Sunday, September 18, 2011

FTD and The Pain of being Misdiagnosed

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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 

1 comment:

  1. I would suggest everyone to get a second opinion just to be safe. I have used a second opinion service a few times and will continue to do so. For the time and price its well worth it. Very professional and saved me a bunch of money.They also gave me a coupon code to share “sy15" to take 15% off your entire order which should still work. I recommend getting a second opinion because it can potentially save your life.


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