Prepare early and completely

[irismarie]

THank you, Joel. As a newby here, knowing nothing, I am so glad to receive such advice. Trouble is, here in France you can get no help for anything without a diagnosis. I am seeing the doc tomorrow and begging him to diagnose no matter what in the meantime before the EMG in January so I can get a wheelchair as moving is desperately hard. Then everything depends on how MUCH the state will help as I am already in the bracket that needs state aid to live.
ah well, I did not really need to add to my life's already rich tapestry, thank you, Fate!
Love to all
IRISMARIE

 

[Cereus]

Joel,

THANK YOU! I introduced myself a moment ago. Before I did that I read this thread. You have helped me tremendously. My hb was diagnosed with probable ALS (bulbar) and FTD (dementia) last Friday. He is already talking about moving to a state we lived in 20 years ago that he loves. He has no idea that a move is the last thing either of us can handle right now. I have been agonizing over whether doing this to make him happy would be wise. Your advice about moving was perfect. I hope my hb will realize how many friends he has here and how wonderful they will be once we tell them the truth.

With thanks from a new friend,

 

[joelc]

I am bringing this back up where everyone can see it again.

I have read too many posts where PALS have waited too long and either hurt themselves or their caregivers or both.

Please put things in place before a major accident happens. With ALS these injuries do not heal property - I speak from experience! LOL

 

[Katie C]

Cereus... I'm going to throw in one more caveat... as Glen's FTD progresses, things that are new and unfamiliar become increasingly difficult for him to cope with. Even if you once lived in another state, it would still be "new". If you can stay put, that would be my advice!

 

[Marjorie R. Wilcox]

Thank you, Joel for your advice. We listen and take it seriously from you. You have two friends right here to add to your long list of others.

 

[Blubear]

Thank you Joel. This is all stuff that I fear will happen to late for my dad just as you warned. Just talking to my mom today, she (nor my dad) will even think about looking into the future. We were talking about the VA once again turning down my dad, and how he wants to go to the ALS clinic in Seattle but his medicare plan wont cover it, and I was telling her that once he does get approved with the VA it will be great because that is where he will be getting all the equipment he needs, like wheelchair, cough assist, dinavox etc and all my mom could say is that they refuse to think like that and quote "Your dad may not even need any of that stuff" URGGGG! They have an elevator in their home now, but the bathrooms are not equipped correctly and they have a large Italian marble bath that is in the way of the door that connects from their bedroom to my dads bathroom. They will have to take that whole thing out and get it redone, but they refuse to think that he will get that bad, well until he actually does get that bad that is. It is so hard to sit here and just say, um okay but you might want to do this or that, and all I get back is he may not need that. Whats a concerned daughter to do?
Hugs, Kari

 

[Zaphoon]

Joel, This is certainly sound advice you gave in this thread! I should be using my cane more.

 

[sadiemae]

I have been getting copies of the reports the Dr writes at our monthly ALS clinic visits. We mentioned that Les was getting red pressure irratations from sleeping, and he put in his report that he would see about a mattress, and I showed this to the nurse at the VA, and they ordered us a hospital bed with a special mattress. The clinic Dr never mentioned to us about getting a special mattress, but it was in his report.

 

[halfin]

We were lucky enough to get a loaner power wheelchair from the MDA recently. I don't really need one yet but I do get very tired if I have to walk more than a block or two. I've been having fun driving it around the house, and we even took it out shopping a couple of times. It's all for practice for me now and I actually enjoy it.

Fran was commenting how it's so lucky that we were able to get it early, so it is a positive and fun addition. If I didn't get it until later on it would just be an unfortunately necessary piece of equipment and it might seem sad. So that is another advantage of getting going early.

 

[Just J]

Joel, thank you so much for this wonderful advice. All points dully noted! I have to say though, we are open to a move. Right now we live in the mid-atlantic area and would love to move south in order to enjoy better weather year round. This of course depends on me having a job but we are 100% committed to a move in our future. This will move us away from family and friends but I am hopeful that an improved climate will also improve my husbands quality of life. Just have to consider the downside of leaving friends and family behind, and as you said....it may be more difficult to gain new friendships when we move. So definitely something to consider.

 

[hopingforcure]

JustJ,
Keep me posted, I am not far from you, and I have a kind and helpful family and friends, if we can be of any assistance to you or your husband let me know. I also wanted to add that PLS can progress quickle, and then slow down quickly. Olly is a long time PLS girl, she is a good sourc of info. (I have not heard from her lately, been thinking about her)..

 

[mare]

Hal-

I agree! You get to have some control over this.

Jim did the same thing; he made the decision to get the w/c on his terms. Not when he HAD to have it, but more as a tool for independence when going out.
He said it is a HUGE difference being pushed in a manual chair by me (made him feel "disabled") and having a power chair that he controls!

The same can hold true for other equipment: cane, walker/rollator, AFO's etc.
If you GUYS can just get it through your head that it is silly to struggle with activities, when this stuff can help so much. It won't slow you down, on the contrary, it helps to let you do what you want. And it gives such RELIEF to the wives/caregivers because of the safety issue.

You have no idea what it means to me when I hear him say "this is so much easier/ better". That is music to a wife's ears!

 

[pvale]

I was having so much trouble moving around, and falling, that I welcomed the power wheelchair. I have to have help to get in and out of bed, and sister is going to have a hospital bed waiting in NE for me. I can't drive any more, but the wheelchair has let me get out and around the area.

Perry

 

[Just J]

Mare, thanks for your post. My husband will barely leave the house now b/c he is uncomfortable with being "disabled". I like the fact that the pwc empowered your husband! I hope mine will feel differently once we get one for him. I'd love to take a walk through our neighborhood with him!

 

[tomby]

Hi all and thanks to Joel for solid advice. I'm new to the forum, but have been peeking in for the last couple of weeks. We are struggling with the move vs renovate question. I'm still pretty strong and can get up and down stairs fine, but its getting tougher. We've been in our house 17 years, but doorways are narrow and the bedrooms and only shower are on the second floor. Sorting through 17 years of junk is a daunting task, but so is changing a dining room to a bedroom and installing a shower...I think I answered my own question