04/10/2026
Amanda is an RDS Canada Advisory Circle member. Our thanks to her for sharing her experiences and insights related to PPA.
A note from Amanda:
To my love one’s, my families and friends.
Primary Progressive Aphasia (PPA) is a rare dementia. On April 10th it is ‘Global Primary Progressive Aphsia Awareness Day’
In 2022 I was unexpectedly diagnosed with PPA and Young Onset Alzheimer’s Disease (YOAD). Since then me and my husband’s lives have been changed substantially. Hence it is so important to me, for people to know about PPA and for people to understand how PPA impacts people.
As PPA is rare (less than 1% of dementia’s), there is little research, little support, no medications and as the PPA says, it is progressive and it will not stop. Hence I am asking please to share this email social media and in any other communication routes to anyone you know on April 10th. THANK YOU
We are members of the non for profit organization Rare Dementia Support Canada and Rare Dementia Support UK, they support me and Blaine through our journey, their research focused on rare dementia including PPA. As it is a non-profit organization and website. If you would like to support Rare Dementia Support Canada, their website has a link on the website. But this is not about the money, it is about understanding PPA.
This email is not looking sympathy but to use my experience to help others. I was lucky to find opportunities to support me and opportunities with ‘tools’ to try to slow down my regression. There are people with PPA in Canada, the UK and the world who struggle like we did and feel there is no hope for their life. Hence I want to extend and advocate awareness and understanding of PPA.
Many of you may not be aware of my challenges, how it impacts mine and Blaine’s life but also my wider family. Mum, dad and Lisa and wider friends.
Challenges:
- I had to fight to get a diagnose, it was blamed on Menopause, brain fog, stress and. I was devastated an pushed into the unknown.
- My mental health dropped very quickly.
- I am younger to have dementia, people don’t understand when talking to me by looks alone, especially as my I am impacted by cognitive communication skills.
- I am slow, struggle with conversations because I can’t find or say words, it is like my mouth and brain are not connecting.
- There are no medications for PPA, so I have to use Alzheimers medications.
- I have difficulties in following TV shows, cinemas, navigating airports. Just imagine feeling like you live in a foreign country where you can’t understand what people are saying.
- There is no mental health therapy for dementia diagnoses on Alberta, there is therapy for strokes, to stop smoking, etc, insent wonderful social workers provides from AHS. I was lucky I had therapy through my long term disability benefits from work, sadly many people do not have that options.
- There is no support from Calgary Alzheimers Society for people with Young Onset Alzheimers Disease (YOAD).
Daily practical and emotional support:
- Difficult for people I am talking to as I struggle to find words and saying words.
- Find extremely difficult to process and understanding any information, written, emails, emails, text and verbal.
- Frustration for me and people around me especially when people don’t know or understand my diagnosis.
- I can’t call phone, or contact anyone by phone for example making a simple medical appointment unless my husband is with me.
- It is impacting my independence for both myself and my husband.
- Our lives have been turned upside down, a lot of losses & living grief.
- Lost a career that was so meaningful to me.
- Financial impact - we are blessed to not have financial issues but this impacts most people.
- Imparts our relationship because we both resigned to support and live a quality of life while we can.
- It impacts our ability to not look long term for future plans.
- I have gone into a dark place with depression and thoughts of su***de. Lucky for me I have access to therapy for myself and my husband.
On the positive side:
- The very day I was diagnosed I knew I needed more, not just me neurologist recommendations to slow decline, which I follow the rules from day one I have continued to this day. My job since then is to research for hope, other opportunities to slow down my regression, support for us and medications trails. Doing these things, I use my brain at my pace which help me to advocate for others and that gives me joy and hope. We see the blessings in our lives; time with each other, more quality time with my family, friends and traveling.
My heartfelt gratitude
Amanda x
Thank-you Amanda for sharing the wisdom of your personal experiences with PPA. You are helping to increase awareness of PPA and RDS Canada's virtual support community! Visit us at:
Providing rare or young onset dementia support across Canada
