Now I miss some big things

[PDaddy]

Like:

Driving - I tried last week and couldn't, I didn't crash, It was my decision
Wiping
Walking well - I am borrowing (from ALSA) a Hoveround this week
Talking clearly
...

But I have a great wife!!

[sdsyd]

Sorry to hear about your progression. I hadn't seen any posts from you lately and have been wondering how you were doing.
Hang tough-

Love,
Cindy

[BethU]

I'm so sorry for the progression. I'm going to be looking at some of those soon. (I'm ahead of you on the talking. But the walker's been ordered) This thing just doesn't let up, does it?

Hang in there.

[tmasters]

Hey PDaddy,

Ditto what Cindy said.

Wiping - Yowza! I gotta make sure I get my Toto Washlet installed before this happens.

Good to see you still appreciate the good things you DO have!

-Tom

[Al]

Like my dad (94 and healthy as a horse) says, just do the best you can. Keep your sense of humor and don't lose hope.

AL.

[jennyhoff]

I am a newby on this site, dx with ALS 6/06, but wanted to tell you the change that wheels made in my life. I got a scooter over a year ago, and my powerchair last January. I love them both! I cause a bit of worry to those around me, but I charge up and go-everywhere. I can see whats around me instead of watching for pebbles to trip over! I join "bike rides" with the kids in the neighborhood, go get my own groceries and have them put them on the back of my chair, I mean everywhere. At least when weather permits. Even in the winter, my caregiver wraps me like a burrito with mittens on and I go to the nearby coffee shop. I feel free, independent, and motivated! But I understand your feelings -I miss rolling over in bed, and playing guitar..(not at the same time!-well, maybe!
Jenny
LIVE OUT LOUD

[rose]

Welcome to the forum :smile:

Pat... I too had noticed your absence here, I hope you reach a plateau, and also are able to come to grips with the changes you face.... and chiming in about the Toto washlet, even your wife would enjoy having such a convenience, maybe its something to put some of the MDA money toward...

[PDaddy]

Thanks all, no plateau, but I'm OK, I even changed my avatar... (photo upload failed, I'll try again)

[sharonca]

I put in a new bidet toilet seat made by Jaquzzi (sp) - it is exactly like the Brondell one but about 200 cheaper. I love it. I'm missing walking more than I thought I would. Just so many places in my house I cannot get to. And I cannot decorate my house. My friends did a good job but I always enjoyed getting things ready for Christmas. Must learn to be happy for what I have... I'll work on that tomorrow.

Sharonca

[tmasters]

Thanks for the tip, Sharon. I've always wanted a Jacuzzi. :lol:

(still waiting for those bathroom pics you promised)

I've got 4 contractors bidding on my remodel...

-Tom

[PDaddy]

Avatar fixed? YES!

[Shane the Pain]

Hi Pat,

going thru very similar restrictions myself.

i started myself on a Newcastle Brown Ale diet.

i drink about 3 to 40 per day.... i've gained 4 lbs.

my wife says it's her good cooking, but i prefer

to think it's the beer.

your friend in pain,

Shane

[sharonca]

Tom - I'm buying a camera tomorrow!

Sharonca

[PDaddy]

Hey Shane, I still prefer Bombay Sapphire!

Hi Pat,

going thru very similar restrictions myself.

i started myself on a Newcastle Brown Ale diet.

i drink about 3 to 40 per day.... i've gained 4 lbs.

my wife says it's her good cooking, but i prefer

to think it's the beer.

your friend in pain,

Shane

[Tfisher]

My mom really wants to drive again, she hasn't in probably a month. She can barely talk but has full use of her hands and walks with a walker. Just drags her left foot a little but I'm thinking maybe she can still drive, or maybe just when I'm with her. She had several falls but I think was all caused by lack of nutrition and hydration. Am I crazy to let her drive when we are together?

BethU, I know you are still driving but you haven't had any trouble with falls have you?

[tmasters]

If she stopped driving because she was having trouble doing it, and now she wants to drive again only because she misses it, then no, it's not a good idea.

Maybe you could take her out to some deserted area and have her drive with you where she can't hurt anyone, and you can assess her skills. Heck, you might be able to satisfy her craving to get behind the wheel and at the same time talk her out of it.

-Tom

[BethU]

Tfisher ... no, haven't had any falls yet (well ... one, when I was trying to get up from the floor and used my weaker left leg to push).

I took the senior's driving evaluation test from the Auto Club last month. I've done it every year since it came out. It's a computer disk, and it has all kinds of visual and physical tests ... how fast you can turn your head to read the computer screen behind you, how fast you can walk 10 feet from the computer and back, visual things like car and truck icons flashing in different positions on the screen, and you have to identify which icon appeared in what sector of the screen. It doesn't do anything about traffic laws, etc. ... just a physical evaluation.

The actual name is "Roadwise Review" and I think it was about $5 at AAA.

My test results showed "no impairment" ... BUT the test doesn't evaluate arm strength. I am aware that when the car is barely moving (parallel parking, backing out of a parking place), it takes me longer to turn the wheel. When the car is moving, I feel fairly confident, but I am staying off freeways unless absolutely necessary. Fortunately, most of our doctors are within three miles of us.

The good thing about that test is that it is an objective evaluation. It's not a family member trying to take away your car keys. It will show exactly where you might have problems ...

[Tfisher]

tmasters & BethU,

I guess she wasn't having difficulty driving, she just became so weak from not eating enough and getting dehydrated so now that she has her feeding tube she is much stronger. One thing against her right now is the snowy icy ground. I think the AAA evaluation is a great idea, I will pass it on.

Thanks for your ideas!

Tfisher

[pattyp]

Hi Jenny, It's Patty in Kalispell. I miss rolling over in bed too!! Well I can, but it's a LOT of work :)

[pattyp]

for tfisher,
I just wanted to let you know that I'm still driving. My right leg still works pretty good. Left one is pretty useless so I mostly use a wheelchair but I can still drive :) and I make the most of "drive-thru's". My granddaughter asked me if I really liked McDonalds!! I find it rewarding to do my own banking, go to the post office, and several other things. My daughter will help me get to stores that offer power carts, the ones that don't have them no longer get my business :) Giving up independence is really hard and I'm hanging on to mine as long as I can!!

[Tfisher]

I had my mom out the other day in her car and I offered to let her drive but she declined. Her limb situation sounds similar to yours. How is your speech and eating? I told my mom the other day not to eat any solids while I was away for a few hours and she asked my why. I said "Um I don't know, because you keep choking on things and I don't want you to choke to death while I'm gone." I asked her to try eat her solid foods when I get home but she eats alone anyway even though she tells me about choking episodes and how scary it was.

[pattyp]

Tfisher,

Right now it's only my legs that are affected. My arms seems to get tired if I try and do too much on canes instead of the wheelchair. I live in an older mobile and the wheelchair won't make it in the bathrooms or to the last room in the hall which is where my office is :(

So far my talking, eating, swallowing, breathing are ok. I do notice some lung congestion when I get up in the morning but I can cough and get rid of it.

I agree with you, if your mom is having a problem with choking, she should maybe wait till you are there to help if needed.

It is hard to give up on things you've always done. I find I have to give up a little more all the time and maybe your mom is feeling the same way and trying to hang onto this a little bit longer. I know it's probably hard for you to watch. My kids have told me the same thing. It's hard to watch someone you love go thru this. I took care of my Dad thru 5 years of 4 cancers and it was hard to watch him try and cope with loosing a little more of his life all the time.

Good luck and prayers to you and your mom.

Patty