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

[Clamdigger]

It's been just about 2 years since the official diagnosis and I'm still driving and working so I feel grateful for that. I'm hoping to be able to work for at least another 2 years but everyday is just a tad harder than the day before so we'll see if that works out.

 

[KimT]

We're having exceptional weather here on the East Coast. I love sunny days!

 

[bodhi]

I also loved Green Book.

Another great recent movie was “A Star Is Born” with Lady Gaga and Bradley Cooper.
...

Also loved these movies,
I recently enjoyed
The Wife (2017) and Five Feet Apart (2019), but my favorite was probably Bohemian Rhapsody (2018), saw it twice, just for the music.

Just rediscovered Stephen Levine books - it is so hot here, not much going out, progressing, so more time for contemplation, learning let go daily (like all of us).

Purchased a breath- and speech course for ALS online and am procrastinating, feeling too lazy..

wishing everyone a serene, relaxed week.

 

[swalker]

It is not yet spring here. We are at the tail end of a major winter storm. The prediction was for up to 20 inches of snow at higher elevations.

Some places received about a foot or more, but we have probably seen a total of about 6 inches in the last 3 days.

I have not done much wheelchair riding this week!

Steve

 

[Wilson2009]

Hello everyone,

Steve, it may be snowing in Colorado, but we are getting soaked in Kansas. A little over 4 inches of rain since Monday. After the April floods, things are pretty soggy around Kansas City.

Started another cycle of Radicava yesterday. This is number 21. The VA also switched me to TIGLUTIK last month so that is one less pill to crush.

Just came back from a week-long trip to New Mexico, which was a nice change. Like Clamdigger, I can still drive so it was a lot of fun.

Otherwise, we are ops normal in the Heartland.

 

[KimT]

Bohemian Rhapsody was one of the few movies I actually went to the theater to see. We have a theater with seats that recline and ample space between rows. They have cup holders and a special row for PWCs. The man taking tickets is in a PWC. The seats are very comfortable.

I loved the songs but my heart broke for Freddie Mercury. He was a beautiful person and the actor did a great job.

 

[Statius@]

Just back last Sunday from a week in DC, where my daughters and 2 old friends joined us for the delayed celebration of our 50th wedding anniversary. Grand meal at a Spanish seafood place (Del Mar)--glad I can still eat. Did some museums in the times when we weren't eating--got our fix of seafood for the time being. We drove--or rather my wife did--I think my driving days are over unless/until I get hand controls. It's taken a few days to recover from the travel and simply being away from conveniences of home. Our hotel, the Kimpton Carlyle, had a well-designed accessible shower, tho the room was a bit small, not surprising in a city.

We too have had lots of rain. Our house is on high ground with no rivers nearby, but our gravel road is a muddy mess. Beautiful day today, but more rain in forecast. Cities along Mississippi, about 30 miles away, are suffering.

Ed

 

[Idaho2790]

I’m at UCSF for my three month checkup. Had the second round of Botox shots today. Went from four shots, two on each side of my face to six. The extra two under my chin. Looking forward to good news and relief from excess saliva. Our daughter will come in the morning to attend the first clinic. We are so fortunate ate to have a son and daughter who want to understand this illness. Sunshine here in San Francisco. High 60s so no wonder I feel better!

 

[bodhi]

-the weather here is awfully hot, above 40 Celsius and scorching sun. Longing for the monsoon rains.
I was very weak and sleep most of the day. Must have overdone it at the swimming pool - once i am in the water i don't want to come out.
Our night help is sick and poor hubby is exhausted, pulled a back muscle when lifting me.
Many friends visit, but i can hardly talk anymore... I am learning to let their love in -not easy - and shut up - even more difficult.
Also started using my Bipap for the whole night for the first time, was okay.

wishig everyone a pleasant week with Acceptance-Love-Serenity.

 

[lisa g]

Hello to all,
This is my first post here. I am currently up North and am still trying to adjust to the unpredictable spring weather, one day cold one day warm. I'm used to my Florida sunshine. I agreed last year to buy a condo in Ohio so my husband could be closer to his family. We come up a couple of times a year. I do love the spring flowers blooming, there's nothing like the smell of a budding lilac bush or the beautiful dogwood trees. A couple of more weeks and I can get back to my Florida sunshine and humidity and best of all my pool!!!!

Today, we are visiting an outdoor market. There will be a food truck invasion and my favorite truck will be there, Vegan ago go. I can hardly wait .

Hope everyone has a good day.

 

[KimT]

Hi Lisa,
I love my Florida, too. Don't forget our wonderfully fragrant Jasmine and orange blossoms.
I'm from upstate NY and loved the lilac bushes. They were in full bloom on Memorial Day (which we called decoration day.)
Enjoy the rest of your trip and then come back to your warm pool.

 

[KimT]

Here it is Wednesday again. Cleaning people should be here in about 30 minutes. I hold Ace and we sit on OUR lift chair until they're gone. Then I get up and clean the inside of the refrigerator and computer and TV screens.

 

[Chuckdobro]

Hello everyone,

Overcast, cool, and occasional rain here in northern Ohio. Still working and will start my 3rd round of Radacava this evening. Hopefully this rain will taper off and give way to some sunny days.

Chuck

 

[Wilson2009]

Last night was an adventure for northeast Kansas as a tornado swept through about 7 miles northwest of us, which is a little too close for comfort. Based on the destruction in the path of the tornado, it appears to have been at F4. Our heart goes out to those directly affected by the storm. Thankfully, no one was killed.

Personally, I gave up on TIGLUTIK after a month of constant GI issues and went back to Riluzole. I never had any side-effects from Riluzole, so I was very surprised by the TIGLUTIK adverse reaction. I guess the suspension affected the absorption of the drug.

Started cycle 22 of Radicava yesterday. Typing this as today's infusion is flowing into me.

Otherwise, it is ops normal in the Heartland with an ever watchful eye on the gathering clouds.

 

[lisa g]

Happy Wednesday,
The weather in Ohio has been crazy the past couple of days. We are tucked in a little pocket, the tornados have been to the south of us towards Dayton and to the north of us. We start with beautiful weather in the morning allowing me to get out and do my 4 mile walk. I always feel better after this stretching my muscles. Than the afternoon will turn windy and rain. Hoping this weather settles soon.
Have a great day