Thursday, September 25, 2014

The Alzheimer's Assoc. and FTD Awareness & PASRS CONFERENCE

* I run a private FTD Patient Support Group on Facebook.  The groups for FTD Patients Only and is open to those with a firm FTD diagnosis. The support group is a place where those with FTD can gather in a positive environment and realize there not alone. It's also a source of accurate information which is rare in the quick changing world of FTD. The director of AFTD, Sharon Denny is a permanent guest member. AFTD has been kind enough to open up there medical board to answer member questions. Please email me at howardglickftd@gmail.com to join.
Howard

The Alzheimer's Assoc. did a cover story about FTD and including me in there quarterly Newsletter. Don't know if anyone out there knows this but I have FTD, which is a rare type of Dementia :-) Dementia is living a life of a diminishing brain and skills. Besides my behavior and physical health declining, I'm struggling with everything. Stop, put away your violin right now. I've a life and I'm continuing to make the most of it no matter what shape I'm in. No matter how far I fall, I'll continue to get up.  I have been working for over a week and countless, countless hours to try and publish for you the 20 page or so Alzheimer's Assoc. Newsletter below. Never succeeded. I then took a screen shot and finally wound up somehow converting it to Word, sending it to my I Phone Text, then emailing it to my email and downloading it to IPhoto, Edited and cropped the upper of my computer off the screenshot picture and importing it to the blog page. Have had at least 100+ failures. I'm sitting here laughing and Happy. I got it done. Last year or two years ago this would've taken me 10 seconds. 10 seconds to weeks. People ask me how I blog? Like everything else, it's very, very hard but I'm committed to keep up with my FTD awareness and advocacy campaign till the Fat Lady Sings.

I want to thank the Alzheimers Association for there article on me and helping with FTD awareness. FTD is a younger brother/sister dementia and I deeply appreciate all they do for Alz, FTD and the other dementia's. Met with the lovely people at the Alzheimer's Assoc. office here twice and have had multiple emails. 

My desire, the last thing on Howard Glick's bucket list was to start an FTD Patient Support Group here in the Phoenix area. Start here and expand. I've other's in my FTD Patient Group that would like to do the same around the country. It is needed and no one knows this as much as us FTD'ers who are functioning. I already have 4 FTD'ers interested in being in the Phoenix group and the Alz. Assoc. told me they know of plenty more. They were excited at helping support me with this. They also spoke to me about doing regional speaking engagements on FTD/Dementia. This was months ago and I keep pestering. Yes, I've zero patience. When you have FTD your placed automatically in a zero patience zone. No time for BS. I regularly drive my good friends at AFTD crazy. Surprised they haven't put a hit out on me. Anyway, I'm sure the Alzheimer's Assoc. will get back to me. I have to have patience and remember Alzheimer's Assoc. is the "Memory/Forgetting" dementia :-) I'll keep reminding and pestering. lol



This week I was honored to be a guest speaker for the PASRS - Professional Association of Senior Referral Specialists. Connected with many owner/operators of Assisted Living facilities. Thank you Rita McBride for giving me the opportunity to help with FTD awareness. At one point I asked how many in the room of 150+ have heard of FTD. Was pleasantly surprised that more than 3/4 were familiar FTD. I discussed my story, FTD and the major issues of FTD'ers in Assisted Living. I also get pretty emotional while speaking. The road I've traveled and am on is tough and rehashing what is a continuing one way road is tough.My happiest moment was in the end when one woman came up to me that owns an Assisted Living facility and told me she has a gentleman with FTD in her facility and because of my talk, she know understands his behaviors better which will lead to better treatment. Once again I thank PASRS for allowing to share my information with them.

My speaking engagement was filmed for use with the FTD documentary "Howard's Brain" which will be made by Joseph Becker of Thinkfilm. Joseph Becker has made the FTD, AFTD sponsored documentary, "It is What it is" and his company is known for being the filmmakers of the hit TV series, "West Wing."


(Click to see short film)

(click to see )

I love what I'm doing with FTD awareness. If anyone needs me for a speaking engagement, I'm free to travel anywhere, anytime.



























There's a lot more happening in my life. With my health, with me moving in a few weeks, with a group of wonderful healthcare related woman, which I call "Howard's Angels." These wonderful experienced woman want to help me by becoming a group POA. They will be the official Howard FTD Team. I need help. All alone with FTD has become to hard for me to manage. Having many difficulties and I'm lucky enough to have some kind hearted people step up. Hope to be updating soon. Just going to publish now. I'm exhausted. lol Last time I published my blog I forgot how to send it to out via my database. Forge on......

I want to thank everyone that has helped me with your support over the last years. Your kind communications and financial help has enabled me to do a few good things in this lifetime. Will try my best to carry on rocking and rolling.

Howard

Thank you to those that have sent me letters, gift cards, Starbucks, cash etc. They are deeply appreciated. I've dedicated my life to FTD awareness and advocacy. I live alone modestly with no caregiver. I'm not starving, but am in the minus everything month. For those that want to help there is a yellow donation button on right top of the page or my address below with gift cards, checks or cash. All help is deeply appreciated:

Howard Glick
7791 East Osborn Rd. apt. 170E
Scottsdale, AZ 85251





5 comments:

  1. Howard, you amaze me as always. I don't know how you keep it up...I know it's not easy!! You are the BEST I am so glad you have "Howard's Angels" now. You are an inspiration, and not just for the FTD/ALZ communities, but also for others who have medical issues (me) that are challenging. Rock and Roll, On, and On, and On!!!!!!!!!!!

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  2. I'm glad you're back Howard, I was getting worried. Keep forging on!

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    1. Thank you Susie. Think I've plateau at a new, lower level. Ain't pretty, but I'm forging on. Thanks of the support.

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  3. It is great to see those struggling pushing forward and keeping the movement going. Looks like Susie is glad you are back Howard , keep pushing forward

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  4. Thanks this is great to see that we all must strive to move forward and keep pushing

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