Len Sansoucy
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Okay, let me take a shot at this topic. After I was diagnosed one of my daughters gave me a subscription to Storyworth as a way to vent, pass on stories and share my experience through writing because is was tough emotionally to discuss verbally what I was experiencing. The writing proved cathartic and helped me in many ways. Attached is a story I think relates to this discussion topic so I thought I’d share it here. As a related note I was able to attend last nights Red Sox game and even throw out the first pitch! I hope you enjoy my story and that it brings you comfort in knowing we are all in this journey together.
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<h1 id=”title”>How has ALS most impacted your life and have you discovered any positive aspects from your experience with it so far?</h1>
<p id=”byline” class=”body-text with-inline-links”>by Leonard Sansoucy on July 27, 2021.</p><div class=”ornament”></div>
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<div class=”small-12 medium-8 columns”>I realized going into this essay that it was not going to be easy or comfortable for me to write about the topic. I have been trying to draw some meaning from the situation that I find myself in and my ultimate final goal in this is to find personal peace and to live my remaining days with dignity and composure. That is what I’m striving for and this project occupies my days from when I awaken until I go to sleep at night. Sometimes I’m successful and at other times I feel like my sanity is hanging by a thread.
I couldn’t manage either my daily physical tasks or the emotional stress without the help and support of those around me. That, I have discovered is the silver lining of this situation I find myself in. All the minutiae of everyday life has been stripped away and I’ve been granted a much clearer vision of what is important and what is just meaningless static. I need certain physical objects to help me function and move around. The rest, I have found is just window dressing and not worth the effort it takes to collect and maintain them.
In hindsight, which as we know is 20-20, I’ve come to the conclusion that personal relationships with our family and friends is what it is all about. Sounds simple, but unless you can truly grasp how fragile our individual lives really are, you can get carried away with all the nonsense that we think is important to deal with. I know that I was guilty of this attitude in the past and all it took was speaking to my neurologist and receiving a diagnosis of a fatal disease to snap me out of it and clear my vision.
My reduced mobility has shrunk down my physical world a great deal but at the same time opened my mind up and has helped me to really think through some things. How’s that for a cosmic dose of irony? I would never even have previously considered the possibility of things like yoga nidra, massage or speaking with a therapist. Well what do you know, I’ve now experienced all of these things and they have all been hugely beneficial to me. Go figure, I guess I didn’t know everything after all. I don’t mean to come off as preaching or pretending to now know all the answers. If anything, the opposite is proving to be true. The more I learn and the more time I spend pondering, the more I realize I’ve still got a lot more figuring out to do.
Getting back to the people and organizations responsible in supporting me and helping to navigate through the ALS minefield. I’d be remiss if I didn’t take the time now to acknowledge how incredibly important they have been in getting me to this point in the journey. The disease is relentless and just grinds away at you physically and emotionally. Being a degenerative condition and with no cure just robs you of future hope and without a safety net around you it would be easy to just give up.
The VA has been a wonderful source of support. The numbers indicate some type of military connection to the disease but it’s true significance is beyond my abilities to discern. Putting that aside, I appreciate that the Federal government accepted the mantle of responsibility. If it was up to me to prove a connection between my military service forty-five years back and my diagnosis in November of 2020, I wouldn’t know where to begin to try and prove that connection. Luckily, instead I just had to show only two things in order to qualify for unlimited medical care. That I was a veteran and that I had been diagnosed with Amyotrophic Lateral Sclerosis. Once I accomplished those two things the gates were opened wide for me and they have been amazingly generous with their support. I am thankful for this and can’t help but wonder how other persons with ALS who are not veterans are able to cope.
While I’m pointing out people who have been wonderful in giving of their time and support I have to point out my circle of friends and neighbors. No job has been too small or too large for them to tackle on our behalf. I feel humbled and grateful for all that they have done. Last and certainly not least, my family that has rallied to my side with open arms ready to help with their intellect, time and love and support. It boggles my mind to think where I would be without them.
Finally, let me single out my wife Juli. We could not have anticipated or prepared for the life altering changes that have come our way over the last six months. She has answered the call in every way. From wife, friend, housekeeper, barber, cook, chauffeur, caregiver, physical therapist, household handy person to now even being my favorite nurse. Through her love and devotion she has managed to overcome her previously strong aversion to medical procedures and blood. She now runs my medicine infusions and even removes my IV needles. If that’s not true love I don’t know what is. She has always been and continues to be, my world. My sun and moon.
So what has ALS done to me physically up to this point? Well over the past seven months I’ve progressed from walking with a limp, to using with a cane, to using a rollator for support and now to needing a power wheelchair to provide my mobility. I have very little strength or movement remaining in both legs and my left arm. My right arm is still usable but certainly weaker than it used to be. My breathing is somewhat compromised but not yet an issue. On the plus side, my speech and swallowing are still unaffected. I don’t give this rundown looking for sympathy, I think/hope I’ve evolved past needing or wanting that. I do it simply to document my condition as it stands now. These essays have become a way for me to communicate more fully with those I care about most, so no topic is off limits. I treasure meeting with you all in person but it’s become very hard for me to try and keep my emotions in check enough to be able to discuss these things effectively. I find I’m able to get my thoughts out more clearly in writing and it’s also a way to leave my memories intact for the future.
So would I have willingly taken on ALS in order to broaden my mind. The honest answer is an obvious one. As the cowardly lion says so eloquently in the Wizard of Oz movie, “Not no way, not no how!”. Of course the choice was not mine to make. As they say, we only go around once so I’m just trying to make the most of the time I have remaining. Most serious medical conditions (i.e. cancer, heart disease, etc.) leave you some options and choices. Some degree of chance that you can beat it and move on with your life. Unfortunately ALS is not just any disease. It’s 100% fatal with no cure and no chance of your condition ever improving. The best the drugs they offer can do is slow the progression.
So no false hopes about what the future holds. My doctors have never discussed a timeline with me. My best guess from the research I’ve done is that I probably have about six months remaining. I have no interest in taking any extraordinary measures to extend my life once I am unable to communicate and move about. I plan to use the quality of life as my guideline. Once things degrade past a certain point it’ll be time for me to go. This allows me to know the disease that will take my life and how it will end. It also lets me do things like write these essays, have frank and honest conversations with the people that matter to me and get the rest of my affairs in order.
I’ve made arrangements with the UMass Medical Teaching Hospital to take my remains upon my death and put them to use for research and teaching the next generation of doctors and nurses. I feel honored and lucky to have had the opportunity to have set this up. I’ve also have been able to sit down and have some difficult but necessary talks with Juli about life after my passing. There are life insurance policies and plenty of money in the bank for her to live comfortably. That is a great comfort to me knowing that and being able to take care of some of those issues.
I’d be lying if I said I didn’t have some regrets or wasn’t angry about my condition. What’s done is done. I’ve had a good life and when it’s time to go I think I’ll be ready. I just want to end this now by relating a quick story about something that happened a couple days ago. As everyone probably knows by now I’ve been going for massages once a week for the last couple of months. It’s something I look forward to and it seems to make me feel better physically for the following few days. My massage therapist, Taylor, is a lovely young woman and we’ve had some nice conversations while I’ve been on the table. She even invited us to her wedding which we will gladly attend this weekend. Anyway, she has related to me that her relationship with her father has been rocky but she is trying to get to a better place with him.
During the last massage session she had opera playing in the background at my request and we were having a rather deep discussion about life and fate. Taylor said that it was her belief that people come into your lives for a reason and that she had finally been able to figure out why I had come into her life. I cautiously asked her why and she replied “I think it was to show me how a father is supposed to act”. I’d be hard pressed to think of a nicer thing that has ever been said to me and I was touched and moved by it.
I wish I could go back in time and have another chance to be a better father to my daughters and to have worked less and spent more time with them. That ship has unfortunately sailed forever but I hope that I’ve at least ultimately become a good person and perhaps that can be partially attributed to ALS and the wake up to life’s true values that it has allowed me to see.
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My gang, showing their unwavering support. Love you guys!
<div class=”sub-text author”>Leonard Sansoucy, July 27, 2021</div>
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My neurologist wrote me a prescription for the sfb and I buy the 500 mg Tudca capsules on line. I was pleasantly surprised that my insurance ok’d it. Presently getting an 85 day supply of sfb for just a $25 dollar insurance copay. I keep expecting my insurance to balk at the cost but I’m on my third refill now and just keeping my fingers crossed.
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David,
I’ve been taking the sodium pb and tudca capsules for almost a month now. The tudca is in capsules so no problem with the taste of those but the powdered sodium pb is awful. It has a very strong salty metallic taste and leaves a mild burn in the back of my throat. I tried mixing with a couple different fruit juices but these didn’t mask the taste enough, barely able to drink it. My wife got to work using her blender and I’m happy to report success. Using a combination of banana, Nutella, ice cream, creamy peanut butter and either milk or ensure she has been able to whip up very palatable if not downright tasty drinks. Sometimes I pick up a faint after taste of the sodium pb but it is easily drinkable. Just experiment with ratios of whatever above ingredients you prefer the taste of and you’ll be fine. In a few days I’ll be doubling dosage and reaching the final dose strength and that’ll mean two drinks a day. As a nice side effect these drinks also maintains if not increases my body weight which is what my dietician encourages me to do anyway. So don’t panic, it’s doable. Good luck my friend on your journey.
Len S.
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Dustin,
Thanks for the kind thoughts and good luck with your writing. My hands have gotten weaker so my typing days are numbered. I’m about to progress to voice to text to be able to continue and finish up some half finished stories.
len
