May 24, 2021 at 1:00 am #18694Dagmar MunnKeymaster
Hello Everyone! Here is another member spotlight – – today John Sprague shares his ALS story with us. We thank John and everyone who have submitted their stories for our ALS awareness month project. These will continue to be featured every Monday in May. Be sure to look for announcements about additional member events that will also be happening this month.
“The Road to Diagnosis” by John Sprague
I injured my back in 1979, went years in pain, and learned to deal with it. It got worse by 2014, and I finally saw a doctor and was referred to therapy. Therapy gave me a contraindicated exercise, and it damaged my L4/L5 nerves in my left leg, resulting in foot drop. By March 2015, I started getting fasciculations in my left calf. By July, it was diagnosed as Benign Fasciculation Syndrome. In December 2015, I had surgery, and the symptoms were supposed to go away, but they didn’t. My brother died in January 2016 from bulbar ALS. It took him just over three months from his diagnosis.
By March 2017, fasciculation had spread to my right leg and left arm. Neuro at VA gave me eight different types of pills to “fix” it. Six months later, I went to a non-VA Neuro. From September 2017 through October 2019, the non-VA Neuro watched and poked while the fasciculations spread to my face and torso, and my left leg started losing muscle. Then doctors said I had cervical myelopathy restricting my spinal cord at the end of 2018, and after that surgery, nothing changed, but weakness in my shoulder and arm began. On October 3, 2019, I was diagnosed with ALS. The VA still has not taken the steps that they need to document my condition, and that is an ongoing fight.
I cannot run, jump, or walk far. I get so exhausted, but I can walk. I go to the store and do OK with a cart for a short time but must sit down halfway through shopping. My spouse is an angel, and she helps where she can. My condition is asymmetric, and the right side is much stronger than my left. I can still drive, which makes my day. I am lucky this process has been very slow.
I have started to have swallowing and breathing issues, but they are minor so far. My voice is also getting very hoarse. I love to sing along with the radio, but that does not work out so well anymore. I have always been an optimist and find myself struggling with a positive outlook sometimes. I get a lot of comfort and knowledge on the ALS forums, which is a huge help. God is in charge now, and I am making the best of what I can while I can!
May 24, 2021 at 6:30 am #19009Kathy stitzParticipant
Thank you John for sharing your ALS story with us. I’m so sorry your brother died from bulbar ALS shortly after being diagnosed. I have bulbar ALS and it tends to be more aggressive and progress faster than limb-onset. Most people with ALS have limb-onset. I agree with you that it’s very hard to have hope with this condition since there’s no cure and there’s not much that can be done to stop or slow the progression of it. Like you said, all we can do is try to make the most of the time we have left and try to cope as best as possible. Thanks again and best wishes.
May 25, 2021 at 2:37 pm #19040Chris AustinParticipant
Thank you for sharing your story. My Mother passed away 2 months ago from ALS within a year from her diagnosis.
About 4 months before her symptoms, she fell backwards off a short ladder and hit hard on her rear and lower back.
She always felt that accident lead to her ALS. I wonder how much research has gone into identifying how many ALS patients have had bad injuries?
May God bless you John in your brave journey. My thoughts and prayer’s are with you.
May 26, 2021 at 9:11 pm #19060Jim KneppParticipant
I, like you, am a vet with ALs. You do not mention it in your post as to whether you have reached out to a service organization to help you in your dispute with the VA. If you have not, I would suggest that you contact the nearest office of the Paralyzed Veterans of America (PVA). I was diagnosed at the Northwestern Hospital ALS Clinic, Chicago, Illinois, on April 23, 2014. I had no knowledge of he VA benefits for vets with ALS. Northwestern sent my records to the Indianapolis VA Hospital (we lived in South Bend, Indiana, at the time). The PVA received notification somehow, and I was fully enrolled in the VBA system by May 1, 2014. We moved to Florida in July of 2015, and the PVA transferred my case to their Gainesville Office. I contact my PVA Service Officer whenever I have an issue with the VA, and wait for the resolution. Again, don’t argue with the VA – just contact the PVA.
July 1, 2021 at 9:00 am #19736KevinParticipant
I am with you, brother. I was diagnosed with ALS in May 2012. It was very slow progressing at first. Mainly in my hands, arms, and shoulders. Ironically, my shoulders were always my best asset, and I was proud of them. Within the last five years or so, it has progressed to my legs. I can still walk, but with much difficulty, and not very far. I am faced with going to a nursing facility, since if I cannot walk or stand, my family will no longer be able to keep me at home. My wife happens to be meeting this morning with our financial advisor and an attorney who specializes in this area. Like you, I have come to terms with this disease for the most part. The hardest part, for me, is how it has affected my family.
July 1, 2021 at 3:06 pm #19739BillParticipant
Thank you for sharing. It’s too bad your neurologist too k so long. I think mine would have if I hadn’t insisted on getting to a university ALS clinic for diagnosis. I too lost a brother to a related neuromuscular disease. Mine started in my shoulder or hand also. If you haven’t been tested for genetic mutations you should. You likely have one with your brother having ALS. Some of the hopeful stuff lies with familial ALS. Good luck.
July 1, 2021 at 9:47 pm #19754john sParticipant
Thanks for all the positive feedback everyone.
I have signed up with the PVA based on the recommendation from the ALS Nurse in Tampa VA. Waiting now for them to be listed as my reps. I am 100% disabled based on my spine injury from 1979 at this point, and I did that without the aid of any rep. I get advice and guidance from Hadit.com and monitor their forums regularly (I could probably qualify as a rep at this point, have helped several vets get service-connected for many different conditions at this point).
I was finally diagnosed with probable ALS by the Tampa VA Neurologist just this week. They will take up my treatment now, so my “squeaky wheel” got the grease. The next step is to get a DNA panel run, there are 50+ genes that they can check now, and that list is growing pretty fast now. My brother and I are the only ones on both maternal and paternal sides of the family that had ALS, so who knows what is going to be revealed. Just hope that whatever caused it happened after my children were born :-).
VA handbook on ALS was a good place for me to poke the local VAMC with because I prompted them to read it. I do not think that anyone was paying attention to it because they did not do what the handbook said should be done. I am good at that part, lucky me.
There are studies with mice that have shown that injuries to motor nerves can trigger ALS. These studies really cannot be done on humans because nobody wants to let some researcher sever the nerves and see what happens. Just can’t be done! However, there are too many stories like mine that support that nerve damage can trigger ALS. I read at least 3 news articles and a few reviews, as well as some papers that were published in professional journals on this topic. At this point, I do believe it is a bit more than suspect due to a growing consensus in neurology circles.
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