Tuesday, October 14, 2014

Death Plateau

* 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

I'm lucky enough to have signed a book deal to help get my FTD story out. Am working with a ghostwriter whose meeting me every week and really has a unique way of having me disclose things I wouldn't or would barely write or discuss on film. It's also helpful to me because I rarely have human contact and just speaking to someone is helpful. He is recording all of our sessions and is making copies of my documents and will be contacting many of the people involved in my life. He has 5 other contracts and I'm lucky enough for him to do "I'm Aware, I'm Unaware" without getting paid up front. A NY Publisher will make sure he gets paid and my children will see future residuals. 

Feel like I've leveled off lately. Never really sure with FTD where your at. Last night I had such a bad headache I wanted to put my head in the microwave, but couldn't figure out how to close the door with my head in it. Pain killers knocked me out and here I am, better and chirpy at Starbucks. First time I've been back at Starbucks since my last blog weeks ago. Headaches are one of the unrecognized symptoms of FTD by the medical community. Most FTD'ers get then. Everyone tries something different to treat them and I've never heard of anything that makes them go away. I do have faith that someday, someone will figure out how to close that microwave door.

I used to write how I felt I was taking an FTD hit and then I'd rewire. These days it's adjusting and accepting to the new low plateau. How long will I plateau and have I actually plateaued? I've no idea. FTD marches on. I know I do feel better than weeks or months ago, but I'm definitely in worse shape. But what is bad shape and will FTD progression accelerate or give me a break and plateau. Eight months ago I was thinking of ending my life in October. Why? My psyche was being broken down by both physical and unseen progression. In the physical department, I started having swallowing/choking and balance issues. This on top of an already exhausting list of FTD revolving door symptoms. That led to deep depression and the walls of Babylon came tumbling down. So yes, I was thinking my time has come. Many with FTD want to die with dignity before we become living vegetables.. Don't want to be a burden to our families, friends or whatever we have left after driving everyone crazy for years and years. I know I have an extensive FTD enhanced Fuck Howard Glick club. Don't want to be peg fed, fully continent and left to rot alone in some facility. So the plan was for October. That course led me to decisions made that I now regret and cannot turn back.

October isn't it and I want to keep living though all of the above holds true. When is the right time and when will it be to late before I'll forget or not care about my death by living. This is a living hell we who have FTD and are aware go through. I don't know when my time is, but it's not now or anytime soon. Not fun living your life this way, but I've a purpose. To make sure whoever is reading this understands the hell that someone with FTD, there family and there friends go through. I do need to find some happiness in my life. Happiness doesn't just come knocking at your door, you've got to fight for it. Have joined a gym and have been doing 6 miles a day. At least that's getting me out and putting me around people, though actual contact with other humans is minimal. Some kind person donated money so I've new sneakers, insoles and socks. Am happy to say my feet are healing. Have sent the person a letter of thanks and I'm thanking her again now. Am also lucky to have a couple others helping me including Joe Becker, the filmmaker.  I'm forever appreciative for any and all help I get.



Here's my fridge. You can see I'm eating healthy with a diet of grapes and fruit. Bought the grapes on a raincheck at 75 cents a pound. The cashier said I had to many pounds so I told her i'd take out 1 grape at a time till I reached the allowed weight. I grab bags of fruit, who weighs. Also told her she'd be beautiful once her acne cleared and she got out of adolescence. That didn't go over to well.

As far as people in my life, will there just aren't. It's nice having web friends. but that's not distant and not real life. Being alone and a prisoner of your own mind with FTD just makes shifts to depression and mood faster with no one to lean on. My mind is like a ping pong ball with focus going back and forth all the time, yet sometimes it's a slow hit up in the air before landing and back to the other side or focus.

No question that we with FTD that are aware and aren't aware of our behaviors are as hopelessly lost as the caregivers and people that try to help us. Everyone involved in FTD world is lost. We with FTD say, do and write hurtful things. We tear everything apart. Many caregivers and family member see us as showing our true feelings while blurting out, saying or writing hurtful things. I've heard people say FTD is a the ultimate truth serum. Nothing is further from the truth. We go moment to moment and don't lie, just say what we're feeling at the moment and don't hold back and usually go way, way to far. Once we get on an FTD rant and roll, there's no stopping us. Then people think we're mean or can control what we say and we can't. Yet, others think there's absolutely nothing wrong with us. FTD is the ultimate cruel, bad joke. I'm a veteran of all these battles and have lost every time. Think that's the major difference between the suffering of caregivers and those with the disease. We never can rebound or have any life. Those with the disease will keep spiraling till we're dead. How do I get over the hurt I've inflicted on others? Apathy only goes so far. I'm lost in a disheveled mind and know it. I know I'm hopeless to do anything about it. I can no longer explain to anyone, nor do I wish to about my actions. I've come to terms and am at peace with the fact I cannot change how others perceive me and my behaviors. Tired of people making up what they think is logical answers to me and FTD. There is no logic when someone is losing there mind.

Well, did all testing for the swallowing issues, x-ray testing and found out I have reflux, got an expensive prescription a week ago which I'm confused about so still haven't taken it. Now I started speech therapy and she discovered my main swallowing issues are from FTD, not reflux. So now I need new testing, swallow test or Functional Esophagram test and a whole new schedule of therapy etc. The therapist did write out a list of rules or tips. She was very sweet. One of the tips are not to eat 2 hrs before sleep. Well, it'a after 10pm, I haven't eaten since yesterday so I'm about to go out for mexican takeout :-) Nothing in the fridge and slept all day, except for the 8am appt.

Feel like I'm back on the medical merry go round nightmare with constant docs, tests, therapists coming back into view.  Of course unlike my takeout food, all this medical care doesn't come with a menu. It's the good old bill after bill till your broke and dead routine. I've seen the movie before. Lost all my savings, investments and gone bankrupt from 6+ years of misdiagnosis. Now I'm back into the dilemma of returning to the medical care system of the United States of FTD or fuck this disease. I'm moving, rent is higher and I'm on the edge financially and really don't know what to do. I've zero debt and been as responsible as I can be. I don't have anywhere to cut back from. Still check my back 10-15 times a day :-) FTD is incurable, untreatable and unstoppable and the medical community has absolutely no morals in taking every penny you have for seen and unseen things.

The medical community is in it's infancy with FTD. Of course they rarely like to admit it and drive most crazy with diagnosis's and re-diagnsoses. Rare to hear the simple words, "I don't know." Most have huge ego's that need to give and answer and we as the starving desperate one's will do anything for hope. I've had enough where I don't have a neurologist or psychiatrist and won't be seeking one. No FDA approved meds, so I won't take anything except for heart etc. Won't be a gunea pig. Don't have the time or money to waste. If you have a cure, I'm first on line. Otherwise don't call me, I'll call you.

I'm moving on Saturday. That should be fun. Haven't done a thing, but it looks like I'm going to have help. Whatever happens, happens. 

I admit, being alone and facing this just keeps getting harder. Just will keep doing the best I can every day for as long as I can.

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. 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
2929 N 70 St apt 1053
Scottsdale, AZ 85251






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 howardglickftd@gmail.com to join.
Howard

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