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

Nikki J

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Joined
Mar 22, 2012
Messages
16,378
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Let’s get roll call going again. PALS try to post each week. Even if it is just a word or 2 to let everyone know how you are

Anyone who wants to share more please do Of course specific issues deserve their own thread
 
The old rollcall closed from disuse. I have been guilty of neglecting to post. Sorry.

I am visiting family so away right now. Just had a family event attending a school play Had a great time!
 
It is not Wednesday. That never stopped me in the old thread, so why would it stop me here:)!

We travelled to San Antonio for Thanksgiving and had a wonderful trip. The trip was hard on me, as I expected it would be. I plan to spend the next few weeks recovering.

It was great to see many of my family in San Antonio. My sister and her family from the Austin area were able to join us along with my niece and her family from the Dallas area.

We returned to wonderful snow. Vail has opened most of its terrain already. I am really looking forward to going skiing, but think it will have to wait until after the new year.

Steve
 
Nov was a good month, lots of fàmily, friends
Still the nightmare march on and on
The 30 th was my 68 th b day feeling grateful
Hope ya all find some bit of a relief today
Love ya all

Chally
 
Years ago (before ALS), I used to attend a support/ discussion group where we would go around the room and do a check-in. Many people, not comfortable with baring their souls, would respond that they were “fine”.

I learned that “fine” meant “f**ked up, insecure, neurotic, and emotional”. So my check-in for today is that I’m fine.

On the plus, I have trained my dog Jaime to run along side me in the wheelchair. We do daily 2 1/2 mile runs (when it’s not raining), and we both enjoy it. I’m vicariously enjoying her buffed physique.
 
I guess I'm "fine" in Karen's terms. I've been driving without incident since diagnosis but had a couple of occasions yesterday when I didn't get my foot fully from the gas pedal to the brake so I was engaging both at the same time (briefly). No consequences but it makes me wonder if it's time to stop driving. Otherwise generally slow progression, tho progression is happening in speech, more fatigue, less leg and arm strength, and degradation of fine motor skills --can't see any effects from Radicava one way or another. The 10 inches of snow we got last weekend didn't help--this weekend it's cold rain and wind. Best wishes to all--I'll try to keep the thread going.
 
I'm here and I'm also "fine." It got pretty cold here for a few days, but tomorrow promises sunny skies and warmer. If all goes well, I'll drive across the bridge to see my brother and his wife (only about 20 minutes.) I have some Harry & David pears that should be ripe tomorrow so I'll take them some.

This month will be busy with doctors, parties, and socializing. I have a dental appointment to replace a crown but I might put it off until another issue gets resolved.

I've been delighted with the Healthy Chef meals that are delivered each Friday. I no longer have to cook and grocery shopping is 1/10 of what it was before I started the service. I've also been getting another service called Daily Harvest that delivers frozen ready-to-make smoothies. My favorite has blueberries, bananas, kale, spinach, almond, cacao, coconut, and maca. They are organic and all you do is open, add enough liquid (I usually use coconut milk or almond milk) throw it in the Vitamix and it's ready. With these two services, there is no longer wasted food in my house. The shakes say two servings but I have no problem drinking the whole thing. I usually add some additional protein like Greek yogurt.

Nikki, I'm happy you got away and are having some nice family time. Thank you for taking time out to start this thread and for all you do for this forum.

Happy belated birthday, Chally.
 
Statius, looks like it may be time to give up driving. Happening once would not be too alarming, but twice in one day is. You could easily run into the car ahead of you, or go into an intersection. I have been having an issue with fatigue while driving from holding my head erect. I got a fitted neck brace with good side to side motion for for turning my head that seems to have resolved my issue. At some point I will need to stop.

Left side weakening started in 2017 and I was diagnosed in Sept 2018. Still have good right side strength and lower left arm strength so driving is not yet an issue.
 
actually we make a pretty " fine" group of friends!
it looks like I will make another Christmas! Never expected to keep rolling this long!
 
G'day, all. Not sure I'm as bad as "fine"; maybe "fair to partly cloudy".
;-)

Could use a break from the perpetual western Pennsylvania overcast, though.

Best regards,
Bill
 
Still hanging in there.

Ray
 
I have been taking it easy for the last week while trying to recover from our Thanksgiving trip. Lots of sleeping. I made it to church on Sunday and enjoyed seeing my friends there. We then went to McDonalds with my god daughter, which was wonderful.

I ordered the first bits and pieces necessary to build up a lithium battery pack for my 4 wheel drive wheelchair (Magic Mobility X4). I will take it easy and let my friend Greg do all the actual work:). It should make for a great winter project. I anticipate it will take the range from 4.5 miles with MK lead acid gel batteries to over 14 miles:).

Steve
 
Flurries today in WV
Teeth clean yesterday @va dentist,
Funny going to do dentist with a feeding tube life is full of irony

Hope ya all have a good day

Challly
 
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