Please suggest questions for 1st ALS clinic visit

[taratune]

My brothers first visit at the ALS clinic is tomorrow. We would appreciate any insight into preparing for the appointment. What should we expect? What questions should we ask? Is there anything we should bring with us?

Thanks for any help you can offer.

Tara

 

[sharonca]

I go for my third visit with my neuro tomorrow. For my first visit I didn't really have a list of questions, but took lots of notes. I was seen by the neuro, a respiratory therapist and a PT. You'll want to write down what the RT says on the issue of breathing capability, and depending on where the symptoms started - get advise of what to do next from the physical therapist. Since I am leg onset I was given a Rx for carbon fiber ankle foot orthotics. They are great! Also if it were me I'd take along documentation on the lithium study and see if the doctor will give you a Rx for Lithium.

I have had a slowing in the progression of the disease since beginning lithium.

Good luck with your visit.

 

[taratune]

questions for 1st ALS clinic visit

Thank you so much for your insight. Since I am sick today my sister will be taking our brother to his appointment. I ask her to take lots of notes and to get copies of any assessments or reports that she can get. How often do you go to the ALS clinic? I do not have the Lithium stuff so we will have to save it for the next appointment or try to arrange something by phone later. Also what is the spreadsheet you refer to?

Thanks again,

Tara

 

[sharonca]

As for me - I go to the ALS clinic at UCLA every 3 months. I went today and it was a very good visit. Saw the neurologist, RT, PT, OT and also gave blood for a study they are doing their to compare blood on people with ALS. I was FRS 41 in December (at diagnosis), 38 in January, and back to 41 today. Thanks to lithium I think.

I actually called in Feb to get Lithium and had it prescribed by my GP with my neuro's approval.

Hope all went well with her appt today.