1st visit to ALS clinic

[Hobbssy]

Tuesday is our first visit to the ALS clinic in our area. My partner was diagnosed in October 2024. He really isn’t looking forward to going. He has the attitude, what’s the use, to start drugs to prolong my life? I guess what I’m asking here is what can I expect from this visit? Are there any specific questions we should ask? We are both kind of in a daze and any suggestions would be greatly appreciated. This visit is only with the Dr., not the team.

 

[ShiftKicker]

Hello-

It's definitely a lot to take in. Have you seen the Resources section? It might provide some idea of things to expect, what questions to ask or issues to consider.

With regards to what to ask the doctor, it's hard to say, as every person's progression is different, and people have different goals and needs. Is this visit for an "official" diagnosis or further diagnostic testing? Or is this just a get to know your neuro type of visit? If this is not a team visit, definitely get that set up. Is it the clinic in London? If you folk are having to travel far for each visit, they need to make sure it's worth your while (as in, not just the say hello/have a brief chat), as travel and clinic days can be exhausting and a burden for people.

 

[Hobbssy]

Yes it is in London and we were referred by the neuro department at University Hospital. He is booked for a PFT and an appointment with one of the Drs at the ALS clinic. This will also be a 2nd opinion. Apparently once we have this initial visit, the Dr. Will travel to our town once a month which is 120 miles away. That sure helps as travelling is getting difficult.