January 8, 2020 at 9:01 pm #14197AmandaKeymaster
As we approach our 1 year anniversary for the ALS forums, I am amazed at how our membership has grown. We have gained a lot of new members, especially over the past couple of months. Many of our members are newly diagnosed, some just within days or weeks of joining our forum. Others have been a pALS for 5 years and up! We have members that have sporadic ALS and famlilal ALS. Some members have multiple family members with ALS, such as mine. Others are the first and hopefully the only person in their family to have an ALS diagnoses. Although it saddens me to know that the ALS forum is needed because that means we have not found a cure yet, I am honored to virtually meet and get to know each of our members. I learn from you every day! It is also clear that when pALS and caretakers share their experiences, we all learn from one another.
So, for our pALS who are not newly diagnosed, what advice would you give pALS that are newly diagnosed? What should they focus on, and what should they avoid?
January 10, 2020 at 11:24 am #14213Susan HoerberParticipant
Go to a multidisciplinary ALS clinic
Join an ALS support group (ALS.ORG) plus multiple groups on facebook…but there is more uplifting than interactions with other PALS going thru what you are.
If your female and are used to putting on makeup …get tattooed eyeliner (expensive but worth every penny)
Don’t wait to stop work and start planning, making memories , doing things that you always wanted to do.
Realize the stages of diagnosis (shock, anger,sadness, acceptance)
Most of all you can still live a life with purpose ,..TEAMGLEASON.ORG, IAMALS.ORG, ALSA.ORG
January 11, 2020 at 2:02 pm #14231SheilaParticipant
The first pALS I met told me to remember “you’re not dying from ALS, you are living with ALS.” Four years post diagnosis I am still enjoying life, not the same as if I didn’t have ALS, just differently. I think it’s important to not allow your mind to take you to the ‘dark side’ but stay in the moment, focus on what you can do, not on what you can’t do. I realize it’s difficult in the beginning but hopefully will eventually become easier.
Research, research, research! Find what other pALS have found helpful. I recently attended the ‘Healing ALS Conference’ in SLC, Utah, where pALS shared what has help them in some cases to halt or even reverse their symptoms. I have been incorporating what I can afford into my regimen and find that I am less tired, less fasciculations, and more energy among other possible improvements. I suppose some of it could be a placebo effect but I don’t care because I feel better and more hopeful!
January 12, 2020 at 11:40 am #14233Diana BellandParticipant
Great advice, Sheila. I’m still in my first year post-diagnosis (March, 2019) and have to work at maintaining a positive attitude every day. Your comment was really helpful and I will keep your encouraging words in mind.
Thank you for posting.
January 13, 2020 at 11:53 am #14244Dagmar MunnKeymaster
I agree with you too Sheila – – well said!
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