Well I am not going to lie… the last year has been the most difficult on this journey. I got pneumonia three times and ended up in the hospital twice. The last time was the toughest as I was forced to get a tracheotomy because the pneumonia took away my ability to breathe. It was always my intention to get a tracheotomy but I just wasn’t expecting it so soon. The worst part about being in the hospital was that I was there for so long… over a month and during the summer at that. Hospitals and the staff are not familiar or aware of the nature of als so the experience was scary especially at night, when I was alone with no ability to communicate whatsoever. I can’t speak so communicating my needs was pretty much impossible. It has been somewhat of an adjustment getting the tracheotomy but it has really helped my anxiety levels. I am very fortunate that my caregivers as well as my whole family took a two day course to learn how to keep me alive with the trach.
To add insult to injury around the same time my neck strength significantly decreased which meant that I could no longer use my communication device. It worked with the use of my head movements which does not work when you have no strength in your neck. Enter the eye gaze system. As with the trach I had eventually thought I would use the eye gaze but I was not expecting it so soon. It has been difficult to get used to… definitely a steep learning curve. It lacks the accuracy of the other system and it takes many tries to hit on what I want… for instance, to like a post on social media it often takes me ten tries. Which is why I don’t often like posts. 😂There are days when I can’t really type at all… those days are my book reading days. Which isn’t that bad of a way to spend a day. lol. One of the hardest parts is trying to put in punctuation… so I usually leave it out and that is difficult for the teacher in me 😉
I was approached by I am ALS recently to take part in one of their fundraising campaigns and I was so honoured and happy to take part. I am ALS is the largest patient led advocacy group in the US and they do incredible work.
Check out the clip below…
Thank you for reading… Leanne xo
Leanne,
Thank you for sharing. I’ve missed your words.
I am bewildered by ALS and how it traps a beautiful mind. It still seems so surreal and misunderstood.
Thank you for the effort to share.
I think of you often and love who you are.
Harley
Leanne my prayers are always with you. So happy to hear from you. My sister in-law passed 3 years ago from ALS. I miss her terribly ,she fought hard to live and learn more about this devastating disease and she was praying for a cure. She and my brother went to Washington DC to àsk for trial meds for ALS. I always follow you. You are a inspiration Leanne. Thank you for all you do. My prayers are with you.
I love your story because it shows , even through the ALS you are an amazing wife, a loving mother, and a strong friend. So many of us, out here in the world, need to hear your story. Both the families that live with loved ones and our loved ones that are living with ALS. You are my inspiration and my sister and I love you.