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

Thanks kimt for all
still kicking with new AFO in Atlanta hot

just a note on the current president - they used to spit on me at the VA, now all they say is how can we help, just saying
 
There.................
 
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I used the VCP to get a neurologist 2nd opinion

SO IT DOES EXIST

Stop with Putin narrative

If you are taking the VA Money, just saying

You could be 35 with 2 young kids and wife, and no VA, MY HEART breaks for these people
 
There.... maybe that is more fitting above.

Glad you found a Neurologist who participates in the program.

I have a VCP card. As far as Putin.... it is what it is.

Yes, I am on Government Socialized Medicine too.... VA, Medicare
and Social Security. Something Right Wingers want to cut, cut, cut.
Until they are eligible for it... then they quietly sign up for anything
they are eligible for. And... SSDI if something should befall them. :)

Whatever....

Back to roll call.
 
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Same old going on here. I had my virtual ALS support group yesterday, I was able to meet some local pals so that was nice. We talked about the upcoming Hope and Help Symposium that will be held on the 29th of this month. Checked out the lineup of speakers looks pretty interesting. Dr. Pulley from Mayo, Dr. Benetar from UA Miami and Dr. Bedlack will be some of the speakers. It's going to be virtual this year due to Covid. I signed up for a variety of speakers, hoping to gain more knowledge.
 
I’m probably not going to participate in the forum, Lisa, so share the highlights when you can. One slight correction—Dr. Pulley is with UF Health, not Mayo.

My wife and our shy sheltie Rosie escaped the Florida heat this week and are in a lovely log cabin in the western NC mountains. I’m sitting in the gazebo on a 72 degree afternoon enjoying the cool mountain air, quiet time with my partner, playing with Rosie, and numerous cold beers. Since I’m still mobile travel is not yet a burden, so we are taking our COVID chances (within reason) while we can. This distraction, however temporary, has been a welcome change.

I hope this week brings some periods of peace and joy to all of you, my second family. Best, Kevin
 
Went for hike today on a wheelchair friendly trail. This is me with Wendyn and Jaime. E7F162EC-0D13-40BA-AF2B-DD27B6119C90.jpeg
 
HAPPY BIRTHDAY to all those celebrating ! (Did I see chocolate on the plate ?)
HAPPY ANNIVERSARIES to all those celebrating, too !
Celebrations are happy occasions - enjoy as many as you can.

7 August (First Friday of August) - International Beer Day
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13 August - International Lefthanders Day
Considered as one the most special days in August is the International Lefthanders Day. A day to rejoice the unique character trait of a few individuals, who unlike the majority of the globe use their left hand as the dominant one. August 2020 will be 44th International Lefthanders Day. The days also helps in spreading awareness about obstacles one faces in life for using the left hand as the dominant one instead of right. 👍👏👈

19 August - World Photography Day
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19 August-World Humanitarian Day

A day dedicated to commemorate the contribution of individuals who sacrificed or lives for Humanitarian services is World Humanitarian Day. Celebrated on 19 August each annual year also acknowledge and recognize the female workers and women around the world, for their indispensable role in Humanitarian services.
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26 August - Women's Equality Day

Counted among the most special days of August is the Women's Equality Day, celebrated on 26 August. A day on which women in the United States got equal right to vote due to the 19th Amendment of the Constitution. A day which holds a lot of political significance in world history.
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Remember, give thanks, celebrate! ❤, 🙏, 🍰. B 😷
 
Couldn't wait until next week, excited that my granddaughter Rachel Rose was born yesterday. Sad that we weren't allowed to be there due to covid. She's the only one I didn't get to see born. Resized_20200807_043630.jpg .

On another note, I signed up with Team Gleason for voice banking. They contacted me today to set up a zoom session with one of the speech pathologists. I'll have that on the 24th. It's a 2 hour session.
 
She's beautiful, Lisa. Hope you get to see her very soon.
 
It is not Wednesday, but here is an update anyway. I continue to do OK, but remain busy with all sorts of things that keep cropping up!

Our wheelchair van that was stolen over Thanksgiving is mostly done. After 6 months of trying to repair it, insurance finally declared it a total loss. We bought it back from insurance and had the necessary repairs made. This involved a lot of suspension work and buying new tires. There was a still a vibration, so we took it back to the tire shop 4 times before they finally found out that either due to a new machine or a new employee, the tire had been improperly mounted on the balancing machine. Once they figured this out they were able to properly balance the tires and the vibration is gone! Wonderful. Now all we need to do is get the warranty work done for the front end repairs so that the steering wheel is straight.

Our motorhome that was damaged by the shop dewinterizing it is being repaired by another shop. The current estimate is obscenely high, but we don't have much choice except to have them do the repairs. I am certainly not able to do the work. Hopefully, it will all be fixed in a few weeks.

The Permobil C500 wheelchair that was damaged when I flew to my brother's funeral in January/February is still not completely fixed. NuMotion came out again to look at it, but the tech refused to examine it, saying he had already declared it to be fixed. Other techs have disagreed with him. Southwest Airlines has agreed to get a second opinion from another company. That is now scheduled for September 16. It is good to have a backup wheelchair!

The Permobil F5 that was damaged when the van was stolen was declared a total loss after about 8 months of bureaucratic delays and attempts to fix and refix it. A few days later, NuMotion came out to replace the motors under warranty (for the replacement they had done a couple of months ago in an attempt to get it working). The new motors make it behave better, but not yet correct. I am glad I will be getting a new wheelchair. I have not yet found out what will happen to my old wheelchair. Will I be able to keep it for parts? Will the insurance company come and pick it up? Who knows!

Yesterday, we made the trip to NuMotion in Denver to get me officially measured for the new Permobil F5. The order should be going in sometime in the next week or two.

This morning, I woke up to my hospital bed's air mattress leaking air. We discovered that a union in the air hose had snapped off. I think I have identified the correct replacement part and have ordered a replacement. Unfortunately, it will not be here for at least a week. We have not yet decided what I am going to do about sleeping in the meantime.

There are many other little things that keep cropping up daily. As soon as I get one thing off my plate it seems like two more things get added. There is absolutely no danger of me getting bored during our COVID isolation!

Steve
 
Beauty: thanks for a list of great things to celebrate! (Especially left-handedness) :)
Lisa: congratulations on your beautiful granddaughter, Rachel Rose! She is gorgeous.
;)Steve: Yikes! You have had more than your share of "stuff" coming at you. (Props for hanging in there with the tire shop to get the vibration fixed. Feels good when they finally get it right.) Hope you are in for a stretch of smooth water. (Or new powder, if you prefer.)

Regards to all,
 
Wow, Steve. That's a lot.
 
A very sad day today for me as news of a fellow PALS has passed away. I met my dear friend, Leslie Coffey, at an ALS support group meeting about a year ago. Another gentleman, that was also new that month, and I remained in contact with Leslie through emails, texts and ZOOM support groip meetings. We all three kept each other positive and supported with every new hardship. The hardest challenge was being isolated during this COVID crisis. We have waited longingly for the day when we could see each other in person again.

We want to do something for our treasured friend but don't know what. If anyone has any suggestions, I would appreciate your input.
 
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