It’s been an early start here in Regina, last nights events were wonderful, meeting so many for the first time face to face, human connection… so many great great hugs, I don’t think we hug enough. Ending the evening with a lovely dinner and conversations.
I started to write this blog on my first day in Regina at the Agewell Conference, however, I never got back to it, in part because as a person living with dementia, and in talking to many others, even for them, it can and is quite overwhelming. These conferences are busy, we tend to put a lot of stress on ourselves to present well, whatever it is we are presenting. Our stories matter, our perspectives matter, so we not any one else the pressure is and does come from within, because we understand the importance of our involvement. We are always aware that our advocacy work is not about us, it is about the many others who we are speaking for.
So this morning I am back home, my little dog Pheobe, having a sleep in, so I am taking the time to write and catch you up on my thoughts now that the conference is over. I will put some pictures here and there from the event.
Travelling alone through Airports is becoming more of a challenge, getting help is always a challenge, somehow they think you should only require help if you need a wheelchair. It is difficult and frustrating when you ask for assistance to get where you are going, and when you say no you don’t require a wheel chair, and try to explain that you have early onset Dementia and need guidance to your gate, they look at you and say well “just follow the signs. You then have to explain how all the noise and people etc. overwhelm your brain and then you can’t “just follow the signs”, its exhausting sometimes living with a mostly “invisible illness, sometimes I feel like wearing a shirt that says, “I have dementia, please help if I ask.” Upon arrival into a waiting Taxi, the taxi driver a lovely young man, who along with his wife and children, had only recently moved too Regina, to try to build a better life work balance, where they could work to live not live to work, I really enjoyed the conversation with this young man. Once at the hotel he wrote his cell number down, told me if I needed to go anywhere just to call and he would come get me. Service at its finest, little did I now a short time later how important that little piece of paper would be…checked into my room, getting myself settled and organized for the coming days, laying things out to ensure success, and suddenly, I can feel the panic rising, the anxiety coming on, oh dear God, I have lost my envelope with my speech and all my important papers for the conference… this is when my brain becomes overwhelmed, can’t think, panic, absolute panic, tear everything apart nope its gone, before the anxiety overtakes me, I head out for a walk, which I have taught myself to so in these moments, walk and just breathe, let my brain settle and quiet stop the panic. I realize at some point trying to travel alone will not be possible. Once I am feeling more like I can process and make a plan I walk back to the hotel. Then it hits me, maybe I left it in the Taxi, as I had to look up the hotel I was going which was in the envelope, the phone number, find it, a frantic call to the young taxi driver, ah, yes he says, I have it right here and I will just finish with this passenger and I will message you when I get to your hotel. True to his word, I went and sat in the lobby, terrified I would somehow miss him, he arrived with a big smile and I hugged him. so often we can never retrieve things lost in the world of Taxi’s. He told me to text him whenever I needed him during my stay, and he was sitting waiting for me yesterday to take me back to the airport. Tremendous service by this young man, I passed his number on to others, I will tuck it away in case I get back to Regina, which by the way is a lovely City, they did a terrific job of hosting all of us. And wow great restaurants, just wow. I don’t get the opportunity to eat out often so I really enjoyed the exceptional food and service while there.
At the first nights welcoming event, the first person, I was to see was Paul, who I have known, via our connection through DAI’s support groups and then working with various groups and organizations, Research Groups like Agewell and CCNA( just two of many), but we had never met beyond Zoom, and we literally collided, I will try to upload the video, we were lucky enough someone captured it. That started what would be days of tears flowing, moments of pure joy. If there was ever any doubt about the importance of personal interaction and connections, this event showcased how impactful it is. Not just for those of us living with Dementia, but also for the researchers and others that we work with but seldom get the opportunity to come together face to face with. This work, these connections, the work we do with these research groups and organizations are, as we discussed a lot over the time in Regina, the things that help us stay as well and vibrant as we are. I wonder at times if others understand the importance of staging engaged in these ways, it is mentally stimulating, socially engaging, which all help our brains, yes we tire easily, yes we need days to recoup sometimes, yes we have to deal with the issues of becoming overwhelmed, confused, fatigued, but the benefits out weigh all of those things. And if we learn to manage all the effects of those things, then we can and do stay overall much better and I believe help keep our illness at bay for longer. We talked at length about it and everyone with dementia at the conference felt the same way. So please look at getting engaged.
I am also including a picture of a book, funny how it becomes so apparent at how fast my brain forgets things now, I do things, often feel like I am doing nothing, because I simply forget, and this book, which by the way my talk was on Autonomy and Independence. I was presented this book with Thanks for helping and participating in the making of this publication, I of course had no recollection in it at all, another reminder that my illness is truly invisible, apparently to me as well. I laugh about it because i am always so truly surprised when I hear about things I have been doing, and I look stupefied saying..REALLY???
This morning waking to what is the first taste of chilly weather, sweater weather, fuzzy warm socks, a sign winter is suddenly fast approaching. I have decided with only 15 days until I head to the CCNA Conference in Toronto, it is time to get a couple pots of soup on. Fuel up on good nutrition to help keep me going strong for a bit longer.
So although I am tired and I feel the fatigue, I am also, inspired by so many from the conference, I am filled with hope for all the amazing work being done, filled with gratitude for the opportunities offered me, for the connections, and oh my all those amazing hugs.
Hope you all enjoy the week.