Dads first clinic visit

[Snowman78]

Dads first visit to an actual ALS clinic is tomorrow. The ambulance is supposed to be at the house at 10 am in the morning to transport him to the VA clinic in Charleston, SC. Hopefully the trip goes well and is very helpful for him and we get some helpful information. I have heard they are very good. I am sure the trip will wear him out though.

 

[MaxEidswick]

if it is like ours, all 8 disciplines will be there. make sure he records or gets someone to record his results (fvc, pinch,squeeze, et al) that way he can better track how things are going.

I was at my 4th clinic last friday, and am overall down 22% -- better than I had feared. of course you can't count on progression being linear, but one can hope.

 

[Snowman78]

I know they said a dietician, neurologist, social worker, and our pva rep would be there. I am not sure who else. My mother, my sister who is in town visiting, and myself are going with him. We will be sure to take good notes. Thanks for the input!

 

[MaxEidswick]

>My mother, my sister who is in town visiting, and myself are going with him

that's great! our clinic has ~30 patients, so we get to know each other.

 

[bigmark1954]

I know they said a dietician, neurologist, social worker, and our pva rep would be there. I am not sure who else. My mother, my sister who is in town visiting, and myself are going with him. We will be sure to take good notes. Thanks for the input!

There should also be a Pharmacy tech, Respiratory Tech, and a occupational therapist. My clinic is different from Max's, in that there can be 10-15 PALS there at a time...but no interaction between them. They place you in a room by yourself and the clinic staff rotates between the PALS

 

[gooseberry]

ours is like bigmarks...10 patients...20 min slots per morning or afternoon session. you see physical therapy, occupational therapy, speech, respiratory therapy, dietician, social worker, alsa, neurologist, sometimes nurse practioner or research fellow.

 

[Snowman78]

Thanks for the information! I am looking forward to it as I think we can gain some good information and help to care for dad. I just hope the trip isn't too hard on him. It is about a 2-2.5 hr ride down they said the clinic takes about 3 hrs and then a 2-2.5 hr ride back home. He hasn't left the house in months and is worn out just from taking a bath.

 

[MaxEidswick]

ours never takes less than 7 hours and then the houston rush. :-(

 

[Jeff Long]

I am looking forward to it as I think we can gain some good information and help to care for dad.

Frosty,
Our clinic (Duke) has a sheet they give the CALS so you can log the results, take notes, etc.
We have every one from the last 3 years' worth of clinic days and refer to them often enough that I can recommend you take lots of notes!
Good luck with the transportation issues and the clinic day.
Jeff

 

[Schmidhogan]

Max: down 22%! Not good. Work on that breath stacking....

 

[slopokahontas]

Take snacks. I wish I had brought a folder for all my hand outs, a blanket and pillow for my bum! We has to sit in one little room for hours while each specialist came in one at a time. Good luck!

 

[gooseberry]

Yes...water anf snacks..lunch if needed. You eat in between or while they are with you

 

[MaxEidswick]

>Max: down 22%! Not good. Work on that breath stacking....

about the same for me. had best breathing night last night since the pneumonia

 

[bigmark1954]

Take snacks. I wish I had brought a folder for all my hand outs, a blanket and pillow for my bum! We has to sit in one little room for hours while each specialist came in one at a time. Good luck!

My clinic has a well stocked snack table, drinks, fruit, candy and snacks.

 

[azwxman]

UAMC (Tucson) take note.