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

[Fusia]

It continues to be unseasonably hot here in Montana this summer, but we are having a few days of mid 80s instead of mid 90s, which feels delightful (although normal temps for this time of year are typically in the mid to high 70s). My brother and sister in law arrived yesterday for a five day visit, then on the heels of that I have an old college friend visiting from Hawaii for a few days, then I have friends coming in from Chicago for a visit. Those friends are actually going to be buying my condo here, and I will have a life estate deed so I can stay here for the remainder of my life. I'm very excited they will be able to enjoy this place after I'm gone.

No wildfires close to where i am right now, but we have plenty of smoke from the fires in western Montana, Idaho, Oregon, and California. We do now have level 2 water restrictions, which I have never seen here in the 27 years I've lived here.

The highlight of my week will be watching the first episode of Ted Lasso season 2 on Friday! A few friends will join my brother, sister-in-law, and me for the viewing. I expect there will be good food and adult beverages involved.

I love hearing about everyone's travels, so keep the stories coming!

 

[wmilo]

It's been nice here in W Pa - pleasant, breezy, and a couple of evening thunder storms.

Getting adjusted to the BiPAP; I've used it at night since July 3rd.
Had a good visit with my sister last week. She was here by herself and it was nice to have some good time to chat.

The lift was delivered on Thursday. We've made a couple of transfers and are looking forward for some training from an OT.

Cathy, I hope you are quickly recovering from your surgeries and feeling better.

Best to all,

 

[KevinM]

Great to hear from you Bill. I’m so glad your sister visited and you had some quality time. Family...

Speaking of which, proud papa here with a picture of our daughter hiking the Andes in Peru (boyfriend not pictured here). She’s something, and we love her so much.

 

[beauty4everyone]

Kevin, what a lovely picture of a beautiful girl. She looks like a professional climber. Know you're very proud of her and all her accomplishments. Daughters are so much fun .

Cannot stand, walk, use dominant left hand, or raise my arms at the shoulders. I can still feed myself, but it's becoming more challenging. I have two wonderful caregivers. The finger splints have begun uncurling my fingers, allowing me to bend them. The hospital bed, Hoyer lift, power wheelchair, shower chair, Trilogy, and cough-assist, helps(ed) us adapt to changing circumstances. . We just take everything one-day-at-a-time.

With my bed tray and computer I keep busy writing my family history, watching YouTube and playing solitaire. It is challenging, trying to keep track of the memories that pop into my mind, in order to enter later. Findagrave and Galileo’s census data are a big help, as well as posted information by other researchers.

My double window keeps me in touch with the outside. I wouldn't be able to keep an uplifted spirit without it.
There is so much beauty in the world.

Take care, everyone. Keep safe and stay well . B .

 

[KevinM]

Thanks, B, you are so kind. She loved the trip, but the intense hiking for four days took a lot out of her. No matter how fit she is, nothing prepares you for 10-15 mile days at that altitude. She’s proud of her and her boyfriend for powering through, though.

I am so sorry about your progression, but your attitude is something extraordinary, which I struggle with every day. Best, Kevin

 

[wmilo]

Beauty, glad to see your update. The same could probably be said for many people on this forum, but as I was reading what you wrote I was thinking, "hospital bed (check), Hoyer lift (check), PWC (check), shower chair (check), Trilogy (check), cough-assist (check).… take everything one day at a time (double check)." We just got the lift last week and are waiting for a hygiene sling, and are also waiting for a shower chair. The lift has already made things safer for my CALS. I feel very grateful to have these means of assistance available.

I have found myself dealing with some negative feelings about having to be assisted to eat. I am very grateful that I am still able to eat and swallow, but I find it a little difficult to have to ask for that kind of help. So on balance, I guess that the "good news" outweighs the "bad news".

I am expecting a visit from my four-years-older brother this coming week. I have not seen him for several years, and I hope we have a good opportunity to reconnect.

Best to all,

 

[Jhettinger]

Thanks for post
what brand VA Bed did you get ?
accessories ?
process ?

 

[swalker]

Kevin, that is my kind of picture. Absolutely beautiful country. I am so glad you daughter and boyfriend were able to explore that part of the world.

Beauty and Bill, it is surprising how much equipment we seem to accumulate. I don't yet have (or need) a hoyer, but have most of the other stuff and some additional stuff for my specific situation.

I am still recovering from our trip to Yellowstone and the Tetons in late May and early June. It sure took a lot out of me, but I also have very fond memories of the things we did. Our motorhome is still in the shop and we don't yet have word on what it is going to take to make it right. At least they are looking at it now.

The last couple of weeks have seen two significant wheelchair failures.

The left rear motor (actually, gearbox) failed on my Magic Mobility X4 four wheel drive wheelchair. Those motors are no longer made and parts are generally not available to repair them. I have found a place that has a stock of old (possibly used) parts and they say they should be able to repair the motor. We removed the motor and shipped it off to them. I should know within the next week if they are able to repair it. If not, I will be on the lookout for an X8 (the model that replaced the X4 in Magic Mobility's lineup).

I also had a motor failure on my Permobil F5 wheelchair. The left motor is overheating and causing the wheelchair to periodically roll back the speed until the temperature drops to an acceptable level. I have not been able to get anyone to look at it yet, but it will likely need new parts to fix it.

As I have said before, I am glad I have a back up wheelchair or 4 so that when one or more break I still have options.

Steve

 

[KevinM]

Thanks, Steve. My daughter and her partner enjoyed it, but the two 15 mile days were really difficult. They learned that no matter how fit one is, if you aren't regularly hiking that long at that altitude you will be exhausted and sore. Certainly a trip to remember, though.

No post of yours feels complete without mention of one or more wheelchair failures! Hope they can repair the motors.

My wife, doggie, and I are finishing up several days in the NC mountains. Perfect weather, good food (outdoors) and an isolated mountain cabin. Distraction is so important for my mental health, legs are still holding up okay, and we have taken several long, enjoyable walks on the local greenways.

Headed back to Florida tomorrow, and next week my wife has to go back to the classroom with most of the students likely unmasked. The situation is getting bleaker by the day in our state, and we can only hope her vaccination keeps here as safe as possible given the circumstances. Best, Kevin

 

[blitzc]

Hi folks!
My recovery from surgery for feeding tube and supra pubic catheter has been slow but not terrible. The first couple of days were tough...lots of tears and frustration by my husband and I both.

The surgery went well using twilight instead of general anesthesia. I stayed overnight. Once we were home I stopped pain meds and just used Tylenol due to how lossy it made me feel. We've had trouble getting information on the catheter usage and a home care nursing visit the hospital promised would take place for post surgical care. Still waiting! We think we are taking care of the sites appropriately with the help of my two aides. There is still discomfort at the feeding tube site.

The best part is not needing to transfer for the toilet every 2-3 hours and I can drink all I want!!!! I am definitely glad I went ahead with both catheter and feeding tube. It is just important to note that this process is not something for a PALS weaker than I am.

My week included a visit from my college girlfriend. It was so wonderful visiting, but exhausting at the same time.

The weather has been so wonderful...cool in the 70s and low 80s with beautiful breezes and blue skies!

Keep the stories coming! I'm right in the Bill and Beauty group. I have the same inventory! But I now can include catheter supplies!!!

Have a blessed week!

 

[Nikki J]

Glad to hear from you Cathy. I hope you get the visit and information you need but it sounds like you doing great.

wishing you continued swift healing

 

[wmilo]

Greetings from W Pa. Nineties here. I haven't been outside so I've been comfortable.

Cathy, I'm glad to hear that the catheter is having the desired result. (Although sorry to hear it was a rough start.)

We've been using the Hoyer for the difficult transfers with good success. I am comfortable, my CALS isn't straining to lift me, and it is safer for us both. When I can no longer manage simple transfers (I can still stand comfortably from the PWC and bed) the lift will be great.

I got a nose pillow-style nose piece for the BiPAP, replacing a nose cushion. Still comfortable and seems to result in less occurrences of high pressure during the night.

Still haven't overcome my anxiety to call the place about buying an accessible van.

Kevin, glad you are still able to enjoy a family getaway. Good on ya'!

Regards to all,

 

[KevinM]

Great to hear from you, Bill. Glad the you are having success with the Hoyer. Best, Kevin

 

[KevinM]

Hello everyone. Same old story...bringing the roll call to the top and hoping to hear from folks.

Well, here we go again in Florida...a tropical storm is headed our way, COVID is exploding, and kids are headed back to school along with my wife This is going to get really, really, bad.

Found out this morning that my neighbor’s 70 year old wife just finished her quarantine after contracting Delta. Thankfully, very mild case because she was vaccinated. Her husband, also vaccinated, did not contract it. Also learned that my 55 year old neighbor on the other side of me has it as well, and I’m worried about him because I’m guessing their family isn’t vaccinated.

More data coming from Israel last month indicates that the mRNA vaccines efficacy at preventing infection from all strains dropped to about 39% for those first vaccinated, though Pfizer (and presumably Moderna) were still more than 91% effective at preventing serious disease. Not too much has been reported on J&J, because Israel did not use it.

I firmly believe that as more data on Delta rolls in we will find a much greater incidence of breakthrough cases than currently being reported. Really need a booster that is tailored for Delta and hopefully Lambda instead of the original strain. As one doctor put it, COVID in 2020 was a pussycat; the Delta mutation is a lion.

Glad we took our vacation when we did. Best, Kevin

 

[Statius@]

Checking in from Iowa, with not much new to report. Looks like the VA here will resume in person ALS clinics in September. Daughter and her wife arrive from Tucson this afternoon. I'm trying to see if my long-term care insurance will provide financial support for in home care (it's part of the coverage, but I have to "qualify." Hope everyone is dodging the Delta variant.

Ed