I want to thank everyone for there support. This blog was started in July with the intention of advocating for those with FTD- Frontotemporal Degeneration. The purpose was to give insight and increase awareness of FTD to caregivers and the medical community by articulating my first person experience. I didn't realize at the time awareness of FTD was built upon family, caregiver, and medical community experience. Virtually no one diagnosed and living the disease communicated what it is like to live with it.
For those new to the blog, my bvFTD symptoms started manifesting themselves in 2004 with the first SPECT scan showing it in 2006 and further progression on a PET scan in 2010. I was misdiagnosed as bipolar for 6 1/2 years.
This effort by me to articulate what life with bvFTD is like has been received successfully with my involvement now in numerous online forums/support groups etc. worldwide for FTD/Dementia. Between my blog and email communications I have received over 4,500 correspondences since July. I also set up a Facebook, Twitter, and Linked-in accounts and I have absolutely no idea how many correspondences I've had with those.
Simply put, I eat and breathe my efforts 7 days a week, every moment possible. I am relentless in my efforts to further public awareness and help others.
This is my life and I love every minute of it. I never sleep more than 4 hours a night. My laptop is never more than a foot away from me and in the absence of a woman in my life sleeps right next to me. It even has a special cuddling and snoring app. Right now it's 3am and I'm typing away. Though I am exhausted and am aware every fleeting moment of the symptoms of FTD, I have decided I am going to ignore FTD and press forward to create for myself a happy productive life. FTD is just going to learn to coexist with a Howard Glick that will manage the symptoms.
Below are just a smattering of responses I receive on a daily basis which help keep me motivated moment by moment with my struggle with FTD.
Thank you again. Truly this has been so helpful for me. I'm now sobbing and can no longer read the screen, but we have to get it out!!!! :) I am so thankful for all of the wonderful memories I have and also thankful he is not suffering. Keep on keeping on...Take care!
Your blog is so eye-opening. Thank you much for sharing your story, as it is very helpful to those of us who love someone with dementia--no matter what type. Take care and God bless.
I'm catching up on your blog as we speak! :) Your posts sound so familiar to me...similiar to what we have been through with my dad!!! FTD does not define you guys and never will and there are people out there who care!!!!!! I just want you to know that. I care!!!
Hi Howard - I found your blog yesterday and started following it. My mom has FTD (She's 57, and has been ill for about seven years now). I found your blog to be wonderfully insightful. My mom doesn't really discuss or acknowledge her condition and is in a later stage - she is suffering some major memory loss already. Anyways I wanted to thank you for what you're doing. So many times I have tried to talk to her and understand what she is going through but it never brings me any answers. My husband is in the Marine Corps, and we are currently living in Japan, while my mother is living in California and my wonderful grandmother is her sole caregiver. I feel so detached from the situation that it makes me crazy! Your blog helps me feel a little less in the dark.
Hello Howard,My apologies for the time it has taken to get back to you – I was away on vacation for two weeks and am just back as of yesterday!Thank you for taking the time to write to me. I am happy to discover your blog. I work with people living with dementia at different stages, and am always so happy to hear people speaking out about their experience. Our groups are always happy to find out about new resources as well.Thank you for getting in touch! Also, you say you love Montreal, I love New York (doesn’t everyone?).
Howard this was a brilliant article. Thank you for being so enlightening and creating such a safe space for those experiencing dementia themselves or by a close person in their lives. People will benefit from this and become more accepting and understanding in light of what you share.
Thank you Howard Glick. You are the most powerful and empowering person know. I am motivated and can move mountains because of your example. Like you I passionately work to empower the lives of others. Thank you Howard! !Your blog is informative, inspirational, insightful and imbued with a sense of humor, kudos to you! Keep on keepin' and blogging on!
What a brilliant way of taking arguably the most devastating moment of your life, and in one year turning it into something unimaginable."Your article was extremely moving and educational to me.. someone who is just learning what you are experiencing.Anyway, I'm really impressed with the honesty and candor (humor and grace) you express on your blog and I'm looking forward to following your life adventure.Never give up your mission, Howard!Thanks Howard, this is a wonderful blog. It is communicating to the world what I already know, that your journey has been remarkable, the admiration and respect I have for you is equally remarkable. The potential of this blog is for caregivers, the medical and legal communities and people managing dementia; it's already a contribution.
You are definitely making a difference.
Your honesty and insightsare remarkable. Your drive to spin gold from straw (seems like there shouldbe a more "ironical" metaphor) and help others is a gift.i am reading your blog in its entirety and i am enjoying it. your candor and enthusiasm for life is nothing you should cry about!
Your ability to educate and touch each and every one of us with your candor and your honesty is a gift. And while facing adversity, each gift you give is immense.This is just so so great.How wonderful, how great.Thank you very much, Howard. My friend was just diagnosed with Pick's. I sent your Blog to her parents and her mom is very interested in Blogging.You are inspiring! Thanks so much!
Thank you so much for this. You are an amazing and courageous person! My father had FTD and passed away 14 years ago at age 58. I was a caregiver for him. I always wondered what he thought about living with his illness. He once said it was sad, but then lived life to the fullest and we made every day count. You are making every day count and I honor your courage and outlook to do the best possible with what life gives us. For 6 years I have been facilitating a support group for adult children of a parent with young onset dementia. I am passing along your blogsite to them Thank you again.
All the best,
Gary Radin - Author "What if it's not Alzheimer's"