Planning for renovation

[Sher S]

Hello. My husband was diagnosed with ALS in summer of 2022. It began in both of his hands and also affected his speech. He has steadily progressed to a lot of difficulty eating, talking and using his hands, but has shown no signs in his legs. I worry about upsetting him by planning for an issue that isn’t here yet, but we do not have a full bathroom on the first floor of our home. Our stairs will not be able to accommodate the addition of a chair lift, so if/when he is in a wheelchair, we will need to remodel and add a downstairs shower to the 1/2 bath. Is there anyone who can describe the progression to the lower limbs after bulbar and upper limb symptoms?
Thank you for any shared information. I hope to be able to learn and share what information that I gather along this new journey.

 

[lgelb]

Welcome, Sher, while sorry to hear about your husband.

It is very wise, if you plan to stay in your home, to get going on the shower. The odds are very high that he will lose function in his legs, and that when his legs are first affected, it will be more likely months than years until he loses the ability to climb the stairs/walk at all. And a full bath downstairs can add to the home's value even if that is not the case.

He is less likely to be upset if you share your thoughts, and talk about ALS-related decisions early and often as a couple/homeowners. It is when people think things are sprung on them, or they are being excluded because of their illness. that things get more dicey.

To the extent that he may be in denial about his legs' becoming affected, it boils down to "hope for the best, prepare for the worst."

Best,
Laurie

 

[Doing My Best]

I agree with Laurie it's important to start on this quickly. I would also suggest you ask your local ALSA to come out and look at the house and give you suggestions for the remodel/bathroom addition. I had already paid for some preliminary designs when it occurred to me that ALS might have particular needs different from or in addition to standard ADA requirements, and asked someone from ALSA to come out and review what we were planning. Their advice really changed our plans and what we've ended up with is working very well. By the time all is said and done it will probably be many months before your new bathroom is done, so it's not too soon to start.