Anxious about what lies ahead

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photogjackie

New member
Joined
Nov 13, 2012
Messages
4
Reason
PALS
Diagnosis
11/2012
Country
US
State
N.Y.
City
new windsor
Hi, diagnosed several months ago but am told things are progressing very slowly. Still am very anxious about what lies ahead., Also, though I can adjust to not walking without much support, do miss gardening hiking etc. Photogjackiie
PS. Want to reach out and talk to others about all this.
 
Welcome
So sorry for your diagnosis but slow progression is good. Try to live each day and do what you can while you can. While it is important to plan ahead try not to dwell on it if that makes sense? None of us can know what the future will hold and especially for slow progressor s like you there may be good treatments ahead I pray that they come quickly for everyone. But even without that there is life to enjoy now. I can imagine how hard your losses are now and how you fear more in the future. That is utterly normal but don't let it stop you from doing what you can.

Take care
Nikki
 
please the most important thing you can do for us now is get signed up on the national als registary also sign up there and at your als clinic to be a volunteer for drug trials. i have been in two but now over three yesars since diagnosed so no longer can participate. you are our future. join local support group, exchange information and socialize. its been proven those socialily active will extent life expectancy success and welcome
 
So sorry Photogjackie for your recent diagnosis. My husband has slow progression, too, although his is bulbar onset and he can no longer speak. He occupies himself with as many fun activities as he can. We call them "happy distractions"! That includes having just moved to be near the grandchildren, building a new house, golfing as much as he can while he can, traveling to visit friends and relatives, and staying in touch with everyone on the Internet. Keep yourself busy any way you can with things you enjoy. Lifting you up in prayer!
 
I couldn't agree more Photogjackiie, do as much as you can and enjoy life to the fullest that you have. Try to focus more on these things than what you are losing. Not always easy to do, but it truly does help to count your blessings than to focus on losses.
So sorry to hear you have joined us, we welcome you but are always sad to hear of every new diagnosis.

My PALS is recently diagnosed too and it is very up and down, and I understand the anxiety. I try to focus on a day at a time and small issues, not look too much at the big picture which can feel overwhelming.
 
Thanks to all of you for sharing with me. I am trying to be as engaged in life as possible and in fact am going to start some new projects. Its very helpful to be able to communicate with others going through the same process.
 
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