Friday, February 10, 2012

FTD - Drugged Up

First of all, for those out there with FTD, there is a private Facebook FTD Patient Support Group you can join. It has 36 members and is a positive, informative group. Please contact me for details of scroll down to the article which gives instructions.

This is directly off my medical charts. I'm probably forgetting a few.

selegiline patch
EMSAM patch

The above medications are anti-psychotics, anti-anxiety, antidepressant and sleep medications.

These are the meds I was on while on pharmaceutical cocktails for 6+ years of being incorrectly diagnosed as bipolar. I say incorrectly and not misdiagnosed because I have a lot of respect for most of the Doctors and I know they tried there best with the information they had.

FTD mimics bipolar. Over 50% of FTD cases are misdiagnosed as a mental illness.

There are no FDA approved medications for FTD. FTD is untreatable, unstoppable and incurable.

I have been off all the above listed medications since June 2010 when I was told the PET scan and neuropsych testing showed I had FTD. 

Friends and support groups are the best therapy to try and manage the symptoms of FTD. Even though I'm doing much better with my mood improved and me functioning much better. FTD continually takes me by surprise by showing it's ugly face and tries to destroy anything I have left in life.

The medical community and most caregivers agree that the best way to handle those with FTD is to drug them up and make them almost incoherent. That makes life easier for everyone. What does a caregiver do for a loved one that is now different from the person they've known for years. They don't want to abandon them, but can barely deal will them. Everyones life gets ruined by FTD and it's just easier in many cases to drug the person, than try to help them be themselves to somehow be the person they were. The more you drug people up with FTD, the less they use there brain and the faster and further they slip. 

There are many medical theories to FTD'ers and the use of their brain. One theory is how the brains with FTD function at a higher level earlier on, even before symptoms show because the brain knows it's in trouble. I'm told frequently how high functioning I am, even though I drive everyone crazy.

Then there's a theory that since part of the brain is being systematically destroyed, other parts or the brain aggressively make up for it.

I'll let the scholars argue to which if either of these theories are correct. Me, I'll just say there are many with FTD that are wasting away on drugs because they don't have the correct support to help them and there are absolutely no programs or support groups targeting those with FTD. 

I started my own on-line FTD Patient Support Group. It now has 36 members and is a large success. Yet besides AFTD, I cannot find anyone to help. I'm told there to many legal ramifications or unknowns. In other words, plenty of excuses, no actions. Therefore there many with FTD out there that are getting no support. Caregivers and loved ones get support, but not patients. The disease is to complicated. 

I can only hope someone has the balls out there to do the right thing because FTD patients are out there and need help.

I fight to manage the symptoms every moment of every day. I have no caregiver and can't ever see there being one. It's virtually impossible for just about anyone to put with me because of the behaviors that constantly manifest from FTD.

I'm in a losing battle, but am happy to fight it. 

I can only judge what I'm doing with my life and shouldn't judge others. Yet, I know now of others that are suffering and that can coexist without being drugged up.

Me, my life is sheer hell a good deal of the time but so what. I've incredible moments of happiness and sense of accomplishment from things I'm doing.

I do have to live constantly on the edge because the long term disability company UNUM, a 6 billion dollar company who has been under government investigation and fined for not paying claims has decided not to pay my claim.

Unum knows I have FTD. The medical evidence that I had it when I was under there policy is indisputable. I know plenty of others with FTD that have Unum policies, that are getting there disability. Yet, it's simple corporate greed and keeping up profits. I have a lawyer and a case will take years. Shame on Unum because they know I don't have years. We're not talking about a huge amount of money, just enough for me to get the necessary medical care and see my kids more than once a year.

It would be nice to plan for a long term facility and not scrapped off my apartment floor some day.

If anyone out there is with HR for any firm. I would investigate Unum closer before going with them as your long term disability carrier. You'll find they have many skeletons in there closet and routinely screw people who have there policies.

I am going to be starting a large campaign against Unum to make sure people are aware of what a despicable company there are.

All in all, I will not take drugs and I will keep fighting to educate, further public awareness and help those with FTD. This is what I've dedicated my life to.



  1. This comment has been removed by a blog administrator.

  2. You should walk a mile in an FTD caregivers shoes before making such a sweeping statement about the use of drugs. Most people with FTD do not have your level of awareness or any desire to try to control themselves. My Dad would have certainly ended up in prison if we did not use drugs to keep him under control while he was still at home. I won't go into the gruesome details but with or without drugs it is never easy looking after someone with FTD. Should we allow the person with FTD to destroy the lives of everyone around them just to keep them off of drugs?

    1. As far as walking a mile in a caregivers shoes, I've had a caregiver and she went through hell. I'm my own caregiver now and I refuse to have another one. In your fathers case, medications are necessary. You don't need to go into gruesome details because I had plenty of my own. I read about others all the time. I read the forums where mostly what is discussed is horror stories. You never read about stories like mine because many people like to focus on the negative. Stories like mine exist, I have a support group full of them. Of course there are cases like yours where medication is necessary, but there are many cases where a person is just wasted away and a life is a terrible thing to waste.

      I agree with you that medicine helps in many cases, but unfortunately it is not administered correctly as you suggested. In cases where people are becoming violent or are a danger to themselves, medicines are a last resort before disaster. The only other option is institutions, prisons or death. There are no FDA approved medications for FTD.

      Many pharmaceutical companies openly advertise that there medications can give people suicidal thoughts. While being misdiagnosed as bipolar I was on up to 17 pills a day including those that made me have suicidal thoughts. It's been 20 months since I was taken off all meds after being d with FTD. I have a top neurologist who has me in support groups and keeping it together with support, hard work, nutrition and luck. I haven't had any suicidal thoughts or attempts since then. I work hard all the time trying to keep it together. I am out of control because of FTD, but I'm in NYC where I can get away with most things. If I was in Idaho of Utah I'd be in an institution. My girlfriend told me the other day she dies a thousand deaths every time I open my mouth. I carry FTD awareness cards given to me by AFTD in my wallet.

      I know sooner or later I will need meds and will be placed in a facility. Right now I've found purpose with my blog, support group and movie. Life might be easier with drugs, but I prefer to be clear. My support group has over 30+ FTD patients that are surviving like me. Many without caregivers or drugs.

      All of my doctors answers were to slowly administer more pills to me or swap them out with others. I did have excellent doctors, but they were stymied by my symptoms.

      Much of the world see's dementia patients drugged up to a point where there in a medically induced fog. That's the reality of the situation. There isn't enough time to monitor patients and placing them in an inactive state is the only route.

      Best of luck and you should be proud of yourself for the excellent job your doing taking care of your dad. I know we agree to disagree and there's nothing wrong with that.

      I will continue my fight against FTD 20 hours a day.

    2. One other thing I did want to say is I wouldn't be where I'm at without the support group I'm in. I'm lucky enough to be in a support group for people with dementia that helped me learn to live with FTD.

      I'm sorry if some of my remarks seem harsh and callous. I have teenage children with huge emotional problems from growing up with an FTD dad. I've lost the woman I loved and am just months from being out on street. This blog, my purpose is to further public awareness and work towards an eventual cure. It is also to get better care for all those with FTD and better help for the caregivers.

  3. Keep fighting Howard! I do understand your aversion to taking drugs after all you have been through. The facility where my Dad is now has tried to keep my Dad off of drugs as much as possible, as they actually have the staff to look after him, but as time goes by it is becoming necessary to control his behavior.

    You are doing a great job bringing about awareness of FTD! You should be proud, your spirit is inspiring.

  4. New diagnosis of FTD, with executive function problems, Apasia, Movement disorders: My wife was on Stelazine, Wellbutrin, Abilify for Bipolar. Discontinuing Stelazine eliminated about half of her aphasia, discontinuing Wellbutrin eliminated most of her movement disorders. Treating her Sleep apnea with a CPAP reduces her cognitive impairment. Yes she still has cognitive impairment, and a really Big grocery buying problem. But she can function much better without the Meds, at least for now. I am focusing on learning more about medications that may treat the disease like TAUrx and Sirolimus.

  5. MY HUSBAND WAS diagnosed with FTD, i am his care giver. Its so hard to watch the man i love
    become someone i dont know most of the time. I need anwers. My family is falling apart, because
    they dont see how he is. They are not their day after day, so they dont know how stressfull it can be.
    He can no long comprehend, he is mean, he is eating so much, his balance is bad, he falls so much.
    I feel so bad for him.oh and our bank account is dwindling down to nothing because he has bad judgement
    on buying thing. Is this nomal for an person with ftd?


Note: Only a member of this blog may post a comment.