If I had a Time Machine I would have gone back a week and started this blog from the inception of our new reality. However, this I cannot do but... Last week I posted this on FB as the 'coming out' message...
MS SUCKS!!! I have been holding my breath for some time. Today I am trying to catch my breath. Anxiety, fear and hope for a positive future are all running around in my mind.
As most of you know, my wife Allison was diagnosed with MS almost four years ago. The first year was spent dealing with understanding the disease and learning, through therapy, to deal with the stresses and realities of living with Multiple Sclerosis.
Two years ago, my wife’s relapses became more frequent. We entered into a second phase of treatment which included chemotherapy, but were not seeing much in the way of positive results. Slowly my wife became weaker and more disabled as we moved from needing assistance while walking, to a cane, a crutch, two crutches, a walker and for any stretch of distance (a mall or groceries) a wheelchair. The nerve pain that my wife deals with daily would cripple me if I had it for a hour. The fatigue, pain and exhaustion has left her bed/couch bound for the better part of the last 18 months.
Our lives slipped into this regular day to day routine with no indication of getting better. Downward seems to be the expected reality. Allison loves teaching and has tried her best to maintain a few days a week when possible, but that has been very difficult. I have changed my touring schedule several times to accommodate being home where I am needed. This is our life. This is our normal… until ten days ago…
Our neurologist in Ottawa recommended us to the team who has been having success with the Stem Cell Bone Marrow Transplant. We just found out today that it is official. We have to relocate to Ottawa for 6 months up to a year, while she has this treatment. There are terrifying details that come with this procedure. There are only 8 a year done and we feel like we have won the most horrific lottery in the world. We are so excited and scared for this procedure, but for the first time in a while we have hope of reigning in this beast of a disease and in a few years we are encouraged that we will be able to look back on this time and know that we did the right thing.
The next year is going to be some of the hardest times we have ever faced. We have a great medical team behind us and the wonderful support of friends and family.
During this time I will be less active with tour dates. I had hoped with the successful response to “A Good Dog Is Lost” to be touring a lot more this year, but it appears it is not in the cards. I will be doing Watchmen and solo shows as much as I can, however priority is getting through this time and being there for Allison and the girls.
For friends who have been there for me this last 2 years I want to thank you for your support and generous ability to listen to me confide during some of my darkest times. You know who you are…
Wish us luck.
Ken and Allison