I swore that I would never put pen to paper again after I posted my last post.  It's harder now that I'm 75 to get 'psyched up' to write. Nancy stays on my case, though, and your comments persuade me that I still have something to share.

Several things have happened since I last posted.  CBS Evening News with Dr. John LaPook came and interviewed us for about 2 hours.  They plan to run it prior to the next trial which begins in January.  He couldn't have been nicer; his producer, Amy Birnbaum, was a doll and the sound and camera people were great.  It could not have been a nicer experience.  Of course, during the interview, my medication wore off, so my tongue was out of my mouth most of the time.  I'll let you know when we find out when it will be shown.

I had been on requip since my first diagnosis with Parkinson's in 1997.  At one point, I was taking 24 mg. a day- not good because I became an on-line gambler.  I still continued to take it at a reduced dose until a few months ago.  Now, I'm on mirapex ER and doing better.  I also began taking Rytary a few weeks ago.  That is helping a lot- no more on, off times with my medication.

Yes, I'm still on Tasigna and feel that it's helping me.  I'm still taking the original 150 mg that I took in the trial.  While there are days I feel not so good, most days I'm 'up and at em', feeling good.  I'm much more help around the house which Nancy appreciates and thanks me for. I am a retired university professor and am able again to have good conversations with her and with others.  So, I feel useful and needed.

The Michael J. Fox Foundation and the Georgetown University feud became public and, quite frankly, I think the Fox Foundation came out looking like they can't stand not to be the first to make a breakthrough for Parkinson's Disease. It's amazing how politics is in everything!!  So disappointing and also disgusting.

I take medication five times a day.  A few days ago, I moved some of the pills around in my pill container, taking them at different times.  Don't ask me why I did it.  Nancy was furious!  Yesterday, she organized my pills for three weeks as she does every three weeks.  She made me watch and she explained what everything was and why I should take it at a certain time.  She can't die on me, because no one can ever figure out what I take when.  She uses a plastic weekly pill dispenser for each day and labels the hour I'm to take pills.  What a job!

It's astounding to me the trouble that people go through to find our number and make contact with us. That just shows how important it is to have hope.  People have called from all over the world.  Of course, the real question is "How are you doing?"  One recent caller is renting a houseboat on the Potomac and coming up from North Carolina so her husband can hopefully be in the next trial at Georgetown. People say, "oh, thank you, for talking to us." There is no need for thanks.  We are all in this together.  We are the Parkinson's family and we owe each other as much information and help as we can.  We all need listening ears.

The wonderful thing about this upcoming trial is that Novartis has promised in writing to provide Tasigna for all trial participants after the trial ends.  If they had done it for me and my group, it would have been so much easier for all of us.

Right now, I'm pretty 'down' on pharmaceutical companies and insurance companies.  Pharmaceutical companies are in business for the profits they make.  People who need the drugs they manufacture are way down at the bottom of the companies' concerns.  They overcharge, keeping many people from
being able to purchase the drug, and then the insurance companies refuse to pay for many drugs that I take, so we have to go through the appeals process.  It's frustrating and time-consuming.

Life continues to be good at the Hoffman house.  I promise to write when there's anything to say.
Take good care of yourselves and let us hear from you.

In God we trust.  We're having some reservations about trusting drug companies.  HA!!!