Tuesday, July 31, 2012

Inappropriate Behavior. Who cares? I don't or do I?

Was cruising the aisles at Trader Joe's yesterday and happened upon a refreshing clerk stocking the shelf. Of course I gave her a big "hi" and she responded with a brilliant smile. I told her how I haven't seen her in a year or so and how great she looked. She lost weight, looked fit and had an overall aura of happiness. She thanked me and reciprocated with a compliment. I asked how life was treating her etc. We talked for about a minute and caught up on each others lives while laughing quite a bit. I was not making a pass at her, just saying what came into my head. My friend Howard was right next to me. He was embarrassed at my FTDish behavior. and ushered me on. Of course Howard knew that this was the first time I've ever laid eyes on the Trader Joe's worker. Howard always tells me I need to control myself and I always tell him, "it's not me, it's FTD".

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.

Friday, July 27, 2012

Get Out The F Door

It's 6:10am  and I'm safely seated at McBucks 181 with my ice coffee in hand. It's sort of nice being the only one here besides the workers. It's Howard's time. This is the highest level functioning hours of the day. Getting to this point and into my seat is no easy feat.

I've been up since 1:30am having slept about two and a half hours. The melatonin just isn't working. Had cheerios at 5am and then watched Romney make an ass of himself insulting the British.

Then it hit's. I'm exhausted. Okay, do I stay home and rest and maybe try to catch a couple of Zzzz's or do I get my ass in gear and "get out the Fucking door" (GOTFD). Every FTD molecule in me has me laying there not moving and trying to shut down and not think. There's this FTD haze that we go into where we can just do nothing and not think about. This can go on and on until we let FTD's number one enemy enter the picture. That would be that pesky parasite called depression. Depression can take over your body and soul. For me it's not a matter of fighting off depression, as it is letting it in. It is banned.

GOTFD I shout to myself and I'm out of there leaving that pesky parasite in the dust.

Next, get something done. I need a sense of accomplishment each day. I have that burning desire in me to get something done. Blog, film, post, mail etc. It doesn't matter what. I cannot go home without getting something done and feeling great about myself. No, not good about myself, great about myself. Life is tough with FTD and doing okay doesn't work for me. I need to excel and excel I will. There is no choice, there is no failure. Mindset is everything. Every day I will battle pesky parasites, unawareness, inappropriate behavior and memory loss. That's just internal, never mind the world. Every day I will win.

Most days I get home exhausted between 11am and 1pm. I get home and there's no guarantee I'll get out of the house till the next day. One thing is for sure. Another day has gone by and I'm woking my ass off to stay highly functional with FTD. I will never get complacent and let that pesky parasite depression in.

It's now 7:21 and I have this blog done. I've kicked ass and told FTD to F(ftd)off. Hope this helps someone out there.


Wednesday, July 25, 2012

FTD and Cooking Fires

Last week I awoke mid-day to the smell of burning paper. No smoke, just a faint smell. Something was amiss.  I went to the kitchen to find my window fan on high and my friend Barbara, who was there earlier gone. I texted her asking if there was a fire. She replied that I had the God's Love We Deliver" meal in the oven and had the wrong setting on and the cardboard top burned. I wrote back "Oops".

Barbara of course was worried I would start a fire. I wrote back my fire prevention strategy. I told her that when I cook the oven timer is on and the oven goes off after a while. I also have a timer on my cell phone I use all the time. The problem isn't forgetting things as much as getting distracted. I get distracted so easily. If a timer goes off and I'm typing or doing something, poof-it's gone.

Like everyone with FTD/dementia, I try to develop a fail-safe end game strategy that works. I have a smoke detector which is not attached to the wall which is movable. When I'm cooking I place it on the kitchen table in my small kitchen. I then close the door tight so if my food accidentally starts to burn the small room quickly fills with oven smoke. In case all my strategies fail and my food starts to burn, my smoke alarm turns into an ear piercing get your ass in gear timer. 

When I cook a steak or hamburger, the smoke detector is my timer.

The screaming piercing wailing of the smoke detector timer has me in the smoke filled kitchen in an instant. I quickly shut the oven off and remove the screaming smoke detector from the kitchen and place it in the living room where it goes off fairly quickly. I'm then back in the kitchen opening the windows and turning on the venting fan. I keep the door closed so the smoke stays contained to the kitchen. I then check my precious meal which is always still edible. 

Food prepared and life goes on. 

To me, this is business as usual. FTD in action. To Barbara, she was hysterical laughing/horrified that I was using my smoke detector as a food timer. 

I explained to her it was all contained and just smokey, never a flame fire. She looked at me cross-eyed and told me we're going to Home Depot for a fire extinguisher just in case. 

I should start selling FTD certified smoke detectors.

Life as an FTD'er.


Monday, July 2, 2012

Intellectual Love

Love is different with FTD.

I can actually say I love with all my brain.

That’s some statement coming from someone losing his mind to a degenerative disease.

Spent 6 days in Seattle. It was my daughters HS Graduation and I wasn’t going to miss it, even if it meant hitchhiking cross-country. I missed my son’s Bar Mitzvah synagogue service (no money for a party) last year, which I dearly regret. 

It was wonderful to see my children and my lifelong friend Marc.  It was a tough trip. I won’t pretend differently.  I’ve been back over a week and I’m still not back into the groove of life with FTD. Being there also made me realize how much I love and cherish my children and my void of rarely being able to see them living on the other coast in perilous financial state with FTD. 

The old feeling of love is gone with FTD. In fact, I don’t even remember it, but can sort of imagine it by seeing it in others. The emotion and feeling isn’t there, but it’s replaced by what I can call intellectual love. Really seeing who and what my children are and what remarkable people they’ve become. 

Chelsea is 18 and has become a young woman. She exuberates incredible confidence in herself and incredible determination to map out her college experience as well as her future. She has also become fiscally responsible working after school each day and saving some money. Chelsea showed her maturity and responsibility by picking a state school (Washington State) to go to over her preferred more expensive school. I see exactly whom she is and I’m not clouded by emotion. In fact, a lot of emotion around me makes me uncomfortable.

I love both my children more than ever, but have to put on disguise to show it. I could easily be emotionless and have been confronted by people hurt for my lack of showing I care. I care, I just need to force myself to show the emotion of caring. I’m very adept now at finding the inner beauty of people and not just seeing a shell. I see a person and notice all the things that make them who they are. I force myself to be aware their actions. Love for children, their humanity, work ethic and selfless acts for others.  I can develop an incredible respect and love for people. 

On the other side I have zero tolerance for people who aren’t straight with me or cross me. Certain people who I once cared for dearly I can drop in heartbeat without a second thought and then never think of them again.

I have trouble following facial expressions and people’s mannerisms (sarcasm), yet I know when someone is being authentic or unauthentic.

Guess you know whom I’m not backing in the Presidential race.

If someone is questionable, they’re toast in my FTD world. This isn’t the Howard Glick of the past. I’m rigid and intolerant. Someone told me they like how straight up I am and feel I’m more evolved seeing things with less or no emotion. Trust me, there’s no fun in being like a Vulcan on planet earth.  You wouldn’t want to trade places with me and the revolving door of strange FTD symptoms.

“Gods Love We Deliver” just brought my food delivery. That means I’m no longer captive in my apartment. I wish it was that simple. I literally have to force-feed myself motivation these days. Since the McBucks debacle, I still haven’t recovered and gotten back into a routine.  I’ll save that for the next blog. Hey, at least I’m writing and being productive. 

Chelsea's graduation was an experience. There were 4,000 people there and much noise and excitement. I didn't feel it even though I pretended. It was overwhelming and there was nothing I could do to shut them all up. My ex-wife kept clapping loudly next to me and I wanted to deck her. I struggled sitting there trying to be happy while my skin was crawling. Thank the Universe my son was next to me which kept me focused on the important things in life and distracted from these unwanted thousands that showed up at my daughters graduation. I was incredibly proud of her and her accomplishments. Chelsea was beaming and I couldn’t take my eyes off of her living her moment. The most surprising moment for me of the evening was seeing my ex-in laws for the first in 10+ years. Like most ex-in-laws we didn’t leave on the best of terms. The love they showed for their Granddaughter and the elation they had at the graduation had me awestruck. My hardcore insane in-laws were so in your face “real” that I kept glancing over at them in awe appreciating who they are. My son was sitting next to me with golden heart, so I was in heaven. To bad I couldn’t have gotten rid of the other 3,900+ people.

The highlight of my trip was going to meet Chelsea for dinner on the last night of the trip. We never did have dinner. Chelsea had a flat tire. We sat by the road for about 2 hours waiting for help and to be fixed. Those 2 hours were the best 2 hours of my entire trip. We sat and just talked. Father and Daughter. Chelsea and Howard.

There was much more to the trip………………

Complete Forbes FTD Patient Interview Series
This is the complete Forbes patient interview series. This series of interviews was done by seasoned journalist Alice Walton. Alice attended the AFTD conference in Atlanta, has spoken to some of the nations most prominent FTD specializing neurologists and met 4 of the 5 FTD patients she interviewed. Alice has a Phd in English, Biopsychology and Neuroscience after studying at Vassar and CUNY. This was the first series of FTD patient interviews ever published. 

Howard Glick - The Other Side of Frontotemporal Degeneration: Inside A Deteriorating Brain                                         

Diana – The Disease That Stole My Career: Inside The Mind Of Frontotemporal Degeneration