing assists, Bipap etc. Need respiratory therapist to conduct test.
- discuss PEG procedure, again.
- need rx order for lift

Opinions?

 

[Nikki J]

I am glad you are going to a new clinic. There is a sticky on second opinions under resources in general so worth looking over. They can not answer why things are not getting done. I don’t think they can check the am0035 status but maybe. Or can you call amylyx ? I haven’t dealt with them so don’t know However i would bring the form filled out with your part so if needed they can just resubmit. Just say we need xyz things done other clinic didn’t do it for all the things you list

the frs is a verbal interview not an exam thing. There is a specific training module I think. I know I have been to a study visit with a new coordinator and they had to get someone else to do it because they weren’t “ trained” maybe site specific but it is utterly normal to have a person other than doctor or np do it. I have had it I think well over a 100 times because of studies and do not believe it was ever from a doctor - not even a fellow in training. the frs was originally designed as a research tool. The truth is it is not the greatest measure of progression. You can be signpficantly worse without dropping a point or a small progression can tip you over in several categories and drop you multiple points. You and Tom know how he is doing. You can answer for him or they might have him indicate which category he is in.

I hope this clinic meets your needs. Make a concise timeline of his symptom/ progression etc. list your practical concerns and separately list any questions that are more clinical

 

[Tomswife]

Nikki and others. I am sorry for misleading info. My fault completely.

This is #2 visit with nypresby.

 

[lgelb]

I guess I'm confused -- were you not planning to switch to St. Barnabas? If you do the wheelchair order, BiPAP, and rx through NYP, it is going to be hard to disengage. That is why I said earlier, if you are switching, I would wait on everything you can.

 

[Nikki J]

Sorry I misunderstood!

 

[Tomswife]

We cannot change clinics at this time. RWJStbarnabas may take us for a consult in February 2023. And they are short staffed. One doctor for the clinic.

 

[Mary2]

This is off topic and very basic but when you mentioned your PALS needs help turning on his side...I meant to ask if you were making a sheet into a draw sheet by folding a sheet into a square or rectangle and laying it across the bed....so that you can pull on this...instead of tugging on PALS.

 

[Tomswife]

Mary. I did see a demo of the sheet turning method online. But the issue is just getting into the bed and me helping him by lifting his legs. He says he cant breathe when we do this. He used to sleep in the bed until he could not turn anymore. But we are at the clinic today so I will see what they advise.
I did get a power recliner and that is his place awake or asleep.

 

[affected]

You can try different angles of recline in the bed, having the bed as low as possible as he gets in, and lifting just one leg at a time and slowly.

Is he on bipap? (sorry I have to ask as I can't remember each persons details)

 

[Nikki J]

Hope it went better this time and you got some answers

 

[Tomswife]

We had a very good clinic meeting. We learned a great deal. We saw everyone on the team we needed to see. It was a very positive experience. - we learned that the reason Tom cannot lie flat and has trouble getting into the bed (breathing wise) is all bulbar related and not respiratory. His respiratory tests were very good.
- the PT spent a great deal of time with us. We tried exercises with PT and talked about what we can do at home. Excellent help.
- the nurse was very helpful. Explained the peg process he will have next week. It is the way it used to be done - GI via ediscopy placement. not the exterior poke from exterior.
- breathing therapist very helpful.
- we met with the nutritionist who will support us after the peg tube is placed.
- other meetings all went very very well.
We felt really good and under their care.

Then we came home....and Tom fell in the driveway! Our neighbor helped him inside. And we got takeout dinner.

 

[Nikki J]

I am so sorry Tom fell. Glad you had help- and dinner!

also very glad things went better

 

[Mary2]

Tom's wife...Glad you and your PALS were pleased with the clinic visit! Sorry your PALS fell. Good that he was able to go in the house and enjoy some dinner!

 

[Tomswife]

When Tom falls I cannot do much. We sometimes laugh and about 20 mins later using props he is back up.
He fell outside in the driveway . In the dark. He had his cane and was a few feet from walker. Entirely my CALS fault. I always meet him at the car door, but I was getting the walker. He did not hit his head. I ran next door and our neighbor had said he would help me if Tom falls. Neighbor is Army reserve.

Lesson learned...when you have a safe process that works, do not deviate.

Tom did not wait for me. And I was not at the car door. And he fell.

 

[Nikki J]

That is probably one of the most important things to know in the ALS journey. When something happens learn why and make a plan so it doesn’t happen again. Of course it is a moving target and what works now won’t work at some point in the future but all you can do for that is plan ahead. How lucky to have such a neighbor!