Wednesday, September 28, 2011

FTD - I'm Not Dead Yet!

For those or you new to my blog, the previous article,"The Pain of Being Misdiagnosed" was about how I got sick and was misdiagnosed for 6/1/2 years as bipolar. It described the horrors of everything from being kept in a medically induced fog, to be given twice the normal amount of ECT's 50+ (shock therapy), to having a surgically placed experimental device in my chest VNS Vagus Nerve Stimulator. It also discussed the day to day nightmare that tore apart my soulmate and caregiver until we finally separated. After a tragic incident a year ago, I was hospitalized for 6 weeks where they discovered I had a rare neurological disease called FTD/Frontotemporal Degeneration.
If you haven't read the the previous article, " The Pain of being Misdiagnosed" you should.

In June 2010 the Psychiatrist at NY Cornell Hospital decided to put me on Aricept after it was discovered I had FTD/Frontotemporal Degeneration. The Psychiatrist should have checked with a neurologist. Aricept is used for Alzheimer's type dementia and it is well documented that there can be adverse reactions if given to someone with FTD. Doctors mistakenly give Aricept to people with FTD because it is a form of dementia. FTD and Alzheimer's both fall into the category of Dementia's but where Alzheimer's effects memory, FTD does not, at least until the later stages.

Please remember, not everyone has adverse reactions to Aricept. If a person has been taking Aricept for an extended amount of time, there is less of a chance of an adverse reaction. If there is any question that it might be having a negative impact on your love one, don't panic but contact your neurologist.

Paradoxical Reaction
I left the Hospital and went home knowing I had this rare form of Dementia and that my life was forever changed. It was still feeling the effects of the pharmaceutical cocktails I was kept in a medically induced fog on for years. I was feeling clearer but was having strange issues with my behavior (nothing violent or crazy, just stranger than normal). Just FTDi-sh. There were also these strange episodes:

I was getting very confused and disoriented on a consistent basis. There was absolutely no pattern but I would seem to have these episodes that would last minutes to hours.The handyman found me out in the street and took me home. I would get on the subway and not be sure where I was and ride the subways for hours. I could easily stare at wall in a daze from minutes to hours. There were plenty of times people would talk to me and I couldn't understand a word they were saying. It was like they were talking Martian. I would stare at them with a blank look on my face. I would also could not tell which way traffic was moving and New York Taxi Cab drivers will aim for you if you step into the middle of the street.

It was dangerous and I was getting worse. 

I also started looking up Picks disease/Frontotemporal Degeneration on the web. Everything was devastating.  I was consistently reading people with Frontotemporal disorders typically live  only 6-8 years. This was consistent with The Mayo clinic, The NY Times, The US Department of Health and Human Services etc. 

I had the disease since 2004. That means  I had FTD for 6 years. I was totally disoriented a good deal of the time and it was getting worse. The message was very clear: 

Howard Glick was about to die. 

Finally I found a wonderful community neurologist in September who specialized in Dementia. Dr. Kyra Blatt had an office only a few blocks from where I lived. My lifelong friend David used to take me there every other week.  Dr Blatt BANNED from reading anything else on FTD on internet.  I was obsessed with the fact that I was near death and who could blame me.

Dr. Blatt contacted the Neurology Department at Columbia University Medical Center and confirmed  that I was having a Paradoxical Reaction to Aricept and immediately took me off it. It took what was probably months for the horrible side effects of Aricept to wear off.

I went through four months of having a terrible Paradoxical reaction to Aricept and mixed with the negligent life expectancy statistics written in well known medical periodicals and newspapers I thought death was imminent.

Outlook (Prognosis)

The disorder quickly and steadily becomes worse. Patients become totally disabled early in the course of the disease.
Commonly, Pick's disease causes death within 2 - 10 years, usually from infection and sometimes from general failure of the body systems.


U.S. Department of Health and Human Services
          National Institutes of Health

"People with Frontotemporal Disorder typically live 6 to 8 years with their conditions, sometimes longer, sometimes less."

September 2010

It has now been 14 months since I left NY Hospital and I am doing everything possible to keep my health stable and possibly slow the progression of FTD. I am constantly using brain exercising techniques such as strategic thinking as well nutrition, meditation, supplements, exercise, mindset, and many, many other changes in my life to control the symptoms of FTD. Since I went off the medication Aricept I have been taking Namenda. 

All I know is it is a constant battle and I am doing great. Each month I am feeling better and stronger. I am in a constant struggle to keep the symptoms of FTD under control and though life is difficult, I once again have found a sense of happiness and purpose in my life. 

Sharon Denny - Program Director of AFTD - The Association for Frontotemporal Degeneration- Sharon Denny came to New York to visit me a couple of weeks ago. She told me that because it is a rare disease and there is new data all the time it a has been discovered that people are living up to 20+ years with FTD.

Association for Frontotemporal Degeneration
Management and Prognosis

Although specific symptoms may vary from patient to patient, FTD is marked by an inevitable progressive deterioration in functioning. The length of progression varies, from 2 to over 20 years with a mean course of 8 years from the onset of symptoms. FTD itself is not life-threatening.

AFTD- September 2011

Now if I could only find a partner who wants to share a wonderful life that isn't petrified of the letters  FTD, life would  be perfect.

By the way, I'm not planning on going anywhere for a long, long time.

Sunday, September 18, 2011

FTD and The Pain of being Misdiagnosed

First some housekeeping. I know I am new to the world of blogging and so are many of the people visiting this blog. On the right hand side you will see a tab highlighted in blue that says, "Join This Site". If you click on it you can join confidentially or have your name and/or picture listed like some of the people that have already joined. By joining you will be sent an email when I write a new article and it is posted. I will be writing new articles weekly. I have also recently joined Facebook so you can join the blog through my Facebook page.

*There is a shortened version for smart phones and tablets. If you don't see, "Join This Site" scroll towards the bottom of the page and above my profile you will see a tab for "View Web Version". Click view web version and "Join This Site" will appear towards the top of the page.

Thank you,
Howard Glick

Now for some history of what being misdiagnosed was like for me and my ex-partner Tamara. It took   6 years for me to be diagnosed with FTD Frontotemporal Degeneration. We must spread the word and create a deeper public awareness so others do not suffer the same way.

This first section is for caregivers and family members that are having extreme difficulty taking care of someone with FTD/Dementia. You are doing an admirable thing and you are very much appreciated every moment of every day whether you realize or not. 
Tamara was helpless and so was I. I had absolutely no idea what was going on with my behavior. The doctors were saying it was depression and that escalated into a bipolar diagnosis. I was never depressed in my life. I had difficult times like anyone else but no depression. Nothing worked and everything kept spinning out of control. Life was on a continuous downhill spiral. I was no longer working and I loved to work. We rarely had intimate moments because I was so drugged up. I was a walking drugged up shell with nothing inside. 
Tamara already spent a good deal of her life being a caregiver to other relatives and it just wasn't fair to either of us. Now the person she loved turned was in a medically induced fog and out of control when the drugs wore off. As the drugs wore down or my body acclimated to the drugs I would have fits of anger and frustration.  I was hospitalized twice because of my depression. I was found wandering outside half naked. Tamara had to put her career on hold to take care me. There was always a doctors office or a test to be done. Her life was wrapped around being my caregiver and not my soulmate. All you caregivers out there know this all to well. A good deal of the time I tried to act like there was nothing wrong. I remember acting that way now and a good deal of the time I didn't realize there was something wrong, but my life was all wrong and I knew in my heart everything was wrong.I was miserable. I was taken care of like a child and I hated it. I broke many cell phones or would have fits of anger. Not at Tamara, just at the world in general. The doctors of course would then keep increasing my medications or trying new medications. 
As I've always said, I don't blame the doctors. The doctors were just doing the best they could do with the information at hand. On the flip side I know now that there were mistakes made but I'm not going to do the blame game. 
Nothing was flagrant or malicious and the fact that I'm sitting here writing this shows the table have turned with my health.  The medical community has come though and helped me to the point where I can function again. Every day is extremely rough with incredible challenges that just don’t stop, but I refuse to give up no matter how tough it gets. 
There is no question that I have had best people and help humanity has to offer helping me. l also have had an overwhelming desire to get back to a happy purposeful life again, no matter matter what obstacle was thrown in my path. To me it is called human spirit.
Tamara knew I wasn't bipolar from the beginning because of direct experience with a family member. She tried to get me to try alternative treatments but I wouldn't listen. I wasn't capable of listening because I was to sick and unaware of my real illness. All I wanted to do for years was sit at home and watch TV or drive around in circles. I kept going to the same restaurant day after day eating the same thing. I avoided people as much as I could and would not return calls to people that were worried about me.  I look back at those years now and I now see how scared I was. Here I was never unemployed a day in my life, living a really good life and now it had literally changed in a short period of time. Work, relationships, everything. People would call from work and I would never call them back. I didn't know what to tell them. They were also shocked how quickly this happened. FTD is cruel and vicious  I was driving everybody crazy with my behavior. I was frustrated, angry and extremely irritable most of the time. I broke countless cell phones in half and tossed them out my car window or into the trash. I was saying things to strangers all the time. I was cursing at people for no reason. I also couldn't find my way home half the time. I would be on the same block I lived on and still couldn't find my way home. The doctors kept trying new drugs and nothing was helping.
Yes, there were good times, but they were few and far between. I never had an easy life, but I had a good life. There were significant accomplishments in my life that I was proud of and I was never in trouble.
I read every day now about caregivers describing the person they are caring for not listening to them about there illness or taking any advice. It comes from being scared and not knowing what is going on. Let me repeat that. People with FTD cannot comprehend what is going on with us and our lives. All we know is we are stuck in a rut and it's almost like we want to wait it out. We are waiting and waiting and sinking and sinking. There is always a fear of being around loved ones or strangers and getting that strange look. We know everyone knows. 
I know when I’m with people they can tell somethings amiss. You have no idea how disconcerting that is.
We know my personality dramatically changed and we didn't understand why. Even when were told we have a brain disorder, it is still incomprehensible. All we know is we lose our jobs, our children look at us with fear and confusion. Family members can't wait to get us out of the house when we visit. Some or our friends look like they don't really want to be around us. There is one person stuck with us out of love and that is our partner. I didn't know I had FTD. I know and understand now all the pain Tamara went through moment by moment. Back then it was terrible and I also felt terrible about what was going on but I didn't understand it.
Now I understand what happened every day for a good part of 6 years of looking forward to nothing but death. Now, not only do I understand but I'm pissed off enough to get up every day determined to be happy again in life and have a purpose. Guess what, now I do have my life back.
We look at doctors as Gods and they are only people.
I had excellent medical care in Seattle but FTD is elusive and was more difficult to detect back then. My doctor had me on various pharmaceutical cocktails for years and nothing improved my situation. It only helped deposit me into a deep medically induced fog and as soon as the meds wore off, I would go right back to the same behavioral problems that I was having. There was no cyclical mood variations that happens with bipolar, my mood and behavioral problems were constant.
I went through 6 1/2 years of hell being misdiagnosed as being bipolar. Never mind the drug cocktails, I had 50+ ECT's (electric shocks) with the doctor pronouncing that he never has given anyone so many ECT's and we were in, "uncharted waters". Now I know why they weren’t successful. 
I also had surgically implanted (VNS -Vagus Nerve Stimulator) in my chest with a wire attached to the Vagus Nerve giving it electric impulses to stimulate the brain. Tamara and I waited for months on a waiting list to have this pacemaker installed. It was experimental for people being bipolar but was currently being used for epilepsy. We got all the approvals and were excited at the prospect of working and us getting back to a normal life. 
The VNS device is still in my chest like a leftover piece of space junk.  
Of course that never worked either.  I was an experimental lab rat. At the time one neurologist thought it might be an underlying neurological problem, but his voice was silenced amongst all the other doctors that insisted I was bipolar. Me, I was sick and numb. Tamara was incredibly frustrated every moment of every day having to deal which we know now was behavioral problems due to FTD as well as me being over put into a medically induced fog. 

Finally, after a dramatic incident here in NY Tamara left me. 

For two years I was trying to talk her into leaving me because she was so unhappy and she wouldn't. Tamara had the most beautiful smile and her smiles were few and far between. The man she was with was not the man she met, but someone else who was totally out of control all of the time. Tamara never knew what to expect. If it wasn't my behavior, it was memory problems. There was always something to be stressed out about. I was also miserable because she was miserable. had every reason to.  It's now a year later and Tamara and I are still close. Tamara has found happiness with someone else and I am happy for her. After what Tamara went through she deserves all the happiness in the world. She is still helping me now even though we are no longer together. Do I miss Tamara, Yes. But as I have said to her many times,  "Misery Does Not Love Company".

Guess what, I also have once again found happiness and purpose in life.
My recovery will be next 

Tuesday, September 13, 2011

New Relationships with FTD

In life, you cannot stop the constant flow or ebb the flow. Attitude and mindset can be used to adapt to any situation, therefore bringing happiness and contentment in life.
When I started this blog it was with the intention of writing new article 2-3 times a week. Unfortunately I have been going through FTD related difficulties which I will address later. From the neck down I am in excellent health. I'm just slowly losing my mind. Even with losing my mind and being 100% disabled, I do notice that I am now in better mental shape than most people in NYC. As far as physical health, my blood pressure which was extremely high for years has now been normal for a year. I do attribute that to less salt in my body due to the amount of tears shed over the last year.
Well, I lost another person to FTD. No, not someone that died. I've never met anyone else with FTD. We have been seeing each other for a little over a month. She is incredibly direct, funny, and understanding. She was also very religious and was affiliated with one of the more compassionate religions. From the beginning we both have been clear that it would be only a romantic relationship because of my health. Much of our communication was done over the internet. The first few weeks over our friendship we went through a few major crises with me unintentionally hurting her with things I said. 
There is no way for me to stop with the sexual innuendos and inappropriate remarks. It would take me an hour to dig myself out of a hole, not knowing if I could. She is a wonderful woman and she tried to get it. She hung in there longer than most. Last night it happened again and she told me she didn't want to see me again. I can't blame her. She tried her best. I totally understand that I look normal and sound normal a good deal of the time, so when something I say is inappropriate the person is shocked and thinks I'm insensitive or have as in this case only sex on my mind. She didn't realize that nothing is further from the truth. She is now out of my life and I'm sad. 

This happens all the time, but every once in a while I think there is someone there for the long term as a friend and they’re gone.

I am painfully aware that I am unaware of what I say a good deal of the time, it is just difficult for others to comprehend. I will miss her.

Alas.  But there is a new person in my life who so far is hanging in there. A good Starbucks friend of mine, Alice, a health and medical writer with a PhD.  Alice quite often sits across from me. She is intelligent, unpretentious, incredible writer and a loving single mom. I met Alice a few months ago and we have become good friends.  I see Alice just about every day at Starbucks and she the only new person I've met in a long time that gets me and FTD.
She has that natural beauty and aura that is always turning heads. Alice is 20 years my junior and our lives are heading in different directions which is good so I cannot even think about her as anything but a friend. Still I feel like it is another cruel joke of the universe that such a beautiful woman in every respect has been thrown into my life and I will have to be tortured about the, "What If"  possibilities if I was 15 years younger and healthy. A friend of mine first introduced the idea of starting a blog to give me a positive thing to do and have purpose in my life. This was something I was looking for for a while. Alice took the time to show me the site I that could use to create my own blog. Like most things in life I pounced on it. Alice is consistently helping me by reading my articles before I publish them to make sure I won't have anyone chasing me home or suing me for my food stamps. I am a real pain in the ass and I really make a concerted effort to let her do her work and not drive her crazy. Alice's articles have been a huge help for me in putting together and keeping together my life. I'm attaching a link to an article which she just sent me the other day that anybody affiliated with any major illness should read. Caregiver or patient. 
I am also attaching a link to her Forbes health blog which has plenty of articles. Here is a particular one I enjoyed about the psychology of yoga:
Of course now I need to add on a cute FTD story. They’re not all nightmares. This happened about 2 weeks ago:
Please remember I go this Starbucks 7 days a week for a minimum of 3 hours. I know quite a few people there and they know not only about me and FTD, but the work I am doing to help others. I sort of notice when Alice is on line for her herbal tea refills, I don't gawk or stare, but I notice. I am also very careful about monitoring my behavior as much as I can. People that know me do give me a gentle nudge once in a while by saying, "Howard you look like your getting a bit tired" or "Staying late today". I realize I'm being told I'm slipping and it's time to go. It's usually only 9:30-10:30am.
Anyway as I was previously saying, I do notice Alice when she is on line just like I notice quite a few other females. A few days ago Alice had on a different manufacturer’s jeans than she usually wears and I noticed it, but of course didn't say anything. At one point she sat down and said, "Howard, that's a nice shirt you’re wearing". Without thinking, I retorted, "Thank you Alice. By the way those jeans fit you really well, they look much nicer on you than the Levi's you usually wear". Alice turned a little red and of course I couldn't help myself and I said, "you’re blushing". She said, "Of course I am, and those aren't Levi's.".
Later in the day I sent Alice an email: “Alice, congratulations! You have been officially FTD'd.” We still laugh about it.
I saw Alice this morning and told her how much I value her friendship. I told her when I see her sometimes I think of the first US astronaut to go into space Alan Shepard and the Shepard Prayer:   Shortly before the launch, Shepard said to himself:  "Dear Lord, please don't let me fuck up".  
All relationships with FTD are extremely hard. In life, there are many unknowns. I might live another 3 years or 30 years. There is no crystal ball and absolutely nobody knows. I do value family, friendship, and love. 
The romance and intimacy that I had in the first relationship was wonderful while it lasted. I have been in a string of these since last year when I was diagnosed. It’s not easy being 53 with a libido of a teenager. Another identifiable FTD symptom. 
What has developed with Alice is a wonderful friendship and I’m hoping she will stick with me through thick and thin. Yesterday, I went for a walk with Alice and her adorable 2 year old son.  I was well rested having a nap. Of course I cursed a couple of times and Alice asked me to try and watch my language. It took a concerted effort to slow myself down and monitor everything that came out of my mouth. I still blurted out a few things over the hour we were together, but for the most part I kept it together. 
I cannot tell you how difficult it is to keep it together. Keeping myself silent and not cursing, saying sexual innuendoes, making derogatory statements about a dog etc. Every 2 minutes it was something else. I mentioned this periodically to Alice. 
In the last year I have worked extremely hard to deal with the symptoms of FTD. In other words I still believe it’s mind over brain matter, though others believe there is less brain matter and behavior cannot be controlled. Either way, it doesn’t matter to me because I am going to continue to be happy and lead a purposeful life with meaningful friends. 

My true friends and children will always be there for me, just as I will always be there for them and maybe,  just maybe I will be lucky once more in life to find true love and romance together again.