Over Due Update

I am only writing occasionally know as things have or I should say had levelled off for me. I have been stable for a longer than expected stretch but as with all things dementia it all of a sudden changes and new challenges emerge. This time it is with my left side, particularly my left leg, and of course for the first bit I thought well that’s my bad knee I must of twisted it a little or something. I enrolled in physiotherapy, thinking this would be the fix. But after a couple weeks and no relief it was apparent something more was happening. Monitoring it closely, only in severe pain when lying in a rest position ie: bedtime. Pain worsens to the extreme level at night. I can walk, hope everything else at night. And suddenly it hits you…vascular dementia…vascular issue, blood flow issues. So calls in for Doctor to figure out a plan, massage and heat to try to minimize pain at night. Fighting the pain makes all other challenges more difficult, brings them more into focus. Small vessels disease a Vascular disease. Dementia effects are far greater than the brain 🧠. That’s the missing piece so often every one thinks it’s memory issues, it’s not ,there are so many other facets as to how one is impacted. Shit this is not what I wanted or needed at this point, but we can only do everything in our power to swart things but sometimes they happen anyways.

This has come at a time when I am already teetering a bit as my 65 birthday is in a couple days, and I think about my sister who never got to be 66. And as much as you try not too think about it I do. I have always said death doesn’t scare me and it doesn’t but I am not ready for that walk yet. I am finally living life as I always wanted with the man I always wanted too, and I am having a quality of life I never thought possible a few years ago. However I also am so acutely aware that my vascular dementia and it’s related complications can change things very quickly for me, that being said I plan on fighting to have at least till I am 85 with my beloved husband. So on with the good fight I go. Not sure what the next steps will be but I will update.

My life has been busy, Wayne was injured while working at the end of Jan so trying my best to take care of him and he finally had his surgery on April 11, so know it’s many appointments and treatment for the coming months. He has been a trooper through it all, I know he really misses is work, and know he will be excited when he can return. I have missed all of our trips as well, being his ” swamper and being able to support him in doing what he loves brings me a lot of joy. My advocacy work has been very busy, although not on the global stage very busy here in Canada and doing lots of work in smaller communities in BC. Which May will be a busy time, April has been full throttle. Getting ready to move on May 4th to Chilliwack, we bought a lovely place that gives us all we need and allows us to “age in place”, we are very excited for our move. but it has been admittedly a lot of work for me with Wayne being injured, but marriage is about each carrying the other at times and this is one of those times. It has actually been going smooth, it’s something I am good at. The only rough spot is that my vascular issues decided to play havoc at the same time. But still overall pretty smooth so far. Once we get moved, between Wayne’s physio and my physio, I have a speaking engagement in Oliver. Then at the end of May the Vast Conference in Calgary and Banff. So busy enough and hoping its total wind down after that. Better to be busy than stewing and Wayne helps keeps me on track. So taking care of one another, each doing what we can.

So do all you can, when and however you can, take the opportunities, the chances and find the joy and the love and drink it in.

On another note, at the CCNA conference, I had the pleasure of meeting a young man who is doing research ( nuero), at the university in Winnipeg. His ams is Turac, he originates from Turkey, his partner is Tia, they were here in Abbotsford to visit her family this last weekend and twice we had the pleasure of meeting with them. A delightful young couple. See pictures below. I am so blessed my advocacy has provided me so many opportunities to meet so many amazing people. This is the blessings in it all.

Some pictures as well from my trip to Montreal to the CCNA conference.