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





Tuesday, September 2, 2014

Howard Glick FTD Update

* 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


Been shedding tasks for a while now. Long gone are the days of checking this blog multiple times a day how many have visited and what countries there from. How exciting it was reaching milestones of visitors, receiving all your supportive emails and winning multiple awards. Just realized this blog reached 150,000 visitors. Felt good turning the tables on an insidious disease that sucks the life out a person and making myself a vehicle for awareness and hope to many.

10 years ago FTD entered my life. Forced to leave work on disability being misdiagnosed as bipolar I just disappeared from the 17+ year career I had. My career started in NYC and culminated in Seattle.  Then I just disappeared. Never returned calls from friends or associates. My absence was a mystery to many.

Some months ago I was contacted by an old colleague and close friend Dave Ashcraft who had looked me up on the web. I used to manage a string of independent dealerships in North America for a Japanese business equipment manufacturer. Dave is now the VP of of the largest independent dealership in the country, Witt Company, that has dealerships across the Western US including Phoenix. A few weeks ago I was contacted by the President and owner of the company Bill Witt. Bill wanted to come visit me in Phoenix. We met at the Starbucks I frequent. I worked closely with Bill for years and years. You couldn't find a fairer, more honest and astute businessman anywhere. He was also a huge handful to work with. Complicated, but you'd be hard pressed to find a finer individual.

Bill entered Starbucks and his first words were, "Howard Glick, the last time I was with you was March 2x, 200x at the Metropolitan Grill in Seattle. You took me and Gail (wife) out for dinner and bought us a bottle of Jordan wine. Told us you were sick and had to leave Riso.”  Then I was gone.

Bill rehashed mutual colleagues and friends across the country that I've not thought of in years. Some I remembered, some I didn't. Everyone I used to know was doing well in one form or another. It was good to hear. Bill also discussed the years I worked with him. Told me I was the best manufacturers rep he had from the company I worked for and that I always had his companies interests in the forefront - even if it caused me to have problems with my company. I broke down a couple of times. Tried to explain FTD. Tried to explain how I rarely leave my apt., curse out old ladies without realizing I'm doing anything wrong, frequently eat spoiled food and make inappropriate sexual remarks. Also that I now have frequent swallowing/choking issues and balance issues. Explained how I lost my disability from Unum because I was misdiagnosed which has me living now on the poverty line. Bill asked about longevity. I sort of lied and told him I'll be around for a long time. No one has a crystal ball with FTD, but FTD is marinating nicely and I know my time has become limited at best. At least I'm hoping to move on soon.

Bill told me if there was an emergency and I needed some financial help, not to hesitate to call and actually called someone at the company in front of me to let them know if I called to send out help. I was deeply moved at the gesture, but anyone who knows me knows that I'd be homeless before I'd make that call. Bill said he would visit me on his periodic trips in. There are no words to describe how much Bill's visit meant to me. It's soul shaking what I've lost since we worked together.  Sitting here at Starbucks crying as I type. 10 years ago I had a consistent six figure income, kids, and a woman I was madly in love.

Yesterday I received an email from Dave Ashcraft from the same company in Seattle saying he would be visiting me in 4-6 weeks. “You were one of the best salesman I've ever known”. I'm looking at my schedule and I'm going to plan on coming down to Phoenix for a long weekend in the next 4 - 6 weeks. I'll let you know the exact dates."

Was recently contacted by a childhood friend. I haven't seen Peter Herzog since I left for college 35+ years ago. Peter came from Boca Raton, Fl. last week to look and possibly move to AZ. Peter's son was amazed how we just sort of clicked again like many of us NYC Washington Heights alum do. While we were in the car I pointed to a girl and mentioned what a great ass she had. Both Peter and his 23 yr. old son berated me that she looked really young. Age just didn't click, didn't cross my FTD corroded mind. Of course I'm aware now that she was just a kid and am once again on the edge of tears as I'm typing. 

FTD Cocktail - 
1 part Hypersexuality, 
1 part No Filter
1 part Apathy
= Inappropriate sexual remarks, comments and behaviors that the FTD'er is unaware of.

I check out all woman indiscriminately, no matter what the age. FTD has made me mixture of hypersexuality, no filter - causing inappropriate remarks and apathy - not caring at the time I make those remarks. People write to me about there loved ones that aren't aware like I am and how lucky I am. I'd be a lot luckier if I was dead.

Problems with my neighbors continue with me being the neighborhood nut. Haven't been in a fight since I was 13, have almost come to blows multiple times in as many months. Requested from the management that I switch apt. They said no. Came home to find SWAT in my two story building. The police are always around. Took away one problem neighbor below me for 1st degree attempted murder, kidnapping, assault + many other charges. Police interviewed me for an hour. Heard he's facing life in prison. Guess my apt. community is nice if your into crack and crazies. The online reviews call it the "Scottsdale Slums." What can I do, I'm trying to live and stay alive. Pain is constant with frequent continuous headaches and severe arthritis. Have stomach issues because I constantly eat what's ever laying around. Don't leave the house much because I'm me and find myself in a life and death battle with FTD's No. 1 enemy, depression.

Terri and I split up. Its obvious that I'm declining was getting to rough. I downgraded us to friends. No one can ever find a more loving, caring and loyal person to be with. Neither of us expected my health decline to speed up like it has. I'm not selfish enough to put her through FTD hell. We did have spectacular times while it lasted. I'm constantly having issues with swallowing/choking as well as recent balance issues that are getting worse. If I was a horse, I wouldn't be typing right now :-)

I live on the 2nd floor and balance issues are causing it to become extremely hazardous going up and down the stairs. This has been happening for a while but realization that I might get hurt is a very scary and real fear. If I get hurt, I'm finished. Have not one contact of person to call. When I was with Peter last week I almost got run over because I couldn't manage to get up on the vehicle we were getting on. It almost backed over me thinking I was inside. Screams saved me. Don't know how to describe the feel in of having restless leg syndrome from head to toe.

Think I mentioned earlier that I just signed a new lease :-) Yesterday I went back in and asked them out of it because of my health issue. They are going to let me know, but know about FTD and that I'm pretty sick. I'm thinking of moving to a different community where there are a different element of people. I can't deal with the criminal element, drugs etc. Only problem is my rent will go from $700 to $900. Can't afford to move and can't afford to stay. I'm very, very, very frugal with money and am in the negative each month. No reason to budget since I only have what I have and there is nowhere to cut back. Will never beg or ask friends for money. For me money is like musical chairs. When the music stops and there's no seats, game is over and I check out. Won't go homeless or assisted living route. Don't mind my FTD rant. Welcome to my world.

Happiness is overrated and I can't remember the last time I was really happy. Bill Witt and Peter Herzog gave me wonderful reminders and glimpses of my life gone by. I've had a Life. A wonderful life. No regrets in life. I've 2 wonderful children I rarely see and still have the opportunity to continue on somehow and do work that will make a difference in peoples lives.

Somehow I'll try and keep carrying on. Will try and keep this blog going and return to filming for Howards Brain, the FTD documentary that I've close to 300 FTD hours filmed. Filmed 45 minutes a few weeks ago. First time I filmed in months. lol This is my first blog in months. Guess I've people out there, but have never felt so alone in all my life.
FTD causes behavioral issues that are devastating to FTD'ers and the loved ones around them. Depression and FTD go hand and hand. Many take anti-depressants, anti-anxiety, antipsychotics etc. to help level the playing field. I take none. From this you see my highs and lows. Functioning that permits me to write this blog, run my 2 support groups and do what I do. My life would be easier flat from mind dulling drugs and there's nothing wrong with chemical help to make an FTD'ers life easier. But that's not me. I don't do "easy". Never have, never will. 

Been sick a lot lately with my stomach. Just keep eating bad food. Made tuna at home. Don't know if mayo was bad, tuna left out etc. Was pretty sick. Of course it was in the fridge and ate it again days later. Same result, sick again. Often leave food out and eat it days later without paying attention. I know it's not good, but don't even think or care. Just hungry and it. Eat out mostly to try and keep from getting sick. Usually cheap mex etc. Glad I've FTD or I'd think I was losing my mind. 



We often hear those with FTD are unaware there's anything wrong with them. People around me still don't realize there's anything wrong with me most of the time. I think :-) Well, FTD has gone from lurking in the recesses of my mind with an invisible attack, to an all out frontal physical assault. Am hoping to bounce back. Almost didn't make it this morning, but an early email from the director of AFTD got me going. 

Routine, routine, routine. 7 days away. It's the only way I know to keep going. So hard now. Have been back at Starbucks for about a week now. Have also filmed 1.5 hrs for "Howard's Brain" documentary. Am going to fight like hell and return to my 7/7 - 7 days a week, 7am Starbucks routine. Will do my best to get back to consistent blogging, though I've no clue if..........

On another front, preliminary discussions are now under way for an FTD group home in the Phoenix area. Those with real interest in this please contact me at howardglickftd@gmail.com  I'm also going to be the guest speaker at the "Professional Association of Senior Referral Specialists" later this month and this will be one of the topics I will be discussing. 

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 with no caregiver. I'm not starving, but am in the minus everything month and cannot afford the medical help I need. For those that want to help, there is a yellow Donation button on right top of the page. You can choose a recurring donation each month of any amount, which I would be eternally grateful for. You can also mail to 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