Yolanda’s story was first posted on Global Dementia Voices, October 11, 2012 by Kate Swaffer. I felt it important to highlight the stories from that blog here, as it simply didn’t grow wings, and the stories of people with dementia, or illness leading to symptoms of dementia are important in teaching us all to better understand the human cost of this hideous disease.
Yolanda from Australia
In November 1997, at the age of 31, I was diagnosed with a rare combination of Hodgkin’s lymphoma (lymphatic cancer) and limbic encephalitis which is a brain inflammation. I didn’t know it at the time, or for years after, but the encephalitis is also one of the many types of dementia.
So I’m a long-term survivor – 15 years in November 2012. This isn’t typical of many dementia patients who often have a terminal diagnosis.
It all happened at a happy, if stressful, time in my life. For the eight months preceding the diagnosis, however, my health plummeted at an alarming rate. At one stage, all I could do was sit in a chair and look straight ahead.
Blurred and flickering vision, erratic emotions, severe anxiety and panic attacks, depression, light sensitivities dizziness, sleepiness, insatiable hunger and thirst alongside a total lack of taste, mental confusion and then failing memory put an end to everything. In fact, around the time I was first diagnosed I couldn’t even count backwards from 10.
As soon as they diagnosed me I was treated, and while I’ve improved compared to my worst, 15 years after diagnosis the encephalitis has left me with countless chronic and untreatable health problems including memory and cognitive problems, severe and chronic pain, chronic fatigue and chronic hunger and thirst 24 hours a day.
As an example of my memory problems – if I watch the 30 minute Today Tonight program it isn’t long before I can’t remember what stories went to air – but then if you give me a hint or three I’ll remember some of what went to air. My room is littered with examples of my bad memory – some drawers are labelled, I’ve got a whiteboard for marking down what I’m doing for the week, I’ve got notepads in every room and post-its absolutely everywhere. And the projects lying around the room have got cardboard ‘name plates’ telling me what’s in that pile.
One thing that I’m always looking for are people or groups online that share my symptoms so I won’t feel so “lonely”. And it’s not that easy to find. So hopefully this blog will help some people who have got younger-onset dementia not feel so lonely. But even then the range of ages with this diagnosis can span up to 65 years of age. I once went to a “younger-onset dementia” support group meeting and the other 2 or 3 people there were all probably around 65. Very much older than me at the time – about 43.
Look forward to reading posts by others. Thanks Kate for starting this up.
Yolanda.
Note: Copyright © Yolanda; published with permission.
Very inspiration and another amazing person like you my friend💜
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She is indeed Sam
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Thank you Yolanda for allowing me to publish your story here.
Hopefully with more people with dementia prepared to speak out, we will collectively reduce stigma, ignorance and discrimination. 🙂
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Every time I read these stories I just ache inside. This disease is so cruel and it breaks my heart that little is being done about it. We can go to the moon, time travel and any other number of incredible things, but we can’t cure a disease or even spend money studying it because Big Pharma doesn’t allow cures or else they would be out of business. Such a sad state of affairs, but we are in midstream of a change now, thank God. It is good so many light workers are hard at work trying to speed up the shift in human consciousness. When that breaks through the whole world will change and we aren’t far off now! Hang tight. Blessings…VK
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Many would say ‘they’ are doing lots to try to rid us of this disease, but the research virtually is all about Pharma… and surprise surprise, no-one wants to fund research into healing through non-Pharma!!!!!!!!!!!!!!
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