"Probable" ALS--what do I tell people?

[ilgal]

After being told about 10 months ago that I had had a small strolke and sharing that info with family and some friends, I have now seen 2 other neurologists, including 1 at an ALS center, and been told it wasn't a stroke and have a diagnosis of probable ALS. Only my husband knows that thus far. I don't know what to tell daughters, parents, other family, friends, and co-workers. Probable--I feel like the girl who cried wolf. So should I just keep quiet until I see the MD again in 3 months and he see how things have progressed? Even though my speech is becoming harder to understand and my arm and hand are getting weaker. And I don't know what to do about trying to sell our 2-story house and moving to something smaller and on one level or making any other plans. "Probable" is harder for me than definite.

 

[Al]

Hi ilgal. Welcome but sorry you have to be here. I'd just tell people that a stroke has been ruled out and you are waiting for more tests. The children depending on their ages should be told that you may have a serious illness. We usually recommend 'do what you can while you still can" here. Just in case the diagnosed is bad if you've always wanted to do something, get it done now. You'll be glad you did. If you're not having trouble with stairs I'd not worry about selling the house yet but keep it in the back of your mind. Plan for tomorrow but live for today. I hope we can be of some help and support.
AL.

 

[liz]

Welcome ilgal -

It is hard to make decisions when you don't know what the future holds. One complication I find involves decisions having anything to do with finances since I have no idea how much longer I will be able to work.

I don't know where you're from but in my region (Northeast USA) the housing market is real flat and houses are taking up to a year to sell, sometimes longer or selling only at a substantial loss. And then there is the process of finding something handicapped accessible.

If you put your house on the market tomorrow, you still can change your mind or wait for a higher offer. But putting this process in motion keeps your options open.

We waited a bit and now wish we had started making a move with this sooner. I'm living in a raised ranch, having trouble with steps, and probably going to be stuck here for quite a while longer.

Liz

 

[patricia1]

I have my house on the market over a year .We waited too thinking we would sell quick Now I have two houses and I am getting really upset So dont wait.Pat

 

[MtPockets]

Hi Ilgal

The housing market in my area, south Mississippi, has fallen really fast in the past year. A big part of our market was due to hurricane Katrina and the loss of so many businesses. I have relatives who are in the Real Estate market in Florida and they say they are having the same problems there also and they expect it to get worse before it gets better.

I thought about selling my house, but there are no homes on the market here that are handicapped accessible. So I went ahead and remodeled it to fit my current and future needs. I just finished redoing the bathroom, where I have a drive in shower. I have an extra high toilet, they added about 6 inches on the bottom of a handicapped one to make it even higher, since I am six feet tall. This makes it so much easier for me. I'm commented, (or should be, ha ha :-D ) to staying here for the duration.

If you decide to stay in the house you are in and it is a 2 story, you might consider an outside elevator, if you have a balcony or something upstairs, or convert a room on the first floor into a bedroom, if it gets to where you cannot climb the stairs. They also make a lift seat for stairs.

About telling your family about the ALS. I have 4 children and 15 grandchildren. I waited until I got a confirmed DX,and then I told my children and explained it to each of my grand kids as they came over to visit. Most of them are happy to try to help me with anything they can do. They are so sweet and understanding. I love them dearly, and I tell them often. If you find out for sure you have ALS you have the advantage of knowing what is coming and you can slowly prepare them. You can also make peace with everyone you know about any outstanding problems in relationships you may have had in the past, and be at peace.

It has given me time to get all things prepared before hand, such as my will, how I want my funeral to be held, who gets what of my junk. Amazing how it all becomes JUNK when you know you are dying. I use to think "THINGS" were so important, but alas, relationships are more important than all the money in the world.

I hope this does not depress you. I just wanted to give you some things to think about and to prepare for just in case. I hope and pray you do not have ALS. May the peace of God bless and guide you through this time.

God Bless
Capt AL

 

[CindyM]

Hi ilgal. I hope it is not ALS too, but like Al says it is best to plan for the worst and hope for the best. Probably we should all have been living like that all along but like MT (Captain AL) says, this gives us a chance to wrap things up. It's kind of depressing to say it, but we all know the end will come some day-most folks just don't get the chance to make amends. Please write more and let us know how things are going. Regards, Cindy

PS. we have a second home in Florida and when the Docs were saying ALS we put it on the market in order to do major renovations in our primary home. Real Estate in the Northeast is very expensive and we have an old-not-rehabable home on prime real estate so we were going to tear down and start over. But the house in Florida is not selling and the ALS clinic gave me a reprieve, saying it is too slow-moving to be sure exactly what is going on. Maybe the angel that sits on my shoulder will join you for a reprieve as well! Here's hoping!