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

[EricInLA]

Wow, 6th grandchild. That's awesome Lisa. You get all the fun and (hopefully) none of the responsibility. I have 3 teenage boys so I don't think I'm going to be around long enough to meet my grandchildren, at least if our boys follow their parents' instructions and take their time. (Sorry for the negativity there). On the positive side, I am still able to do most things, and so am trying to book fun vacations for the summer. National Parks are just starting to open up, and that seems like a relatively safe place to be, as long as you're not on the gridlocked Mist Trail at Yosemite.

 

[swalker]

Another Wednesday has flown buy. By now, much of the world is already into Thursday.

I continue to do well, but am tired due to the last few weeks being very hectic for us.

Our wheelchair van that was stolen and recovered over Thanksgiving has finally been declared a total loss by the insurance company. We have decided to buy it back and have it fixed up rather than going through the brain damage of looking for another wheelchair van during the Covid19 situation. Our state recently changed the laws about this and have made it a very convoluted process. Our state's Division of Motor Vehicles (DMV) finally opened up last week (part time) and we are now trying to figure our way through the maze of paperwork. Of course, the DMV is swamped and unable to return our calls. We don't want to physically go to the DMV for Covid19 reasons (you have to walk through the public health clinic to get to the DMV office). What a mess.

Many know that we bought a travel trailer 5 years ago so that I could still camp. Last year, realizing the travel trailer was not sufficient for my needs, we bought a motorhome. We took 2 trips with the motorhome last year and decided it will do the trick and that we would sell our trailer this spring. Then Covid19 hit. It did not seem likely that folks would be buying used travel trailers, so we decided to wait, probably until next year to sell it. Well, about 3 weeks ago, my wife woke up and said "let's sell the trailer". I figured this was not a big deal. Simply list it on craigslist and expect zero interest due to Covid19. Instead, we had someone offer to buy it in less than a day. We actually had 5 seriously interested parties within 3 days. So, we had to spend time getting it ready to sell and then physically doing the transaction. That really wore me out. It is great to have sold it so that we don't have to worry about storing and maintaining it. I am glad it is gone but very sad to see it leave. It served us very well.

A day after we finished selling the travel trailer, we got a call from the place where we store our motorhome telling us that someone had broken into a bunch of trailers and motorhomes at their storage facility, including our motorhome. So, we have had to make two trips to the storage lot (90 miles away), met with police, filled out paperwork, inventoried what was taken and what was damaged, etc. Again, a lot to try to keep on top of after getting really worn down selling the travel trailer.

I keep thinking that things will quiet down and I can simply have a restful week or two in Covid19 shutdown. That is not the way it has been for the last month!

Steve

 

[lisa g]

Checking in today, the heat here has been horrendous, if I don't have to go outside I don't. The temperature in my pool is 86 degrees. I spent this weekend in the pool as much as I could since it would be my last for awhile. Monday I went in and had a pic line put in to start Radicava. I've had 3 treatments so far and am so glad I took my neuros advice and try it. I've had no side effects and seem to have alot more energy. It's also decreased the extra saliva and slightly improved the burning and tingling sensation I've had around my lips. I shot a message to my neuro letting her know how it's working out for me and to express that I would like to get a port put in place since this pic line is cumbersome and don't plan on keeping it longterm. That will be my next step when she sets it up.

Hoping everyone else is doing as well as they can.

 

[KarenNWendyn]

Doing ok. Using BiPAP most of the day now and all night. I feel more relaxed with it on and definitely notice more effort to breathe without it.
Losing my ability to type with my one semi-functional finger, so I know I have to get cracking with my eyegaze computer.

ALS — the gift that keeps on giving.

 

[KimT]

Hello from sunny Florida. Yes, it's been sunny all week and, despite pain and digestive issues, I've spent a lot of time in the pool. My hair was annoying because it takes so long to dry. It's also a mix of blonde, gray, and brown. I managed to cut the bangs and sides yesterday but my right hand still works but just not precise. So, for laughs, here's the front after the cut and the back.

 

[blitzc]

Love hearing from everyone!

Lisa, so glad to hear the Radicava and pic line are working out. Port much easier to live with! I made phone calls with the local chapter of ALS Association a couple weeks ago to Ohio's US Reps and Senators. In our advocacy list of legislative wishes, I spoke about Medicare needing to allow for home infusions particularily with the covid19 crisis. Hopefully my story will help move medicare changes.

Karen, prayers for the changes you are now experiencing. It's funny how I look forward to bedtime amd turning my trilogy on for the night-such a relief. Do you have to move the machine from room to room throughout the day?

June has been beautiful in Ohio with brilliant blue skies, low humidity (most days) and high 70s-low 80s. My husband took me to the park for a picnic lunch and walk today. It was breezy and warm and wonderful not being in the house.

 

[blitzc]

KIm, so sorry about all the pain issues. You look amazing with your hair trim!!! Keep smiling.
I cut my hair all off about two years ago...so much easier to manage. I just wake up and go. No fuss.

 

[lisa g]

Kim, love the haircut ✂ everytime I get mine trimmed I try to talk myself into cutting it all off. That day will be coming.

Karen, glad your getting relief using your bipap hope the eyegaze navigation proves easy.

Cathy, glad you got out for a picnic. The weather up there sounds wonderful. Wish we were up there now, plan on coming up in October since its hurricane season here now. We always stay close for that.

 

[pmiles116]

Still in recovery from my PEG. I have an “abnormal” amount of pain according to my doctors. This largely occurs when I eat. The incision looks good though, and each day is slowly better. Fun way to celebrate my anniversary!

Hospital bed being delivered tomorrow. Hopefully that will help some with sleeping.

 

[Dee Dee 0617]

three Wednesdays this is a record. Had help over today so started to tackle garage. I hate directing other people going through my things. I want to clean and cook and be the mom I was. I want my life back. This is ridiculous. Sitting in a chair watching the world go by.

 

[nona]

Checking in. I've been engrossed in the news these last few weeks and haven't been a good PALS communicator. Bracing for the heat wave that starts today. Give me snow any day but the heat gets me down. I actually kind of benefited from the COVID precautions because my student nurse helpers couldn't start their real jobs so they had more time for me. It delays the inevitable but it's nice to have a little more time before they move on.

 

[mytmouz]

Decent Wednesday so far. I am about 90% healed from the hospitl/nursing rehab fiasco. And I finally got a new pca that has been working a week now! I am surprised at how much better that made me feel...

 

[Wilson2009]

Happy Wednesday. I thought it was time to check-in as it has been quite a while. Progression is still slow, very slow. However, my speech has deteriorated to the point that even Joyce can't understand me. I need to switch to my AAC full time, even though I am annoyed with it. I will probably use my handheld whiteboards more than the AAC.

Our great-granddaughter and her parents are coming for a visit after July 4. This will be the first in-person family visit since Christmas.

Otherwise, we are ops normal in the Heartland. Well, as normal as the times allow.

 

[KimT]

Florida seems to be the new epicenter for CV. I still haven't seen my brother since February. My routine consists of watching TV, ordering things from Amazon and the grocery store, spending 45 minutes in the pool, and trying to keep things in order. I'm tired and in pain after I go in the pool but I know when I can no longer do it I'll miss it.

I'm supposed to get my six month checkup for my new eyes but I think I'll put it off for a few months. I'm not having any issues. Still need to get an MRI and that is bad enough.

We've had great weather.

 

[Statius@]

Greetings from very hot Tucson. We were getting ready to return to Iowa in late May when I blacked out fixing breakfast and ended up on the floor (unhurt from the fall itself) and then by ambulance in the ER at the Tucson VA. There I was diagnosed with pulmonary embolism--a number of blood clots in my lungs (I also have AFib). After a couple of days in the hospital I was moved to a rehab unit at the VA where I spent nearly 3 weeks trying to get my strength and mobility back, with some success. Back home as of last Friday, I'm able to transfer, dress and bathe on my own, tho still a bit unsteady. Needless to say this has put our return plans on hold for a while. Discouraging to have a second life-threatening condition on top of ALS, esp. since I'd never had cardiac problems before. As with ALS, a day at a time, and hope the blood thinner prevents another episode. Hope everyone is as good as you can be.

Ed