Dad's first visit to ALS clinic is Tuesday

[st123]

Dad's first visit to the ALS clinic is this Tuesday. I have a long list of questions, most of which I assume I'll just be checking off as they provide information, but I want to be sure I cover everything I should.

FTD is on the list. I've discussed it with Mom and she isn't completely convinced that he has it, but I am.

PT and OT will be covered, I'm sure, but I have to figure out how it all gets arranged. Hopefully, he'll qualify for in-home care as it's getting very hard for him to take car trips.

I'm sure nutrition will be covered as well.

What I really want and won't get, is a good idea of what to expect from this disease and when. (The project manager in me just can't quit trying to put a timeline on this thing).

Suggestions as to what should be on my "don't forget to ask" list would be greatly appreciated. Thank you!

 

[Miss]

Sharlene,

Think of it as working your way down from head to toe.
head region - ask questions about speech and speech devices. Is there a need for one now? Does he need a BiPap for breathing? If not, get one. Studies show that ALS patients that start BiPap immediately have a slower progression of diaphragm weakness.Get his FVC number so you will be able to see the digression. Emotional impact?
neck region - how is swallowing? Have you already discussed the PEG. If not - do. Neck weakness? See about a collar.
shoulders - are they becoming frozen? If so, start PT immediately
arms/hands - trouble with grip, motion? Start OT immediately.
torso - trouble sitting up straight? recliner or tilt on a PWC
legs - knee trouble - neoprene braces, walker, wheelchair, etc.

Others can certainly help you add to this list, but you get the drift. We just sort of walked down Terry's body before each appointment. (My husband's started in his hands. Possibly we would have worked our way up if it had started in his legs!)

Good luck!

 

[kmendsley]

Good luck!

Can't think of any questions but I am sure others will give you input.

 

[Ms. Pie]

They can't and won't really give you a timeline on progression because everyone is different. Good luck Sweets!

 

[cervus]

Good list, Miss.

 

[st123]

Marta, I know they won't give me a timeline, thanks though, dear!

Thanks Missy. We'll try to walk through it tomorrow so we're ready for Tuesday.

We're off to the VA tomorrow for his coumadin check. I'll have to ask how we're going to do that going forward. I really don't want to drive to Saginaw every month just for that blood draw. Maybe the clinic will be able to help.

 

[st123]

OK, some days I can deal with this better than other days. "This" being the delay in diagnosis, not ALS. My sister took my Mom and daughter out shopping so I'm here alone with Dad. He was in his room sleeping, but just had a bad coughing fit and then cried for five minutes. He let me keep him company for a few more minutes, but then sent me away. How can he be this bad just a month after his diagnosis and before we even have our first clinic visit?

 

[trfogey]

st123,

Don't be surprised if the providers at the ALS clinic are too busy with doing their initial assessments to have much time for answering your questions. In fact, they may not answer much of anything at all during the first visit, since it is common practice in the ALS clinics to have a full review conference for each patient before deciding on what strategy to take with that new patient. The second clinic visit -- there will be time for lots of questions. Most likely, you'll be given contact information for someone at the clinic so you can ask questions by email before the second clinic visit.

You may be a project manager, but your father is not a project to be managed. He is a person who is going to have a very busy, emotional, and exhausting day. Don't make it any longer, more emotional, or more tiring with a long list of questions. Cut your list to about ten of the most important questions and save the rest for email. Both your father and your mother will appreciate it.

Just two cents worth from a PALS.

 

[st123]

Thanks for the advice, Allen. It makes sense.

 

[Ms. Pie]

Sharlene, He might be suffering the effects of Emotional Liability too which causes uncontollable crying or laughing. Evidently lots of people with MND have it.

 

[st123]

Yes, Marta, you're right. I've never seen him cry in my life. He has cried a lot the past few months. Most of the time, he seems more frustrated than sad, but tonight he seemed really sad.

 

[Ms. Pie]

I cry at the drop of a hat but I've always been like that. I'm sorry Sweet Shaelene.

 

[notgivnup]

Sending Prayers your way for your dad and all the family. Hoping all goes well on Tuesday. {{HUGS}}

 

[st123]

Thanks, Di

 

[st123]

Thanks, Marta. This is hardly the worst day, guess I'm just tired. Thinking it's time to get some office work done and head to bed.

Thanks to all, good night!