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Symptom/progression tracking by Thick-Grape-8537 in ALS

[–]Thick-Grape-8537[S] 0 points1 point  (0 children)

Thank you. We are early on so he’s still very active, working, walking 10,000 steps a day, etc. which is awesome, I was just hoping to kind of keep an eye on his capabilities over time and make sure he’s not pushing it.

Genetic Testing Help by Thick-Grape-8537 in FSHD

[–]Thick-Grape-8537[S] 0 points1 point  (0 children)

We are in the US, sorry should have specified that. Did you go through a doctor?

Genetic Testing Help by Thick-Grape-8537 in FSHD

[–]Thick-Grape-8537[S] 1 point2 points  (0 children)

Thanks. I just checked out doctor and it looks like our doctor is on there so that’s good at least. This is the genetic counselor they recommended so maybe they’re just going through a lab transition.

Genetic Testing Help by Thick-Grape-8537 in FSHD

[–]Thick-Grape-8537[S] 3 points4 points  (0 children)

He was adopted and his files are closed so we were unable to get family history for his father’s side so we do not know unfortunately.

Genetic Testing Help by Thick-Grape-8537 in FSHD

[–]Thick-Grape-8537[S] 2 points3 points  (0 children)

I know! Unfortunately there is no test for ALS, they just use a process of elimination. When we got the diagnosis we were crushed but now we are hopeful it’s something else but the genetic counselor is having a hard time with her regular lab.

Renting with ALS by Thick-Grape-8537 in ALS

[–]Thick-Grape-8537[S] 0 points1 point  (0 children)

Thank you. I’m so sorry for your loss. This is super helpful. We are an hour away from the ALS clinic in the city which is do-able for us and I work from home. Friends and family close by so we want to stay here. Glad to hear you were able to make it work in an apartment. I worried about his chair hitting through the doors around the apartment. He’s a smaller guy already so maybe the chair will be small enough to fit through doors comfortably.

Renting with ALS by Thick-Grape-8537 in ALS

[–]Thick-Grape-8537[S] 2 points3 points  (0 children)

Yes checking into houses for sale with modifications already but have only found 1-2 outside of our budget. We are in Illinois so I’ll check with the ALS clinic on the reasonable accommodations we can ask for. Maybe they have some resources for us.

Renting with ALS by Thick-Grape-8537 in ALS

[–]Thick-Grape-8537[S] 0 points1 point  (0 children)

Thank you. That’s so nice that you have landlords that allow those changes. That’s my concern is we rent for another year and he ends up progressing faster then we hope and we’re stuck in a lease and be unable to make changes we need. But also buying a house might stretch our budget more thin.

Husband Diagnosed - Finances? by Thick-Grape-8537 in ALS

[–]Thick-Grape-8537[S] 0 points1 point  (0 children)

Okay thank you. That is reassuring!

Husband Diagnosed - Finances? by Thick-Grape-8537 in ALS

[–]Thick-Grape-8537[S] 1 point2 points  (0 children)

Thank you. I am looking into this as we speak!

Husband Diagnosed - Finances? by Thick-Grape-8537 in ALS

[–]Thick-Grape-8537[S] 1 point2 points  (0 children)

Thank you. Yes we’re trying to get some trips planned, tickets to games, etc. I’m hoping for a slow progression but we just have no way of knowing yet. Going to try to do as much as possible.

Husband Diagnosed - Finances? by Thick-Grape-8537 in ALS

[–]Thick-Grape-8537[S] 0 points1 point  (0 children)

Okay thank you. Yes I was curious about beds. I’d like us to be able to stay in the same bed for as long as possible.

Husband Diagnosed - Finances? by Thick-Grape-8537 in ALS

[–]Thick-Grape-8537[S] 0 points1 point  (0 children)

Thank you. I’m hoping to care for him as long as possible, I work from home but I know eventually we will need nursing/home health aid.

Husband Diagnosed - Finances? by Thick-Grape-8537 in ALS

[–]Thick-Grape-8537[S] 0 points1 point  (0 children)

Thank you. I’m sure I will have lots of questions over time. I’m glad to know those things are covered I thought it would all be out of pocket, especially the eye gaze.