Thursday, January 26, 2012
I spent 6+ years in medical hell being misdiagnosed as bipolar before being correctly diagnosed and treated for FTD.
Thank God life has gotten easier.
This week started out with a milestone on Monday with my blog crossing 10,000 guests.
On Tuesday I went to Columbia Presbyterian Hospital, was informed I’d had a heart attack, spent two hours in surgery having three stents installed.
Now it's Thursday morning and I'm back at my Starbucks office laughing with my buddies.
A friend just arrived at Starbucks, Maxine, who just read the above paragraph, gave me a hug and said out loud “God doesn’t like you”. I started hysterically laughing as well as all the people around me who heard what happened and pronounced, “No, God loves me and I’m still kicking ass and typing away at Starbucks”.
Just another week in the life of an FTD'er.
In the year since I’ve been diagnosed with FTD and found out my brain is liquifying, I’ve have cancer resulting in my prostate being removed and now heart disease resulting in a heart attack with 3 stents being placed.
Guess I’m supposed to be home with a mopey face in bed with a TV remote in hand having visitors saying how lucky I am to be alive and me nodding somberly in agreement. Yeah right, like that’s ever going to happen.
Brain, heart and penis. Three major organs all gone haywire. Now lets look at the end result.
Brain - FTD - In the 1+ year since being diagnosed, I have had many acts from selfless medical professionals and friends to help me back on my feet. Two neurologists, Dr. Kyra Blatt and Dr. Karen Bell of Columbia gave me both excellent advise and treatment. As anyone in FTD world knows, I bust my ass 24 hours a day trying to manage the symptoms of FTD and continue living a life that is slowly slipping from my grasp. It’s working and I’m living and loving life.
Cancer - 4 months after being informed of I had FTD, I learned I had prostate cancer. On April 1st (April fools day) I had my prostate removed. My Doctor, Dr. Ketan Bedani, the director of robotic surgery at Columbia, did the surgery. I’m a man, which entitles and classifies me as an idiot. Who cares about cancer, will my penis work? Four months after surgery I was back in the saddle :-)
Heart - Chest pains started in December. It took me a while to find an excellent cardiologist. I found Dr Merabb at Columbia. Dr. Merabb got me the treatment I needed and helped save my life.
Being alone with FTD, I once again couldn’t follow as circumstances were changing and didn’t realize the severity of the situation. I showed up at Columbia Presbyterian Hospital alone Tuesday at 6:30am to be treated. All the other patients were with someone. When asked who was with me, I told them I was alone. When prompted how I was getting home, I told them I’d take the bus. As usual this FTD’er was looked at cross-eyed, but so what. I didn’t think to tell anyone because it wasn’t a big deal.
20 minutes into the cardiac cauterization, the surgeon Dr. Weiss told me I had had a heart attack, had close to 100% blockage and need 3 stents. I was up through most of the procedure incessantly talking and non-stop chatting in both English and Hebrew to Dr. Weiss who was Israeli. Looking back, I’m surprised they didn’t gag me or knock me out. I was probably driving everyone crazy as usual.
Once the surgery was over, I thanked Dr. Weiss and his staff for saving my life. I was laughing and beaming in the recovery room. Brain disease, cancer and heart disease and I kicked all their asses.
My friends showed up at the hospital and continuously called, texted. and emailed in shock wanting to know why I didn’t tell anyone. I told them I didn’t realize how severe things were getting. My ex-partner Tamara contacted me and told me she putting extra money in my account so I would have healthy and decent food to eat. Tamara and I split up over a year ago and she is still the angel in my corner.
I might be screwing up moment by moment and day by day with FTD, but I’m smart enough to keep myself surrounded by the best and the brightest.
I do due diligence and always manage the best medical staff to treat the litany of challenges the Universe keeps hurling at my body.
Most of my doctors are affiliated with New York Presbyterian/Columbia University Medical center. I cannot say enough about the doctors and staff at that hospital. They come through time and time again.
Well, I’m sorry, NYC. This FTD’er is alive and kicking and not going anywhere. I’m on a mission to educate, further public awareness and help those with FTD. I’m literally going have to be peeled away from planet earth to be stopped.
Tuesday, January 17, 2012
Sometimes it’s so difficult writing knowing I might be alienating the few people around me that can tolerate and love me. I think as I write how the people in my life dwindle, but the truth of FTD must come out no matter what the cost. A couple of months ago I wrote about a professor I used to speak to daily at Starbucks. He is close with someone whose wife has FTD. I used to openly talk about FTD and my symptoms. He talked about how her symptoms were similar to mine and how she cascaded into a rapid decline. He had no idea how much that effected me. This was a man who I liked and respected. I wrote about the incident without using his name or describing him. I haven't seen him in months and feel terrible about it.
It’s a terrible feeling slowly losing your mind and actually knowing your life is slowly slipping away. I don’t feel it slipping away moment by moment or day by day. I still am grasping for a life that no longer exists. It's hard to keep putting up with continual loss. I try to be productive each day, but things keep falling through the cracks.
One of the cruel things of FTD is it is deceptive to the one that has it and those loved ones around you. One of the symptoms of FTD is failing hygiene. Me, I’ve always taken at least 2 showers a day since I was in the Israeli Army 25+ years ago. My hygiene has always been impeccable. I've never worried about it, that is till now.
A close friend of mine told me she noticed I haven’t changed my jeans in weeks. I immediately answered that I have a few pairs of the same Levis which is true, but I was covering up. There it was, I was busted. Yes, I do my wash every Saturday but I’ve been wearing the same jeans for a while now. Washing them on Saturday’s but I’ve noticed that I’ve been washing just one pair of jeans for a while now. I just never thought twice about it, till now.
I normally bush and floss my teeth twice a day. I’ve done that forever. Now I’ve come to the realization that I’ve been flossing and brushing once a day, sometimes two but mostly one.
Well it’s another battle to fight. Of course I’ll get right on top of this. I’m glad I know what’s going on so I can institute change. It’s not always going to be this way. Sooner or later I won’t realize or care what’s going on.
I don’t know if anyone realizes how difficult it is to fight an unseen, unknown enemy that happens to be taking over your mind. FTD is slowly driving you crazy and killing you while destroying your whole life and turning your friends and relatives lives into a living hell. I’m in a constant losing battle. FTD is an unstoppable, untreatable, incurable disease. There are drugs that will numb me to being touch with myself and probably make my behavior and my life easier, but I choose to fight like hell every day and to cling onto a life that is going away,
Sooner or later very little will matter to me, but be more difficult for the people around me.
Right now the important thing is to put on a fresh pair of pants every day and brush & floss twice a day. It’s has to be regimented or I’ll fall of the mark again.
Such is the day to day battle with FTD. Next............
Friday, January 13, 2012
I just want to say I'm thrilled with how the Facebook FTD Patient Support Group is working out. It now has 30 members and is always active. I'm starting a live chat schedule next week, but the members beat me to it and have already started using the chat feature.
If there is someone new needing instructions to join the invitation only group please scroll down couple of articles to the one called, "FTD Patient Support Group" or email me at firstname.lastname@example.org
The filming is going well with an estimated 60-70 hours shot. The filmmaker, Joe Becker of Thinkfilm Inc. has experience shooting people with FTD. Joe made the successful FTD short film, "It is What it is". That film shows four families and discusses what FTD does to families. It is gut wrenching. Joe is a seasoned filmmaker whose credits include the TV hit show "West Wing".
Joe Becker sees my whole world.
The film being made about me has a yet to be revealed name and will be a full length documentary. There is now interest from a major studio who contacted Joe about wanting to see footage and have a meeting to discuss a full length film. So far people that have seen parts have said the film takes you from laughing out loud to tears running down your face. I've been told because I have no inhibitions (FTD) I'm great to film. I'll say anything at anytime to anyone. If I didn't live in New York I'd be in jail, institution or drugged up like most other FTD'ers. I'm totally honest and have zero tolerance for BS. I'll say what's on my mind which either has people around me hysterically laughing or chasing me down the block wanting to kill me. I never ever get into physical attractions, but am constantly saying or doing inappropriate things and need to talk myself out of situations. I say hurtful things unintentionally and can reel for up to days after when I realize how much I hurt someone.
Joe sees me crying in the middle of the night worrying about being on the streets because I don't have enough money to sustain myself. He hears how I'm slowly get squeezed and choked by society. How my social worker promised me a rent freeze because of my terminal illness only two have my application denied, then the appeal rejected and finally a lawyer from NYC telling me I'd be getting more help if I was a substance abuser or alcoholic. Joe has been with me through my frustration of how my food stamps went from $2.03 a day to $1.45.
Finally a couple of weeks ago on my birthday December 24th I received a letter from NYC stating my food stamps are now reduced to $0.63 a day. I can appeal it by a sending in paperwork and then go to a hearing in Brooklyn.
Joe also follows my triumphs how my blog has received international attention, how I've helped others with dementia in my community and am receiving media attention for projects I've created. Of course the film covers the horror history of me being misdiagnosed for 6+ years. FTD taking from me just about everything life has to offer.
I'm not sure if the film will be a triumphant story of me facing life with FTD and overcoming obstacles or end in tragedy.
I just heard from my lawyer that my private Long Term Disability insurance company has refused to reinstate my disability. Dementia and FTD is covered.
This is a huge blow to me.The stress on me now is unimaginable. I will write about this after I meet with my lawyer next week.
This is a huge blow to me.The stress on me now is unimaginable. I will write about this after I meet with my lawyer next week.
Monday, January 9, 2012
STARBUCKS MAILArrived at Starbucks last week morning and was informed by the manager that I had received mail and it was highly unusual for customers to receive mail at the stores. It was addressed to Howard Glick (customer) at the Starbucks I go to on 181st and Ft. Washington Avenue. I told the manager I would open it up outside in case it blew up. I went outside to film the opening and not to endanger the cast of characters and crew of Starbucks. I'm still here and sure enough it was a letter from someone in Texas that I've never heard of.
The letter stated that my blog was helping him. He has FTD and PPA. He enclosed $50 cash and suggested I set up Paypal so people could send me money. He wrote a very nice and touching letter. I cried on film. I'm such a woos. You guys know me and I don't like charity, but it was an extremely kind gesture. I've been receiving Starbucks gift cards and gift cards regularly. I've thanked everyone. I'm deeply touched by everyone who has reached out to me saying I'm inspiring them or helping them understand and deal with loved ones.
The gentleman who just sent me $50, sent it in cash and it was appreciated. I added it to my Starbucks card. I've received many requests for an address to send things to and some suggest I set up a foundation, but I've no idea what I'm doing so that's out. I'm going to give out my home address because I'm scared gifts will go to the wrong place.
620 Fort Washington Ave. Apt. 6F
New York, NY 10040
VIOLENCE AND FTD
There are many misconceptions about violence and FTD. I've never had a disposition towards violence, but have been terrified at the possibility of becoming violent.
While incorrectly diagnosed as bipolar, for 6+ years I was on 21 different medications and up to 17 pills a day. I routinely broke cellphones in half and through them out the window of cars. I would throw things and break things. Cursing and yelling were part of the repertoire as well. This was done mostly out of frustration. Why was I frustrated? I was sick, my personality was changing. I was in a medically induced fog and didn't know what was going on. The doctors did the best they could treating me with pharmaceuticals and turning me into a zombie.
When diagnosed with FTD I was taken off all the meds and besides being straight for the first time in 6 years, I now had the challenge of learning the new FTD turbo-boosted personality of Howard Glick. Howard Glick FTD was enhanced with a loud personality, incessant talking or non-stop chatter and would always just talk about me and never let another person get a word in. Constant inappropriate statements and sexual comments/jokes were the norm. People around me were either hysterically laughing or chasing me down the block wishing to do me bodily harm. My friends nicknamed me BS man because I was now 99% straight talk and won't take any BS from anyone. I constantly find myself in confrontations but have the innate ability not only to talk myself out of any situation, but become friendly with the other combatant.
I used to be petrified about becoming violent especially after reading story after story in all the forums and groups I belong to.
I quickly learned that there's not one FDA approved medication for FTD. Doctors just tried managing symptoms and behavioral issues by experimenting with all types of combinations of medications hoping something would work. Strong antipsychotic, antidepressant, anti anxiety medications are used in conjunction with behavior management are the medically accepted norm, but not the Howard Glick FTD route. This trial and error sometimes works, but often causes chaos for both FTD patients and caregivers before finding a temporary bandaid. Since FTD is a progressive disease and continual brain changes are a given, constant change of medication and behavioral control tactics need to be applied.
The trick was now to learn how to mange the symptoms before I wound up in jail or institutionalized. There was no way I was going back to being a lab rat trying pharmaceutical cocktails that no one knew would work.
I decided to take on my behavioral issues with proper rest, meditation, diet and constant monitoring of myself by me and by my friends. People at Starbucks and my lifelong friends are quick to point out when I'm getting tired or getting out of control.
Every single day there are behavioral issues, fortunately I am in New York City where my behavior is not just tolerated, but normal. If I was in Iowa of Vermont I'd be incarcerated or institutionalized real fast.
Violence and FTD constantly comes up on numerous forums/groups etc. and I have never read a clear cut factual answer. I took this question to the Helpline at AFTD who has the best resources and most experienced medical staff in the world and here is the answer I received.
Below is as thorough an answer to your question as I have been able to come up with, thanks to help from Sharon and the guidance of members of our medical advisory committee.
Please feel free to pass it along to the person who originally posed the question.
I hope you are well and happy new year.
There is no research published on predicting the likelihood of violence in people with FTD. According to the doctors we contacted, verbal and physical aggression can occur in any neurodegenerative disease, but there is also no reliable way to guess the probability of what someone’s future symptoms or behaviors will be.
There are things a patient and/or family can do to address the issue if someone starts to have trouble with increased agitation or behavioral outbursts. Because FTD makes it harder for a person to control his/her own behavior, other help may be needed to reduce the chance of things getting bad unexpectedly.
If the person has family or friends around, behavior techniques (caregivers changing their behavior) can help to redirect attention and diffuse rather than add to the problem. There are also medications that can be used by a knowledgeable doctor to reduce the symptoms. Often behavior techniques and medications are used together.
If agitation or outbursts are a problem, the person should address it with the doctor and family/friends so they can stay as active and involved with others as possible.
Matthew F. Sharp, M.S.S
The Association for Frontotemporal Degeneration
Life with FTD goes on with each new day being the ultimate adventure. I don't take a moment for granted making the most of every day with FTD. I look forward to living life and not obsessing about illness or death.
Birth is a terminal illness, FTD is simply another obstacle in life to be overcome.