What to expect at clinic?

Hi all,

My dad was diagnosed with ALS a little over three months ago and we have our first clinic visit in Houston this Friday. My dad, me, and my three sisters will be with him. Can anyone let me know kind of what to expect? Thank you so much and I appreciate all the help!

Aimee Robertson

My guess is the Houston clinic, with this being your first visit with them, will do some testing to confirm the diagnosis for themselves. This would probably consist of drawing blood, a routine neurological exam testing reflexes and coordination and an EMG/NCV.

If they confirm the diagnosis, they will tell you what can be expected as far as disease progression and all that they have to offer in the way of support at the clinic.

Aimee, you could call the clinic coordinator and s/he should be able to give you an idea. Bring all your questions written down and make sure they are answered. (I favor the "pushy but polite" approach.) The first time I went, I had two sets of questions-- the first related to diagnosis, and the second a set for "if the diagnosed holds". One of you -- and not your Dad!-- should be the note-taker -- there is likely to be a LOT of information. And you might want to bring water & snacks -- don't know how that clinic runs, but my visit was several hours and we were awfully glad we had packed something to tide us over.
Your Dad is lucky to have you. Hope it goes well!

Yes, he had all those tests and it was confirmed. Now, he goes to clinic every 3 months and this is our first one......they say it's like a party....we shall see Thank you for the help! I completely agree with the pushy but polite approach! And, yes, we will do lots of note taking for dad. Thank you again for the help!

My ALS clinic is actually run by one of the docs who diagnosed me. Prior to the clinic, the RN who manages it, went over all the available different specialist available to see that day. I was given the option of who I wanted to see. The different specialists at my clinic were Respiratory Therapist, Physical Therapist, Occupational Therapists, Social Worker, Dietician, Neurologist, and Neuro Psychologist. The cordinator would schedule my day according to how many different specialists being seen in the day, trying to schedule each one after the other to make the day as easy as possible.

Hi Aimee,
You can expect a very thorough neuro exam, a breathing test, history taking,you will meet some of the team
who will follow you every 3 months-nurse,MD,PT,OT, speech, social worker, nutritonist. There will be forms fill out,esp if you
are lucky enough to be in an MDA supported facility. My ALS clinic in SF encourages all family to attend the 1st and subsequent visits
so it is great that your sisters can attend too. Good luck, you have come to right forum for advice and support.
blessings,Pat

Thank you Pat! I feel very blessed to get to help my dad. As much as it hurts me to see him hurting, I feel honored to journey through this with him. There won't be a clinic visit without me......I pray we make it through several!

Sue beat me to it but I'm going to say it again: Bring a notebook... have any questions you can think of in advance written down. If you think of any while you're there, write them down. As you get the answers, write those down too! In the long run you'll be glad you have your own little reference manual to refer to!