Another calling all PALS thread! ( PALS only post please)

[frankb]

Have been offline for what seems like an eternity but hopefully my connectivity problems are solved. Thanks, Nikki, for the new thread. It is really great to again catch up with old friends but sorry to hear of those who are having greater difficulties. Hey, guys and girls, let's just keep on trucking, as we once said back in the 60s ! ! /Frank

 

[tripete]

Went down hard an hour ago while cooking dinner. My ankles are giving up. Had wheelchair eval a week ago. Suppose to cook a luau for Christmas just don't know anymore.

 

[GregK]

Pete, go for the AFOs

 

[GregK]

Took this one shortly before my diagnosis. This is Ace.

Kim, you're looking a bit horny...

 

[bigmark1954]

Went down hard an hour ago while cooking dinner. My ankles are giving up. Had wheelchair eval a week ago. Suppose to cook a luau for Christmas just don't know anymore.

Falling SUCKS!!!!!!!!!
For me it is how I tell if my day is good or bad. Seems like I am always heeling up from a fall. I have to totally concentrate on walking, and still I fall. I should be using my rollator 100% of the time, but I hate using it so I do a cane.

Pete....do you use a rollator or just a cane? I think the sequence should be cane, rollator, then wheel chair. For me it is likely to be cane to wheelchair.

 

[swalker]

Went down hard an hour ago while cooking dinner.

We all know the rule to not fall. And, I guess we all violate it.

I was trying to do something last night and "tipped over" 3 times. Fortunately, I was close to the ground each time and did not injure myself. I was also very fortunate that my wife was not around, so there were no witnesses

My wheelchair was about 6 feet away from me during all of this.

So, I can encourage others to use the wheelchair so they reduce the risk of falls, but I guess I need someone to remind me from time to time.

Steve

 

[swalker]

They claim agent orange, Vietnam 69

My father was exposed daily to very heavy doses of agent orange over a 6 month period in 67 and 68. He died of a rare form of Leukemia which was probably caused by exposure to fallout from the nuclear bomb tests in the pacific (he was a pilot in the Air Force and flew through the fallout for a prolonged period).

I am grateful to all veterans of any branch for the service they provided. While I am not a vet, my father, uncle and brother were all career air force. My brother in law was career army. Many others in my family have served, but I was not able to.

Really sorry to see so many vets here. I do believe their ALS was caused by their service in our armed forces. They deserve everything the VA has to offer.

Steve

 

[tripete]

"Pete....do you use a rollator or just a cane? I think the sequence should be cane, rollator, then wheel chair. For me it is likely to be cane to wheelchair. "

Mark I use both. My house is tiny and I was in the kitchen cooking so I counter walk there. I just turned to reach the other counter (Galley style kitchen) and my balance went. I dont "normally" trip on my toes its always balance. I just dont think the ankles can support the "odd" movement or direction change. They have very little motion in them and I tore them up a lot running and playing basketball.

I also hate the rollator but it does help with the balance issue so I us it more and more. In public I still rely on the cane and my wife.

 

[chally]

Greg, I agree with you Kim does look horny and CUTE!
My legs and arms/ hands are gone but everyday my aide puts my braces on so I can be safe doing transfers. I do a lot of wall crawling/ furniture walks but that $hit gets me in trouble every time. When I go down I use to be able to sneak back up and not say a word about it but not any more as I don 't have strength to pull myself up. I am now so dependent on others, so humbling it's not even funny but as some once said to me as I am learning these lessons that I am giving others opportunities to be of service and that's my part for now. Hard to swallow but no other choice got to have purpose or else f**k it! Love ya all. Chally

 

[wshealey]

I just completed the cane/rollator/wheelchair transition. It took about a year but it was time with several falls in the past month. I had my wheelchair eval about 6 weeks ago and we're battling with insurance to get it approved. In the meantime, I took delivery on a Permobil C300 from the ALS Association loan closet. Hopefully my chair and our van will arrive by the end of the month but thankful to have the loan closet chair until they are delivered.

Peter, thanks for the reminder of bitterness and anger in your signature line. We are dealing with a lot of delays due to insurance and vocational rehab and the frustration level gets pretty high when dealing with people who do not respond and drag their feet (no pun intended). It's hard to believe that people who are in positions to help those of us with this horrible disease don't seem to grasp the sense of urgency that is sometimes necessary to address our issues.

 

[BlueandGold]

I honestly believe we should try our best to keep a positive attitude, but some days are just plain sh!t. I'm just so tired lately. More and more time on the trilogy. 21 people at my house for thanksgiving, and maybe more for Christmas. I want yo see them all but part of me wants to just takes couple of valiums and wake up when it's over. Just so tired.

Vince

 

[Kathy K]

Lots of changes here. I got a peg tube to supplement, am on soft diet but Thanksgiving was not the same and I am craving chocolate chip cookies! Been wheelchair bound for 1 1/2 years and I was oddly ok with that. Now my arms and hands are weaker, I use trilogy all night and several + hours during the day. Was approved for an aide which is a bumpy road getting the right fit. Just got hospital bed and hoyer lift.

Have been in a funk for a few weeks. Holidays are hard. I love the baking, decorating, creating, wrapping, none of which I can do . Sorry, I'm not usually such a whiner.

On a brighter note, my daughter is moving back home with her pets so we'll have 3 dogs and 3 cats. Should be interesting! It will be good to have her here. I'm thankful for my family who take such wonderful care of me. Trying to keep positive and count my blessings.

Kathy

 

[bigmark1954]

Kim, you're looking a bit horny...

Yea she is more HAWT than I imagined!....I'd make her leave the costume on, and Ace could watch.

 

[mpnatx]

It's great to hear from many PALS. I've haven't been posting much, but know that I am thinking about you all!
Been slowly progressing, but feeling OK considering.

I spent the day at the hospital yesterday (a good day). My grandson was born at 8:28 last night. Very exciting!

This is my fourth grandchild. The other three live in Chicago so I'll finally have a grandchild close to where I live.
Wishing all the best holidays,
Marty

 

[bigmark1954]

CONGRATS Marty............I have 4 grand daughters close by, so I get to see them all once or twice a week. Glad you will have one close! They are what keeps me goin.