It is a great time to recognize that when we are looking for information we can rely on each other to find strategies that can be helpful. The Carole Arsenault story is a good reminder of this. Please read more about Carole’s journey with Ataxia below.
Hello everyone. My name is Carole Arsenault and I was 53 when I was diagnosed with Wernicke Encephalopathy (WE) in 2018. Wernicke encephalopathy is an acute neurological condition characterized by a clinical triad of optical issues, acquired ataxia, and confusion, all due to cerebellar dysfunction. It is a life-threatening illness caused by a thiamine (B1) deficiency, which primarily affects the peripheral and central nervous systems.
My symptoms began in 2016. First it was an occasional issue with my balance, progressing to the need for a cane, then a walker, then a seated walker as my strength, balance and coordination was dissipating rapidly. During that time I fell down the stairs in my home twice, once causing a concussion, the other causing a serious leg wound, I finally saw a neurologist who diagnosed me with a functional movement disorder but no explanation as to why. I proceeded to become more and more ill, finally ending up spending 3 months in bed, unable to eat or walk unaided. I finally ended up in the hospital in April 2018 with severe dehydration, severe malnutrition and starvation. My stay lasted seven weeks, during which time the doctors finally came up with my official diagnosis.
Before all this began, I was an IT and Management consultant with over 30 years of experience. My job allowed me to travel all over the globe on different assignments. I did a lot of personal travel as well: wine tours of Italy, trips to England, the Caribbean and all over. I used to host dinner parties and wine tastings in my home for my friends, I enjoyed cooking and wine immensely! I loved my life, and used to walk 5 kilometers a day for exercise. As you can imagine, most of these things have disappeared from my life due to my wheelchair and other physical limitations.
After my diagnosis I was severely depressed, and lost all interest in things I used to enjoy. I had to sell my home and move into an accessible apartment with my husband. Even still I managed to fall twice in November of last year, fracturing both my hips. After another 5 weeks in the hospital, during which my husband suddenly passed away, I came home and decided that things needed to change. They MUST change in order to survive alone.
I began working out at home to regain some of my strength, and finally got a spot in rehab in January. Things were progressing well, I could walk between the parallel bars and just recently began attempting to walk with a walker again with the assistance of my physiotherapist of course. Now, with the virus and social distancing, I can no longer go to physio so I must do what I can at home unaided.
I am on a 2 ½ year waiting list to see a neurologist that specializes in my condition so as you can probably understand, I had many unanswered questions in my mind. I began heavily researching my condition on the internet, and joined every ataxia Facebook group I could find. There I found many helpful people much more knowledgeable than myself and I learned a great deal.
I know that there is no cure for my condition, but there are things I can do to slow its progression, like home exercise, proper nutrition and more physiotherapy (when this nightmare virus is contained).
My disability and all the events that led up to today have taught me a great deal. Never take anything for granted, especially the ability to walk! Never give up! No matter how bleak it seems, get up, get going, and do something, anything, which will improve your condition. Finally I have learned that there are many kind, generous and knowledgeable people out there willing to help you. USE THEM. Search them out as I did, they are crucial to my journey towards getting on my feet again, and regaining some of the abilities I need to be able to resume some of the things I enjoy in life. No matter how bad you feel, please never give up hope!
Thank you for taking the time to read my story. If it helps just one person, that would make me very happy indeed.
Hopefully you got something out of Carole’s story. Please leave a comment below to let her know what you thought.
If you want to reach out to Carole Arsenault, she’s on Twitter at @carsenault5 or on Facebook at Carole.Arsenault.3386