Getting into a medical testing for Frontotemporal Dementia is only the first step. Paying for being in the test is even harder.
So far, I’ve had to cancel appointments 2 times. How long they will keep me on the list is unknown.
Mayo Clinic is THE leader in looking for the source of FTD and hope to find a way to slow it down, stabilize it and finally – and what I am praying for – a cure.
What you don’t realize, in any kind of participation in medical testing, is the out of pocket cost to the patient. My cousin, whose wife, passed away from ALS (Lou Gherig’s Disease) recently, was/is unemployed when she was diagnosed. They searched everywhere, and found a blind test in MS, an answer to a prayer. But you pay your own housing, travel, meals, etc. But, if one is facing a literal life and death situation there is nothing you won’t do to win the race over disease, and hold on to life.
I want to thank those who have contributed to help me raise the money to be in Mayo Clinic’s FTD study. I want to go to hang on to hope, to be there to keep the disease away from my children and grandchildren, to help if I cannot have a cure, or gain more lucid time. To be with others fighting, just like me.
Is this an “ask” ? It is.
With blessings and love,