First visit to ALS clinic with husband

[Kelly5538]

Hello

My husband has his first AL clinic at Sunnybrook this Tuesday. I am looking for advice on what kinds of questions to ask and what I should bring, etc. I don't want to get home after and think of something that I should have asked them about.

Any advice is welcome.

Thanks so much!

 

[Kelly5538]

Of course I meant ALS. Silly autocorrect!

 

[Nikki J]

Did you read this yet? https://www.alsforums.com/forum/general-discussion-about-als-mnd/30260-after-diagnosis.html

And this? https://www.alsforums.com/forum/do-i-have-als-als/30138-getting-diagnosis.html

I am not sure which stage you are in

 

[DreamsEnd]

And if the above links don't answer your question to know what you should ask, don't be afraid to call after to ask. They should give you a list of contacts that you can call directly. Also take a notebook and any medical records you may have.

Sherry

 

[gooseberry]

Snacks and water..a sweater too. A notepad and pen, a friend , a lot of patience and headache meds. It is quite overwhelming the first couple of times. I would ask type of onset, be ready to talk about things your pals can and can not do or has trouble doing. Watch everything for a couple days because your perspective will be different. For instance, I notice slurring of speech when my pals is tired. He does not. Write it all down because you will forget things.

If your pals is a vet, most likely the alsa rep at clinic will help you get set up with the VA.

Good luck! Steph

 

[Gembead]

We took a voice recorder with us so we could go over the details later.
Love Gem