Category: Advocating

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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

Weighing in

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.

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Advocating Dementia For This I Am Grateful Life Living well with Dementia Silver Linings

Welcome to 2025

Another year is well under way and for many it’s a time to start fresh and new for others they worry a out the coming times. For me it’s a time when my advocacy work ramps up. On Monday I head to Toronto for the week, I will be attending the I Nueron Conference. This is a six year commitment, I am thrilled that I have been part of it since it’s beginning. First time ever having science from different perspectives working collectively, sharing knowledge, so that we can move the needle I a more productive way. Once I am home, I have a couple days to recoup, then off to Penticton where I will be Keynote Speaker at an event at the Lakeside Resort. Along with taking on a new role as Vice President of our Strata Council, we are a self managed building, it’s a lot of work, but it also means you get to look after your investment. In between, being out doors and in Nature as much as possible.

I battle every day, various symptoms, but I refuse to let them get the better of me. Some days ypu want to let it go and just give up and in to it, but the bigger part of me still feels as I did when I was diagnosed and that is ” I’m not done yet”.  To much in life that I still want to do, to feel and co tribute too. The day I decide just sitting or that I’m too old or that my illness has progressed to far is the day it will be over. I am not an ” good enough ” person, it’s all the way and that comes to living and dying too, so staying engaged, active, learning, working within the parameters of my illness, but not being afraid to push those lines, erase them if I can, find go around, whatever I can do to keep living, just existing is not anything I am interested in. If my illness causes a roadblock today, I change gears, do something I can manage and try the other again tomorrow. It can be frustrating but life isn’t easy and finding work around helps get us through the hard days.

So as we charge off into 2025, I hope the year is kind, I hope we all find our way to put kindness first.

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Advocates Advocating Dementia Event For This I Am Grateful Life Living well with Dementia Silver Linings

Happy Thanksgiving

Its Thanksgiving weekend in Canada, so I thought it’s time for another blog. As always raw, honest and real is what I always promised and always opinions are always my own and not directed at anyone , or anything unless I clearly state that is. Otherwise it’s all me.

So I am sitting ar the top of a mountain this morning, with my husband,enjoying the sound of birds. Morning coffee in the cool crisp fall morning. I am so grateful to be here, yes to be sitting here with my husband, but also to be literally sitting here. I am seeing another Thanksgiving and boy to I have a lot to be thankful for. But in all honesty I am also angry at my body at the moment, for the first time in 3 years, and we all know what happened then, if not a quick refresher, and knowing it was and continues to be controversial, it is andxwas my realty, I was not doing well, much time in the hospitals, those closest to me fearful I wasn’t going to make it, all aspects of my system where struggling, I got a large dose of Moderna vaccine and it was it did a reset of my system. Fast forward to now, not one hospital stay in 3 years, I have been stable, but in the last week, my body again all systems are struggling, I have not felt this week or exhausted, mind and body for a good long time.

I am hoping that because I pushed hard this past 10 months, that my body is signaling me to spend some time refocusing on my well being. Some days it is easy to push aside that I have an illness that is quietly progressing, even when I look and feel like I am doing fine.

I had a bad fall 3 weeks ago, that started it, since then really and especially in this last week doing more resting than anything. And even though I get angry with myself or angry at my body/ 🧠, I know how much I have to be grateful fir and that this may be that little step down and that is expected and then I will bounce along again for a good long spell, heck if I’m lucky I can sweep through another three good years. Every day even if it’s a slower version is a good day. I am deeply grateful for all my husband does to support through all, and as I powered through to support him through his injury and surgery the last ten months, he’s almost ready to resume full activities, and he definitely understands that now it is his time to do some of the powering through, within his limitations of course. We see his specialist next week and hope that will set in motion his final piece of rehabilitation. I am proud of how he has managed it all, and it gives him a little understanding of how I feel when I am frustrated within myself.

Thanksgiving will be quiet this year and we are happy with that, perfect for us this year.

My advocacy work of course kicks up this time of year so am busy with that. Below you will see my next stop, and in the new year I will be heading to Toronto, other things will start booking soon. It is frustrating that so many have worked so hard and yet the movement for things to be improved for those living with dementia are slow. Although I do see good things happening within some communities, and we ate involved with the faculties of nursing and various other educational elements which shows a great willingness to learn and to change the scope of teaching and practice, so we are not without hope and however jaded we sometimes become with some of the organizations and their unwillingness to help move the bar, ( understandable, where keeping elements of fear and stigma keep money rolling in.) Howe er the bar is moving things are changing so hope prevails and I will never quit trying as long as I am able to make a difference. I didn’t like the term ( dementia friendly communities) , it can create its own stigma, but if we make communities dementia friendly we are also making them age friendly and if they are age friendly they are then good for families as well so the whole community. Everybody wins, and after taking part and speaking in several smaller communities I have seen the amazing things that can result from people coming together. So Dementia Friendly means we all win so let’s embrace it and if you can get involved in your community.

I hope wherever you you are remembering that you matter, that your voice matters. I hope you look for the joy in each and everyday. Get out enjoy the season and the wonders of nature that surround us.

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Advocates Advocating Christine Thelker © 2020 Dementia Event For This I Am Grateful Life Silver Linings

Missing Pheobe

This morning I woke missing my little Pheobe terribly. I think about her every day, but today the missing was so much more, I was thinking that I missed how well she new me, better I think than any other being ever has, animal or human. She instinctively was tuned in to me, in a way that cannot be duplicated or replaced, and at times I just miss that, I just miss her and what she gave and added to my life. No there is nothing wrong in my life, in fact it’s likely in a much better place than it’s ever been, my life is full, I am blessed in so many many ways, my health has been remarkably stable for quite some time, and yet my heart felt so heavy this morning missing my little dog. Funny how sometimes we don’t know the what or why of something, it just is. I am so grateful for the many many years of unconditional love she provided me with. I believe she is with me always and today I will enjoy the many memories of so many happy trips and adventures we had together ❤️.

on other notes, my advocacy work continues, although I now put my personal life first and remembering to live and find joy every day. I am grateful for all that I am able to do and enjoy.

I hope you all are taking time this summer to find some joy, sit in nature, breathe it in, to exhale, to listen to the birds, the rustling leaves in the breeze, sit with your feet in a cool stream. The seasons come and go so fast as does life itself, so pause take it all in, it’s truly remarkable.

Thankyou all for following along with me, for so long, my writings are farther apart now, but that’s because I am busy at life and life is busy, so be well, live your best life. I know I am.

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Advocating

Vast Conference that’s a wrap

I just spent a week traveling to Calgary where I sat as a panelist and did some judging of emerging researchers work. From there the conference to on to Banff for the final days of the conference. It was so uplifting to be learning and working along so many talented people. To be able to share from the perspective of a person with lived experience. To be engaged, to have them embrace this newer approach to researcher was incredible.

I was so fortunate to be able to have my husband with me while he recovers from his shoulder surgery. That support made what I do a little easier, and wow what a learning curve for him. He now has a deep understanding of what I do and why it’s so important. We also needed this break after s number of high stress mo ths, with his injury, then surgery, then a big move. We were so well attended to we wanted for not, I am hopeful and excited for the times a head, there is some incredible work being done in the dementia realm, and this conference based on the Vascular components were of particular interest to me. To have the important conversations with the Drs and Nuerologists, ever so important and to see them fully engaged with us to have a greater understanding of the day to day challenges faced by so many.

I arrived home yesterday sick and in bed still, these events are taxing on my system, fortunately I have Wayne to help me so it is much less a struggle in the past.

I hope that if ypu are a person living with dementia or the loved one of some one living with dementia you will consider getting involved with research, it is an amazing space, and they need more people to work a long side them.

Research is not something to fear, it finds the answers and you can help firect the how’s and why’s.

I am tiring now so I will close with a few pictures from the event.

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Advocating Christine Thelker © 2020 Dementia Event For This I Am Grateful Life Living well with Dementia Silver Linings Stress

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.

My beautiful gift from my most awesome friend Janet
Tracey, Tia, Wayne and I
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Advocating

A Year in Review and A Look Ahead

Surprised I get to to enter another crack at making it another trip around the sun. Somedays it’s hard to believe, especially during periods when I struggle, and although I don’t have to do it alone anymore, very often it still feels like a battle that you are on your for, not because of anything else anyone is or isn’t doing but because it’s the sheer nature of the disease it’s self. In fact often writing is the one place that I can or actually my brain still can get things out. It is so often frustrating trying to get others to understand what your brain is doing, everything looks good on the outside but the from inside here it’s very different. So much time is spent trying to put the brave face forward, but let me tell you the fear that grips so much of day to day life, it likely would be too much for many. Some days you feel like giving in to it, other days you want to yell it’s ok, I’ve got this. It’s difficult for those who care for us, sometimes one wonders if it’s fair to even ask, sometimes we try to hide our fears, it’s a way to try to protect ourselves and it’s also a way to try to protect them. What we most want is to have a soft place to be with it all, even if we can’t explain it, and we want to have the joy and treasure everyday.
For me I am trying to navigate through the whole process of a complete and beautiful change of life, Marrying the love of my life for the 2nd time, is more than I ever felt possible. Trying to be the best partner I can be despite all the challenges of my dementia. I know at times I am not great at it, I am fortunate that his loves runs so deep that he’s stands beside me through the challenges. I hope and Pray that it won’t become too much for him. So this last year a move at the beginning of the year, remarriage before the end and starting 2024 looking forward to create a lot of happy memories and not taking a day for granted. Continuing to advocate here in Canada., it takes a lot now to do it, it uses so much brain power it exhausts me for a long (sometimes weeks) after), but it also inspires me to keep fighting and going. So 2024 please be gentle on me, the last number of years have taken a toll.
I want to talk about ambiguous loss, lots of talk about it, I want to talk about how it feels from this side of the diagnosis. It’s difficult to be very aware of all the losses from careers to physical, mental and emotional changes. Every time I have to navigate another challenge, from facing things like my vocal abilities disappearing and at sometime it becoming a permanent non verbal status, too extreme lightening bolts roaring through my brain, to night terrors that are beyond anything imaginable, Balance, coordination, vision issues, every one of them make you aware of the losses it has created, it also slams back into the reality that we have a clock that’s running at a faster pace. I am acutely aware that the 3 to 8 year time I was given to be on planet has expired by two years, being told a time frame, no matter if you want to our not you can’t erase it, it haunts you at times. So yes, Dementia is a lot, from the complications with stroke, heart issues, major organs being effected, it’s a load too many have to carry. I say I live well with my Dementia, and I do my very best to do that, but it is not without a draining amount of work, it’s just most often, everyday, although some easier than others, what the world sees is a woman trying to be brave and courageous.m

I am going to share some highlights of 2023, the hardest of 2023, was losing my little Pheobe, I will miss her always. the biggest and best of course, reconnecting with my husband, and gaining my lovely family, hopes and wishes and dreams do come true. Enjoying, fishing, camping ,rock hounding, and prospecting for petrified wood, all incredible and beautiful moments. Spending time with family and friends, so many wonderful moments. Being involved in my advocacy, and all the incredible friendships that it has brought. Having the opportunity to meet so many amazing people, 2023 brought more blessings than I ever thought possible,

So as I move through this new year, the first thing is my health, dementia creates challenges that are so complex and I have things going on right now that scare me, worry me, funny that never used to happen, but because my life is filled with so much love and joy, it’s terrifying to know that my illness can take it away, and I want years of this, so the fear is real, but I am trying to navigate it, and not let it overtake me. Next week more scans, more Drs appointments, blessed to have the doctor I do.
So I will be writing more blogs along the way, but my focus of the moment is to make the most of everyday I am given. Please stay connected, I am always here.

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Advocates Advocating Christine Thelker © 2020 Dementia Event For This I Am Grateful Life Silver Linings

Making a Difference

I want you to meet my brother in law Jeff Lakey:

I want you to meet him because Jeff is one of those people who, when you meet him you will know you have met someone truly special. Someone whose soul will touch yours, who’s energy will ripple through you, you will feel it, I know I did.

Jeff has an incredible story. He has through is journey battling addictions put so much of it into music.

His music is raw, it is real. It evokes emotions, it can’t not. It makes us feel and no matter what our life journey is allowing ourselves to feel the emotions within us is how and where we can start to heal. This is what the world needs more than ever, to have the sbity to feel and to heal.

Most of us have been taught to suppress our emotions. ” to get on with it” ” get over it”, when what we need to teach is to feel it, the hurt, the pain, the joy. We all have things in life sometimes we manage through them fairly well, sometimes they break us. Whether it be drugs and alcohol, illness, family, work, life can be and is hard, we make it harder by trying to toughen up to get through things.

I do believe we need a certain amount of toughness and stubbornness to help propel us forward, bit dometimes what we really need is to be allowed to feel. To have what we feel accepted and acknowledged.

Music helps do many people and Jeff’s music is the music that acknowledges, draws you in allows you to feel, to come away with a different outlook, with a little more compassion, with our own vulnerability coming to the surface.

I know as a person living with dementia, Jeff’s music says so well so much of what a person living with dementia feels, and yet it was not written about dementia, but it shows how the music can transcend it ways we cannot.

Jeff’s sings from his heart, music that can heal, music that can inspire. Please take a listen, read Jeff’s Story, share his music, let’s together through music help heal the world. Thank you, Jeff, for sharing your talent and sharing your story.

Here is a link to one of Jeff’s incredibly beautiful songs as well as a little of Jeff’s Story. There will be more I will share over the next while.

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INSPIRATION, PEOPLE

JEFF LAKEY, HEALING WITH MUSIC

 ART MARTENS 3 COMMENTS

Jeff Lakey

Sitting under a lush canopy of green leaves in a Cawston orchard last week, I asked musician Jeff Lakey, “What has surprised you?” He replied, “I’m surprised I’m still alive and healthy.” After hearing his story, Linda and I were surprised too.

The setting was a neighbourhood gathering of orchardists, farmers, fruit pickers, and anyone living in the area. A long table was laden with tempting, sumptuous dishes. I lost count of the many people seated at tables scattered among the trees.

Jeff was there as one of the entertainers who would perform on the spacious stage. He had asked us to meet him here for the conversation we had arranged when he was in Hedley with his band, the Black Birds. As we were eating, a succession of individuals came around to greet him. Some shook hands, some hugged. It was evident they were delighted to see him. I thought there was a sense of poignant nostalgia in some of the greetings. He was one of them, and yet different.

We learned that music has been a constant thread in most of Jeff’s 53 years and has almost certainly buoyed him and kept him alive. “I play drums, guitar, strings (key board), piano, bass guitar and I do vocals.” He writes much of the music he performs and has produced 2 albums. When the first musicians appeared on stage, Jeff was asked for help with the elaborate sound system.

Now a warehouse supervisor in Keremeos, he earlier worked 10 years at a center for children with mental disorders. “I introduced music therapy,” he said. “I brought in tambourines and shakers and we made music together.” He still cherishes the memory of hearing children say, “I feel like I’m actually worth something.”

He also did music therapy at Portage. “One day I heard a girl singing in her room. She had a beautiful voice. I urged her to come out and sing for everyone. She told me she didn’t sing for people. I offered to accompany her on my guitar and she agreed. She went on to sing ‘True Colours’ at a concert in Vancouver. About 30 musicians came out of my program at Portage. I always recorded them and gave them a copy.”

Personable and energetic, Jeff has loyal friends and has enjoyed considerable success as a musician. But, it almost didn’t happen. “My dad left when I was 3,” he said. “I’ve totally lost track of him. Fortunately Mom married again. This man became my father. He was my friend and mentor.”

For reasons Jeff doesn’t fully comprehend, his life began to unravel in his early teens. “I was carrying a lot of resentment,” he recalled. “I got into drugs, anything I could get my hands on.” In 1999 his parents intervened. They brought him home to their farm.

“I continued with the drugs though and hid this for 2 years. Later people in Cawston told me they knew. They accepted me anyway. During that time I teamed up with a friend and started the Black Birds band. Then my father died at age 56. He was my rock. With him gone, that was it. I couldn’t do anything. I crashed.”

A friend came looking for him and found him in a drug house. “I was lying on the floor. He took me away from there.”

In 2001, at age 38, he understood his life style was leading downward to certain failure and destruction. This wasn’t what he wanted. Within him was a desire to do something of value with his musical talent. He entered treatment at the Cross Roads Centre in Kelowna. This cleared his thinking. It was after this that he produced the 2 albums, worked with mentally disadvantaged children and then persons with addictions. He has written and performed numerous songs. When his mother died 3 weeks prior to our conversation, he wrote a song for her. It says in part, “Images of you in my heart, keep me satisfied.”

Jeff’s life experiences enable him to write realistically about addiction and homelessness. “My message,” he said, “is that sometimes when you are knocking on a door, asking for help, people don’t understand. Keep knocking and in time someone will answer.”

Recently Jeff Lakey auditioned successfully with an all-star band in Vancouver. He’ll have a bigger stage for his message. The people in that Cawston orchard will be cheering him on.

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3 THOUGHTS ON “JEFF LAKEY, HEALING WITH MUSIC”

  1. Pingback: Jeff Lakey, Healing With Music – Hedley BC
  2. DaleRock on. — foreverREPLY
  3. John maynardI’ve known you for a lifetime, through many ups and downs and even at your lowest you have always had a heart that expands to whatever environment you found yourself in…you are an inspiration to all that know you and your message will live on forever my friendREPLY

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“First you jump off the cliff, then you develop wings on the way down.”
Ray Bradley

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

Brain Fatigue

I often try to explain to people how I go along on any given day, having no trouble with my dementia symptoms. Suddenly, though without warning my brain becomes fatigued. The fatigue overtakes that I can be full of energy one moment and the next be exhausted and needing to rest or sleep. My husband and I talked about this just this morning as the fatigue hit yesterday afternoon with a thud. I hate when these things happen, but I have learned they are part and parcel with my dementia.

Wayne watches me closely, I don’t have to tell him, he keeps an eye on me without ever being intrusive or without making me feel like I am being monitored. I feel so fortunate to have the kind of support and help if I need it. I appreciate that he doesn’t try to stop me from doing things, he knows I won’t do anything ( at least at this stage), that would be unsafe, or that I didn’t feel it was manageable from simple things like cooking to driving. It is also because of his willingness to help me that I can be doing so much of what I always loved, like cooking. This past few days, we spent a full day in the kitchen, we filled the freezer with healthy home cooked neaks, soup, chili, roast beef dinners, chicken dinners and muffins. Days that I don’t feel up to cooking we are covered, and having a husband that is willing to navigate the kitchen with me allows me to continue doing things. So yes, it’s true love makes all the difference.

Fall/ winter is also more challenging for me and my brain, the low pressure systems create headaches, brain fog, 🧠, so having the support to get through the winter months, means I will likely do better this winter than in winters past.

So it’s important that people understand that yes even weather can effect a person’s brain, and for those with dementia we are and most are aware of how it effects them even if they may not be able to explain it.

Our brain is our operating systems and when something causes it to not operate it the way we want, it can be frustrating for the person effected as well as those who care about them. I am just hoping to get through the winter without it causing too much chaos for me, and I am grateful for the love of my husband, who makes it all easier.

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Advocates Advocating Christine Thelker © 2020 Dementia Event For This I Am Grateful Life Living well with Dementia Silver Linings

November 2023

Wayne and I enjoying our day of Exploration

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.