Pittsburgh, PA

[KissJ]

Anyone here from Pittsburgh, PA? If so, where are you going for help with this monster, ALS? Any suggestions, input, or helpful tips for support in the area?

 

[KC2U2]

These from the ALS Association website:

Allegheny Neurological Associates
420 E. North Ave
Suite 206
Pittsburgh, PA 15212
Medical Director - Sandeep Rana, MD
Phone: 412-359-8850

University of Pittsburgh ALS Clinic
Suite 810, Kaufmann Building
3471 Fifth Ave.
Pittsburgh, PA 15213
Medical Director - David Lacomis MD
Phone: 412-692-4920

 

[KissJ]

Thank you. I should clarify... My husband has ALS and was diagnosed very recently. We went to Pgh. for a second opinion with Dr. Lacomis. So, we are familiar, but since it is all new, I was just seeking feedback about how things are going....tips to cope, etc. Thanks!

 

[ROXIESB]

Hi, I am from Butler PA and my Doctor is Dr. Lacomis. From what I understand he is the Dr. to go to in our area for ALS. I have been to cleveland clinic and really liked the Dr. there but decided I did not want to travel that far. I like the people i see at the clinic appts. They have been helpful. But this is an overwhelming disease and I don't feel we can ever get enough help. My ALS began with leg weakness. I am currently having some breathing issues as well as choking several times a week. i am now going to quit my job. I will faze out over the next two months as I train my replacement. Breaks my heart to have to quit. What is your husbands situation?

 

[KissJ]

Thank you for your input!

 

[KissJ]

My husband had a hip replacement a year ago. It was very invasive with a huge scar and long recovery. He hasn't been the same since. His first symptom was cramping in his hands. Then, his hands became weak. He now has muscle wasting in his hands. His next symptom was a drop foot. And, he started falling. We thought it was from the hip replacement. The falling got worse, and he was weaker. So, we saw two doctors. The second after testing, re-testing, and such told him he had ALS. We then went to Lacomis for a second opinion. He confirmed the ALS.
My husband is also going on disability from work now. We have completed the paperwork for VA benefits, and Social Security.
He seems to be maintaining, not progressing except for somewhat in his hands.
Did Lacomis offer the drug trial to you?
God Bless!

 

[ROXIESB]

Yes he did but I was not eligible. If i recall correctly it was due to my FVC level.
I too had foot drop early on. My right leg is useless and my left is progressively getting weaker. Originally my hands and arms were not affected but now they are. I have a power wheelchair now and that has opened up my world. So much to be grateful for and yet it is so sad. I seem to cry every morning when i realize i still have this and what that means for my day.
It is interesting that your husband had a big surgery before he contacted ALS. I did too. I had gastric bypass one year and a panniculectomy the next. I can't help but wonder if one of the surgeries kicked something off in my system and ALS started.

 

[KissJ]

Our doctor told us prior to recently he wouldn't have considered surgery as a trigger. But, he said he is seeing it more. But, any stressful situation can trigger anything! My husband also had horrible stress at work with the economy as it is and he is in finance in a large corp. so it is hard to say. Stress can come in many forms.

 

[KissJ]

Anyone here from Pittsburgh?

 

[Al]

A bit slow around here on weekends.

AL

 

[notme]

Here are a few tips (and I didn't read all the replies, so pardon any repeats)

Get needed equipment sooner rather than later--such as a PEG if he's decided to use one.
It's much easier to learn to use the equipment before it's needed--so start getting things early--most of the loaner closets in larger metro areas can help a lot with getting things he'll need while fighting medicare and all that.

ALS is an auto-approval for SSDI and medicare goes into effect quickly--not the standard 2 years most have to wait. Oops, just read he was a Vet. That will make things easier on you--they will even help with a vehicle once he needs one for transport--but I understand they can be slow--so again, sooner rather than later. ALS is a presumed service related condition if he served 90 days active duty (I believe that is the time frame) Even if he doesn't need a wheelchair yet--he likely will (unfortunately) make sure you get a GOOD one through the VA. Think of things like lifting and reclining chairs (other PALS will give more input on this if you need it)

Some PALS are resistant to use aids until they just have no choice--It's better to prevent injury than to react to it. I'm not even diagnosed officially--but am not allowed to walk without a walker because I fall too often. Men (sorry guys) can be worse than women on trying to do more than they should. At the very least--he's going to want a rollator walker (so he can sit if he's tired) I've read of PALS here that try to walk much longer than they should--and horror stories of falls.

Assuming his voice is still with him--some choose to do voice banking to keep their voice "alive" for loved ones and for their speaking systems when/if they become necessary. I've read many posts by PALS that wish they'd done the voice banking.

If you have specific questions--or if he does--generally, someone here will know the answer or where to go to find it. Great people here that will support YOU and HIM.

Take care and welcome to a forum I'm sorry you needed to join at all.

(I tend to ramble, but hope you get some useful information from my post)

 

[KissJ]

Notme, I appreciate your kind post. I will take all into consideration. You make some very important points and they are well stated enough that I read this to my husband. It is comforting to know you and others are here for support. Thank you so much!