November 2023

Can’t believe I have Been writing blogs and advocating for as long as I have. I know I am not writing as often as I did, mainly because the things are in my head that I want to write about but I struggle to get them onto paper or I guess not paper but onto the right page. So things sitcandxseim about or get forgotten until suddenly here I am writing again. It is also in part because of many life changes and I can only manage so much, my advocating is keeping me extremely busy. So tonight I thought I would share a little of the things I have been up to and share some insight into myvadvocating work. I am also over the next while going yo be publishing here some of my blogs that have been sitting as drafts for a year or more.

So as most of you know, last January the love of my life, who. I married at 16, he was 18, and I reconnected, we knew instantly that we still lived each other. We often talk about and marvel at how deep our love for one another had to have been even all those years ago, in order to still be there over 40 years later, and after much life we both lived and the endured in the years in between. So after almost a year back together. Recomitted to our marriage, life is fuller than I could have ever hoped for. So much joy, so much happiness, so much understanding of the importance of this gift given to us to be together. Committed to make the absolute most out ofceach dsy we have together. We both feel better physically and emotionally, and people tell us how good we both look now. We also are not foolish enough to try to say we have not had to work through a lot over this year we have, but our commitment to each other has made it easiet to navigate the challenges life throws our way. including my dementia and my many complicating health factors, from my stroke to my heart issues. But one thing I know of with 100 % certainty is that in my husband, I have a safe haven for it all. He has been willing to navigate the tough days, the brain fogs, the bad episodes, like the one outside of Prince George where he thought I was going to die on the side of the road. It terrified him. I hate him having to navigate my vascular issues and my vascular dementia. But his love for me runs so deep. He is willing to walk alongside me every step of the way, to have his love and support, to have him understand, and say that we support each other, we help each other. I am deeply grateful that his love will carry me through the rest of my life. I had in the past spoken about how it was probably better to be on my own as I was for so long. I also spoke about still having hope to have love like this despite my illness. I can say now without a doubt that having a partner, someone to share all the joy, all the hardships with to have and be connected, to feel loved and cared for is better to help us live more fulfilling lives than anything else. Wayne slso knows being put in nature where it is calm, peaceful, is one of the best things for me. We spend our free time fishing, we bought a small fishing boat, we are rock hounding and looming for earth’s treasures, gold panning, petrified wood, fossils so much to uncover, and we both thrive out there. We are happy together, know living the life we always wanted to have together. So never give up, never quit believing, because you never know when all your dreams will come true. As for my health, many, many good days and some bad days, some really difficult challenges, but I don’t worry as much knowing Wayne will be there and he helps me overcome the fear when it grips me. Overall, my doctors are extremely happy with how I am doing even they say love is the best medicine, I couldn’t agree more.

Know that I’ve updated you on the personal front, my advocacy work continues, and I work extensively with the CCNA ( Canadian Consortium on Neurodegenerative in Aging), so a lot of research work. I am a me.ber of their EPLED Team, we work along side research groups, researchers, government, and other organizations, and have been instrumental in making huge in roads and changes, that know see researchers having people with lived experience as co- colaborators in their work. I’ve been to conferences in Toronto twice in this year and in Montreal. I am working with Dr. Eric Smith, out of the University of Calgary, with their VAST Team, which also has me working on a documentary, which will be doing filming later this month. I am also talking at their conference in Banff Alberta in May. The work they are doing is specific to brain health/ including vascular dementia, as well as heart/ stroke and the connections there in as well as the connection to M.S. I will be speaking in Cawston BC on Dec 5th at Row Forteen at a special event/ memory cafe, helping reach the smaller communities. Doing these types of events is very special to me. I will also be at the CCNA conference in March in Montreal. Still working with the Driving with Dementia team, as well as just completed working with the Essai group, along side Radiologist, Neurologists, MRI Tech’s etc, working on how to improve the health care system so that as treatments come on board people can actually get the adequate tests in the tome frames needed so they can actually access these treatments. That was an incredible week.

So, as you can see, I am staying engaged, still doing my best to make a difference for others, but also trying to ensure my priorities are that my husband and I live our life together fully. He must come first with me and vice-versa. We want to have as much joy and happiness as we can with one another.

So wherever you are now that I am here, reach out anytime, even though I am not writing as often I am still here to help.