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

[Statius@]

Checking in. We're finally having some summer like weather, tho it comes with hordes of gnats. A nice massage yesterday. Getting much needed tree work done today (by pros). Hard to believe that not long ago I'd go out with my chain saw and do most of it myself. I had 3 in person VA appts last week which left me exhausted. Happy Lou Gehrigs day to all--hope to catch some games on the tube tonight.

Ed

 

[blitzc]

I tried to spend the afternoon watching the Cleveland Indians play the Chi White Sox for Lou Gerhrig's Day including all the activities our local ALS chapter had planned to honor ALS PALS and their families, however the game is postponed due to rain.
ARRRGGGHHH!

 

[KevinM]

Late again. I know we can post anytime, but my brain still says Wednesday, stupid. And of course now I’m posting on Thursdays. Go figure.

Have I ever mentioned how much I despise insurance procedures and the associated bureaucratic rigidity? Just spent a ridiculous amount of time the past few days trying to provide the most recent medical records, physician statements, and SSDI info to my LTD provider, which I receive because I was working when diagnosed and was covered through my group insurance. I get such a piddling amount from them each month it hardly seems worth the effort sometimes.

ALS is definitely the square peg in the round holes of the LTD forms and quarterly requirements. They are designed for someone that stepped wrong off a ladder and slipped a disk, who, with proper therapy, will presumably get better and at some point be ready to return to work. A progressive disease where nothing gets better just twists them into knots.

Yesterday was quite a day at the ballparks around the country, yes? Best, Kevin

 

[Krismn]

Not much to share this week. The weather has been beautiful so I’m spending as much time as I can outside. A new paved trail opened up less than a mile from my home which has been great for going on “walks” in the power chair.

Wishing everyone well!!

 

[KevinM]

Stunningly beautiful, Kris. My fondest memory of our trip to the pacific NW was seeing a pod of orcas in the Hood Canal. I hope you find great joy in the outdoors this summer. Kevin

 

[wmilo]

Wow! That is awesome, Kris. How wonderful to be able to be in those surroundings.

 

[Wilson2009]

Enjoyed that view for almost three years when we were at McChord. I do miss the PACNW being in Kansas.

 

[KevinM]

Hi folks. Bringing this to the top again in the hope of a good roll call this week. For any newer members that have not posted, please join in. For the regulars, love to hear from you. I’m looking forward to hearing from Steve, who was planning 10 days in their motorhome at Yellowstone. Not sure if you’re back yet, Steve, but would love a recap if so! Eric, when is your Hawaii trip?

I’m discovering how tricky and nerve racking planning a vacation this summer can be. Even something as straightforward as renting a cabin in the mountains for a week—driving, not flying—is becoming challenging. Everybody, it seems, wants to travel this summer after being locked down for the past year and a half, so finding a place is getting harder, and of course most require non refundable deposits of varying amounts if you want to book something within a month or so.

I’m doing okay, don’t presently require a wheelchair or an ADA compliant cabin, but am nervous about reserving something two months in advance. How will I be by then? Plus, my wife is battling some health issues herself that leaves her very fatigued, so I worry about her as well.

I feel the need to go somewhere while I’m doing okay, but I do get nervous leaving the comfort and routine I have here at the house. We will go somewhere this summer, just can’t pull the trigger yet.

Hope everyone finds some good moments this week. Kevin

 

[Clearwater AL]

Kevin, we're in the same boat. We'd like to down to Marco Island Florida again
this late summer/fall but... my wife has health issues too. The last time we flew
I had a red badge on my shirt pocket that said, "I have ALS" that was sent to
me from my local ALS Chapter which greatly helped with the wheel chair, their
"pusher", who stayed with me, and I tipped him considerably, and all of the staff
of the airlines and check in at the Atlanta Airport which is huge.

But... things have changed from where I was then as to now.

Ann would like to go down to the beach for a few days, I lived on the beach
when I lived in Florida but... going down onto a beach now just won't work
for me.

So, we're planning a trip to the Casino, my old favorite place but it's been a
long time since we've been able to do that, hope I haven't lost it.

 

[Nikki J]

I hope you both get great vacations!

Kevin only you know how you are but most slow progression PALS if they are honest with themselves should be able to make a fair assessment of where they will be in a couple of months barring unforeseen things like injury or illness. Unlike our fast progressing colleagues I think there is predictability to some degree in that short a time frame. I encourage you to book where you want as you don’t want to get shut out If there are a gazillion steps and you have to climb into a loft to sleep don’t take it but if it is fairly normal go for it

 

[Statius@]

No big news from Iowa. I had my PEG tube connection changed to a balloon style yesterday. I'm having some mild bleeding at the site as well as some residual pain--The VA is sending a visiting nurse to take a look. Hoping it's a temporary situation. And I have a swallow test Friday. Monday they are supposed to deliver my hospital bed. So lots of VA activity. I'd like a few weeks of quiet so I can listen to the birds singing.

Ed

 

[Fusia]

I had some friends visit from Chicago last week. We were going to take a day trip into Yellowstone National Park, but heard that it's totally jammed with visitors. So, instead we headed west into Idaho and visited a couple of cool things there - Harriman State Park (15,000 acres donated to the state in the 1970s by the Harriman family) and Big Springs, which is the headwaters of the Snake River. 120 million gallons of crystal clear water is produced by the spring each day, and the area is home to huge rainbow trout that you can see from a bridge above (no fishing allowed for several miles). There were very few people visiting either of these sites, we almost had the places to ourselves.

I traveled with these same friends on a couple of big trips soon after I was diagnosed in late 2019 and early 2020 (France and New Zealand), but we had to cancel a few other planned trips in 2020. Now that things are opening up, they would love to go on another trip with me. But, I think it would just be too daunting for me at this point. I would need to travel with a PWC, the bathroom situation is always a concern now, and I have enough trouble getting good rest in my own bed these days. So, I think my travel days are over, which makes me very sad.

Several more friends and relatives are scheduled to visit over the next three months. So, I will remain close to home and enjoy all the wonderful things there are to do in the local area.

I had to laugh at Ed's comment about wanting to listen to the birds… the days here are very long, it starts getting light about 4:30 AM. The birds use first light as their alarm clock, so always start their chirping, jabbering, and singing WAY too early for me. And, since most folks here don't have A/C, windows are kept open overnight. I would enjoy listening to them much more if only they would just sleep a little longer…

 

[Statius@]

We do use AC so windows are closed tho I do hear them starting around 4:30am.. But my hearing loss at higher registers dampens the effect, and my wife's snoring is worse. I too regret the inability to travel freely--we used to take an almost annual trip to Europe or elsewhere. I don't see it in the cards now.

Ed

 

[EricInLA]

Hi friends - I had my 4-month neuro appointment last week. No major developments. Still progressing slowly. I know my arm has gotten weaker, but the doctors weren't too interested in that.

This is a big week - my oldest son turns 21 today, so we're taking him out to a local fave steak/seafood place with a nice patio where we can sit outside. Then tomorrow my middle son graduates high school! Hard to believe this is happening. I swear he was born yesterday.

With respect to summer travel, we are doing a fair amount. I feel pressure to explore and be adventurous while I am still physically able, AND before 2 of these 3 kids go off to college in the fall (one returning to campus after spending the Covid year at home). Both of these considerations make me wonder how many trips we have left as a family of 5. So with that said, we are doing a long weekend in Yosemite after next week, and then the big island of Hawaii in late July. Plus a San Diego weekend in the middle. And local beach days. I do love summer. (and the NBA playoffs. . . I think I've mentioned that before )

 

[Statius@]

I would encourage those of you who enjoy travel to take full advantage of your abilities before you "progress." In our first years we took a 6 week trip driving in southern Italy, a trip to Amsterdam followed by a Baltic cruise, a trip to Oahu and the big island, Ireland, and the Canadian Rockies. All wonderful and full of fond memories. Virtually none feasible now. So if travel and seeing interesting and beautiful places is your thing, don't put it off. By the time of the Ireland trip we needed the help of my daughter and her partner. Buon viaggio.

Ed