Despite the gloom and doom of the ALS diagnosis, there have been a lot of good things to celebrate in my life in the last six weeks since my last post! Cathy and I had a really relaxing week in Turks and Caicos in mid-December. I took a walker with me, which was very helpful to get around the resort. I had a Facebook memory pop up this week of Cathy and Hannah and I doing a yoga beach pose in Mexico six years ago:
I had the strength to hold up my girls back then. Today, I'm often counting on my girls (and Deagan!) to hold me up! But the ability to still get to the Caribbean and enjoy the sand and sun is awesome!
On Tuesday, December 28th, Deagan and Brianne got married. It was a very intimate time with our two immediate families celebrating at the Wakefield Grand in Quebec. Unfortunately, the pastor/officiant found out the morning of the wedding that her son had Covid, so she did the officiating over Zoom! Given that the paperwork is not signed yet, I guess they are not officially married; but the vows they shared with each other indicate they are tied together for life! Here's a photo of Deagan and Brianne singing a song to us after the ceremony and a picture with my mom, Orian, who celebrated her 90th birthday on December 25th!
Deagan and Brianne got married on the same day as Cathy and I were married 31 years ago! Cathy and I are 62 and 61 respectively, so we've shared exactly half our lives together. What a blessing that has been! I couldn't imagine life being any better than it's been with my beautiful, trusted and loving bride, Cathy. As life with ALS gets more difficult for me, Cathy's support of me is taking more of her time and energy. It's not easy for her, but she is managing it well and serving me with dignity and grace. I love you Cathy!
And now my ALS update.... There are only two drugs approved in Canada that have a positive impact on ALS. I started taking one drug, called Riluzole, in early December. There is no feeling of "improvement" when taking the drug; but based on the trials associated with the drug, it extends a person's life by, on average, 3 months. That's better than nothing, right! I've also been using a Bi-PAP machine each night while I sleep. You wear a plastic mask over your mouth and nose and it has a hose connected to it that pushes air into your lungs and then pauses for you to exhale. It has improved my sleep tremendously! I used to be waking up every hour, but now I might wake up once or twice during the night and feel very rested in the morning. Thanking God for that! This past week, I went to the Neurology Centre at the Civic Hospital to see if I would qualify for a clinical trial for a new drug that might also extend the life of those taking it. In order to qualify, the Vital Force Capacity of your lungs must be over 65%. My VFC was 67% back in October, but has now diminished to 51%, so I don't qualify for the clinical trial. Not being part of the trial is not heart-breaking, but knowing that my lung capacity is diminishing is eye-opening!
I've had to go for frequent blood tests to make sure that the Riluzole is not causing any kidney damage. All is good there. It made me remember, however, that my blood type is B-, or B-negative.
As I face the ALS situation, I know that I can't "be negative" in my thoughts. Instead, I need to "be positive". So my prayer every day is along these lines:
Dear Lord, this is the day that you have made and I will rejoice in it.
Things aren't always good, but you are!
Life is not always easy, but you are with me and for me.
Things may be out of my control, but they are never out of yours.
I am yours and you are mine.
I am blessed beyond measure and thankful I can pray to you in the name of your precious son, Jesus.
Thanks for being on this journey with me. I've updated the prayer points which you can find on the home page of the website or using this link https://www.faith-over-fear.ca/blank-page
May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope.