Saturday, October 4, 2014

FTD Abuse and Awareness

* 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 to join.

The longest drive I do every 2-3 months is to get my haircut. This morning "MY" handicap spot was taken. How dare they. There car should be towed and compacted. Metered spots everywhere, but I can't figure out the meters anymore. I've 'my' spots in the few places I frequent and don't like to park anywhere else. Unlike Alzheimer's it's not that I forget where I park, it's that I don't pay attention to where I park. Even upon leaving the car and realizing I've this issue, I still cannot keep focused long enough to pay attention to where I park. Hey, I'm aware of his, therefore I park in my spots. Need to have stickers for Howard FTD designated parking. Hey, have wandered aimlessly for 1+ hr of time looking for my tiny green mini before. It's not fun. Yes, was just about to give up on the haircut and go home when I found another Handicap spot. Write now righting this I know my car is around the corner from the popular Interurban Clothing store. Only problem is I know the shops not called Interurban. It's blocks from the Starbucks from which my butt is currently placed. Okaaaaay.....Back to Carlyn's one chair barber shop. Carlyn saw me enter, looked up and said two words, "Urban Outfitters." LOL. Have to love FTD Swiss Cheese Memory.

Joined that $10 a month gym and am making good use of it. Seems like I've these urges to keep moving. Now going twice a day sometimes. I've heard of others with FTD walk/pace, but this one is new to me. Did 8 miles the other day. Not intentionally. Knew I was in a bit of trouble even a day or two before this, but just can't seem to stop. Used to run pre-FTD back in the day when I was whoever I was. Really feel like running on the treadmill, but have some semblance of sanity realizing the dichotomy between balance issues and running and walking. Funny, sitting here at Starbucks, I've an overwhelming urge to be moving. Routine, routine, routine. Gym goes into the slot and Starbucks has become sporadic. Need to get out of the house and try to stay out of my own mind. 

Showed the above picture to my group and got also sorts of comments. It's really not bad, I think. I did listen and went to running shop armed with my Amazon app. Need sneakers and socks. Right, maybe after the move. Need to let the dust settle and see what's what. Oh, I'm moving in 2 weeks. Between balance issues and the criminal element where I live, I've felt I've no choice but to move. I'm on the 2nd floor and having issues with the steps. Not horrible issues, but I'm falling :-) Where I live now, if I fall my neighbors will walk over the body and go rob my apartment. Almost tumbled backwards last week, so I guess I'm making the right decision. Am really lucky to have a wonderful woman, Valerie contact me and offer to move me for just about nothing. She's donating her services and having a moving company pack my stuff and move me a mile to my new safer, ground floor apt. I'd like to mention her company, but I don't even know the name of it :-) I'll update. There are some truly wonderful, wonderful people on this planet and I'm so grateful for any help that is offered to me.

Went for a swallow test the other day. X-rays etc of throat, stomach. Don't think my swallowing issues are getting more frequent, but severity is a different story. Actually had a painful choking experience where it went into my lungs and they felt on fire. Coughing, choking and it felt like it came out my nose. Not fun. I wake up sort of choking, drowning. Are we having fun yet? Anyway the tests complete and received a call from my doc. Not used to that. Normally you need to call and chase docs down for test results. I didn't even call......Unfortunately,  I can't figure out how to retrieve the message. Oh well, guess I need to be careful not choke to death before I call to get the results on Monday or Tues. Can't put the horse before the cart. 

FTD gets worse, plateaus........gets worse, plateaus.....We with the disease never know where we're at. I've taken a huge hit over the last month of so. Went through a really crazy stressful period and haven't recovered. Lot's of fun living and having less of you all time. I never really understand things happening around me. I'm sort of in a bit of a confused state where I look at one thing one way, then look at it totally different minutes later. Then I bounce back and forth. To me there both real. I find myself getting wound up in a heartbeat now. I am really good at living my FTD existence as me. Hey, I'll beat the crap out of 99% of the world when it comes to international politics.

This latest hit has had me scale back and I will not be participating in caregiver groups anymore. That or bare minimum at best or worse. If that makes sense. Left a group last week and received so many communications to return and people wanting me to return. Thank you all for your concern. I get wound up in an instant now. Get angry over seemingly nothing and revolve and dispute in my own mind. Constantly taking the topic or flavor of the day and make it nonsensical in the laundry dryer of my mind. I read one post or thread, follow it or decipher it one way, then shortly after another way. To me it's so clear at the time no matter how screwy it is. It's a good thing I'm losing my mind or I'd really be scared of being F'ed up. Can't follow or keep up. My reading comprehension and cognitive skills are way off now. Having trouble following voice to mouth on TV now. Certain newscasters I can't even watch. Can't keep up.  Of course all this translates to me keeping contact at minimal contact with the human race. Have decided to stay away from anyone who is not in the medical field or understands FTD in the way of any decisions or responsibilities to do with me. Anyone out there with FTD knows the constant frustration of well meaning friends and relatives that become incredible harmful and destructive because they just don't "get" FTD and like to pretend they do and know what you need. They get hurt because we're sick and they lash out because in harmful ways. All with FTD who are aware or unaware go through this. We're easy marks having dementia. I even had a sociopath relative pretend to be various people and tried to have me evicted from my apt and thrown out into the street. Also tried cut off all my services including my health insurance by pretending to be my Power of Attorney, months after I revoke and fired him from being my POA. He also got caught forging my name on documents. This with me having FTD and trying to arrange cancer surgery. My sibling kept telling me it was all in my head. lol Luckily I was victimized by someone who was as stupid as he is devious. Later came out he's a criminal and has been arrested multiple times for similar things and graced the newspapers more than once for his demented acts. The New York District Attorney's Office has an open felony investigation with multiple subpoenas having been sent out in relation to what he was doing to me. Tons of hard evidence and witnesses. Obviously it's not all in there heads. Have put up with abuse more than once now. Once intentional and once out of spite, malice and ignorance. As you can tell I'm boiling here thinking of doing a blog on with links to the newspaper articles and my first POA's arrests for pretending on the phone to be a US immigration officer and threatening he would come and deport her out of the country (sound familiar), sexually harassing a woman on and off over a 13 year period and $82k in bad checks. Never mind the 1 /2 years he was actively harassing me. Evidence has popped up he's once again active with me since I've moved to AZ. Could never get all my legal papers back, so he'll play. Obviously couldn't care less about being arrested multiple times or the effect on his own family. Maybe if he starts to feel the heat, he'll go back into his cave. Have FTD ranted enough. Wasn't intending to go this way, but so be it. Think I'll just hit the publish button.

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. 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 and will go to medications first:

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


  1. Love you Howard. Thank you for being yourself, whether it's the FTD Howard or the original Howard.

  2. I have FLD yet I don't seem to react the same as I should my memory is very good, I do get very angry when I get told often what I can or cannot do
    I lost my drivers License with in a week of the diagnosis that has made me depressed I have lost my freedom yet I can still go shopping alone it really does not make sence.

    1. Your not alone. Many of us with FTD are going through the same thing. I run an online support group on Facebook if you'd like to join. If your on Facebook, "friend" me and let me know you'd like to join the group. Otherwise email me at

    2. I also lost my drivers licence which I feel was not fair as I lost my freedom I have frontal-lobal only my memory is excellent.
      Last year I went into care to recover from the flu my daughter acatted me and searched my belongings that made me very angry but if you do become angry people think its the dementia which is a lot of rot, she has power off attourney over me but that was only in case I became very Ill so since last November she has all my money I cannot accsess it in any way I feel this is wrong she has threatened me with the Public Trustee's which makes me annoyed how dare she !!!
      I have asked or some of my own money to purchase some things that need up dating in our home she just will not allow it.
      To me she is abusing her powers, the last Nursing home I was put into I went into a dementia ward the Nurses realised I was in the wrong area and moved me to a respite room so I lost almost 9 weeks even Last Christmas so who is wrong IM sure it is not me.
      Thanks for your time

    3. So sorry for what your going through. Many of us have similar issues. If you'd like to join our FTD'er support group, others with the same issues can give you suggestions on how to make your life easier. Your not alone. You can email me at

  3. Still driving and Waze helps me remember where I parked. The only aspect of having bvFTD I have not yet gotten used to is not working but have one interview tomorrow and many applications pending. If anyone has trouble remembering where they parked, get Waze. Also tracks your speed against posted speeds.


Note: Only a member of this blog may post a comment.