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

[Nikki J]

Ed my sister had no trouble qualifying For her ltd to cover at home Care. It may have helped that she was young and the nurse who determined this knew ALS. She was less disabled than you seem to be Your policy should define how many areas you need help with Good luck

 

[swalker]

Thing are pretty much the same here.

The motorhome is in the shop and we are waiting to hear what the problems are, how much it might cost to repair, and how long it will take. It has been in this shop for over 5 weeks now. Due to Covid, everything is backed up.

The bad motor from my four wheel drive wheelchair is at the repair shop in California and they anticipate completing the rebuild on Monday. I will look forward to getting that wheelchair fully operational again!

I have an appointment next week to have Numotion look at the bad motor on my F5 wheelchair. Permobil has agreed to replace the defective motor under warranty, even though the warranty has expired. I am looking forward to getting that wheelchair operational again too!

There are many forest fires in the western united states, including very large ones in California and Oregon. The smoke from those fires has had a significant impact here. We have had moderate to poor air quality for most of the last two weeks. I have had to stay inside on quite a few days due to the poor air quality. I try to get out as much as I can and have enjoyed a few wheelchair rides when the smoke is not as dense.

Steve

 

[Fusia]

Greetings from Montana. We continue to have fairly hot temperatures and smoke issues, however today the air seems to be quite clear with temp in the mid 80s. Starting next week, it looks like we will have more reasonable 70s with very cool nighttime temps!

I continue to have lots of visitors coming in for stays of a few nights to several nights. It's great catching up with old friends and family, but sometimes becomes exhausting. I find that I need at least a few days of rest after someone leaves. I completed the sale of my condo last Friday, to some good friends who will use it as a second home for a while. I have a life estate deed so that I can stay here for the remainder of my life. Furniture, dishes, etc. were included in the sale. This will make the settling of my estate easy-peasy, which puts my mind at ease.

My progression marches on. Hands, arms, upper back, and neck strength seems to diminish a bit further every day. Legs are still pretty good, although using a rollater is not as easy as it used to be due to the weak hands and arms. I use the PWC when I go out for anything more than a very short walk, but I find it a bit uncomfortable and exhausting - when I get out of the PWC when I return home (and go back to using the rollator), I feel stiff and off balance. Ugh… I am definitely getting weary of the struggle.

This past weekend, I was able to visit my two former dogs at their new home - it's been one year since I rehomed them. As always, it made my heart sing to see them so happy and healthy and to get some serious face licking from each of them!

Enjoy these remaining "dog days" of August, everyone.

 

[KevinM]

Great to hear from you, Fusia, along with Ed, Bill, and Steve. Love to hear from Jimi and several others if possible. I get quite anxious when I haven’t seen posts in a while. Kevin

 

[beauty4everyone]

Salutations of the day !

It's nice to hear that many are able to get out and about. The worldis so beautiful and there are so many exciting places to go. Especially with close family and friends. I enjoy the outside by looking through my double window in the bedroom. I would love to go out but it's so much work for my family, a strain on my back, so I adjust to staying in.

Kevin and Bill, I too have days that bring sad thoughts or give rise to anxieties. The idea of my CALS having tofeed me is challenging. Not for me. But for them. They would view it as consuming time they could use to do other things. I see it as an opportunity to sit near each other, watching a DVD together at the . We're discussing a peg tube.

The 11 balloons I received for my July birthday are still wafting around my room. I find balloons to be very cheerful. I know what holds them up, but I still find it magical. Before sleep tonight I think I'll imagine myself as a strong balloon. Out the window up into the air I'll look at the 🏟🏛🏙 city from a different perspective. I can rise to the edge of the sky, almost touching the stars at night.

Perhaps I'll visit the lovely places you are going. Look up. Maybe you will see me.

Be sure to wave . B

 

[lisa g]

Just wondering if anyone is considering getting the covid booster shot. I am able to get it this afternoon but am still deciding.

 

[Nikki J]

I would if I could. I don’t qualify even though just carrying the c9 mutation puts me at high risk for severe covid but that is not immune compromise

 

[lisa g]

Nikki, we just got off the phone with the pharmacy. Even though they're saying immune compromised and that ALS is not falling into that category they won't turn you away. I figured that if I took it today I would have Sunday as my downtime day since I had flu like symptoms from my last dose.

 

[swalker]

I don't qualify, because I received the Johnson and Johnson Vaccine. I would if I could.

Steve

 

[blitzc]

Hey Gang! So glad to hear from everyone. I've been so tired lately that the task to type has been a battle. But you folks loose if I don't persevere.

I'm dealing with the catheter surgery healing issues-possible latex allergy? Lots of discomfort on the inside and redness from tubing on the outside. I go Tuesday to the urologist for my one month check up. Hopefully some answers will come.

Beauty, so nice to hear from you!!!

Lisa, like Nikki, I don't qualify according to the information we are seeing here. I am trying to get my mother a booster. She has Lymphoma and just recovered from COVID. She was fully vaccinated but still contracted a moderate case. Her oncologist had her get Remdesiver at the hospital then sent her home. He said folks like her are not producing a strong antibody response, so act as if she were unvaccinated.

Have a great week! In the words of our dear late friend Jessie (Nona), "Keep on keeping on!"

 

[blitzc]

Has anyone heard from Doglady? She has not been around since January.

 

[KevinM]

Cathy, your unsinkable spirit is beautiful. It raises my spirits when I (we) hear from you.

I doubt that Doglady is still with us, but I would love to hear otherwise. Sending positive thoughts your way, Kevin

 

[lisa g]

Just an update, on Saturday I was able to get my booster covid vaccine. When we asked the pharmacist about it she said that they were focusing on the immunocompromised but that with the numbers in Florida being what they are they wouldn't turn anyone away from getting the booster. So I took it then met friends for dinner. I kept saying to myself I'm not even sore that's a good sign since I had a reaction to the first doses.I woke up yesterday feeling pretty good, slight headache, tenderness and alittle fatigued. I thought great if this is my reaction. I went in the pool to do my daily stretching and Rom. I did a couple of laps of sidestroke and backstroke to work out the tenderness in my arm. While relaxing on a float it hit me. Suddenly my head was pounding and I was nauseous. I got out of the pool and checked my temperature I had a low grade fever. I went back to bed and it was downhill until this morning. I hope they can tweak this vaccine if we're going to need boosters. With that behind me I can get my second dose of the pneumonia and flu shot before going back up north for the fall. Even with the side effects I'd do it again to keep from getting covid.

 

[BlsdMama]

Checking in - never seem to remember on Wednesday. We did our first big "trip" pretty much since diagnosis (& Covid) with the kids. We took them to Chicago for the weekend - Shedd's, Navy Pier, zoo, pizza, Chicago dogs, etc. All was great. I was eager to see if I could get in the pool and how that would go, but alas! It was broken! Getting around places and the city was so much better than I expected. The only difficulty was parking! We have a 15 pass van (8 kids still at home) and it needs a 9' clearance. It presented a lot of issues but between Spot Hero and Lyft, dh was able to drop us off, park, then get a lift to where we were. Mission accomplished!

 

[beauty4everyone]

Lisa, bless your heart! So sorry you had such a reaction to the shot. Although it was a challenge, I know you feel comfortable being even more protected. Hopefully, the terrible viruses will stay away from all of us. May it be so!

Today's rain made me think of Morse code.
It rains. It stops. It rains. Like so:





I wonder what it is trying to say .?
There are times when I like rainy days. The diffused light makes everything look soft. Sometimes harsh reality can become a bit overwhelming. We all need quiet days. Think soothing thoughts. Quiet your spirit. And rest in whatever day you are experiencing right now. May Blessings. abound - B .