Half hour later in the upper scale, upper east side we watched an upper class. well groomed gentleman threw a plastic bag on the sidewalk. I shouted out the car window, "pig". Howard and I had the discussion of me not saying something to everyone about everything. We should've been discussing can I control it and is it even important to me. So, am I aware and can I shut up. Yes, I am aware that I say whatever is on my mind in any given moment. I don't shut up and am aware that it's Howard Glick FTD. I'm aware that I'm unaware of what I'm exactly saying as I'm saying it, but I'm aware my mouth is ramped up and I'm talking when I should be silent. I know I shouldn't be saying something, but I don't care.
I try to measure the amount of energy I put on controlling what I'm saying. If I monitor myself all the time, I put myself in a perpetual state of exhaustion. Meds just put you in a cloud and once you start on that your mind will slip faster and your quality of life will slip. Some do need the relief of meds or need to be controlled by meds. For me, my path is taking FTD head on with my relief coming from mindset.
There are many stages of FTD and each person and caregiver has different ways of dealing with it. I went through the cursing stage for years. Now it has mellowed. I've worked very hard on minimizing the amount of cursing and I've had help. About a year ago I cursed in front of my ex-girlfriends child and her response to me was quick and furious. I remember it like it was yesterday. Since then I have worked hard at knowing when I'm cursing, especially around children. Did it curtail overnight. No, it's taken a while, but It's nominal compared to what it was. I took my girlfriends "quick retort" everywhere with me and she is always in my FTD mind reminding me to keep it together.
Sexual inappropriateness is another fun FTD stage which is rough and wearing on caregivers. I've been going through it for a couple of years now, but it's subsided compared to what it used to be. Funny, I'm sitting here at Starbucks checking every woman out. That probably puts me in the same arena with 99% of the dysfunctional male population. What makes an FTD'er different is we just don't glance. We make remarks and some people actually touch people. Hypersexuality is common. It's crazy that progressive neurological disease can give a 54 year old a libido of a 15 year old. I was once laying down with my girlfriend and she was discussing something particularly painful in her life. At one point she stopped and said, "Are you hitting on me". I didn't even realize I started fondling her and wasn't even paying attention to what she was saying. I told her I was making a pass at her and didn't even realize it. She was hurt, but lucky for me she gets FTD.
It was common for me to tell a woman on the street what great tits she had or make a pass at anyone I spoke to for more than a minute. My friends used to say something harsh and I would stop, but not really care. At night, everything I did and say would catch up with me and I's lay in bed crying. I found when I was with someone who knew me my behavior was better than when I was alone. The same holds true with all behavioral aspects of FTD. When I'm alone I easily get out of control without realizing it and when with someone I know I'm more aware and in control. Especially if the person I'm with makes me aware with a harsh tone. Sort of sinks in for a while. So, what does it mean that the sexual inappropriate stage has somewhat subsided. It means I'm not totally out of control as I used to be. I'm still unaware when I'm saying things, but I'm saying sexual remarks every day in the way of compliments of jokes. (Still at Starbucks and my doctor just walked in and said hello. She is very attractive, wearing shorts but I don't look at her in a sexual way or think about her in a sexual way. I don't, never have and in control. I never check with children or nuns of touch anyone. We are broken, but many of us stay on the edge of keeping it together). We're not different than anyone else on this planet. People with FTD are sick, but each person and case is different. Where I can make it without meds, plenty need them to stay in control or feel better about there life. Quite often caregivers need to give there loved ones strong drugs like seroquel etc. There is only only so much a caregiver can take and when there safety, sanity or there FTD loved ones safety is an issue, then you have to do what you have to due. The problem is how much do you dull the brain and will that make the person with FTD fade even faster and lose his or her sense of self.
I still make comments how great someone's butt. breasts, arms or calves are. The difference is it's never as ugly as it's used to. Maybe it's how I'm saying it now. It can be that I'm also sitting here deluding myself, making a bad situation tolerable. It's also where you live that makes a big difference. I live in NYC where I can say just about anything without anyone blinking an eye. If I were Iowa or Southern England, I'd probably be institutionalized or drugged up. I've also never touched anyone, nor will I ever touch anyone. I will also never get violent.
Writing to me is the same thing as blabbering with my mouth. I write freely without a filter and I don't care. I've been thrown out of Forums and groups. Some ask me to try and filter myself or they will filter me. If FTD groups can't deal with FTD members than they shouldn't say the group welcomes FTD patients. Yes, I'm sensitive to the fact that caregivers go through hell taking care of FTDers. But you can't tell someone with FTD they have to be normal. There is no on/off switch. Yes, I use strange FTD humor as levity and I might be a bit insensitive because I write, don't think. When someone says they are going to freely modify my posts or responses like they do there husbands, I want to tell them to F(ftd)Off. Sorry, my words are my words and I work to hard evaluating my feelings and actions to let someone flippantly change them. I read plenty of posts about extreme violence and medicine/chemical abuse. They are extremely disturbing and graphic. People with FTD do not need to read and get disturbed by these. I remember being sent into a tizzy thinking I was going to get violent because I had FTD. I was reading caregiver strings which like FTD'er strings need to be carefully evaluated. I did my research through AFTD and other qualified research centers and found there is absolutely no evidence that someone with FTD will turn violent. FTD patients and caregivers need to be tolerant and give each other leeway. Sometimes it is better that the paths of support for patients and caregivers stay separate. I will continue to try and bridge that gap, but now have people from certain groups write me directly in situations that need in depth answers. This way I maximize my time and don't need to worry about offending someone or more often someone worrying about me possibly offending someone.
My former partner and caregiver used to say she used to have to take care of me almost like I was a child. I was on up to 17 pills a day being misdiagnosed as bipolar and didn't even have a chance of controlling myself. It's my belief is that the inner strength we have as people helps us control things to a point. Each person is different with FTD and how they weather adverse conditions. Much of it is flat out desire, mindset and determination to make the most of life and not give up. My reality is I lost my family, career, friends, money and comforts of life. I can never work again as my life slowly slips away. 2 years ago I was told I had FTD and I needed to make my "end of life" plans.
Well it ain't over yet and I've rebuilt. Giving up isn't in my vocabulary. In the last year I've started and maintained a successful blog which is about to pass 25,000 visits whatever that means, filmed 130+ hours in Howard's Brain, a documentary film on me living life with FTD which will be put together by the brilliant filmmaker Joe Becker and started the first FTD Patient Support Group which has 48 members. I also have a girlfriend I love very much who puts up with me and my FTD ways. 8 years ago I was making $100k+ and had a wonderful normal life. Now I have a very self gratifying life and know in my heart I've made a difference in many lives. There can be no greater calling.
Is my life now fun and peachy. I don't know. In the last month I've lost my Food Stamps, Medicaid and my case against Unum is on life support. My health is slowly declining and I'm living off the charity of others. Of course I worry what if the help goes away and I can no longer afford to exist. Checkmate. Yes, I say checkmate in justifiable panic, but guess what? I'll find a way and keep going till there's nothing left and they peel me out of my Manhattan apt.
Thank you all that support me and help give me the determination to get up every morning and try and make a difference.