Category: Advocates

We are I think, at least many of us, feeling vulnerable, emotional, sad, scared, unsure of anything. We are still coming out of a pandemic, which has turned us inside out, never knowing when or if the next wave was coming, being isolated, trying to be safe, to keep others safe. People have had a hard time emotionally and mentally trying to manage it. just as we were feeling like we were slowly getting our feet under us, and then last night Russia attacked the Ukraine we are outraged, sad, scared, we know what this could mean, this is the closest to a third world war starting that we have ever seen. It is a normal response to living with more uncertainty.

Finding ways to deal with the stress that often we don’t think are even impacting us. We are more apt to have less patience and tolerance of others. We may be more tired, feeling teary and emotional or sad.

These are all normal reactions to unusual events, but it doesn’t give us free rain to act in ways that cause more stress or anxiety for others. We must all try to offer extra space, extra kindness and extend grace to one another. We all have to learn how to destress in times like these, go for a walk, practice deep breathing, gardening, anything that allows your body and brain to stand down.

I many think that the war doesn’t really effect them because its on the other side of the world, but its implications and effects can and do effect many right here at home, many still have family and friends there, lives are impacted, sometimes directly and sometimes indirectly, war effects us all. A point in fact is my own family, here you will see documents of which I have many, my family, for so many all these documents were destroyed during the second world war, I am fortunate to have so many of ours, but did the war impact me, not directly but indirectly yes, the effects of living in Germany during the war left deep scars on many of my family members, my mother included, I never had the chance to meet or know my grandfather, two of my Uncles, one of which had a huge impact on my life were prisoners of war, released in 1945 and 1947, they forged new lives here in Canada, as did my mother and grandmother.

I’m showing all this in hopes that we can all remember, we will cross paths with many as we go about our days, who, you many not even now how this crisis is impacting them, remember they may be having an emotional response that they would not normally have because of abnormal things impacting them.

We all need to extend kindness, and I know people are sick of hearing that, but in all honesty, the last couple years, it’s the kindness that has enabled me to get through this pandemic and it will be kindness that helps me navigate whats coming. So please lets extend that extra bit of understanding, lets not take it personal if someone is reacting in ways we think they shouldn’t be, kindness and understanding may be the one thing that helps them.

Give people permission to talk about it, over understanding, people aren’t always looking for answers or to be told they are right or wrong, they just need someone to understand how they feel.

My heart is heavy.

The protests here in Canada, “The Freedom Rally”, was, in my opinion. not about fighting for our Freedom. We never had our freedoms taken away. We were not dragged from our homes and forced to take a vaccine, we were asked and given the choice. We have a public health crisis, we have been asked to protect ourselves, our families and our communities. We had the right to refuse, we were not arrested if we didn’t. We had safety measures put into place to wear masks. Again we didn’t have to but for the greater good we were asked to. Other health measures were put into place, again for the greater good. If we didn’t want to comply we didn’t have to. We had the freedom to choose, but we were obligated to live with the choices we made.  It meant those who CHOSE to not comply could not access certain businesses, stores, restaurants or countries to protect the many from the few. We were asked to live with the consequences of our decisions. Freedom does not mean we can do anything we want any time we want. This infringes on other people’s freedom. We live in a civilized country where we have laws in place that allows us ALL to have a maximum of freedom for everyone. 

Any protest that contains firearms and ammunition is not a peaceful protest. A peaceful protest does not block highways and prevent people from going about their business. It does not set up semi trucks, travel trailers, hot tubs and businesses in the middle of the street. If rival invasions happened in the neighbourhoods of the Freedom Rally occupiers and blocked them from their homes and streets, would they want something done? Protests should not break laws. They should park in legal places and march to a legal venue and sit or stand in a legal area. Illegally shutting down highways and borders is taking away the rights and freedoms of many others. You can’t fight for something and take it away at the same time and expect the larger part of the population to support you. Putting children front and centre was irresponsible. The people in this country have made many sacrifices over the last two years; we all have had to make choices and live according to the choices we make. Each province and territory has managed the pandemic in the way it deemed best for the majority of its people. A rally that began as a fight for a freedom that was never lost, seems useless.  The rally instead cost the economy millions, not to mention the millions it will cost to clean up the mess they left behind.   You weren’t fighting for my freedom,  you were fighting to avoid the consequences of choices you freely made. Sorry, no support from this girl. 

I don’t care if you believe in vaccines or not, I don’t care if you get vaccinated or not, you live with the choices you make and don’t cry foul when it inconveniences you. Your actions show a sense of entitlement, arrogance, and lack of compassion for your fellow citizens. The irony of waving the flag.

The final piece of this for me is your idea of overthrowing the government. The people of this country voted for our leaders, if you don’t like it, be patient and get out and vote for someone else at the next election. Better yet, why don’t you run for public office, get involved on local or provincial levels where you can affect real policy change. And if you want to protest, do it in a way that does not fly in the very face of what you say you are protesting. I hope we can all get back to loving one another, being kind and compassionate.

So many thoughts rattling around all night long, so today I am writing a mish – mash of it. We are already heading into the last week of another month, lighting speed, I’m still trying to figure out what the year will look like for me and if I don’t soon, it will be gone before I’ve had the chance, and thats ok, I don’t mind just drifting and letting things unfold, sometimes giving things room to come into our life or leave brings about some very special life moments, so I’m just going to drift for awhile and see what comes.

We have seen a very beautiful February weather wise, normally February is the month I struggle the most with, but this year it has been extremely kind, lots of sunshine, even today it says its going to snow, but instead mother nature is providing beautiful sunshine. I have just returned from a lovely walk. Had a lovely chat with a gentleman who was so happy that the month has been so kind and allowed him lots of days to be out enjoying his short walks, he reminded me that we need to be grateful for what we can do, whatever our abilities are today. It is the thing I have enjoyed most since my new found ability to be out of bed, and not be so fatigued is the conversations found along the way. My daily walks, offering me the opportunity to meet folks I otherwise wouldn’t, the ability to enjoy the interaction, seeing peoples smiles.

Sometimes it’s so easy to get wrapped up in whats going on in and around us that we forget to remember the very good and basics that we have, that many others do not. This puts undo stress on us, creates hardships that shouldn’t be there. So today I made the decision to take a break from Facebook, yes my blog will still go out on my facebook page, and people are of course allowed to share it if they wish, but other that that I am taking a break from my personal page and Facebook in general.

There is much unrest within our own country, and globally, and I have been watching friendships disintegrate, its all very sad to me and I don’t want to be part of it. People seem to have trouble respecting someones opinion if it is not in line with their’s, and the inability to do that is causing great damage, and the best way to not get caught up in it is to walk away from it. Having discussions about differing opinions are actually a good thing as long as it is respectful and not trying to dis-qualify someones opinion if it doesn’t fit with yours. There seems to be a lot of anger and I think some of it stems from people being unable to manage their mental health in difficult times. Sometimes you have to draw a line, so I have drawn that line for the next while.

I am hopeful spring will allow the warmth of the air and sun on peoples faces to give everyone a chance to just breathe, to let the anger and hatred go. In the meantime I will look after my well being, I will enjoy all that I have to be grateful for.

We often talk about the vital role that others living with dementia play in our lives, they understand us on a level that only those who live it can. This is not unlike any other illness, people who have walked through the cancer journey, or the MS. journey are other examples can and are great supports to each other. But we also talked the other day about the importance of the importance of our non dementia friends and how vital they are to us. I do believe it’s true and that having a mixed group helps keep us balanced and not swallowed up by one or the other. Living with Dementia is hard work, it can be draining, having our non dementia friends lets us put our focus on something else for a time. Both are uplifting and I am grateful for all that I have in those friendships and connections, sometimes not easy for them to be in my world, sometimes not easy for me to be in theirs but we are all willing and my life is rich because of them.

I’m spending a lot of time listening to music and doing and trying different types of crafts, today I’m going to be trying water doodling, which was a gift from a dear friend, and doodling seems like a relaxing thing to do. So stay tuned for pictures of the trial of water doodling. My second book is nearing completion, I am not rushing it, I will know when it’s complete.

Unrest everywhere you look and yet here I am happy and content thankful for each day I am given. I like how simple my life has become since my dementia, the simplicity feels good, there was a time that I felt somehow cheated out of so much, because my career ended, financially I took a huge hit, so much is very hard at times, depending on how my body is behaving, but I have learnt to go with those things and times, and just look for the simplest joys and I find I am very much at peace with it all. In some ways it has given me many gifts that I would not otherwise have and inner peace is one of the biggest. I don’t have to fight and strive for more, I can just enjoy the day, having the ability to just laugh and be silly something I am truly grateful for that right now. Whether something gets done today or not no longer matters, as long as I am doing something that makes me happy.

Soon Spring will be here and I will be able to get my happy hippee shorts out, maybe I will create another pair or add more colour to the ones I have already created, they make me happy. I hope you can all find the things and do the things that make you happy. Happiness is there for us all despite all, we just have to reach for it. Life is hard it picks us up and slams us down, it gives and it takes, but we all have to decide whether we let it swallow us up or find inner happiness and peace.

Its been a busy week by all accounts, considering two months ago I was barely able to be out of bed, but the business was not at any kind of pace I would have done even just a couple years ago. Physically 6 1/2 weeks, since my Moderna injection, how my immune system operates within my body better than has helped me feel better than anything I can remember , and I am still holding strong. To be without pain, to be without all the inflammation allows me to do much that has been on hold or cancelled for a long time now.

It has also given me the ability to be more aware of the things that I am and how much I am being effected cognitively. My moments that I call squirrel moments are more prominent., staying oriented to day and time is near impossible, without all the reminders i have coming in at a steadily all day everyday, I would never get anywhere on a day or time I am meant to, none of those things are really important, because the tools are there to navigate them. It can and does cause me quite a bit of reasons to laugh at myself. Starting something, getting distracted by something else, changing gears from this to that and back again. Again its just things that I hadn’t really noticed or taken stock of for a while in part, because I was just in survival mode, from all the physical illness, so now I am taking stock and some days I spend a lot of time squirrelling. It’s very evident that not having brain fog for the last six weeks has also contributed to my ability to notice these things. So thats the update on how that piece is going.

Can’t believe that we’ve arrived at another Saturday, time really does seem to be moving faster than I am. Yesterday saw my second time dipping my toes out into the world, I went for my first official hair cut in over two years, Ive been chopping and hacking away at my own since the start of the pandemic. while the hairdresser, new to me, was deciding how and what would be best to do, she asked how I managed to cut the back, I cringed thinking oh no, I can only imagine what shes thinking looking at it. So I showed her, she said well she could never imagine doing it herself but that I had actually done a pretty good job. when she got to the top and sides,I said I’m sorry that you have to deal with this mess, she said well actually I was just thinking that you did a pretty good job texturing. Oh my I burst into laughter and said oh thats great I had no idea I had textured it, i was just doing what i deemed a cut and hack. So my hair is all trimmed up so that it can eventually be a style she has in mind.

The tiptoeing out into the world is something I think many of us are doing cautiously, and we should all do it in ways that are comfortable for ourselves, and we should not judge others as our levels of comfort are all different. There are some things I am still not comfortable with but at least I am stepping out bit by bit and finding my comfort levels.

So now that Ive squirrelled another morning away, time to get up and dance. Enjoy your weekend, find the joy, despite the obstacles, enjoy where you are and who you are in this moment, for this moment truly is all we know we have.

Yesterday was my first in person presentation in over two years. Everything has been on line, and the on line component has worked, but it was always somehow felt like it lost impact, fell short, fell flat, not really sure how to explain it. There has been many excellent webinars, zoom meetings can be very productive, support groups via zoom can and do offer so much, so I am not wanting to say that on line things aren’t or cant have a positive impact, they most certainly do. Somehow conferences on line seemed like the impacts of those presenting was lost. There was no way to interact or connect with the presenters, no ability to have a discussion, the face to face connections., watching and seeing body language.

At the same time we have to be grateful that we live in a time that technology allowed us to do so much on line, to stay connected, but I think for many of us we are just really feeling like we want that face to face connection.

So yesterday, my first in person presentation, of course limited numbers, vaccine passports and masks, no one minded, no one cared, those pieces meant we could all feel good about interacting. I had said that I was hoping to change it up, instead of just presenting and speaking to make it more interactive, engaging. I also know that sometimes people sit back at don’t want to be the first to ask a question, so during my first few minutes, I posed a couple questions to them. It was a terrific way to get people engaged, and engage they did, my talking notes covered nine pages to fill the 30 minutes, the 30 minutes ended up almost a full hour.

My nine pages of notes, never got past the second page, although I believe by the end we covered more than just my notes, and most importantly, people got to ask about the things that were important to them. It was such a wonderful experience, it renewed me, left me very inspired, reminded me of the importance of actually connecting with people not just talking to them or at them. Giving them space to have their voice heard, so they left feeling like they were actually cared about, that what they felt, what they thought mattered, hopefully it left them empowered and hopeful. It still gives me goose bumps this morning. If I had the ability I would do this community by community.

There is nothing more important than being able to leave and feel like you had a small piece of giving people a sense of hope, that they are not alone, that everything they are feeling is valid. As much as they said I inspired them, I think they were more of an inspiration to me. The level of engagement surprised me, reminded me of how important it is for us to share our experiences and our stories. So today with my heart full, I will be thinking about each and every one of those people, grateful for all they left me with, and hope as you go about your day you can find those things for which make your day rich and full.

Sitting this morning enjoying my morning coffee, my little dog sleeping beside me I’m going over my coming week. Yesterday, I started getting things ready for my presentation in Lake Country, they have asked me to do a 30 minute presentation, which by any standards is a long time for a speech/ presentation. I am changing things up for this talk. There is so many aspects and talking points when talking dementia, often we have one topic we are specifically talking to. Be it Stigma, Technology, Rehabilitations, Living Well, and the list goes on, normally even 15 minutes is a long time to talk when presenting. So this time being given a 30 minute time slot I am changing it up, I will talk to many points, but a very large part of it will be interactive with those present.

I have decided to use the approach instead of doing what we know, time to do things differently. We often talk about how 30 years has not brought the level of change we want and that perhaps we need to do something different instead of running the same old tape so to speak. So this will be my first time changing it up. I am hoping that having direct interaction can have a more positive and lasting effect. Getting people truly engaged, instead of talking and knowing many are only half listening, thinking about other things, maybe engaging with them will allow a greater learning/ understanding dementia environment. I’m looking forward to it, I’m looking forward to it being genuine and authentic. Not being restricted about topics, or just being given a list and having to choose which I might like to talk to allows me to be creative with my presentation, it will be a mixed group, people living with and their partners, care providers, professionals, so engaging them should bring about some great discussions.

There is of course times when speaking engagements require the old tried and true, but it doesn’t mean that we cant also change things up when appropriate. I don’t want to become stale, not in my advocacy work, not in my everyday life.

Even living with Dementia, and even though when I think about it, and how for many with dementia routines are important as are being in familiar settings, it is in part why I still live where I do, I am comfortable here. But it does not mean we can not nor should never try to change things even if seemingly little things, like changing its my walking routes, eating breakfast at lunch and dinner at breakfast. We just have to make room for adjustments and changes, but they are possible, just like travel is still possible.

On that note, I am happy to say I have had two of my abstracts chosen for the Alzheimer’s Disease International Conference in June in London England. It seems surreal because it’s been so long since we have had the opportunity to go to these conferences and to see people we have not seen for a long time and meet new people. So lots of work ahead for that but the basis is done in the abstracts that I submitted.

Well I’ve just returned from a very very long walk, met up with a friend, she said I look totally different, from seeing me before the Christmas holidays, so more evidence of how much and how drastic of a change I am going through. Oh and did I mention, on top of being able to feel my cheek bones, I today noticed I am once again starting to be able to see the dimples when I smile, the little dimples that I had actually forgot I had. So much to be grateful for today, it was a beautiful weekend.

Tomorrow is Valentines Day, for many it is a difficult day because they are alone, it is a day that really for some is nothing more than a smack at them to remind them of that fact. For me, I always think about my husband, who I always received the most beautiful card from and one single long stemmed red rose. We always had a lovely dinner together, usually it involved prawns because we both loved them. So I don’t think a lot about the fact I am alone, I instead focus on being grateful for the memories. However, I do believe that we should treat ourselves, and be enjoy a nice dinner, give ourselves chocolates, or flowers or whatever we chose because loving ourselves is important and honouring that is a good thing. So I have bought myself a little bouquet of Tulips for Valentines Day. Love is Love and I hope whether you are alone, or you are sharing your special day with someone, I hope you remember to spread love throughout the year, not just on Valentines Day, because the world can never have too much love.

I had a zoom call with a friend that I haven’t talked to in a very long time yesterday. She had sent me a surprise invite a few days previous, and in all honesty it couldn’t have come at a better time. It amazes me how things happen in the and at the most unexpected times and ways. I dont believe they are coincidents, I believe the universe gives us what we need sometimes even if we dont know we need them. This catch up zoom was so a perfect example, great to be able to just let things flow, it was effortless, laughter and tears, sharing and caring.

She was so genuinely happy to see me looking and feeling so good, she was genuine her her interest about the drastic and very positive results I have had frim my Moderna Vaccine. She was also able without me having to try to explain it, and actually put into words for me some of what Ive been struggling too, the challenge of trying to reunite this new and very different change, getting my mind to trust my body, stopping that fear that sneaks in. It is not quite as easy as people think, your mind and body must reestablish a new relationship with each other. For so long, I knew what how my body was and would react to what I was asking of it, it as changed so the connection between the two has to establish new paths of connectivity. Its like becoming one with yourself, again, often times we get disconnected with ourselves, sometimes without realizing it, sometimes because of events that were and are out of our control. Having someone help us make sense of it, is sometimes a gift without measure.

I have said in recent posts that I am trying to be mindful of what my body needs, giving myself space and time to settle into this new piece.

We talked about the hope that these vaccines and all the various ways they may lead to great things for so many, I believe there is much on the horizon. I have renewed hope, not just for myself but for so many going forward, in the coming years, and we all need hope, and seeing and feeling what this Moderna has done for me fills me with hope.

I wake up every morning put my hands to my face, every day that I still can feel my cheek bones, I am excited, I normally have a round face, but the inflammation that has plaque my body for the last year or more, having disappeared, I can actually feel my cheek bones, my sister in law said I look ten years younger than I did just a short couple of months ago. My body doesn’t hurt, I haven’t had brain fog in five weeks, but there is still this settling in period. It was so good to talk about it without worrying about judgement.

We all need to grant ourselves some grace, to be kind to ourselves, life challenges us, in good ways and not so good ways, the world seems to be at such a place of unrest, in so many ways it feels like good versus evil, it makes me want to tuck in at home and shelter myself from all the ugliness I see, but then I go out for my walks and I encounter kindness and see the good there still is. I remind myself everyday to not get caught up in it. That can be a very hard thing for us to do, I believe there is good and positive ways to bring about change, and there is ways that can although well intentioned ends up causing more harm than good, I will stick to trying to effect change through the channels I believe has the best chance of success, even if it takes longer, and perhaps the changes I advocate for my not seem to be as important to many, to those of us who work tirelessly for those changes they are every bit as important and I don’t want to disrupt others rights while I do it. And as I look at so much unrest in our world today, I cant help but wonder if all that energy were to be put into doing things that were of positive note, how much better the world would be, how much good could be done, how much change could happen. It feels as though right now people need to remember the old saying ” the devil you know versus the devil you don’t.”

This leads me to remind myself that I have been given this miracle, and I don’t t know have any of the answers as to the how’s or why’s, and all of the science and medical components of it are in the hands of my doctors and the Moderna folks. Many will question it, many will refuse to believe it, those who have witnessed it in me, watched, been scared for me over the last year, have the best and perhaps most important opinion and perspective. Perhaps at the end of the day all I can do, other than record any changes, what has happened and what it is for me as time goes along and maybe I am not supposed to now, maybe I am just supposed to accept what is, give myself the grace to enjoy it. I am getting there settling into my new normal. So thank you my friend for somehow knowing when to turn up.

The week has flown by, I am feeling like I haven’t in years if ever, however in the last two days I have noticed that I have a couple little things that today will warrant a call to my doctors, I think that with all the changes that have transpired, my medications may need adjusting or stopped.

I didn’t sleep much last night, my brain was running videos all night, my life replaying, its funny for so many years now Ive had all these blank spots, unable to recall much of my life, and it was like in an all the blanks got filled in, It somehow was freeing. just like my body feels like its resetting itself, so too is my brain. It all feels and sounds crazy and I’m having trouble articulating it, but my body feels so very different and foreign to me. I am slowly learning to trust it, its odd when for so long its been failing me, its know providing me with so much. I am trying very hard to not take ot for granted to be kind to it, to feed it, rest it, offer it kindness.

We spend so much of our lives pushing our bodies, our minds, demanding more and more from it and then when it breaks we are angry, disappointed, sad. I know my illness will always be with me, I never thought I’d see anything more than decline, all the underlying complications effected the dementia in ways that I don’t really think I gave enough thought to. Seeing how this Moderna vaccine has changed my immune system, and how it works in and with my system, how much of those underlying complications, with blood flow, inflammation, fatigue, pain, the true impact of those things on my dementia. We often talk about how managing the symptoms, about how looking for a cure is the wrong approach, I am convinced dealing with all these other things is the key. I have no idea idea if this gift I’ve been handed will last, but I do know I will do all I can to honour this vessel that houses me. I will offer it better nutrition, rest, and kindness, I will keep moving, giving it the best possible chance. It doesn’t mean I will be perfect, it means I will be mindful.

I am once again finding myself searching for who I am, this event has changed me on many levels, just like my dementia diagnosis changed me. Funny we acknowledge how trauma effects and changes us, but traumas don’t always have to be bad, which in this case it is the complete opposite of bad, but it still impacts, it still changes us.

I am going to starting to take part in a 12 week program, through the university of Waterloo, it will be a exercise/ nutrition program for people with dementia, I will take the program and provide feedback. I am also finally doing my first presentation/ speech in my local area, its been a lot of work, and time to break through, but its important to me. Continued work with the CCNA, and others, but I will be doing all in ways I feel I can manage. I feel somehow stronger than I have for a very long time but yet very fragile at the same time. Maybe feeling fragile comes because the very things that are causing so much discord in our country is the very thing that has actually provided me with ability to have a quality of life to be able to try to do things I’ve always wanted, which two months ago were slipping farther away day by day. Its a strangely odd place to sit.