I have been getting a lot of messages asking where I have been, and if I have declined too much to type anymore, so I thought it was time for an update. I can’t believe it has been almost a year since my last post. Definitely a lengthy hiatus! Here in BC, we had a slow start to summer, but now that it has gotten warmer, I have been enjoying getting outside, and I’m still typing. : )
Physically, I am still doing fairly well and, praise God, my breathing has remained stable for the past three years. It is in my opinion, a miracle. My breathing declined rapidly in the second year and since then seems to have plateaued. So if you could keep praying for my breathing to stay as it is, that would be so appreciated. My neck and core are slowly getting weaker, which presents a number of challenges. One of my biggest issues lately is the stiffness in my jaw. It has caused my jaw to lock constantly and when moving it back into alignment my teeth feel like they are going to break. I continue to be so grateful for my caregivers who adapt to these changes, and seek to make me as comfortable as possible.
Emotionally, I am doing alright. I continue to have good and bad days. I struggle with not being able to enjoy my life as before. I realize it’s been over five years, but the grief still comes in waves, often when I least expect it. As many of you have noticed, I have not been on Facebook or Instagram for a long time. I was finding it difficult to see everyone carrying on with life, relishing in things that I can no longer enjoy. It is a tumultuous journey. I really miss the people I only connect with on social media, so I am going to start checking in occasionally.
I have been spending a lot of time on Twitter. It has been somewhere that I can advocate for the ALS cause, and also connect with the ALS community. I am very blessed to have gained an amazing Twitter family. The platform is a perfect mix of politics, advocacy and opinions, with some random funny videos thrown in for good measure. I also like that there is a cap on how many characters per tweet, which means I don’t have to type a lot to get my point across. LOL. Apart from Twitter, I have been doing a fair amount of reading and attempting to keep up communication with friends and family. I am still managing some of the household tasks and appointments.
I will sign off here for now. I hope you are all having a wonderful summer. I will try to be more frequent with writing. : )
Thanks for reading… Leanne xo
Missed your posts Leanne! Glad to hear back!
Love and prayers <3
-Renee
I was really happy to see an update from you! I think of you often Leanne. You are truly inspiring💗
So glad you are back Leanne!
We know God is in the business of miracles Leanne, and we are so grateful for His watch over your breathing. It is important that we have knowledge of specific prayer request for you, now we will include the neck and core , and the jaw region. Wonderful that you can still get outside and enjoy the warmth, as I am sure the hotter the better for you. You are so strong and courageous Leanne, and always so grateful for family and caregivers in all capacity.
Bless you
Helen
I am so happy to read your post today. Thank you for sharing your vulnerabilities and your journey. I have such fond memories of you and your very sweet not so little anymore, Silas and Olivia. I’ll continue to pray for you, specially that your breathing continues to plateau.
Sending you love.,
Heather
Thank you for the update. You and your family have been on my mind and heart these last few months!! I will continue to pray for you all.
My Darling Daughter in Law, I think and 🤲 Pray for you each and every day. I I feel so Blessed to have you in my life and will continue to 🙏 Pray for Gods Blessings on you and your Family. 💕 Love you 😘
Glad you’re back!!! Thanks for the update. I often wonder how you’ve been! I’m sorry that it’s been so hard. Cannot imagine.
Xoxo
I am thankful for your update. I have wanted to ask your kids how you are, how everything is going (most recently I see Silas more often), but am afraid to do so because I don’t know what to say. I’m sorry that I don’t know what to say. I think of you often, and also pray for you and your family. Thank you for coming out of hiatus. I am grateful. I will pray for a continued plateau. Prayers for your neck and jaw.
Thank you for reaching out and sharing.
I loved seeing you on the news and feel so inspired by your strength and advocacy work. Please know you are in my thoughts and prayers.
Much love 💕 Deb
Thank you for the update LeeAnne! It’s good to hear your breathing is stable and that your care is good, such blessings!
I think of you & your family often. I’m just in Calgary as Colin has just retired!!! So happy about that but it’s strange to be back in Calgary after two years of island life. Heading back today after a very short trip.
Keeping this short for now…enjoy the sunshine & the birds & the clouds when there are some floating overhead🥰❤️ Praying that you have plenty of precious moments to share with your cherished ones🙏🏼💕
Always makes my heart happy to hear from snd about you. To me, you will be “Amazing Leanne” always and forever. Hope your breathing continues to be stable. So glad you have the kind and knowledgeable caretakers that you do. Always in your corner. Connie
So happy to hear from you today……. Every time I drive by Evergreen School I think of you …… the difficult journey you are on and the positive energy you always are able to share. God Bless Leanne ….. your posts are a pleasure. You are in my prayers 🙏🏻
I can’t begin to tell you how much I appreciated reading this! Yes it’s been awhile- but I understand. Please please keep writing. For everyone (including myself) who truly loves and cares about you and the family… we all look forward to getting your updates. Keep writing ✍️ keep sharing – we will keep reading!
You are truly a gift to this world, Leanne and whatever we can do, or be there in any way that helps you, you have so many that will. So happy to see you here! Much love XOXO, Robyn
Hi, I was diagnosed in 2016 too. Your words ring true. I live in Northern
BC. Thank you for speaking truth about living with ALS.
You are in my thoughts and prayers. God Bless you.
Hi Leanne, I follow you on Twitter and am amazed at your kindness and grace while dealing with the horrible effects of ALS. You are an inspiration! Thank you for sharing your story with us.
Thank you for your kind words Lisa and thanks for reading. xo