I am posting this piece written my friend and fellow advocate Jerry Wylie. Jerry and I both sat on the board of Dementia Alliance International. We were blessed to have to opportunity to meet in person in Chicago at the 33rd annual Alzheimer’s Disease International conference. and although we already had built a friendship via our meetings and DAI work, the bond formed once we met in person will be everlasting. I am honoured to have his friendship, to see all the incredible things he does and has accomplished for so many living with Dementia. Today I read his words and new instantly exactly what he was speaking of and that I had to share it so here it is with his permission.
People often say to me “I can’t tell you have Dementia” which should be a compliment but, it’s frustrating, like “why do I constantly have to explain my disease”.
You see, I have MIXED DEMENTIA (Lewy Body + Vascular) so, I can appear normal at times. The chart below will help you understand, my journey is not, a smooth ride
When it spikes up, I often ask myself if I was just imagining that I had Dementia? When it takes a deep dive, I feel like I am ready for, “almost ask” for being placed in a memory care home. Add night terrors and hallucinations and, you get a truly, terrifying roller coaster ride. My wife sadly gets to hear me say, “I want to end this”.
It’s tiring, confusing and relentless but, I survive by doing my best to help others and by falling on my faith.
Yes, I am getting tired and yes, it’s progressing but, I am a Dementia Warrior. We don’t stop.
Thank you my friend for allowing me to share these important words. Thank you for the being such an inspiration and great advocate.