Question about living situation

[Mike84]

So right now I'm currently renting, living alone, still functional and working. A house is available next door to my mother. I'm wondering if it would be a good idea to move there, that way family could help me if needed, rather than just moving in with my mom. I know I most likely won't live too far into a mortgage, but I thought maybe I could get a few years in then leave it to my kids. Is this unrealistic? Would continuing to rent be better in my situation?

I'm trying to be optimistic and think maybe if I could make it a year or two into this Nurown or some other treatment will come out and work.

 

[Nikki J]

Impossible to answer. how appropriate is the house? How much work would it take to make it handicapped accessible ? How able is your mom to care for you wherever you live? does she work outside the home? Is she physically well? Is her house handicap friendly? Who is going to do the upkeep on a separate home? Outside work like lawn and snow?
inside cleaning and maintenance?

 

[Clearwater AL]

Mike, I guess you are reluctant to share any information of your
path to a confirmed diagnosis like most all other PALS have.
Yes... it is optional. But it does help.

As you wrote....

"I'm trying to be optimistic and think maybe if I could make it
a year or two into this Nurown or some other treatment will
come out and work." ?? "

"maybe if I could make it a year or two into this..."

Have you been given that prognosis?

With some more info PALS and CALS could give you helpful
direction in choices for you to consider. Who and where in
the PA area would serve you best.

Most of all... Nurown or any treatment will be up to your
Neurologist who confirmed your diagnosis based on time
into onset, level of progression, where the onset
began and possible clinic follow up.

Generally we don't start a new Thread of something
that was somewhat addressed or referred to in the first.

 

[nona]

Al, I think you're being rather unwelcoming. When I started posting, no one grilled me on my diagnosis. We have moderators for a reason. .

 

[KimT]

Hi Mike,

Maybe this is a question you should ask your Mom. The first two things that come to mind are finances and availability of help. Have you decided to continue working? How far do you live from your Mom now? How old are your kids?

I planned to stay in my condo as long as I could but it was too small. I had a contractor/friend look at it and he thought I'd be better off in a larger place. I had just remodeled the year before diagnosis. I was also alone but my parents are long gone and I have no children. I ended up buying a very large condo with a friend. I had it remodeled so it is fully accessible. We split all costs and we've been friends for over 30 years.

When the time comes for a caregiver, I will hire one. That is my only choice.

I know there are so many decisions to make early on but, since you have family, they can give you input.

 

[nona]

I think it's important to remember that no decision has to be permanent. I have moved twice since my diagnosis. The first time was two years in, when I finally stopped working, sold my house in NH, and moved in with my sister in Arizona. When the heat and isolation wore me down after a year, I moved back to NH and live in a first floor apartment in an independent living community. I've been here over two years and I love it. You have to love where you live.

 

[Clearwater AL]

Nona, I did say it is optional. His choice.

ALS is a rare disease. Maybe some members might be
interested in his case being he is only 36 years old.

Countless times on the "Could this be ALS" sub-forum we
have given even more rarity to those having ALS in their
20s and 30s and the odds against it.

Being he is so young... his "journey" (as we used to call it)
now "path" could be informative to others.

The when, where, how and who again could be helpful.

And... oh yea, I was grilled. I've given when, who, where,
clinic I attend and the trial.

Ok, I'll do it... "Welcome Mike". Whatever... there.

 

[Sonne]

Stephen Hawkins was diagnosed at age 21 in his final year at Oxford. He lived with ALS for 55 years. Yes while that's very rare it is possible. I've had ALS now for over 10 years and am now 67. So a two year prognose is more common it is not an absolute. I believe the more content and satisfied we are in our lives the better lives we live. It's about quality not time and living situations do help determine the difference.

 

[KimT]

Mike's neuromuscular overturned his diagnosis. He does not have ALS.

 

[Mike84]

Kim I still have a lot of symptoms. Hoping this doctor is right. I'm gonna see one more to be sure. Is a negative EMG pretty accurate?

 

[Nikki J]

If you answered the questions I asked on your other thread we could give you better feedback

 

[KimT]

Mike, I would say yes if performed by neuromuscular specialist. That's not to say you don't have something and they need to figure out what that something is.

 

[Bestfriends14]

Mike, if you could please post your EMG report(s), as that will help the folks here answer questions for you and perhaps shed some light between the two reports. If you would like answers to your questions, that can only occur with all the information. Awaiting report from you...

 

[nona]

Deepest apologies to @Clearwater AL for coming down hard on you. Your sh** detector is way better than mine. I'm sorry.