The Value of Support Groups for Caregivers and Patients

Last year after I was diagnosed with FTD the Alzheimer's Association awarded me a grant so I could attend a Dementia Support Group called, "The Memory Club". The group is made up of individuals who have been diagnosed with various early onset Dementia's. I am the only person in the group with FTD - Frontotemporal Dementia.

A question was asked of me by Sharon Denny the program director of AFTD - The Association for Frontotemporal Degeneration . What is the most valuable thing I learned from Riverstone's "Memory Club".  


I took the question to the talented members of Riverstone's "Memory Club" and the upcoming list is what we thought of.


(I am truly the luckiest person in the world. As I sit here typing in Starbucks, one of the lovely barista's just came by to take my cup to give me a free refill).


Many of the answers listed below can be used in context for both support groups of both caregivers and FTD/Dementia patients.


For me, the most valuable thing I learned is number O:


0.  Find happiness and purpose in life again.

a. Everyone has a right to happiness and purpose in life. 

1.  Make subtle changes and adjustments in your routine to adjust to life with Dementia.
a. You need to learn to keep adapting to the changes made by dementia.

2.  Learning to live with Dementia in a positive way.
a. You need to keep a positive attitude  and work around all obstacles.

3.  A sense of belonging.
a. You are a part of something and feel comfortable with the people and atmosphere.

4.  Expressing our experiences to peers in an effort to minimize our problems.
a. Having others that can relate to your life and you to theres.

5.  You learn you are not alone.
a.  You might be lonely, but your not alone.

6.  Learn you can function with your crazy ways.
a. No one is perfect. Live life and enjoy. Get over things fast and move on.

7.  Life is not over, we can rebuild our lives.
a. You can have a full and wonderful life. Just different than before.

8.  Awareness of Dementia.
a. Be aware and accept the a changes in your life. You can't be happy if you keep fighting for the life you had before Dementia. You need to be aware of yourself and your life to move forward.

9.  Get a 2nd opinion,  don't necessarily trust every doctor you see because they are a doctor.
Listen to medical opinion, but don't disregard your instincts and don't think twice of seeing someone else when it comes to matters of health and wellness.

10.  A friendly, supportive, understanding environment.
a. You can breathe and relax. Better and cheaper than a psychiatrist office.

11.  We are like brother/sister.
a. You can develop new close relationships with others that understand you and you them.

12. Learn how to live, not how to die.
a. Get busy living, never give up.

13.  Dementia is a not a mental illness. Medications for mental illnesses do not necessarily work with Dementia.
a. Be extremely careful of all medications and there side effects.
b. There are no FDA approved drugs for FTD. The UCSF website has a guide to medicines for FTD.
c. Do not take Aricept for FTD.

Being diagnosed with  Dementia is a shock to the system. It's not easy being told to get ready for the end of your life.


You have a progressive terminal illness with no cure. 


You're told to make end of life plans. The only thing you can think of when leaving the doctors office is life is that I have Dementia and I'm going to die.  You are in shock and many people do not get over it. 

Caregivers and loved ones lives change drastically as well. They also have to go through the shock of there loved ones having a terminal illness. 

Support groups will help ease the pain and help both caregiver and Dementia sufferer make necessary changes in lifestyle to create a new life. 


To find a FTD support group for caregivers in your area. Check the AFTD Website for the regional coordinators. 

 The Association for Frontotemporal Dementia http://www.theaftd.org/

For caregivers of other types of Dementia's and if there is no FTD support group in your are, contact your local Alzheimer's Association.


Those diagnosed with FTD should try one of the Dementia Support Groups. They can find out where these are from the Alzheimer's Association. It was nothing short of a life changer in my case. 


Remember, you get out of it what you put into it.


It will not be the life you once knew, but it can be a life with happiness and purpose.

Dementia is not the end of life, it is just the beginning of a different type of life.


I am looking to start a FTD patient support group in Manhattan. The purpose will be to help us find happiness, purpose and to deal better with having FTD. Please contact me if you are interested.


Howard

FTD - Explaining Irrational Responses and Questions

Living daily with FTD I find myself constantly answering questions with irrational responses or asking questions that have no relevance to the topic of conversation. I'm always responding with "are you angry at me",  "Am I irritating you", "Did I so something wrong", "I did it again didn't I?". These are constant questions from someone  living with FTD. Often I'm not sure of what the person is saying or meaning. I'm not sure if they are being inquisitive, sarcastic, or critical. I have one friend who constantly tells me one thing, and then tells me he is playing devils advocate later so I never know what the hell he is trying to tell me.


People say they understand FTD and what's going on in the person's mind, but very few do. Caregivers try their hardest but it is difficult to understand how the person you are talking to sometimes understands what your saying and sometimes doesn't. It's especially difficult when you know and love the person and want to believe they understand you and you them. 


Unfortunately the world can be a difficult place with FTD being a cruel joke on one and all.


It is extremely difficult to explain that your thought process is corrupted and the effect that has on you understanding what people are saying to you. It also affects how we read facial expressions and body language.  A person can say or mean one thing and I will take it a totally different way. I constantly try and slow myself down and not answer to anyone quickly as to not misinterpret, but it's virtually impossible. When you're in a conversation and engaged with someone you need to respond to questions and comments. Circumstances are constantly changing and I find myself often without a clue of what is going on. Getting lost in the sauce is easy to do and sooner or later I will always say "What did you mean by that?" The response is usually, "Mean by what?" The person has no idea, that I have no idea, that I have no idea of what there intending to say(yes, I did say that and say that I did.) Sometimes I would say things and would be so far off base that people would just look at me and tell me I'm way off base or I have a vivid imagination. Very hurtful and frustrating for everyone.


I have been making those same comments for years now and it's simply because 1 +1 = 5. People with FTD cannot take facts and put them together to come up with a makes sense conclusion. If you say it is 75 degrees outside but will rain hard later, there is a good chance I will not take an umbrella, but will instead take a heavy trench coat.

____________________________________

A person that I'm in contact with wrote a couple of weeks ago that her husband took there children out to there Church after midnight to do landscaping. He marched back in with the kids at 6am. He explained that it was cooler at night than during the day. They do not live in the desert.


I had a remarkably similar incident.


My son Myles came to visit me in NY during July and I wanted to take him to a NY Mets baseball game. The day of the game was supposed to have a thunderstorm and possible showers. The next night game was supposed to be clear but 5 degrees warmer. 1+1=7. I took him to the game with rain because it was cooler and probably wouldn't rain that much. Made total sense to me. Guess what? Myles and I had a great time dry under the grandstand while the players never even made it out to the field it was raining so hard.


What's interesting about the two incidents is the flawed thought process that brought myself and the other man to come to the conclusion that these were good decisions. These are typical examples of things that people suffering from FTD do every day. Some people think we are crazy, but we are not. 


 Our decision process is flawed and we simply cannot put facts together to make a rational decision. 


I would do anything for my son and so would the man in the Church/landscaping story. We both love our children and try to keep intact our relationship even though it might translate into what is an irrational act. 

 It was a rainout but we were determined to have a great time no matter what and Myles and I had a blast.

I'm sure the man who took his kids on the midnight landscaping foray also had a good time with his kids.

They both turned in harmless adventures that will be imbedded as harmless FTD adventures.

Film about Howard Glick for AFTD

Hi Everyone,


I want to thank everyone for there support. This blog was started in July with the intention of advocating for those with FTD- Frontotemporal Degeneration. The purpose was to give insight and increase awareness of FTD to caregivers and the medical community by articulating my first person experience. I didn't realize at the time awareness of FTD was built upon family, caregiver, and medical community experience. Virtually no one diagnosed and living the disease communicated what it is like to live with it.


For those new to the blog, my bvFTD symptoms started manifesting themselves in 2004 with the first SPECT scan showing it in 2006 and further progression on a PET scan in 2010. I was misdiagnosed as bipolar for 6  1/2 years.


This effort by me to articulate what life with bvFTD is like has been received successfully with my involvement now in numerous online forums/support groups etc. worldwide for FTD/Dementia. Between my blog and email communications I have received over 4,500 correspondences since July. I also set up a Facebook, Twitter, and Linked-in accounts and I have absolutely no idea how many correspondences I've had with those.


Simply put, I eat and breathe my efforts 7 days a week, every moment possible. I am relentless in my efforts to further public awareness and help others. 


This is my life and I love every minute of it. I never sleep more than 4 hours a night. My laptop is never more than a foot away from me and in the absence of a woman in my life sleeps right next to me. It even has a special cuddling and snoring app. Right now it's 3am and I'm typing away. Though I am exhausted and am aware every fleeting moment of the symptoms of FTD, I have decided I am going to ignore FTD and press forward to create for myself a happy productive life. FTD is just going to learn to coexist with a Howard Glick that will manage the symptoms. 

FTD can hang out, but it's not going to rule my life.

In an effort to help me in my efforts to increase awareness of FTD, I was contacted by Sharon Denny of AFTD and Joe Becker of Thinkfilm Inc. about making a film of my experiences  dealing with being misdiagnosed, diagnosed, symptoms, and daily challenges with bvFTD.

I am currently filming my thoughts and experiences with the intention of making a valuable contribution to the field of FTD. The filming is being done with the help of an intern, Lena Pressman (NYC reporter Gabe Pressman's granddaughter).

The object of being a voice of those with FTD is to help improve awareness, inspire others with FTD to get back on their feet, help give insight and understanding to caregivers about loved ones, professional education, and the development of better resources that might one day lead to a cure.

Below are just a smattering of responses I receive on a daily basis which help keep me motivated moment by moment with my struggle with FTD.

Thank you again. Truly this has been so helpful for me. I'm now sobbing and can no longer read the screen, but we have to get it out!!!! :) I am so thankful for all of the wonderful memories I have and also thankful he is not suffering. Keep on keeping on...Take care!

Your blog is so eye-opening. Thank you much for sharing your story, as it is very helpful to those of us who love someone with dementia--no matter what type. Take care and God bless.

I'm catching up on your blog as we speak! :) Your posts sound so familiar to me...similiar to what we have been through with my dad!!! FTD does not define you guys and never will and there are people out there who care!!!!!! I just want you to know that. I care!!!

Hi Howard - I found your blog yesterday and started following it. My mom has FTD (She's 57, and has been ill for about seven years now). I found your blog to be wonderfully insightful. My mom doesn't really discuss or acknowledge her condition and is in a later stage - she is suffering some major memory loss already. Anyways I wanted to thank you for what you're doing. So many times I have tried to talk to her and understand what she is going through but it never brings me any answers. My husband is in the Marine Corps, and we are currently living in Japan, while my mother is living in California and my wonderful grandmother is her sole caregiver. I feel so detached from the situation that it makes me crazy! Your blog helps me feel a little less in the dark.

Hello Howard,

My apologies for the time it has taken to get back to you – I was away on vacation for two weeks and am just back as of yesterday!

Thank you for taking the time to write to me. I am happy to discover your blog. I work with people living with dementia at different stages, and am always so happy to hear people speaking out about their experience. Our groups are always happy to find out about new resources as well.

Thank you for getting in touch! Also, you say you love Montreal, I love New York (doesn’t everyone?).

early dementia said...

Howard this was a brilliant article. Thank you for being so enlightening and creating such a safe space for those experiencing dementia themselves or by a close person in their lives. People will benefit from this and become more accepting and understanding in light of what you share.

Thank you Howard Glick. You are the most powerful and empowering person know. I am motivated and can move mountains because of your example. Like you I passionately work to empower the lives of others. Thank you Howard! !

Your blog is informative, inspirational, insightful and imbued with a sense of humor, kudos to you! Keep on keepin' and blogging on! 

What a brilliant way of taking arguably the most devastating moment of your life, and in one year turning it into something unimaginable.

"Your article was extremely moving and educational to me.. someone who is just learning what you are experiencing.

Anyway, I'm really impressed with the honesty and candor (humor and grace) you express on your blog and I'm looking forward to following your life adventure. 

Never give up your mission, Howard!

 - Minds i said...

Thanks Howard, this is a wonderful blog. It is communicating to the world what I already know, that your journey has been remarkable, the admiration and respect I have for you is equally remarkable. The potential of this blog is for caregivers, the medical and legal communities and people managing dementia; it's already a contribution.

You are definitely making a difference.

Your honesty and insights

are remarkable.  Your drive to spin gold from straw (seems like there should

be a more "ironical" metaphor) and help others is a gift.

i am reading your blog in its entirety and i am enjoying it. your candor and enthusiasm for life is nothing you should cry about! 

Your ability to educate and touch each and every one of us with your candor and your honesty is a gift. And while facing  adversity, each gift you give is immense.

This is just so so great.

How wonderful, how great.

Thank you very much, Howard.  My friend was just diagnosed with Pick's.  I sent your Blog to her parents and her mom is very interested in Blogging.  

You are inspiring!  Thanks so much!

Thank you so much for this.  You are an amazing and courageous person!  My father had FTD and passed away 14 years ago at age 58.  I was a caregiver for him.  I always wondered what he thought about living with his illness.  He once said it was sad, but then lived life to the fullest and we made every day count.  You are making every day count and I honor your courage and outlook to do the best possible with what life gives us.  For 6 years I have been facilitating a support group for adult children of a parent with young onset dementia.  I am passing along your blogsite to them  Thank you again.

All the best,

Gary Radin - Author "What if it's not Alzheimer's"

-------------------------------------------------

I went from making a 100k+ a year to now being disabled with $1.45 a day in food stamps.

I now know the true meaning of purpose in life. I am living a dream few experience by making a profound difference in peoples lives. I will never take for granted one moment in this lifetime. There is no question I appreciate being able to do such meaningful work. As long as I'm breathing, I will continue on this path.

The only thing missing is the ability to spend more time with my children who reside in Seattle and the possibility of finding a partner in life.

Howard Glick

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.

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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.

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