Violence and FTD

STARBUCKS MAIL

Arrived 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.

Howard Glick

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.

Howard,

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

Program Coordinator

The Association for Frontotemporal Degeneration

msharp@theaftd.org

267-514-7222
866-507-7221

____________________________

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.

Howard Glick