I still remember the phone call from my dad, "the doctor thinks it's something called pick disease. I'll get Leslie to send you the information he gave us. But you can find it all on google." A sense of relief overcomes you when you get the final diagnosis, you finally know what you are dealing with, you have named the enemy, you can finally fight this after three years of misdiagnosis and unanswered questions. Then you type "Pick Disease" into Google, you find out it's actually "Pick's Disease" or more specifically "Frontal Temporal Dementia (FTD)." You begin to realize, there is no fighting this, there's not even any slowing this down. You read life expectancies, you read about the wonder herb, chemical, plant etc that "so and so" are swearing by (that every medical professional somehow missed.) you text your BFFs, and receive a phone call from that BFF (which is super weird... We don't do phone calls unless it is super urgent,) but you don't answer it, cause somehow you are expected to still go to work and you know, work. That phone call becomes a treasured voicemail that you still have saved almost three years later. You finally ban yourself from the internet for a few weeks (at least from googling this disease) and wait for the final confirmation from the neurologist, which comes the same day that you shatter your leg by falling down the stairs (which is also the one year anniversary of your grandmother's death.) (This is also the day that gets banned from your family's calendar, at the Stewart houses, we have October 7a, 7b and 9... No 8 to speak of)
Over the past several years, we have watched as my mom slowly faded from us, becoming a completely different person, that is unrecognizable from the person we knew and grew up with. Last year my family and I joined the voices of people across the nation in the fight against dementia in the Alzheimer's (there's a word I wish I didn't know how to spell) Association's Walk to End Alzheimer's. This year we are doing it again. It's my dream and goal, that one day that relief of having a dementia diagnosis, can remain a relief, that it is no longer the end of the road. Treatment must be found that does more then a manage the symptoms.
And here is my crossfit tie in- I've learned over the past several months through crossfit, that to finish something really hard, it takes more then sheer determination, it takes people. It takes the people around you telling you to just do sets of 5, cause eventually you will make it to 50, it takes three people sitting down in front of you and counting to ten for you, cause counting is sometimes really hard, it takes someone saying, "you've got this, don't stop," then offering a high five or knuckle tap. I've seen the effect of people rallying around someone and shouting encouragement (or sometimes simply offering a thumbs up or head nod from across the room)
As most people that take the time to read this blog are either close family and friends, or crossfitters them selves, I'm asking that you partner with me in this fight. That you rally around my family, and the families of those nearly 5 million people affected by dementia and show support. Join my family's team at the 5k in October, deck yourselves out in purple, and come walk with us. Give a few dollars to support the cause. Ask me about car magnets that you can buy as a fundraiser. Ask me about the cool crafting my sisters and I plan to do to raise money. Ask me for a change jar to collect your spare change over the next few months for this cause. Visit our team page, leave some encouragement, share my team page with your friends. The biggest obstacle for this disease is awareness, it's not an "old person's disease" my mom was 55 when she was diagnosed, others are younger. Join me on this fight. Even if it's the simple clicking of a share button.
You can find my team page here: http://act.alz.org/site/TR/Walk/?px=9290815&pg=personal&fr_id=5036
