ALS Clinic Visit

[JohnnyMags]

Well we went to our 2nd ALS Clinic meeting yesterday (5/20) at Temple. Talk about good news it turns out my wife doesn't have ALS or any neurological disase ........... Back to reality that last sentence isn't really true. In our various doctor and clinic visits it's been my dream that they would tell us that and I just wanted to type those words one time even if it is nothing more then a dream unfulfilled.
I am still unpacking everything we talked about at the clinic. As soon as I formulate questions, which I will have for sure, I will post them here. I asked for a copy of the EMG they did and I was told I can get it after Friday. I will post it here if and when I get it. Then hopefully those of you who know how to read them can tell me my wife doesn't have ALS. (That is a joke I'm afraid that ship has sailed)

 

[Serenity]

I am so sorry Johnny, to you and for your wife's diagnosis. I have lit a candle 🕯 for all of us suffering, to give us the strength to carry on.

 

[Nikki J]

Clinic can be overwhelming especially early on. Take time to recover and relax. Sometimes reading the notes on the portal can be helpful in clarifying questions ( not always as some clinicians are better at documentation than others). Of course we will be happy to try to help with questions too

 

[Momto2Kitties]

I have created a binder that includes these tabs and items:

* Basic Info - PALS’ Full name, DOB, diagnosis, and diagnosis date; CALS’ name, address, and phone #; insurance info; ALS clinic info and names of all providers; PCP name and info

* Questions and self-reported function scales to share with the ALS Care Team; answers acquired at each visit

* Discharge plans and post-visit instructions

* Contacts and instructions for DMEs, tube-feeding, and nutrition

* ALS United contacts and info, including events, chapter programs, loan closet equipment, list of FDA-approved drugs, PALS’ and CALS’ Bills of Rights, etc.

* Insurance plan details (coverages, deductibles, and max out-of-pocket expenses)

* HSA contributions and expenditures

* Other ALS resources and various websites for things like a Living Will, Durable Power of Attorney for Healthcare, and a list of questions to ask your PALS when discussing their wishes for Advance Care Planning

I find it extremely helpful to keep a running list of questions with spaces for answers, and bringing to clinic visits the binder and a small notebook to record things like appointment dates, weight, O2 level, BP, and other info received during our visits. Dave and I also use the portal to communicate with his providers between appointments.

Perhaps something like this could help you and your wife to feel a little more in control and less overwhelmed while on this challenging journey.

 

[JohnnyMags]

Wow you are incredibly organized. That is a good system of which I will try to use myself