CALS Roll call

[sunnysierra]

We survived the primary care appt with the VA in Sierra Vista and now have a referral for neurology at VA in Tucson. The appointment was right on time, lasted for about an hour and they even fit Chris into the physical therapists schedule to be fitted for an ankle brace. I was impressed. We had a contractor come out to the house last Saturday to get a bid. Haven't heard back yet. I need to call a couple more names. I'm so busy with work (applying for a $20,000 grant where the library is partnering with several schools and nonprofits) that it leaves little time or energy for phone calls. But I woke with more energy today, so I am on it! Aussiemndcarer, sorry you are here dealing with this horrible disease. You are in great company. I have learned so much and been comforted by forum members. Happy Wednesday, Kathleen

 

[pittsburghgal]

My PALS fell yesterday. We were walking in the kitchen with him using the platform walker and me holding him, which we do each day for about 20 minutes for exercise. I noticed he was getting short of breath, which had never happened before. I pointed this out to him and said we should go back to the wheelchair to sit but he said he was fine and insisted on continuing. Well, about 2 minutes later he said "I can't stand" and his knees started buckling. I tried hard to keep him upright but could not. At least I was able to gently lower him to the floor. I had to call my daughter to leave work to help me get him up. Does anyone know whether a hoyer lift can lift someone from the floor?

He must have pulled a calf muscle when falling and now is having great difficulty standing on that leg. The physical therapist saw him today and thinks he will be ok. She showed me some stretching exercises for the calf and suggested heat. Now I am afraid to have him stand at all. How can we get our PALS to listen to us??

Sharon

 

[gooseberry]

Sunny....you only have to have 1 bid with als diagnosis. We had 3 contractors in but only received 1 bid within our timeframe

 

[lgelb]

Sharon,
Some Hoyers (using this as a type, not a brand) will pick up from the floor. If you go on the major sites that sell them, you can choose this as a filter to see some that do.

Obviously, you need one, either way. Does your ALSA or MDA have a loaner? Is the "platform walker" a rollator?

Also, if he does fall again, one failsafe we had early on was lower furniture like footrests and those little cubes people use for extra seating. When Larry fell a couple of times, I was able to bring one of those into the room where he fell, get him onto one of those, let him rest, and then later up. But of course, you need a lift, ultimately.

The best argument to induce him to stay in the chair or stand up supported against it, which is good for circulation, etc. as long as he still can, is that falls often equal permanent injury and accelerate progression. You can search these forums for "fall" and read him some examples.

 

[pittsburghgal]

Laurie,
We have a manual hoyer lift that we have not used yet because my husband is able to stand and pivot when transferring from the chair to bed or toilet. I tried to use the hoyer lift yesterday but it would not go down low enough to raise him from the ground.

He has a regular walker (2 small wheels in front, none in the back) with attached extensions on each side which support his elbows and forearms. He only uses this to get a small amount of exercise each day. We were instructed to do this by the physical therapist but I am really fearful now. My husband has had multiple falls and the last fall landed him in the hospital for 10 weeks with serious head trauma.

Sharon

 

[Janis J]

We've been very busy the last couple of weeks with ALS Clinic plus various other medical appointments. The ALS team continues to arrange for more equipment; the latest (earlier today) is a Mic-Key replacement for the first PEG tube. The pulmonologist has ordered a BiPAP to replace his long-time CPAP, which we knew would be coming as soon as his respiration numbers started going down. It's all pretty overwhelming, but we're doing OK and are grateful that we'll be ready when he absolutely needs this stuff.

 

[scaredwifetx]

Checking in. Rough week. Family here all week. Friday everyone will be leaving. Took care of my mom's cremation today. Steve has had hoarseness all week along with yawning issues. My birthday is tomorrow but all I want is quiet. Lol.

Thanks to all of you for the support this week. Know you are all in my thoughts and I wish for a peaceful week for all the Kings and Queens.

 

[Nuts]

Sharon, our Hoyer does reach the floor, so, as Laure said, just do some searching. Is your PT familiar with ALS? If not, he/she may be in for a surprise as things just don't heal as quickly for our PALS. At the very least you should be following him with a wheelchair, but if he's falling, it's time to stop unless the PT is there to do the catching.
I sure wouldn't want him walking if he can barely stand.

Kathleen, when the VA does well, it does VERY VERY well, and with ALS they usually move quickly. I hope things continue working out.

Aussiemndcarer, welcome aboard. I know what you mean about busy days. It's not really possible to explain to someone who's not in the house day-to-day, but things just don't slow down.

Gem, enjoy that together time! I hope you and Tillie can work something out!

Barbie, I think it should be Warrior Queen, or are you pretty attached to that Princess crown?

Things are progressing here. Matt's back and core muscles are getting weaker by the week, and the tremors in his hands are making eating a challenge sometimes, but he's hanging in there. We have a new shower chair, one that tilts, which is wonderful, but his feet slide off the foot plates. I think we're going to need leg guards.

I got to go shopping today and picked Toys R Us. I haven't been able to wander around and shop for the grandkids in years and I had a blast. Since my son and DIL have changed their minds about moving close to us after getting my hopes up (completely unsolicited), I looked for noisy or obnoxious gifts. . A piano keyboard the kids can jump on and make music, good. Glow in the dark stars and planets that get stuck to the bedroom ceiling with putty should make dad real happy! My favorite, however, was a set of child sized, but real, yard tools (rake, shovel, hand tools) in Spider-Man motif!

 

[lgelb]

He should not be on a walker with no wheels in front, Sharon. Get a rollator on Craigslist or somewhere if you can't keep him off his feet. It will only be short-term. As for a "manual lift," if you mean you have to crank it up and down, forget that and get a power lift.

Deb, again, I know we're all sorry about your mom but glad she passed in peace. Best wishes for a restful birthday.

--Laurie

 

[KatieNBoyd]

Hi, Still here, day late. My PALS somehow gathered enough strength yesterday to take our Harley out for a 40 minute ride to ACE hardware. Didn't take his phone, but returned just fine. (We dropped it twice in parking lots on our 2015 summer ride before DX). Upon returning home he says "I am soooo tired" and sat waiting for dinner to be served. I am glad he took his ride and enjoyed himself. What are a few more of those natural highlights (grey) for me? Now we are getting ready for visit to Mayo clinic in Rochester MN in March.
Katie

 

[4tloml]

Katie, that's so great he got to do something he loves with no mishaps!

My husband is beginning to add up the losses--said at various times last week, "I can't walk the dog anymore. I can't cook anymore. I can't do a pushup anymore." And for those of us who relate, he held up his arms and flapped his "angel wings," saying "I've never had THESE before!"

He also began using his wheelchair when we're out. Till fairly recently, his were mostly bulbar symptoms and then some drop foot (which the AFOs pretty much took care of). But now his hands are greatly affected. His FVC was 55% but we can't keep his O2 above 92 without the Trilogy, so another one was delivered yesterday for back-up. At next clinic visit they're ordering his PWC, but we want to continue with the EZ Lite Cruiser for as long as possible. I can fold it up and get it in and out of the car by myself and it does have a reclining back and head rest attachment. Keeping my fingers crossed it'll continue working for my love.

We're pushing to get the bath remodel done, windows & doors in and ramp built on the single-level house we just bought so we can get moved. Just getting bids and scheduled has chewed up weeks. Aiming for March move-in. Fingers crossed for that, too.

I love this community and try to pop in regularly at least to see how everyone is doing. Always find heartache and humor and more than anything, courage and hope. Wishing you all a big spot of joy in your day.

 

[gooseberry]

Nuts,be careful. Granny bought all those noisy toys for my son. They gave me migraines so they were put away for when granny came and babysat. That was the end of noisy toys.

Steves core is deteriorating quickly. He sits on the couch and braces himself with his feet so he doesnt slide off. He does this in the shower, manual chair, etc. I hope at the va assessment in 10 days they can convince him to just do the pwc.

 

[Nuts]

LOL Steph--it gets even better. Since the kids had decided to move out here near us and put their home up for sale without first finding jobs, against our advice, they ended up changing their minds and had to find another home out on the Eastern Shore. Short story, they had to move in with my DILs parents for about six weeks until the new house is ready. If they get to keep the grandkids out there, I guess they get to figure out what to do with the noismaker!! Oh, ok...I'll be good...

Katie, those memories are precious. We're not at the point where walking the dog is Matt's big escape. The neighbors get a kick out of seeing them out and about!

4tloml--it's good to hear from you! Those 02 numbers and reactions to them amaze me. Matt's go down to 89 and I can't get anyone to respond. since they don't react, neither does he. If he's sleeping and it goes under 95 I put the Trilogy on him, but I find him taking it off more and more. sigh. That's a bad cycle...the less he wears it the more confused he gets so the less he'll wear it. And he doesn't believe that "it" has anything to do with confusion or lack thereof.

Oh well, as Max would say, IIWII.

Love you all,
Becky

 

[Chumpy]

The Chumps are still here! Taking things a day at a time! Still having issues with weight loss.... Trying different blends and boosting his calories! Hands are getting weaker, having a hard time putting his mask on and off for the trilogy. Plus less time without it, he's feeling his weakness more and more. I find it hard to know what to say. I wonder if he gets tired of me saying I love you....? It's all that comes to mind when he tells me how he's feeling.
Sorry, enough of that! Still walking, a few falls, but still upright! Thank God!

 

[affected]

Never miss an opportunity to say 'I love you'. For that matter, never miss making an opportunity either!