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

Saturday Morning Pondering

Life changed so much when I was diagnosed with Dementia, but I allowed myself and pushed myself to find new purpose, to find hope, to forge a new life, a different life, but it has become a good life. So very different for what was my life to what is my life, but I have settled into it, finding many reasons to be happy, to enjoy the simplest things in life.

Bring in Covid 19, everything I had set in place had to change again, lock downs meant further isolations, finding ways to manage and cope through those ( and continuing lockdowns, over a year and still the lockdowns continue). Finding ways to stay connected, engaged, hopeful and joyful, during a pandemic, brings the fight that is faced by those with dementia just in terms of living with their illness to a whole new level.

A compromised system, we all know and hear about how those living with Dementia are likely to have worse outcomes than others if they get covid 19, so keeping my house stocked so I can manage with the least amount of trips needed of going out in public for necessities. Yet still going for walks, going for solo drives, ( ok not totally solo, my little dog Pheobe by my side), she loves drives. She always walked a lot with me, but as she is approaching 17 in May, remarkable, she now mostly sleeps, especially this last little bit, in fact its 9 am she is still in bed. I watch and hover over her, she has been my world for so many years. After my husband died, I was a drift, losing him, I lost my whole family unit as it was, so when Pheobe came into my life, she filled me with love again, so know as I watch her slowly decline, sometimes I think she is trying to keep going for me.

my beautiful Pheobe

I know she sees and feels my decline and I see and feel hers, animals are so smart, so in tune and understand so much more than we often give them credit for. She has been such a blessing for so many years and through this Covid 19 Pandemic she for sure has been my saving grace.

Time is moving so fast or maybe it’s not, maybe it’s just that I am losing my ability to mange it. I feel like I have just lost a whole ten days, it was just March ending and somehow here we are at the 10th of April. Today I was looking at my new week of medications dropped of by the pharmacy yesterday, and I kept thinking this doesn’t seem right, he was just here delivering how can he be here again, another week gone, just gone, it made me go check to see in fact if I have been remembering to take the said medications, truthfully only missed a couple doses, so overall not bad.

The fact that time is disappearing or if it’s not then that means that I am disappearing more and more, not even sure which it is at this point. I think about all the things I still want to see completed my follow up book, completing my work with DAI, seeing changes take hold through advocating. So much I want to still accomplish, regardless of my dementia and regardless of Covid 19, but with the disappearing time, not sure if it’s possible. I can no longer manage without the help of my volunteer Angie, who without her help I would not be able to continue to do the advocating and things that bring so much joy and purpose to my otherwise stalemated life. I am so grateful to have her, and I encourage all who are living with dementia, yes do all you can for yourself but be brave enough to admit and get the help with the things you need help with, so that you can continue to live your best life.

But there is also the personal things, the people I would like to see, the trips I haven’t been able to take, the documentary I wanted to do, the backroads and small towns I have yet to visit, getting back to the ocean.

Somehow as Dementia robs us of so much, being hit with the added piece of Covid 19, seems to make it all more urgent, yet being stuck unable to get those things done, wondering if I will have the ability to hold steady until I can, or will I end up with a life incomplete?

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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.

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

The Importance of Connection

Photo by Andrea Piacquadio on Pexels.com

This post is a draft from 2021, This post is for you Janet Douglas.

This morning much too my delight, I received a video call from a friend who also lives with dementia, she is in Scotland to visit her mother. Now a little history, her and I have never met in person, yet we have a connection, a friendship that is the type of friendship that warrants a video call even though she’s on the other side of the world on holidays at the moment.
During our conversation today she told me one of the reasons she had to call was because she wanted to thank me, for reaching out and answering her when she was first diagnosed and looking for support. It was through that that she became a member of DAI, it was through that that the friendship blossomed. DAI is often the gateway to connecting people. It affords us the opportunity to meet others who share our journey. It gives us that safe place to share to laugh to cry,. To rediscover who we are after being devastated by receiving a diagnosis. The people we meet, the webinars the cafes, the support groups, they all help us learn to live, to really live, despite our illness. You can attend many groups, work with many organizations, and they all offer certain things, we can gain something from many of them. I have watched as many who came to DAI struggling through the devastation of being diagnosed, feeling lost, alone, their confidence and self worth bottomed out. I have watched those same people flourish and bloom, to go on to do many great things, not only for and as part of DAI, but also to start, or take active roles in other organizations, they have found themselves, reinvented themselves, regained the confidence they had lost and they are doing an incredible things that end up helping others.
And that was what the video call this morning was about, a call to say thank you for reaching out, because while in Scotland it offered her the opportunity to be that for someone else, and so felt compelled to say thank you. I was so moved by that call, we discussed how important those connections we make are, how important and intricate they are to our journey to find our wellness, to our continued well being. We form connections, we find friendships, even with people we haven’t met.
We so often talk about all the things we can do to help us in our bid to live our best lives with dementia, we talk about, rehabilitation, nutrition, exercise, sleep, being mindful. But I believe the often overlooked piece is connections, connections with others.
I am grateful for the friendships and connections DAI has brought to my life, I continue to reach out to others, and have been so grateful to hear on several occasions in the last few weeks from some thanking me and I always hope that they do can offer that someday to someone. Together the impact we have on each other, for each other, priceless. She thanked me for the gift I had bestowed on her which allowed her to be that person for someone else, the connections are truly a gift.
So for Dementia Awareness Month, I challenge you all to think about the friendships and friendships you’ve made, and reach out and offer it up to others, encourage them to join DAI, so they to can go on and be instrumental in all the good that’s being done out there, through DAI and the many grassroots and local groups, and many organizations that are striving to improve the lives of those living with Dementia.
Christine Thelker

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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

Sunday Thoughts

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.

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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

Just some Personal Thoughts

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.

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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

Rambling Thoughts

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.

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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

Hello! Yes It’s me!

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.