Tuesday, September 4, 2012

Future Treatments

Many people ask me what treatment I'm getting for FTD or future treatments I'll be getting.

From this patients point of view. I have a closetful of MRI, SPECT and PET scans. I have thousands of page of doctors notes. Besides scans, I've had ECT (shocks), VNS (implant in the chest with wire to my brain), spinal taps and every medication that doctors can trial and error on a living human. There is no FDA approved medication for FTD. Some people need them for behavioral reasons which is totally understandable. Unfortunately, all meds are trial and error, hit and miss. The more you take, the faster the demise of your brain.  I will not be taking any meds besides Namenda. I'm not sure if that even works. 

I started taking Melatonin for insomnia about 2 months ago and just took myself off it. 

Meds might give me peace of mind, but they'll be taking away from my quality of a real life.

I have a firm diagnosis of FTD.  Incurable, unstoppable and untreatable. 

I see my neurologist once a year because I like her and maybe if there's a magic cure on the horizon, I want to be on the list. 

I will be donating my brain to science.

As far as being scanned, poked, prodded or experimented with. Those days are over. Waste of time, money and needless anxiety. 

The only reason for anymore medical exams is if my Long Term Disability company Unum decided to reinstate my disability. Insurance companies want to make sure you can't be cured or have a miracle. At least till your in the grave.

One piece of positive news is my lawyer is making some headway in my disability case against Unum. There's a long way to go, but there is hope. I'll take any hope anyone can give and run with it for miles.



  1. Thanks Howard:
    short and to the point, I am with you all the way.

    all those drugs were effing me up, I am much better off staying away from things that don't obviously make me feel good.

  2. Howard,
    Love your writing style, direct and to the point. You make a bad situation better. I am a caregiver and you've helped me from what I have read. You have to have Hope and I'm happy you do.
    Keep writing and I will keep reading :O)


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