Husband diagnosed Feb. 2017

[Suzanne27]

Hi, My husband was diagnosed with ALS in February 2017, but the signs and possible diagnosis have been there for some time. During last 2 weeks there has been a decline in his ability to stand and walk. Falls have been a problem for well over a year, but now standing and walking are difficult even with a walker. Any thoughts would be greatly appreciated. Also, what do you say to people in the community when they see the decline and ask what happened? Thank you! This is so overwhelming and I'm not sure what I should be doing or planning.

 

[lgelb]

Hi, Suzanne, welcome to the dubious honor of our club, and sorry to hear about your husband. Are you going to an ALS clinic in Philly? It sounds like your husband needs to get a power wheelchair order started, and they can help you get that underway. The Philly/S. Jersey ALSA chapter may be able to provide a loaner, certainly a manual chair, while that order winds through the system. Go to this link and scroll to Central/Southern Jersey.

Likewise, ask about a loaner Hoyer-type lift for when he can no longer stand, that will help you transfer him between bed, toilet, chairs, etc.

What you say may depend on who's doing the asking, and it is not easy to say at first, but some version of "he has been diagnosed with ALS and will not get better" or "he is not going to be able to walk any more" is the reality. Sometimes if you tell a few people in your circle who get around, they will do a lot of the telling for you. If you are members of any organizations, telling a few well-placed people holds true.

There is no stigma with ALS, as it is no one's fault, but you may find some people gather around you and help, while others drift away. That is who they are, their choice, and there is no controlling it.

It takes time to process this diagnosis, so I would focus on the immediate need of safely getting him around. Even if you have to buy a $100 transport chair from a drug store in the interim, he should not be using a walker (rollator, I hope?) if he cannot do so safely.

We will support you however we can, Suzanne.

Best,
Laurie

 

[Suzanne27]

Hi Laurie,
We are part of the NY/Northern NJ ALSA chapter. Emotionally it is hard to wrap my head around the need for the equipment you described...not yet!! I fear what may be next. I am still processing the diagnosis, sometimes denying it. I just wonder how the CALS manage to keep going. I feel sometimes like I'm stuck and can't think about tomorrow. Thank you!!
Suzanne

 

[affected]

Welcome to the place no one wants to be.

You are still in shock, it takes time to wrap your head around it and in some ways we never truly do.

Safety needs to become your focus at this point. I need to be blunt and warn you that PALS die from head injuries, or they sustain serious injuries and often these never heal properly and the person is left with awful pain the rest of their time. Please get to your chapter and get this sorted.

We will help and support however we can xx

 

[soonerwife]

So sorry to hear about your husband's dx. You have found a great place for support.

I am sure it's really hard to come to grips with when you PALS needs this equipment so quickly. Safety is the most important thing right now like the other's have said. Once you have gotten equipment for safety, just take one day at a time and put one foot in front of the other.

It is very overwhelming. That's what we are here for. Feel free to ask questions, vent or whatever you should need.