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

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
Hi Nikki J, I'm new to this site and have been trying to self educate. I am reaching out to you, because of your frequent posts. I have a few site navigation questions, as well as acronym definitions. Could I impose upon you to point me in the direction of a tutorial? Everything I've managed to glean independently has been so supportive. I really can't do this alone anymore,. Thank you in advance. Dee Dee
 
My daughter and family came on the weekend and put up my tree, went Christmas shopping and bought keepsake Christmas gifts for grandchildren. Been a busy week with me sleeping more and more, yesterday I slept 12.5 hours straight. Woke up to everyone standing around wondering if they should wake me. Lol boy was that different, I'm usually up and waiting for them. I did some Christmas cards, but I got some free from Shutterfly. That's about all for now.
 
I gave up driving almost two years ago. I was driving to church (mind you I am as stubborn as they come ) My friend Kate, had come by to help me into my vehicle from my wheelchair, my arms didn't work well so instead of ten and two it was six-thirty and six-thirty but the day I couldn't move my right foot from the gas to the brake peddle, I handed over my keys and never looked back. I realized I HATE not driving, these people are not good at it, I was an amazing driver. Thank goodness I have a grasp on my prognosis or I'd be terrified they are going to kill me. Hang tuff but be real.
 
Diagnosis in March 2017. Have lost a brother and a cousin to ALS. We all share the C9 gene. My RT hand is what is mostly affected making difficult to cook and write.

Would encourage PALS with either the C9 or SOD1 gene to get to a neurologist that is doing clinical trials.
I’m in a Biogen Phase 1 clinical trial and I know that the SOD1 is now in Phase 3. If you want I can share contact information on a Dr. that is doing trials.
 
I am part of the group who was on here in 2008. I’ve had motor neuron disease for over 13 years now. Betty
 
Hi and Merry Christmastime to everyone. I’m back following and learning from this very helpful forum, thanks to a few emails showing new content and making it easy to get back on. I’m not good at navigating forums. I stayed away for quite a long while. Following some of the lives shared can be heartbreaking and frightening, and I was afraid I was becoming obsessed...trying hard to live in the moment. But there is definitely a warmth in having the company of pals and cals on this journey, and so much knowledge and experience right here that you can’t find anywhere else, even the clinic.
One year now I’ve had my power chair, which is a life changer. Moving into assisted living in May.
Happy Holidays !
 
Hi, BlsdMama, Being able to be out-and-about with dear family to enjoy nature, the scent of evergreens 🌲🌲🌲🌲🌲, bringing home your own tree to decorate 🎄 🎀 and celebrate the holidays ❄❄❄ how wonderful!!

I retouched your photo so everyone could view it a little better. Although I didn't adjust the color, I still hope that was OK. B.

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It's Wednesday the sun is shining it's 9 degrees outside. I am sitting in my den beside my fireplace binge watching SVU, with my Christmas tree in the corner. -
 
I guess a bunch of us posted early this week.

I had surgery on my right eye yesterday. Today, the doctor said it looked good. I've been napping a lot and trying to avoid junk food. No cards for me this week.
 
Happy Wednesday everyone. Continuing to enjoy the holiday season without any major issues. Received our first serious snow over the weekend.

We are ops normal in the Heartland.
 
Happy Wednesday everyone.
 
All is well here, and maybe we will have a white Christmas. Looking forward to a visit from my sister and nephew from AZ next week.
 
Do over, what I said yesterday. If I could figure out how to copy and paste.
 
Enjoying the Tucson weather, especially daytimes. Adjusting to new routines and a house not fully modified for my needs--but close enough. Also a new VA lacking an ALS clinic, but offering good services so far--you just have to "travel" Waiting for completion of a fence replacement so we can let our dog out--he's given up 6 acres for spacious, suburban backyard.

Ed
 
One week to go until Christmas. So far so good; still vertical but moving much slower. Feel awfully lucky to be able to celebrate another Christmas with kids and grandkids. Hope all of you are enjoying the holiday season.

Bill
 
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