@ Smokiebear
I wish I wasn't reaching out with it honestly, I wish neither of you had it to begin with. I believe we share a country, but I'm not sure beyond that. I would love to if you were close though!
*I will send you a pm and we'll take it from there. But I'm very grateful that found me, really I am. The validation is pure inspiration. It was meant to be.
Her symptoms didn't make sense. They thought bipolar disorder, they thought depression.
*Exact same with me. ARGH
It was when she was finally admitted for a psychiatric evaluation that it was caught. She's 48 now.
*They must have done the occupational therapy testing for it. I have my OT report which defines our deficiencies in medical terms, it was made specifically to assess brain dysfunction.
*AND I'm 44, almost same age as her. Just sends chills down my back. There is no support for us and no therapies made available to us. Every resource I have right now I have fought for. I could just go on and on.
*But I shake my head in disbelief of the lack of hope provided by the medical system. Big sigh. So much can be done, it doesn't have to be a death sentence, it's a life sentence, there is a difference now.
*And this news comes to me right before I make my magic oil to fight the depths of this dark and demeaning neuro disease. You can't write this sh*t, oh wait I am..
Anyways, just trying to reel myself back.
It's less of how you can be here for me, and how I can be there for you. I know what you're facing, and if there's any way I could stand with you and help you, I would be honoured.
*If I may...just keep communication open with me, it's a lot to ask, but I can learn from you too. I would like to know her name (privately through pm) so I can add her to my prayers and dreams.
*She will be a fallen FTD warrior who will be on my list of "never forgotten." Thank you so much...for...everything especially honesty. I knew this forum was magical, but I am dumbfounded and humble. Thank you UNIVERSE!
If we were able to get her home to take care of her, we would. It's past the point of no return for us unfortunately.
*Really super tough to hear this, but thank you from the bottom of my heart for sharing with me. You are empowering me, this humbles me so much. She will be my motivation. And I'm really freakin' sorry she wasn't taken seriously because the world can be really harsh, especially from doctors.
* They just have no clue how demoralizing this disease can be. Dignity is not the disease, why deny us? Sorry, I digress, I'm gonna write this out in my story, I promise you that.
I think you really should write something about it. Take your time. Use a different name to publish it.[/QUOTE]
*I will do it, valid points you have. I've decided. I'm doing to dedicate it to "her" and the other voices who were not heard. This is the sign I needed. BTW, my husband fully supports this as I have been keeping him informed of our convo because he is completely blown away as well.
*I believe... tragedy does bring people together, but hope keeps people alive.
*There are not enough words to express the karma and hope you bestowed upon me. Your story is just as important as mine. Let's be 420 friends. With so much love and care for your family and all patients with FTD.
Gniiiiite Smokiebear, I will be in touch, once I digest this milestone in my journey. BIG HUG
I certainly understand the reading issues with font size, style, screen glare, etc. There are some days that I just can't do it at all - even though reading was always my favorite past time.
