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

Hi, All 🙋‍♀️,

I take Baclofen 💊for muscle spasms and fasculations. Finding the right position helps, too.
They are annoying and disturbing 🙁. I'm sorry anyone has them.

Nice to hear about travels completed, new ones to come, special moments with family, etc. What 😊 fun!

For those of us who do not have an opportunity, at least not now, there can be moments to look forward to that lift one's spirit.
The days will be cooler 🌖. The light will change. How lovely that will be.

May Blessings abound. ❤️ B 😎
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I am still hanging in there.

We have had to cancel the first 3 weeks of our planned trip to the Tetons and Yellowstone due to issues with getting our motorhome repaired. Unfortunately, it is just not practical for us to make that trip without the motorhome. Instead, we are enjoying the fall colors here in Colorado.

I have been on some wonderful wheelchair rides lately. Here are a few pictures along a bike path that runs through the Vail golf course.

Steve
 

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I did my second consultation with Palliative Care. It was with a
Duke doctor. I’m set up with the stair lift (for now), the chair and
anything else of the future. I brought my Will and she went over it.

Gave me a few minutes to think it over with Ann. I decided I will
not trach and did a DNR. For me, at that point enough is enough.
Not to take away from others who chose to do so. All of my family
is in Florida, all of Ann’s family is an hour or more away from where
we live. It’s just Ann and I here. I do qualify for in home care
through the VA. Yes, I am fortunate. I think of the struggle for
others.

That bad fall I took was the worst thing to happen. Please, for
those in the early stages… take it seriously.

Anyway, being from Florida hot weather never bothered me.
Now, here in North Carolina, I can’t wait for the cooler weather.
 
I hope the decisions, difficult as they are, bring you peace Al.

Although I am usually cold, and lower temperatures makes my symptoms worse I can’t tolerate what we wimpy New Englanders call heat waves very well either these days

I got my flu vaccine today. A little earlier than planned but I expect the pharmacies here will busy with covid booster shots soon.
 
Blsdmama I live just SE of Iowa City where I worked (at UI) for 20+ yrs before retiring (and getting ALS). I get most of my care at the IC VA but see a pulmonary MD at UIHC. If they ever resume in person support groups in CR perhaps I'll see you there. Currently trying to raise money for the Cedar Rapids Walk for ALS which will be virtual again. Have my first in person clinic in a couple of years at the VA tomorrow

Ed
 
Hi, Steve 🤠, glad you’re ‘Hanging in there :).' Everyone else, too. Just keep hanging in there! I understand it isn't easy. We do the best we can. I hope today is a good one for you 🌈all. May it be so 🍄. May blessings abound. B :cool:
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Happy Autumn to all in the Northern Hemisphere!

One day it is sunny and warm and the next brings cold weather and rain. Time for warm weather clothing and coats.

Catheter keeps clogging...the most recent clogg occurred after only 8 days. This was supposed to make life easier.

Fall trip starts Saturday. First stop Boston-downtown with tickets purchased for Boston tea Party Museum on Sunday. Next stop Kennebunkport, Maine then Bar Harbor, Maine which includes a whale watching tour. End of the trip has a stop in Senneca, New York for wine!!!

Have a great week everyone!
 
Cathy, so good to hear from you. I sure hope the catheter starts working like it should.

What an amazing trip you have planned! The fall color should be incredible. Best, Kevin
 
Thanks, Beauty. "I understand it isn't easy. We do the best we can." Amen, Sister. 😃

Cathy, you will have started your trip today. Hope you have some good weather. Maine should be amazing now.

Using all the stuff (lift, BiPAP, shower chair). Very glad to have them - make things easier and safer. Needing more help eating. Can still talk ok. (You would have to ask the people around me if that is a plus or minus. 😁)
Looking forward to a visit from DS and DiL (with a two-year-old and one ten months).

Best to all,
 
The roll call seems to have faltered a bit. I have little to report, a good thing overall I suppose. In lieu of our annual ALSA walk, which was again virtual, we (wife and friends) organized a get-together--a picnic essentially for my local donors who were around. Good weather, and good company. Many had not seen one another or socialized for a while.

We're thinking ahead to our migration to Tucson in November. Complex logistics--we'll fly via Phoenix with help from my daughters, and my daughter-in-law will drive the van with the power chair down. I have a lightweight power chair that I'll take on the plane. Hopefully it will all work out. My application for access to my Long-Term Care insurance was approved, so we'll have to figure out ways to take advantage of it. At least I'm no longer required to pay the premiums.

Wishing everyone well.
 
Thanks so much for checking in, Ed. It sounds like you are planning things as well as you can for your upcoming trip to The sun and warmth. I sure hope all goes well.

Yes, the roll call is down to a couple of folks, which saddens and depresses me. I’m hoping some of those newly diagnosed will start communicating. It is cathartic for me, even if the news is often not good.

I am hanging in there, and still don‘t need my wife’s help, which is good because it allows her to continue working. The days bleed together, though, and I’m back to the “one day at a time“ mindset. We do have a short driving trip planned the first week of November to the N. Georgia mountains for some cool weather and fall colors. I always have a good deal of anxiety planning things even a month in advance, though my progression is quite slow. Hopefully things will work out fine.

Thinking of you all. Best, Kevin
 
Hi, Kevin. Glad to hear that you don't require assistance - that is great. The Georgia trip sounds great, too. Things *will* work out fine. :D

Started an infusion cycle today. No problem for me, and my wonderful CALS can administer it at home. (So fortunate!)

Best to all,
 
I've missed several weeks of posting, too. Not much to report, but also, I've had LOTS out of town visitors over the last several months - it's been wonderful spending time with friends, but exhausting at the same time. And, I never seem to get much done when I have visitors staying with me - such as posting here, responding to emails, and returning phone calls.

I'm still getting by with caregivers coming in to help two hours in the morning and two or three hours in the evening. However, I don't think it will be too long until I will need more assistance. I am not looking forward to that. I recently met a young woman (about 40) and her husband who live about a half a block away from me. She was diagnosed with ALS in spring 2020. She is FALS. I am shocked there is another PALS so close to me geographically! They are both lovely people, and I hope to spend more time with them.

I've recently been thinking about my legacy (OK, I've really been thinking about it since I was diagnosed, but I finally started doing something). I had decided that I would donate a large portion of my estate to charities - mostly local, smaller organizations for which a large donation could make a big impact. But, I recently decided to make large donations now while I am still around. I donated to 10 charities. The response has been absolutely amazing, and has really warmed my heart. I'm so glad I did it now. And, they will each get another similar donation from my estate. I had heard once that when a person is able to help others, that person gets a flood of endorphins and serotonin, making them feel really good. I've proven that theory to myself!

The weather here is definitely turning fall-ish. After several weeks of gorgeous weather we are in for some lower temps with rain and possible snow in the next week or two.🙁

Have a good week everyone!
 
That is so wonderful that you are making a difference now, Fusia. My believe in the innate goodness of (most) people is exemplified by your decisions on this most beautiful legacy. Thank you.
 
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