CALS Roll Call Continued

I missed Wednesday too!

vltsra sorry it's such a beast maybe read the anticipatory planning sticky and think about what you could get done now to avoid crisis. I would be moving out of the house now while you have a partially mobile and active PALS. Moving house with a highly dependant PALS is going to be twice as much work!

Love you all xxx

So sorry vltsra, it never gets easier, does it? Hopefully he will plateau soon?

Well it's Wednesday again. I am back from Hawaii and back to reality... We had a great time.

Walking was difficult for my PALS but he was too stubborn to use the electric scooter we rented. It sat in the room the whole week while he struggled.

We also went on a night manta ray snorkel. He got in the water and couldn't breathe. He was pretty panicked. It was really scary. No more water for him, I guess.

I still haven't found out how to post multiple pictures so I can share? I did add them to an album called Hawaii. Can you guys view an album I set up? If so, have a look and let me know what you think.

I hope everyone else is doing ok?!

Thanks Tillie & Sooner,

It's hard for me to think about leaving our house. Buying it was the first thing we did together, we were married in the back yard, and we love it here. I know I'll have to deal with it at some point, as well as all of the things he does not use, like the non-operational sports car that has been in the garage for 13 years, the weight set that he never used but had to buy, and the foosball table. I've asked that he not leave everything in my hands...

Sooner sounds like you had a wonderful trip to Hawaii, glad you could get away. Have been following your posts - the snorkeling must have been fab for you, sad he could not go, but we are all dealing with limitations. And the mai tais sounded tempting!

It's easier to forget about everything for a short time when we are away and then it comes back like a freight train. He tells me today his legs feel better. I'm never sure what to think.

V

V, could you look at stair lifts instead of selling? A relative had one installed for her wheelchair awhile back because she would not move - seems to work well. I know it can be expensive and not possible for some.

I'm just being me, spinning one week post husbands Dx, but okay. It's all changed in one way already. We have Rilutek and orthodics and sleeping pills in the works for him. We have attorney appointments in August for a will and health care directive and financial POA. he is still able to do most things, but he does less as it tires him more. So <poof> the perfect life is gone. Most of the time - we are okay, we can even enjoy things but wow, this beast is a bitter pill.

Vltsra, we lose so much in the ALS journey, so I feel for you. We had tremendous help from an occupational therapist who came to our house and assessed it for future mobility problems. If you can, do it early before your needs become greater.
They put ramps in,and altered the bathroom by building up our shower recess. Now I can push a shower chair up and in the shower. We have converted our living room into another sleeping spot,but haven't used it as such yet. They measured all the doorways and then we went looking for an electric wheelchair that would fit through. I'm glad we haven't moved . Maybe you can use some of the downstairs part differently? Good luck with your decision.
My week has been up and down. Not much sleep.....it's been a week of " going to" but not quite getting anything done. I'm sometimes very scared of the future. What's next occupies my mind a lot. On a brighter side, the sun is shining this morning. I'm wondering how Gem is going in her new house?,

vltsra I do understand - same here, we were married in the gazebo in the front yard, bought this property together.

We tried to sell and buy something only a few acres and with a better house for future needs but after 2 places to buy fell through and no one wanting to buy here, in only 3 months he had lost so much functionality that moving was going to be a nightmare, especially if I had to also look after here with renters in.

So we took it off the market and concentrated on how to make this place work.

As Chris was such rapid progression it was easy to use portable shower base instead of remodelling, and he simply had to live in only a part of the house as a PWC would not fit through the hallways. So I set him up in the lounge room which was ideal as it was big enough for all the equipment we needed and he was always in the centre of everything.

Can you set up so your PALS is only downstairs? Maybe this should be a thread rather than get lost in the roll call?

Aussie sounds like you are doing similar to what we did - it worked very well for us.

Living in the now is about we can do as we stave off all that fear xxx

Lenore we can identify - no more perfect life, just life as it is today.

Sooner I'm so glad you did you trip and it worked out pretty good. Despite him refusing the scooter and the awful scare in the water, you have both built some lovely memories. I did wonder how he would be able to snorkel ...

GEM we wanna know how the house is!!!!!!!!

Michelle,
He should be able to stay on the Trilogy during transfers -- station it in between the to/from points, keep a nasal mask on and use a quick release hose connector so he only has to be off for a second when he's being pivoted-- and I am sure the VA will pay for it if you follow the right procedure (others more VA savvy can advise).

Deb, were you still going to send or post Steve's PFTs?

Well, I missed another Wed. Too. I usually do and feel embarrassed to post. I also feel like I don't need to post what is going on in my life, because most of the post sound like what I am going through with my PALS. He won't use his walker, except occasionally in the house. He continues to overwork himself everyday. We too are trying to move but....it seems impossible since he can't help much. I worry about the future too. $$, moving, support, and my ability to cope. To top it all off He fell last evening, out side, on the asphalt. There is no way I could have gotten him up. I tried to call our neighbor to come help. By the time I got back outside he was crawling up a lawn chair. Both knees and elbows are scraped, and he is really sore. Today he still insist on doing his "chores". He had been refusing any help from me, but that is starting to change.

I identify with all of you and many of the post are exactly where I am at. The forum family is never far from my mind.
I appreciate you all.

Kay

checking in all's well have a happy day

Kay you can just post on this thread to say you are here.

In fact that's what this thread is for - it's a roll call. Deeper topics need their own thread to address properly. I would say the posts on this forum are supposed to be about what you are going through with your PALS!

You may want to start a thread about safety so we can talk about what is happening with your hubby.

Is it Friday already? Still here, trying to catch up. Matt's best friend was out last week, and that REALLY cheered him up. Unfortunately, no matter how much I try to prepare people for his limitations they are always shocked to realize just how easily he is exhausted. We have a couple and one of our daughters due in this weekend. These folks are bringing food from Matt's favorite BBQ place--so thoughtful!

The tooth that I recently had a root canal and crown done on is sensitive again. And so it goes....

Love to you all.
Becky

Checking in. Hope everyone has a great weekend!

Becky, sounds like fun, so nice to have people show their love - hope you have a wonderful weekend!

V

Hello, we have survived another bout of Gout this week , started Thursday and today my sweet hubby was able to get up and very slowly use the walker to get to the bathroom!!! Victory!!! He may win a battle every now and then . Hope everyone has a great week!