I just read my last post from May 2016. It reminded me that my blog is much like my memory, so full of large gaps.
I am to the phase of FTD where my memory continues to dissipate. It is hard, sad, scarey, annoying, among the many adjectives that could be used to describe how one feels when their brain has been used as the target sheet after a long session of target practice, perhaps more holes than solid areas. They call this the “mid” stage of FTD and scares the hell out of you as to what the “end” stage will take from you.
I have been very fortunate, having the early stage of the disease last much, much longer than most. Also having the ability to put my advocacy skills put to use to, at least in small ways, effect the betterment of those with dementia. My finest moment, in my humble opinion, being able to be the first person with a disability to speak at the World Health Organization (WHO) at their 2015 annual conference. I was also afforded the opportunity to sit for over an hour and visit with the president of human rights for WHO, the head for the world – wow! How does this happen to an ordinary person like myself.
I continue to be proud of being a co-founder and first co-chair of Dementia Alliance International (DAI) which continues to do awesome work regarding the rights of those with dementia. My greatest hope for them is that they learn how to utilize the enormous amount of talent they have in their membership and to become more inwardly inclusive. The window of opportunity for each of us is so time limited.
Back to the gaps. Although many wonderful experiences have been afforded to me they have now fallen into the gap. I historically know these things have occurred, but the actual event has fallen into the black hole of my mind. Most of all I wish I could remember my marriage to Rose, the absolute rock in my life without who I could no longer function in this world. Thanks to one of my besties, Jacquie, I will always have the opportunity to relive the moment by watching the video she recorded for me. I must say, though many may not understand, that pictures and videos do not replace the vision of actually being there in your mind.
As time goes by and the gaps get larger I am able to mingle in the world less and less, it is to stressful. The internal regulator of my feelings and emotions continues to change and I can tolerate less and less, perhaps a phenomenon that only others with FTD can understand.
I hope to be able to ddrraagg myself out of my hole more often to hopefully share more of this journey with each of you, my family, friends, and those who hope to understand. Until then I shall remain in the moment, the only place I have any control over.
Love to all.