PALS ROLL CALL NEW THREAD (PALS ONLY) [Wednesday or whenever]

[KevinM]

And of course the toilet install went straight to hell this morning, Eric. I had purchased a higher elongated toilet with a top flush (figured it might be easier to push down on a button than work the standard flipper, when the time comes). All good so far.

However, when the plumber removed the old toilet, the 3” cast drain iron pipe and flange broke off (it’s a 41 year old house), so now they have to order a special part that is hard to find since they don’t stock those materials any more. No toilet in the master bedroom for a week. Yippee!

We have another bath/toilet which is/was the domain of my wife, but I’m sure I’ll get into trouble multiple times over the next few days for leaving the seat up. With my GI issues, I’ll also be buying several cans of febreeze.

Thank god for Ativan and THC oil...K

P.S. my wife, daughter and I have made up after apologies and hugs all around, so we’re good on that front. K

 

[Clearwater AL]

I ordered a new office chair for my office roll top desk and man cave
corner. Get this… Made in China. It spent 28 days at sea, arrived in
California, Fed EX trucked it to Nebraska, then trucked it to Kernersville
North Carolina, then here. Fortunately I am very mechanically inclined.
(It's a high dollar plush chair with numerous adjustments (lumbar)
for my back and tail bone issues.)

No assembly instructions, book or warranty in the box. Before this I
would have assembled it in an hour… it took most of the morning with
Ann’s help with me now nearly being one handed. We got ahead of the
assembly and had to undo something and re-do it.

*You mean to tell me after 28 days at sea, trucked to Nebraska then to
North Carolina that chair couldn’t have been made in the United States !
Just the same price or less ?

Maybe made here I would have got an assembly manual and warranty
papers. Of course, the warranty wouldn't be worth the paper it would be
written on in most cases.

Maybe this should have been on ‘Rants and Raves” but the posts above
it seems somewhat fitting.

 

[bhg]

Eric, I was rooting for the Warriors, but, yes, it was exciting.

 

[wmilo]

Kevin, you said, "a day late and a dollar short". When I was a kid, my mother used to say to me and my friend/"partner-in-crime" that "the two of you put together wouldn't make a good half-wit".
I'm glad that you and your family made up. But plumbing problems are the worst.

As my arm strength and dexterity deteriorated, I bought a bidet-style toilet seat and it has prolonged my independence considerably. There are versions out there which range from very basic to having more features, but it has made a very significant difference. I also learned that the bidet seat could be installed on top of a toilet seat riser to provide some extra height.

Regards,

 

[KevinM]

Hi Bill. That’s a great line from your Mom. love it!

I do plan to get the bidet seat once my hand strength declines. Everyone seems to love them.

I forgot to add that when the plumber was backing out of our driveway he knocked over my neighbors mailbox. Such a lovely morning...K

 

[EricInLA]

Betty - So was my wife (a Bay Area girl). But our boys are all LA boys. The Ws have another shot tomorrow, and I hope they win. It will be fun to have Steph Curry in the playoffs.

I agree that plumbing problems are the worst!! As the owner of a few apartments, I will say that plumbing problems are the one thing that sends my heart racing. Anyway it's good to hear about this bidet seat option.

 

[Fusia]

I was surprised to see no posts on this thread yet today, so I guess I'll kick it off. It's a dreary, rainy, chilly day here, so no outdoor time today - I've been enjoying getting out each day for very short walks with the walker or longer walks in the PWC, but I will have to settle for reading and other indoor pursuits today.

My brother visited last week, which was the first time in quite a while that it had been just him and me together. He completed a few projects around my place, including building small platforms outside my external doors between the thresholds and the threshold ramps - this results in raising the back wheels a bit as I'm entering the house, and keeps the EZ-Lock bolt on the bottom of my PWC from tearing up the thresholds. We did some reminiscing about our childhoods, and discussed what's in store for me. Good conversations.

He also managed to fix a months-long issue I have been having on my wheelchair van. The sliding doors and ramp were not opening automatically - they had to be opened and deployed manually (ditto to close). I had had the battery checked and was told that even though the battery did not need to be replaced, it was probably not fully charged. But, nothing changed after putting a battery charger on the battery. My caregivers and friends we're getting weary of running around the van when loading and unloading… After fooling around with it for a while, my brother decided to RTFM. It turns out, there's a power override button near the driver's left knee that had inadvertently been pushed, preventing the doors and ramp from deploying automatically. Who knew?! I guess they install the button with the wheelchair conversion, so the driver can prevent the ramp from being deployed if they are parked next to another vehicle or some other obstruction. Good to know.

I have quite a few other visitors scheduled over the next several months. While I'm really looking forward to their visits, I sometimes feel like they are all making their final pilgrimage to see me… Really, though, I know it will be great to see everyone and we will have a great time and make some good memories.

One final accomplishment this week: I installed 4 switch bot devices on the remote control for my hospital bed. Now, I'm able to raise and lower both the head and the feet using voice. (Thanks to @Bass and @Jimi for the idea.)

Have a good week!

 

[KevinM]

Thanks so much for starting us off this week, Fusia! Great to hear from you. Sounds like a good, important visit with your brother.

My wonderful daughter and her boyfriend treated my wife and me to a lovely Asian dinner at one of our favorite restaurants for our 25th wedding anniversary. I got a little emotional because when I was diagnosed two years ago, I didn’t have much hope I would be around. Here I am, though, and we had a great time.

My daughter and her partner are quite the adventurers, and they told us about their trip in July to Peru to hike to Machu Picchu in the Andes range. They are both fitness trainers, but being flatlanders they must acclimate for 2-3 days at 11,000 feet before the hike, which reaches over 15,000 feet. They will be hiking in Colorado in late June and will test their stamina then. We instilled a sense of travel and the beauty of other cultures throughout her life, and I’m so thrilled to see her doing what she loves.

Nothing much else to report. Finally got my toilet installed (happy day!), and dealing with the 90+ degree heat. Mornings are still nice, though, so I get whatever little projects I have for the day completed before noon.

I sure hope others will chime in. I have a sinking feeling that we are down to a handful of folks still able or interested in staying in touch. I’m always so saddened by the nature of a forum like this, and my heart soars when I hear from you. Best, Kevin

 

[nona]

Fusia, amazing what one can learn from TFM. Kevin, I hope to keep your heart soaring for a long time to come!

I'm waiting for a thunderstorm to blow in any second now and cut through the heat from the past few days. I can hear my upstairs neighbor's chairs being blown around, and the peepers must think it's dusk because they just started chirping away. They might be the only thing I love about summer. I'm a winter girl so while everyone else is giddy from the heat I'm grumbling.

Or maybe I'm just grumpy because I tested positive today for a UTI so I'm about to start my sixth round of antibiotics in five months. They wreak havoc on my digestive system. I don't look forward to waking up in . What's that saying about the cure being worse? That's true for antibiotics.

Here's to the thunder, literally and figuratively. I smell rain! Hallelujah.

 

[wmilo]

Don't give up on us yet, Kevin. Peaks and valleys.

A couple of amazing posts from you and Fusia.

Fusia, you're the second person I seen recently referred to a problem with the EZ lock bolt interfering with chair clearance. I don't have an accessible van yet, so there are no attachments yet on my chair, but I had intended to get the EZ lock or Q straint systems. I thought that on one or both of those, it was possible to get a "low-profile" installation that would increase the ground clearance. Is that something you heard about when yours was installed? Two thumbs up for the voice control and troubleshooting the car door problem. Outstanding!

Kevin, congratulations on your 25th anniversary! What a wonderful milestone! I'm very glad that you were able to celebrate it with your daughter.
I am impressed with the amount of training necessary for them to make this hike in Peru. 15,000 feet is no joke. I expect that you will have wonderful stories to hear and pictures to see when they return.

It is rainy here today. The last few days have been in the 80s and 90s, so it will be nice to have a break from the heat.

I am able to nap easily now with the BiPAP, and I just have to gear up to try it overnight.

Best to all,

 

[Fusia]

Jessie: I'm so very sorry to hear you are dealing with yet another UTI. That's just downright miserable.

Bill: I knew going into the EZ Lock installation that there could be a problem - I had read on this forum previously that there is an issue on the Permobil F3 and F5 chairs. Unfortunately, I would've had to travel several hours to get Q Straint System installed, so I went with the EZ Lock. I made sure the installer used the very shortest bolt possible, but it still causes some issues. I think at one time there was a "lifter" that could be installed under the bracket in the vehicle to raise the whole bracket up slightly, which I suppose would be a "low profile" installation. But, the guy who installed the lock for me said it couldn't be done. I think I might call the EZ Lock company to ask them about it. I'll report back if I find anything useful. (I suggested to my brother that he grind a little bit off the bottom of the bolt head to give a little more room, but he was unwilling to do that. If I only had hands that worked…)

Kevin: Happy Anniversary!

 

[KevinM]

Damn it Jessie. I’m so sorry about the UTI and antibiotic hell.

Bill, thoughtful and positive as always. You are a good man, and it has been a real pleasure to meet you through these posts.

Thanks for the anniversary congrats, Fusia!

P.S. one of you please share the rain with us dry and hot north Floridians!

 

[Krismn]

Happy Anniversary Kevin!

Jessie, I’m sorry about the UTI

Fusia I’m so glad you were able to get your bed set up with voice control. I need to do that!

Bill, I’m glad you’re able to nap with the Bipap!

I’ve been able to go out on some outings in my new van which has been really nice. I also got to see my son play in his last college tennis match.

We’ve started using the Hoyer lift for most of my transfers. I wasn’t thrilled about having to use it, but it has actually been better because I have less stress and anxiety when doing the transfers now.

I have my three sisters coming to visit in June and we are going to take a road trip. I’m so excited to make memories and laugh.

Take care everyone!

 

[nona]

@Krismn , I resisted the hoyer too but it's so much easier. Except for dressing. Haven't figured that part out yet. And have fun with your sisters. I miss mine immensely.

 

[Statius@]

Wanted to let folks know I was still around. Have 3 VA visits this week--catching up from my absence in Tucson where they have no ALS clinic. Tiring but necessary. We've been having almost nonstop rain--scattered but almost daily. gets a bit dreary. Have picked up PT exercises I had let slide during our return trip and aftermath--seems to be helping the muscles I still have use of. I have had the same experience with the EZ lock bolt, tho my current thresholds handle it ok. Once got stuck trying to enter a shop--We freed it with difficulty, but I had to transfer to a rolling chair inside to get in.

Ed