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.
FTD can hang out, but it's not going to rule my life.
In an effort to help me in my efforts to increase awareness of FTD, I was contacted by Sharon Denny of AFTD and Joe Becker of Thinkfilm Inc. about making a film of my experiences dealing with being misdiagnosed, diagnosed, symptoms, and daily challenges with bvFTD.
I am currently filming my thoughts and experiences with the intention of making a valuable contribution to the field of FTD. The filming is being done with the help of an intern, Lena Pressman (NYC reporter Gabe Pressman's granddaughter).
The object of being a voice of those with FTD is to help improve awareness, inspire others with FTD to get back on their feet, help give insight and understanding to caregivers about loved ones, professional education, and the development of better resources that might one day lead to a cure.
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!
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?).
early dementia said...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.
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!- Minds i said...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.
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"
-------------------------------------------------
I went from making a 100k+ a year to now being disabled with $1.45 a day in food stamps.
I now know the true meaning of purpose in life. I am living a dream few experience by making a profound difference in peoples lives. I will never take for granted one moment in this lifetime. There is no question I appreciate being able to do such meaningful work. As long as I'm breathing, I will continue on this path.
The only thing missing is the ability to spend more time with my children who reside in Seattle and the possibility of finding a partner in life.
Howard Glick
My name is Gloria, I am 62 and received my diagnoses (FTLD) eight months ago. I am working part time right now, but recently prepared the budget for an agency within the Department of Justice. Presently, it is difficult to even balance my checkbook. I have difficulty conversing with other people, they say I have a language of my own. I am trying to stay positive and prepare my children for the inevitable. Thanks for your inspirational story.
ReplyDeleteHi Gloria,
DeleteI wish you the best of luck. Sounds like your doing great, considering your situation. Remember, There finding now people can live 20+ years with FTD. There's now crystal ball. I have an online support group for FTD Patients. Some have had FTD for more than 15 years and are fine. There are 36 members in the group. It's a positive group and we have resources open from the experts at AFTD. If you'd like to join the group please email me. howardjglick@gmail.com
I just started writing about my husband's brother's situation. He was diagnosed with FTD at age 49, but it took about three years for us to get a diagnosis. His wife kicked him out of his home and while he had his bachelor home to move into, we didn't realize he had dementia and wasn't paying his bills. He lost everything and on top of the dementia, his wife's attorney took advantage of his illness. The courts naturally favor the wife and he was accused of taking a lower paying job just so as not to pay child support. He was ordered to pay child support based on his $100,000 per year job that he had two years prior to the separation, while he was earning $30,000 per year at a cell phone store, which he got fired from. The divorce has been going on and continues to this day, for seven years even though Frank is in a nursing home at age 52. My husband has been appointed guardian, which was another battle, and we have been forced to shoulder this burden for Frank. There should be laws to prevent attorneys from taking advantage of disabled people, and laws to prevent attorneys from dragging out a simple divorce for this long just to generate fees for themselves. I haven't gotten to the juicy parts yet, but I've started writing his story. http://www.forfranksake.blogspot.com/
ReplyDeleteThis comment has been removed by a blog administrator.
ReplyDeleteDear Howard, I am so extremely proud of you for having the courage and strength to fight this disease. You are a pioneer for all of us. My Mom (age 62) has FTD and my sister and I spend every waking moment bringing awareness to the public about this horrible disease. When she was first diagnosed, I was a flight attendant and traveled the World wearing and handing out AFTD bracelets to anyone and everyone who would ask about the one I wore everyday. We now have a website where we give relationship advice to the public and 50% of the proceeds go to research on a cure for FTD. All we care about is a cure, right here, right now. I'm thankful to you for helping those of us who love someone with the horrible disease because my Mom is beyond communication at this point, yet we know she is still mom inside and we know she has much to say. We love her with our entire heart and we will never give up. Thank you Howard. SO MUCH. Michelle & Renee
ReplyDelete