It has been about six months since I last wrote about what physical changes had been occurring in my body. Many of you have been asking about my progression and I thought I would share here because I have been so bad at sending individual messages lately. In the past year I haven’t noticed too much in the way of decline and I am thrilled. It is normal for rates of progression to change, but I believe I have benefited from the stem cells and treatments I received from Dr Steenblock, in California last summer, as well as from the edaravone infusions (ALS treatment) I get from Japan.
My legs and arms feel about the same; I can still bear weight and transfer. I am happy that I have quite a bit of core strength left and can sit easily at the table in a regular dining chair. I feel like I have some weakness on one side of my back as I tend to lean to one side when I am in my recliner.
About a month ago I stopped eating by mouth, because I was getting nervous about choking and aspirating into the lungs. Aspiration pneumonia can be fatal in ALS. It has been so hard not being able to actually taste food. The tube has been a lifesaver, as it has kept my weight up, but it is definitely not a satisfying way to consume food. Cory and the kids were ordering Chinese food one night and I just had a total meltdown crying. I miss food so much!!
I have had a lot of people asking about my lattes. 😉 I still get one most days, but sadly it is getting more and more difficult to drink. The problem lies not so much in swallowing, but in sucking it up the straw. Seems unbelievable just how vital a role our muscles play! Most days I am able to drink about a quarter of my latte, with half being a really good day. Lol. I should not bother anymore, but even tasting a few sips significantly brightens my mood!!!
When I was first diagnosed I began praying hard for my breathing to remain strong. I would give up my mobility, my speech and my ability to eat if I could still breathe. So far I would say that I have been very fortunate in this regard. I started the journey with a lung capacity of 98% and within 18 months dropped by about 50%. In the past 18 months, I haven’t noticed much of a change at all. I went to the hospital last week for a lung function test, but because of my mouth’s weak muscles, I was unable to make a tight seal on the machine, and therefore couldn’t get a reading. Instead they drew arterial blood which measures the amount of oxygen and carbon dioxide in the body. The test checks lung function by determining how well they are able to move oxygen and remove carbon dioxide. I am so happy to report that both numbers were in the normal range!
So while there have been a few changes over the last six months I am grateful, because I know it could be a lot worse. I would really appreciate your prayers for continued slowing of progression or stopping altogether, as well as for my breathing to remain stable. Thank you in advance. 🙂
Until next time…
Much love is sent your way Leanne! You and your family continue to be in our prayers.
May you be encouraged knowing how much your blog posts mean to us. You are an incredible woman of strength, beauty and hope.
💗Jen and John English
Thank you so much you guys! That means a lot.
Thanks for the update Leanne. Sorry about you not being able to eat food but being able to drink latte is positive. Great to hear about your good lung function results! Your updates are a great way to connect so keep them coming!
Thanks Shane! I will continue;)
I think your success is shared by everyone because it’s proof that prayers really do work! I’m amazed by you always. Your faith is inspiring to me. When mine has wavered I’ve turned to your example and draw on it. I believe in you and I am a believer in the work God is doing too. We have much to celebrate. Praise be to God, you and your community. Miracles and healing are happening. Your proof. We love you and promise to continue praying.
I love your comments! You always have wise words to share.
Hi Leanne,
It had been a long time since we met in person! I still remember when your sweet Silas joined my grade 2 class, and the times I interacted with Olivia at school. What a privilege it was to spend that time with your dear children, and to get to know you! Thank you for sharing your story with us. I will be praying for you!
Stephanie Dyck
How lovely to hear from you! Those were good times:) I really appreciate your prayers. I hope you are doing well. xo
God bless you Leanne & keep you ever in His sight, I pray for your breathing to remain strong & for your condition to remain stable.
God bless your family with all that they need every day. He is with you always.
Thank you so much Bev! I am so grateful for your prayers. xo
God bless you Leanne and your family. I pray for you in my daily prayers. Your faith in God and your spirit of perseverance makes you a strong role model, even for those, like me, who have not met you.