May 11, 2020 at 11:45 am #15299Kevin SchaeferKeymaster
Hey everyone! Hope you all had a safe and relaxing weekend.
Again, I wanted to thank everyone who’s submitted stories for our ALS awareness month project. These have been great.
Check out John Russell’s story:
“My illness began when I noticed I was tripping while running. In October of 2013, I was able to complete a 5K cross country run in less than 29 minutes. By July of 2014, I was diagnosed with PLS, two years later changed to ALS.I lived on a 20 acre property with horses, tractor & equipment, truck, trailer etc. My wife had been coping with Parkinson’s for about 12 years and considered me her caregiver. Our closest relative was over a thousand miles away in CO. It was immediately obvious that we could not continue this life. In a short time all was liquidated and we moved to a senior apartment where all cleaning and maintenance is done. Dinner is served in a restaurant setting each day. We have been residents about four years and still have no extra care.
[caption id="attachment_15300" align="alignnone" width="300"] Courtesy of John Russell[/caption]For me decline has been slow but linear, starting with my legs, now hands and to a lesser extent, arms. Speaking and swallowing have just begun to be issues. I can still use a rolator or forearm crutches to get around some. I use a manual or light electric wheelchair for longer distances. I can still drive using hand controls and I’m able to peddle an adult trike. I consider myself fortunate.My advice: don’t waste time letting ALS rule. Do all your body will allow. As much as possible remain positive. I also believe you can fight by excercising. Much is written from which plans can be made. You may continue to decline but maybe more slowly and you get satisfaction by fighting back. I also have been helped by knowledgeable physical therapists. Remain connected. Good friends will be there, don’t turn them away. Accept every invitation that is not beyond you.My thoughts for others: this always fatal disease is far more common than you think. Please support research. Encourage your representatives to expedite treatments. If you know of someone with ALS, reach out to them. No matter how far ALS has progressed patients still have active minds and the same need for human contact as everyone. #WhatisALStome”
May 11, 2020 at 11:59 am #15302Dagmar MunnKeymaster
John, Thank you so much for sharing your story with us! Your positive attitude and how you live your life is an inspiration for us all. Your advice to other pALS is spot on! Stay strong…stay happy!
May 11, 2020 at 5:18 pm #15308AmandaKeymaster
Thank you for sharing your journey and challenges with our community. Your positive attitude and advice is inspiring.
May 12, 2020 at 2:19 pm #15312Marianne OpillaParticipant
Thank you so much for sharing your story. I keep looking at your picture on the tricycle. What a great idea that I didn’t realize. My friends plan a bike weekend in DC every spring. They are talking about it again, but I am no longer feeling very stable on my traditional bike. I considered an electric bike, but very expensive. BUT a bike like you ride maybe the answer to participate on this trip with friends!!!
Also appreciate your comment regarding exercise, and “do all that your body will allow.” This is what I am trying to do, although sometimes fatigue makes me question whether exercise is helping or hurting.
Take care and again, THANK YOU! Marianne
May 12, 2020 at 2:45 pm #15314Diana BellandParticipant
I love that photo of you on your adult trike! And what an inspiring and helpful post.
Your advice about “doing all your body will allow” is great, and it’s so true that “fighting back” through exercise, whatever we can manage safely, helps maintain a positive attitude.
Your friendship has been such a wonderful support to me since I joined the Forum. Thank you!
Keep on keeping on, John!
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