Category: Stress

So this year has been and is gearing up to be a very busy year with my advocacy work. It helps keep me well, keeps me engaged, helps me continue to learn despite the dementia. It keeps me propelling forward, always challenging me.

Some days my brain is too muddled and things have to be put aside, but I use that I term as [work arounds] to help me figure out new ways to do things that have I  otherwise would not be able to do.

Sometimes it’s like living in one world ( living with dementia) , and still trying to function in the regular world. That is not easy for people with dementia, because all though we try to ensure others understand, clearly like in all other aspects, we can help them have a better understanding but they truly cannot as the saying going ( until you’ve walked in their shoes).

So many speaking engagements this year, I love them, being so engaged with people, sharing so much, allowing people to have a voice.

I am part of the “able team”, advisory board of the INeuron research project. Which is new innovative approach to science. This is a 6 year commitment i have given them. I am also part of Epled group which is the advisory team for the CCNA  ( Canadian Consortium in Neurodegenerative Aging) i have been involved with this since it’s inception, and will continue to work with them. We have changed and impacted the world of science. I love the knowledge, gaining a clear and deeper understanding of the how’s and why’s. I love the incredible people I have been honored to work with, collaborate with, seeing where we are, having a voice in where we need to go, being able to ensure the impact for people with a loved experience is at the forefront of all work being done.

I am working on projects for driving with dementia, dementia and palliative care, and many others, working with the Vast team out of the University of Calgary, this is work being done on dementia, heart and stroke, and of course is near and dear to me with my vascular dementia.

In and around those things there is life to be lived, it is all part of my quality of life. Spending time with my family and friends, having time with my husband. Being out in Nature as much as possible.

All of these things keep my calendar full, but most of these things gs I do as and when my system allows. Some things take a lot of planning, ensuring I have given my system enough rest, nutrition etc to ensure I can manage my commitments. I have also learnt to ensure that when I am asked to speak or participate that I am provided all I need to help me be able to do it successfully.

On another note, and this is difficult for me to write about, but I feel I need too. I am Canadian 100%, I watched when Trump was in power a few years ago, at that time I likened him to a modern day Hitler, when he got back into power, I cried. Even though he is head of another country. I have many friends in the USA, I have spend a lot of time traveling there, I am afraid for them, I feel even though we are a neighbors, we cannot let our guard down, yes the tariffs have bern paused for a few weeks, but I don’t people for one second we can trust this man or anyone around him. While I believe everyone has the right to their opinions and beliefs, and I will always respect that, I am also not afraid to say that for the first time in almost 66 years of being on planet earth, on being a Canadian, have I ever felt the trepidation about the coming days and I don’t think that will leave until he is out of power, the threats he has placed us under deserve our attention. While we cannot live I fear we must pay attention. I will be scrutinizing every candidate in our own elections, I will not just vote be cause of a party affiliation, we have seen how people we use the cloaks to hide their own agendas behind, so I will be paying close attention. So while I hope we have all learnt the importance of ensuring we are manufacturing and producing goods and buying goods from home, going forward, hopefully while we fo that we can maintain friendships, and one day maybe feel like we can travel again to our closest neighbor. I am sad that having yo chose otherwise right now will impact our friends and neighbor, but times call for action and we must send a clear and string message…Canada is not for sale, Canada will not be bullied. Canada will remain strong and free.

Well hello everyone, it’s been a while once again, since I’ve written, but here I am on a beautiful Sunday Morning, enjoying coffee and thinking it’s time for a little update.
We will start with the health related things, I have been holding and maintaining very well, for which I will accredit my husband with, for he watches over me and takes such care of me, for which I am ever grateful. I recently had a few rough days, which, brings me to remind everyone to keep a check on these things which can wreck havoc with our brains. Really bad brain fog, many lighting bolts going through my head, truthfully it almost renders you incapacitated. I thought it was just the low pressure system that had moved in, but it was in part that, weather systems can create difficulties with our brain function, but it was more than that, I had or have a sinus infection, due to the air quality, they gave me a steroid spray, which alleviated things somewhat but not enough, I am know on a course of antibiotics and day two of them has already seen a vast improvement. So we must remember when things take a down turn to see what else might be going on, an infection, creates inflammation, both of which create really difficult days for us. So please keep it in mind, it is not just things like UTI’s, which seems to always be the go to thought, any type of infection, can wreck havoc on your system and especially your brain. Luckily for me my husband helped me get through the worst two days, difficult for him, it’s frustrating, for both, but he continues to amaze me in his willingness to do his best to understand my bad days.

Ok, know on to the other things, that being life, yes life, I am living it, making the most of every day, enjoying eve Ty minute life is giving me with my husband and family. Life is so full, it feels rich, it is great to have and feel loved and cared for. I love being out on the road with him, and although it is his life’s work, I help with the parts I can, we have created many wonderful memories, and I hope we get to create many more years of them. Currently I am home, Wayne is out on his own for two trips, as I am readying us for a two week holiday, for which we are very excited. Part of it will be driving many many miles, in our personal truck, versus the work semi truck, we both have a love of the road and driving, we will be visiting family along the way, the second part will find us out in the back country, camping and fishing, again a love of both of ours. So I am here getting everything ready, while Wayne finishes up the work runs before we head off.

So that about sums things up, I hope you are all doing well, enjoying your summer, it’s going by quickly. Being able to be on the road with Wayne has provided me with one of the nicest summers I’ve ever had, again giving me much to be grateful for. Be well, keep living your best life and treasure each moment with those you love.

Yes it’s been a while again since writing g. It’s not that I am not thinking about everyone and I do keep tabs on how people are doing and I am really looking forward to seeing everyone at DAI event next week. I am honored to have been asked to speak. DAI and all its members has it will always be who I will give credit for helping me get my life back after my diagnosis. Helping me regain confidence in myself, helping me find my voice ( although at times some wish there was an off button)..hahaha. Friendships formed for life, opportunities provided. I am forever grateful. I also continue my work with the CCNA and Agewell, both to whom I am grateful for all the eork, opportunities they have provided and I am so very proud of my work within the CCNA and the EPLED group, and the sharing work we have done and the tremendous Impact we have and continue to have on the scientific world. Helping them understand the needs and wants of people with the lived experiences. It truly has given me a very different perspective of their world and learn about the processes of the very important work they do. Again more friendships and connections and being able to be part of so much work that gives me reason to have hope for the future for so many with a variety of types of dementia. I am still maintaining better than hoped for, and I am hopeful it will continue that way for a good long while.

I never dreamed that I could be living my very best life at this stage despite a diagnosis. I have long said we can and should be striving to live our best lives adjusting and adapting as required but not giving up. which can be difficult when you are handed a diagnosis without any resources to help you navigate through those dark days, so I fell fortunate and blessed that DAI, CCNA and others have been so instrumental in my well being.

So as I sign off, until next time we are traveling the Coquihalla highway here in BC and the going to take the 5A highway to change or route up a bit as we head back to Red Deer to pick up another load. Please remember when you are on the highways and byways to not be distracted, stay alert and drive according to conditions. There is far to many distracted drivers. I am ending off with so.e photos from our travels.

It’s Friday, I am sitting in the semi, getting ready to head out, it has been three weeks since I have been out here, I took some time out to attend a Vascular conference in Montreal. I am happy to be in my seat heading back out on the road, I treasure these trips, this time spent together. I will have been out of the truck at the beginning of June, when I will be heading on a short trip to Seattle. Something else I am looking forward to. Life has gifted me with so much to be grateful for. On Wednesday, we spent the day out rock hounding and enjoying discovering places and spots to enjoy in the back country, and we truly found magical places. I did have a little blip, my vision, balance and coordination went, which resulted in a fall, no injuries, hurt pride maybe, it cleared after a time and I was able to fully enjoy the day, is it part of dementia yes, but actually it is part of my vascular disease which in turns become the dementia piece. It is the Vascular pieces that cause the most problems. Living with this illness is a continuous learning process and learning to understand the impacts between the various parts of our body and how it affects us when one or another piece goes awry. Luckily once my blood flow starts flowing in a better fashion, a lot of the challenges I am faced with subside, but I still have to luvecwith these events and my husband who watches for signs, he is learning all the time too, and I am very blessed that he does so willingly. I think if we can remember that any one of us can or could end up facing any Vast number of illnesses or health problems, then learning to help each other with them instead of resenting them becomes more doable. We can then support our loved ones, and we can continue ue to enjoy life with each other. We don’t have to try to ” fix it” or change it” just help each other navigate the ” bad days, or rough parts” with compassion and understanding and mostly with love. I try my very best to explain, (although I have trouble finding the right words at times), to Wayne so he understands how something like when my vision, balance and coordination went effects me and how best to support me at those times. He truly is remarkable in his care of and for me, his love for me is so evident, again I am so extremely grateful for the gift of having him beside me.

So truly trying to ensure that I make each day the best it can be that I can enjoy every precious moment of our time together. All the while ensuring I do all I can to

stay as well as I can.

That’s all for now, be well remember to be do what you can too live your best life.

I started to write this in March, then in April, we are now staring at the end of May so thought I would try to write and update.

March 2023

Well its been a while since I sat down to write, life has been busy, moving is a lot of hard work. Everyone knows that I have been the queen of moving, but this move was likely the one I have enjoyed most. This move was taking me into a new chapter of life, rebuilding a new life with the love of my life, so although it was a great deal of work, it was easier to do, when you know you are doing it is all positive, every aspect of it. So it is all done, we had our first opportunity to relax last weekend, wow did that feel good. I was blessed to have the help of friends, and to spend some time with them as we got the move done, it took three trips but I never felt like I was leaving anyone, it felt like I was just changing locations, and it feels good to feel that those friends will always remain. I am extremely grateful to those who helped and those who popped by to give and get hugs and send me off with well wishes.

April 2023/This month I will get back to my advocating work as well as some meetings, it was too much to try to manage it all, while trying to relocate and get settled. I knew that I could not push to do everything or my dementia symptoms that have been so manageable would rear up and I would pay to high a price. We learn the longer we live with our diagnosis how to manage things in our lives to try to alleviate stress and the chaos it brings to our world. Stress is so dangerous for people in general but for people with dementia learning to recognize the things that create manageable stress is vital. My brain fogs have been minimal since Wayne and I reunited, being surrounded by love, just knowing that I don’t have to fight so hard each day, because I was alone, knowing I have the support has allowed me to relax more. I am so deeply grateful, for all that I have in my life today.

May 2023.

I have just returned in the last couple of days from the Vast Conference in Montreal, of course I have a real interest in the vascular work being done. Having Small Vessel Disease and Cerebrovascular Disease, significant in my eventual diagnosis of Vascular Dementia. The reason it is easy to understand my TIA’s. I find the work they are doing fascinating and I am happy to be working with researchers to this end. I am fascinated by the brain, the more I learn about it the more it intrigues me. I have also learnt that it has so much control, really all of it, but that it is my best interest to play nice and give it what it needs and wants, it then allows me to continue to have better days. If I deviate, if I “don’t play by the rules”, I pay the price, the price is high. It sounds like a silly way to think about managing an illness, but truthfully it is easier to take all the knowledge and figure out how to make it make sense in the most simplistic way, so for me that how I have done it. Yes I can listen and have conversations with researchers and scientists, I can understand much of the language and jargon, but we are teaching them how to relate to people in lay mans language so everyone can understand, we are getting there, we are sitting at more and more tables, the science world, academia, seems willing and wanting to engage with us, we have so much to share, it is an exchange of knowledge, it will hopefully end up with some real advancements in the future. No none of it will happen in my life time, or at least I am not expecting it to, but I am working on helping them because even if it won’t help me, it will help the many more who will be facing a diagnosis of dementia in one form or another. It is for all those who I am working on behalf of. The benefits to me are that I am valued, I am contributing I have had many opportunities with all my advocacy work. I have had the opportunity to meet so many many great people, to travel, although I stick closer to home, to Canada these days. I have learnt, about disease from different sides and views, I have grown, I have the ability to be open to look at things from a different perspective.

My own illness, is sitting, not getting worse, holding for how long I don’t know, each day is precious and fragile. I am always aware that in an instant that it can all change, but I also know that, that is true for most people although most people live is if they all have lots of time. I live each day as fully as I can. I realized that I had been talking about living well with dementia, but I wasn’t really doing a good job of it. I thought I was but I had lulled myself into thinking that, but being ” married to your computer”, being at meetings 7 days a week, sometimes many meetings in a day, left little time for actually living well. Don’t get me wrong many times and many days those meetings were my saving grace, and in the beginning those meetings and meeting others was what propelled me to doing all the things I have done, it is also the thing that helped me understand that living our best life, is something different for each of us, and sometimes we need to submerge ourselves in it until we are ready to come to the surface again, and then we start to reform our life, we start to redefine what we work and when, and if we are lucky we truly to start to life fully again. My life since diagnosis has been a journey I never expected to be on, but I can say I am not sad that I am for I have gained more than my illness has been allowed to take from me. I will continue to strive to live my life fully. I am happy, I am loved, and is there anything anyone can hope for in this life.

If we are open to seeing things from a different perspective, we allow ourselves the value of learning from others. We learn that as we grow and change so can our perspectives on many topics. Being open, being willing to challenge our own believe systems, allows us to truly grow.

I have recently had the opportunity to look at how I viewed aspects of my life, my thoughts, my perspectives. What I am referring to is about living life alone. I was ( love to say that…was ) alone for many years. I believed that being on my own was good, that I wasn’t missing our lacking anything. I was fiercely independent, I was very capable. When I was diagnosed with Vascular Dementia, that independence intensified. I was so determined to be able to care for myself, learning, finding ways to help myself, all the while thinking that I was luckier than all those who had a partner, I felt that fighting so hard to stay as well as I could meant I had to stand alone, be alone. Oh how very wrong I was. That is not to say that having and maintaining that drive to fight to stay as well as possible should not still be a very big part of life for me, but I have learnt that having a partner, having someone who cares about your well being, mind, heart and soul, all of you, you can actually relax, spend more time living and enjoying life, instead of fighting so hard to stay standing each and every day.

I don’t want to take away from those who are and do live alone, I know often it is not by choice, it is by life circumstances, and I believe we should give those who are living alone our greatest respect for it is not an easy road, although many of us try to portray that it is. I realize know that with each passing day I was becoming more and more isolated, I also believed that I did not have the right to expect anyone else to have to live through my diagnosis with me. I now fully realize that the right person will love you no matter what. Just as you would them. That we are still worthy of complete love, of being cared for and cherished. We are worthy of having someone to share the journey of our dementia and even more of this life we have been given to live.

I most certainly have and know in my heart, I never want to have to live the solo life again, it taught me a lot, it showed me how capable I am and can be, it taught me what I can survive, but I do not want to just survive, I want to be fully alive. Sharing the joys, the laughter, the tears, the ups and downs, having someone to laugh at all the blunders with makes the road so much better. I believe it is better for not only my mental health, but for my overall health, I believe it taking the stress off of getting through another day, getting through another challenge, as taken stress off my brain, meaning less dementia symptoms. Oh yes, I still have symptoms, but managing them has become easier, focusing on life rather than illness has been a great blessing.

So my view point and my perspective has changed, and hats off to all those who are still walking this walk alone, I most certainly have learnt much from all of you, and I hope you from me to some degree, but if given the choice, I will choose this one, where I have someone to share life with, yes I am strong, yes I have been so independent, but I am happy to take a breath, let go and allow someone else to care for me. That was something I thought I would never be able to do, but all it took was the right person.

I am glad I have always been willing to learn from others, to see other perspectives, to be willing to change my own thought and believe systems that have allowed my life to be so rich. I am grateful, I am blessed, I have survived tragedy and trauma’s, I have learnt from them all, it has all allowed me to look for the blessings of my diagnosis, and I keep receiving more. Life will never be perfect, it will have ups and downs, but I will willingly share that.

Today I am writing about something that I have been learning about and finding it fascinating and the research is and should be of great interest to us all. I always new that there was a connection but not until recent events in my life, and a visit with my doctor last week did I fully understand the incredible impact on my overall health and my dementia.

Honestly, having vascular dementia, I thought I was doing and I mostly have been doing all the right things for my heart and brain, and putting a big focus on my brain health, which is what I should do, but I never put much thought into the emotional connection of the two. And yes we have all heard and know about the broken heart syndrome, but it is actually so much more than just that, it is about lifestyle, about happiness and joy, feeling loved and cared for, about connections. It’s about all the life trauma’s and whether we heal them or not.

For me having had huge life changes over the last few months, after years of ups and downs, being reunited with the love of my life, ( read more of this story below) something I thought would never be possible, so I feel as though life is bringing me full circle in and on so many levels. ( goes to show, keep your heart open, let the universe bring you what you need, instead of trying to control all aspects of your life, you may be surprised with what happens).

It was after this reconnection and reuniting with Wayne, that my Doctor wanted and did a bunch more testing, he was not yet aware of my reuniting with Wayne. Then last week, a day before Wayne and I were heading back to Vernon, I had sold my car, we were going to see about buying a truck, and to take care of other business, like giving notice to my vacate my place in Vernon, ( I have until the end of March to finish that move). My doctor’s office called and said he wanted to see me and do some reassessments, so they booked me in for the next day while I would be there. It was a great visit with the doctor, he wanted to know what I have been doing, what had changed, as my tests all came back better than they have been since 2005, when he took over my care. That is an astonishing turn, considering the real and difficult challenges I faced for the last few years with my health.

I said that the only thing that changed was that my heart and soul are happy, I explained the events with Wayne and I, he said, well you know there is medically something to do that. I said my brain fogs are so much less than before, my inflammation markers are so good, my heart tests, my lungs, my kidneys and my liver tests, every single test … better, I was elated. that brought me to researching more about the heart and brain connection and how it might be impacting our dementia. Perhaps if we can teach people how to embrace life after diagnosis, if we can help teach them about going out and finding the joy in life, dealing with the trauma, letting go of the pain, of the importance of looking for and finding ways to stay connected, to feel loved and cared about and of loving and caring for others, then perhaps it will be another way to help those living with dementia, live, instead of waiting to die.

“The interconnections between brain and heart are increasingly recognized. Takotsubo cardiomyopathy, also known as “broken heart syndrome”, is characterized by a cardiovascular dysfunction provoked by an emotional or stressful situation. Similar events can trigger a neurological pathology called transient global amnesia. These conditions can occur simultaneously, although their precise connection is not well understood. We aim to present the case of a patient who experienced them and to review the relevant literature.” from this published piece:

I know full well what a gift I (we) Wayne and I have been given, not many people are granted the gift to be together after so many years apart, not often are there two people who have carried a love for so many years for each other ever get to come full circle like we have. It is a gift and one that we will not take for granted. It is in that gift that I have also received the gift of so many of my health issues to be lessened, my dementia will always be here with me, my vascular disease will always be here and all that it creates, but, all manageable, symptoms lessened. I will be attending the VAST conference in May in Montreal, and I hope to talk much more about the connection of the brain and heart and how we need to put more emphasis on helping people with this. I am blessed to have a man that puts so much into understanding how my dementia effects me, helping me navigate and helping to lessen to the effects. I always wondered if being alone was better or having a partner, having lived alone for so many many years, trying to do everything I could to help myself, to stay independent and stay one step ahead of things, I can now say being reunited with my husband, being with someone, sharing life, is a much better way, with or without dementia.

So here is part of our story: a little piece for you of and about us, about the gifts of life.

The Story of Wayne and Christine

Sometimes in the midst of all we know, we are suddenly thrust head first into an event that leaves us questioning things we never thought we would.  Something bigger than us, something that defies all logic, yet it cannot be denied.  And yet it is us. So it seems that if the story needs to be written and we are accepting and open hearted then the universe will put us in the right place at the right time for the story to be written. This is one of those stories, A Love Story for our times, A Love Story that began and ended  in the 70’s, or so they each thought and then fate, the angels, the universe all conspired to bring two people back together to come full circle with a love that was locked away and weathered the years. The love could not be denied this time. This was the beginning of a love story, so beautiful, so tragic and sad, yet so beautiful. This is a love story that after so many years has seen the universe conspire against all odds to bring two hearts so filled with love back to finish writing the love story that began so many years earlier.  

Almost 50 years earlier two very young people met, he saw her bent over the sink washing her hair, when she turned her hair up in a towel, he knew at that moment that this girl, yes, this girl, was meant for him. That very night, they headed off on their first date, a movie, a horror movie. He could have taken her anywhere, she was just mesmerized by him, so thrilled to be on a date with him, she fell head over heels in love. They became inseparable, they adored each other, that’s all that mattered, that’s all they knew and understood for sure.  Soon they were living together in a tiny one room flat, in a small mining town, so happy just being together, they knew this is how they wanted to live their lives… together. We were married on August 28th 1976. Reunited in 2023, the rest of the story being written every day.

I know make my home in Abbotsford with Wayne where we will continue to enjoy life each and every day. I will continue to advocate and continue to try to help bring changes and help move things forward so all who live with dementia can live their best lives.

Please take a look of some of the articles regarding the brain and heart connection, their is many more to check out but these are a good start. I hope we never stop being willing to learn and help others and I hope we all keep our hearts open.

https://pubmed.ncbi.nlm.nih.gov/35211225/

https://www.gaia.com/article/mysteries-of-the-human-heart?utm_platcamp=performancemax-acq+rmk-intl+usa-ancientcivilizations&gclid=CjwKCAiAxvGfBhB-EiwAMPakqqWZEDKc7YgZUr2OhG59VTcFaavQD_l2Bat5uSfzueb43DwPfqF_ExoCkeYQAvD_BwE

https://www.gaia.com/article/mysteries-of-the-human-heart?utm_platcamp=performancemax-acq+rmk-intl+usa-ancientcivilizations&gclid=CjwKCAiAxvGfBhB-EiwAMPakqqWZEDKc7YgZUr2OhG59VTcFaavQD_l2Bat5uSfzueb43DwPfqF_ExoCkeYQAvD_BwE

https://pubmed.ncbi.nlm.nih.gov/35211225/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7075501/

• Advocates
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• Christine Thelker © 2020
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• Advocates
• Advocating
• Christine Thelker © 2020
• Dementia
• Event
• For This I Am Grateful
• Good Grief
• Life
• Living well with Dementia
• Silver Linings
• Stress
• Uncategorized