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

[blitzc]

Now, that does make me laugh! Thanks, I needed that.

 

[nona]

You guys are the best! Thanks for your honesty and understanding.

 

[wmilo]

Thanks for those wonderful scenes, Beauty! (I wanted to say 'beautiful scenes', but it sounded redundant. ) If you could bottle that, you could retire tomorrow!

Here in Western PA the daffodils, tulips and hyacinths are blooming. (Also the trees, so, like Nona, we have lots of pollen.) I haven't been out to actually see them much but they look nice through the window!

N.B. This isn't what I see through *my* window... ;-)

Regards to all,
Bill

 

[lisa g]

This has been a hard couple of weeks, so many different things to digest at once. I was given orders from my neuro for PT, Speech Therapy,and Radicava. Where to start? I tackled PT first. I was having a bout of Vertigo so therapist suggested we tackle that first. She performed the Eply maneuver. Yikes , after that we had to stop the session. I became so dizzy and nauseous. With Covid going on my husband was not allowed inside the office. The therapist had to go out to the car and together both of them had to help me out and into the car. I went home and was out of commission for the rest of the day. I'm happy to report that the Vertigo is now gone.

I asked questions on the forum about getting Radicava infusions without having a port. Thank You for all the good feedback. The infusion center has called and will be setting up a home visit to do the first infusion with a peripheral IV line to make sure that its tolerated. Then I can have a port put in.

Just another day in paradise during these crazy times. I hope everyone is staying safe.

Lisa

 

[wmilo]

Hi, Lisa. I'm glad the Epley maneuver was effective for your vertigo. I've had bouts of benign positional vertigo (due to head position/movement) a few times over the years, and going through those movements was effective each time. I printed them out from online and my wife (before she was my CALS) was able to help me go through them. Depending on how much assistance you require, you may be able to do something similar should they reoccur.

Also good that you had the PT evaluate the vertigo, as it can be caused by other conditons which the Epley maneuver would not help.

Regards,
Bill

 

[Tkthiede]

Checking in a day late (and a dollar short). My neurologist wants me to delay my Radicava again this month. When I started the infusions, I noticed my fasiculations almost disappeared. But now I can tell I’m off of it. Having a lot more muscle cramps and fasiculations in new places. Have a phone appointment with my pulmonologist Monday morning and then I’m going to go out for a haircut and hope it’s not a mistake.

 

[wmilo]

Hi Tkthiede. You may have already considered it, but I've been on Radicava for a little over two years, and my CALS has been administering the infusions pretty much the whole time. A visiting nurse comes and accesses my port at the beginning of an infusion cycle, visits again half-way through to change the needle, and then to de-access the port on the final day. For the first cycle, the nurse trained my CALS, starting with observation and then gradually completing the entire process. The pharmacy that works with my HMO (Medicare Advantage-type coverage) ships me the drugs and other required items a week before the infusion cycle is scheduled to begin.
It would not remove the concern about exposure, but it is just me and the nurse, both wearing masks, and using hand cleaner.

You may have other reasons for needing to go to the infusion center, but because the potential exposure is a concern, I thought I would mention it.

Regards,
Bill

 

[Tkthiede]

Thanks Bill. It’s definitely worth looking at! I’ll do some homework.
Tammy

 

[Statius@]

Nothing new here. Still waiting in 100+ Tucson for a safe window for the 4 day drive to Iowa. Missing the spring blooms at our house there, not to mention more moderate temps. Going out today in hopes of seeing blooming saguaros from our AC cooled car. I've not been out (except to our patio out back) for several weeks.

Ed

 

[Clamdigger]

I was going to say I was checking in but since I've been gone so long I think it's more accurate to say I'm reintroducing myself.

I don't really have much new to report. Still slowly sliding down that hill, everything is weaker, but I can still walk. The balance isn't what it used to be so I have to be extra careful.

I did learn that drinking beer through a straw isn't nearly as satisfying as the normal way.

 

[Nikki J]

Welcome back , You have been missed.

 

[swalker]

Clamdigger, great to see you post. Glad to hear you can still walk. That is great!

 

[Bob84]

Locked down here in St. Louis from the virus. Oh, correction, still doing the same thing before this Coronavirus because I have ALS.

 

[beauty4everyone]

Hi, All! Just looking in to send greetings .
There must have been lots of "negative energy" abroad recently. We all seem to have been experiencing similar thoughts and sadness.
It's unrealistic to expect not to. When I think of all our challenges, I want to just say, "SHIRT" (minus a letter), over and over, etc.

Night can be more difficult. Turn off lights - turn on "brain wandering". Some are affected by changing seasons, weather and atmospheric pressure. I am. SAD (Seasonal Affective Disorder) can sneak up on one. Once the season stops transitioning, things are better. May it be so with you.

Yesterday, working on my memoir got to me. So far,168 pages of memoir from 1874 to 1925. Months researching, sorting; copying; double checking; typing;.....Collating state history, news articles; photographs; people's births, lives, marriages; divorces; lost children; follies; crimes; diseases; sorrows; graves; tombstones:.....Looking at faded photos of dear, loved ones.....Everything related to the past and every person DEAD, except me.

I'm the last who knows and can put the story together. Just started Chapter Two, with three to go. I hope my arms and fingers hold out. There isn't anyone else. And, "So it goes."

Thank you, Wmilo. It was kind of you to let me know you enjoy the "scenes". I hope they're "spirit" lifting for many. The lovely flowers you included, lifted mine .

Thanks, too, for thinking I'm "young". Retirement was a number of years ago. (I'd say how many, but I'm not good at math )

May today be one that, in spite of circumstances, brings feelings of peace to everyone's heart ❤.
May blessings abound - B

 

[mpnatx]

Hello everyone! Still here and enjoying summer weather in Texas, on my deck. Progression has been slow with losses in arms and legs. I fell down the stairs recently ( I know, I can still here Max's warnings).
I use my walker and sometimes my pwc. I may have to finally get a care taker as I live alone. Procrastination!
Love you all!
Marty