Does age affect progession?

[BarbieAlaska]

Hello,
My relative is 79 and undergoing tests to narrow down a diagnosis. I understand ALS may not have predictable progression. When I think down the road I am trying to think how to best provide safety and comfort.
What home safety issues should we address first. I have been thinking of bathroom, shower, entry in and out of the home?
I am sorry I am having a hard time asking questions. Should they sell their home and move in with a family member? It is hard to think about these things. I want to know how to think.
Also, where can I go to learn about the financial aspect. Medicare is her only insurance. Is there one person I can contact who can answer my questions?

Thank you.

 

[affected]

Hi,
I'm a little confused - your relative has been diagnosed or it is not certain yet?

At the top of the General Discussion forum are a bunch of stickies that will give you a really good starting point to read in the meantime.

Age doesn't affect progression at all except that an older person may have other underlying medical conditions that could make them already frail or otherwise unwell. Often though, regardless of age people with ALS were pretty healthy and active.

 

[BarbieAlaska]

Yes, after I sent my questions I saw all that. Thank you, I will go read.

 

[lgelb]

BarbieA, I am sorry to hear about your relative's possible ALS. I would contact the ALSA Evergreen chapter's patient care coordinator for Alaska, who is listed on their Web site. He will be more aware of the resources than I and perhaps help you work through some of this once there is a firm diagnosis.

Your questions have many layers to them, but for someone who lives alone, the options typically boil down to moving somewhere else or paid/unpaid help for the home, if it is or can be accessible for a power chair/Hoyer lift. It sounds like your relative has family in the area and that is all to the good. It is a lot to think about and so you may want to make a list as you go. There are stickies here about planning and equipment that may help. Once you are sure about what your family is dealing with, it might be time to sit down with the patient and family and talk about short-term and long-term options.

 

[BarbieAlaska]

Hello,

There is not a firm diagnosis yet. My relative lives in another state. For the past few days the shock has been great. I am a nurse and I understand what I read and I understand the importance of looking ahead. However, I find that often it is to hard for others to look ahead. I have been searching for info to help family members who will care for her. It is huge for them to read some of the info.

I thank you. I read the stickies and found the answers I needed. I will be able to pass it on as they need it.