Before my diagnosis, I was carefree and always up for an adventure. I loved my working life because every day was different. I was fearless and would go out by myself, meet new people, and occasionally get into a little bit of trouble.
I participated fully in arts and culture. I went to the theatre, dance recitals, concerts, art gallery openings, book readings, and events at the library. Sometimes by myself and with friends. I also liked to try new restaurants. In fact, I had a messy house because I was always working or out with my friends.
Discovering the arts and experiencing culture in Toronto and through travel gave me great joy. I loved my life and my home. I always had a place for friends to stay over, sometimes for weeks.
Now, since my Posterior Cortical Atrophy (PCA) diagnosis, I am reluctant to have anyone stay with me because of my many peculiar needs. Before I would just give out a key and say: “Make yourself at home.” Before I would bike everywhere and had a spare bike for guests. We’d explore the city together or I’d leave friends to their own devices while I was at work.
After receiving a diagnosis like PCA, you really know who your friends are. Some people have difficulty seeing the new Sonya and how I have changed. I am very cautious now. I avoid big crowds and need to be accompanied almost always. I am careful to watch where I have to walk, the curbs, who I may bump into, other people. I moved to a different neighbourhood to a home better suited to my needs. My friends know that I don’t go out as much. But I do have good people in my neighbourhood who help me when I need to go to a store or run an errand.
With PCA, I feel like I am an outsider. I can’t get right in there and do what I used to do. I still listen to music, I make lots of phone calls. I don’t own a television and get most of my arts and culture by listening to CBC on the radio. I tune into the same shows that I used to before my diagnosis.
I still go to plays, dance performances, and movies (although one drawback is that I can no longer read subtitles). I would not enjoy a rock concert now because of the number of people at those venues. Besides, I know I can get all of this music on my Google Home device.
I have always collected art and it soothes me. All of the pieces I collected over the years have their own story. I had to give up some when I moved but I still remember them all.
Regrettably, I have not tried books on tape/audio books, but I do have a friend who reads to me every week and still love hearing about a good book.
I was always open to new experiences but having PCA threw me for a loop. I never expected not to be able to ride my bike or miss seeing foreign films because I can’t read the subtitles.
I was creative in my job and as a problem solver had to come up with solutions. Working in print production was very detail-oriented. I needed to coordinate colours, find the right paper stock, get the right photographer, and ensure just-in-time delivery.
I was always faced with new challenges. Our clients demanded just the right talent. I have to put my creativity into different tasks now. With PCA I am still solving problems but now I have to figure out how to put on my clothes the right way, eat without using utensils and find new ways to get around since I can’t take transit alone.
Since I can no longer cook, I have come up with a way to make sure I eat a meal every day. A friend takes me shopping and we buy fruit, veggies, nuts, and precooked meals.
I have had to change my stylish clothes for sweats and house dresses because they are easier to put on.
For more than 30 years, I’ve collaborated with a graphic designer to create a Valentine’s card. I always celebrate Valentine’s Day because when I turned 30 I had a piece of my lung removed and this has been my special way of celebrating life. I send about 75 cards out each year. One of my great joys is sending these out. People enjoy receiving them. It is a lot of work because people move and it is difficult to keep track of their addresses. My friends and family now help me send the cards as I can no longer write. I am glad I have kept up the tradition, but it takes an army to do it.
Through RDS Canada, I had the opportunity to submit a poem for their national launch last December. The poem gave me joy and I have shared it with friends and family to help them understand what I am going through.
Read Sonya’s poem, PCA and The Single Girl here
Most of my creativity is focused on finding ways to get through each day. When it takes two hours just to bathe and get dressed, there isn’t much left over. But I still very much appreciate creativity in others. I am less creative now because I can’t do things with my hands. I can’t even stick a stamp on an envelope. I’ve lost most of it – I can’t send an impromptu card, photo or note.
I can be creative but I need many hands to help me.
Music inspires me, but it is hard to find songs sometimes – the devices can be confusing and I can’t always remember the titles.
What I have learned is that it is good to pick up the phone. I was always someone who liked to hear people’s voices. And I am glad that I am not afraid to do that. I try to reach out to people because I get lonely.
My friends are my inspiration, especially when they take me out – even if just for a walk! We have beautiful gardens in my neighbourhood and I love to hear the sounds of children playing.
Going for walks, receiving mail. Having visits for a short time. Sharing a meal. I’ve lost some spontaneity. I do listen to the news on the hour and love to see a movie. I like to hear what is going on in the world and I need people. I’m not really picky anymore. Before, if I didn’t feel like going, I wouldn’t go. Now I’ll take anything. I even went to a couple of operas recently! Now I will go to just about anything because I want that experience and I want the contact.
I also value the Zoom calls I have with our RDS support group. It’s great to be able to share our frustrations and our strategies for coping. We all have very different interests and backgrounds but we do share one thing: PCA. We laugh together about our shared fate, because, really, what else can you do?
For venues, it is important to have an elevator or at least short sets of stairs. I can’t do escalators and long flights of stairs are difficult. Venues can also provide safe seating. When I am going to an event, I make it a point to ask in advance if they can provide special courtesy seating. Community spaces should have adequate lighting and could provide personal assistance to take you to your seat.
The digital age does not really help with information about public spaces since I can no longer use a computer. So having access to assistance on site is even more important.
You have to be patient. You have to be resourceful. You have to speak up. Even if you are grumpy, you have to try to make things work.
I’d give anything to have my old life back and live freely as before. But I realize that that is not going to happen. For now, I’m channeling my creativity and doing the best I can.
I still have a song in my heart.
Rare Dementia Support Canada provides a continuous and tailored specialist support community for people who are living with, affected by, or at risk of, a diagnosis of rare or young onset dementia.
They are led by Nipissing University through a generous donation from The Hilary and Galen Weston Foundation. Their support services are delivered by a team of support practitioners in partnership with Rare Dementia Support in the UK.