Uncovering the White Horse
Months ago, I wrote a piece about looking for the Knight on the White Horse. In that piece, I was voicing my frustration with Novartis Pharmaceutical Company. Their product, Tasigna, had been given in a clinical trial at Georgetown University to Parkinson's patients. During the trial, they had made verbal promises to continue providing the medication for those patients. After the trial, they refused. After jumping through several hoops with Novartis, we finally gave up and began to purchase Tasigna in Canada. Why Canada? Since insurance will not pay for a drug not approved for a particular disease, the cost of the drug can be tremendous. This particular drug, although approved for leukemia, is not approved for Parkinson's.
We began to check the cost and the reputation of the pharmacy that would be providing the pills. We felt that Canada was a good option. Their pharmacies are certified and have credentials showing that they are actually giving you the medication you order. The first time we ordered from Canada Drugs.com, the cost was $47 a pill. The last time we ordered, it was $40 a pill. In the United States, it would be three times that much.
While I improved taking the tasigna, it has not been a cure for me. It is keeping me stable along with the other medications that I take for Parkinson's. Maybe, I've been diagnosed too long for it to cure me. It's been almost 20 years since my diagnosis. I probably had Parkinson's long before the diagnosis.
I think I was dreaming when I came up with the White Horse metaphor. I believe that we have to construct a white horse ourselves. While Dr. Moussa and Dr. Pagan have found something with a lot of potential, I'm afraid we're still looking for better therapy. It will take lots of money to find the cure for Parkinson's Disease. At this point, I think our best course of action is to contact every person in power to let them know how important it is to fund research. Also, if you have extra money lying around, it will be important to use it to help. Last year, we gave some money to Georgetown University to 'fund a fellow' to work in the area of Parkinson's research. I encourage you, if you can, to follow up with institutions doing research and help them.
I would not wish Parkinson's Disease on any one. I hate to think that in 20 or so years, the number of sufferers will increase three-fold. Parkinson's sufferers have had lots of horse manure to deal with. It would be wonderful to actually ride the horse instead of walking behind it.
This is my sermonette for the day. Sorry if I've bored you, but today was soapbox day for me.
Tuesday, January 31, 2017
Saturday, January 21, 2017
Happy 2017!
A belated happy new year to you! We hope that 2017 brings you many blessings. I've been thinking about the advantages I've had over the 19 1/2 years I've been diagnosed with Parkinson's Disease. Almost all of the people I've known through the Parkinson's years are now deceased. Yet, I'm still 'perking'.
It helps to have a life partner who loves me, but is happy to get after me when she thinks I need it. She has been a loving nag and I appreciate her more than I can say.
Other advantages I've had include living in a big city when I received the diagnosis. Atlanta has medical schools, lots of specialists in every area which is important if you have a movement disorder. While I began with a neurologist who specialized in headaches, he knew a lot about Parkinson's because he attended a monthly class at Emory which was centered on Parkinson's. We decided to go to the teacher instead of the student, as great as he was. Another thing about a big city with a teaching hospital- there are lots of clinical trials to look at and choose. I participated in two or three exercise classes, a gait trial, and the LOUD program. I was extremely blessed to participate in an exercise class with an instructor, Kirsten Magee, whose father in law had Parkinson's Disease. For very little compensation, she met with a group of us Parkies to exercise each week. Her faithfulness to her students was enough to entice us to make an hour's trek to and from the class for several years. The other guys in the class- Steve, Ron, Jerry, Wally, Jim, were buddies that I miss.
Our youngest daughter, Laurajane, began working for the Parkinson's Action Network in 2002. She became the conduit for information about and relationships with members of the Parkinson's community. Her knowledge of the disease and her determination to get me more involved in my own life were invaluable. Her knowledge led us to Dr. Michael Okun at the University of Florida in Gainesville. Dr. Okun was just what I and Nancy needed. He is so knowledgeable, so caring, so kind, and so efficient and effective in his communication that, even though we lived 360 miles away, we gratefully made the treks back and forth to Gainesville. During the years with Dr. Okun, I had deep brain stimulation surgery on my right side. Dr. Kelly Foote, the neurosurgeon in the department, was just as special as Michael Okun. Nancy and Michael actually cried when we had our last appointment with him. He has continued to be our help in time of trouble since our move. Nancy's Mother, who had a deep faith, would have said that Dr. Okun would have many stars in his crown when he arrived in heaven.
When we made the move to northern Virginia to be close to two of our daughters and our five grandchildren, we came with trepidation about finding a neurologist. We were lucky that Dr. Okun was well acquainted with Dr. Fernando Pagan at Georgetown University Hospital. He accepted me as a patient at the request of Dr. Okun, and we began our adventure here. During the four years we've been in Virginia, I've had two battery replacements for my DBS stimulator with Dr. Chris Kalhorn, a neurosurgeon at Georgetown, who is wonderful and I've participated in an Apokyn clinical trial, a Nilotinib (Tasigna) trial, and have been a part of the BIG exercise program.
We've met and talked with so many people, especially after the Tasigna trial, and the resulting publicity it received. Nancy, especially, has been great in talking with and trying to help the many people who have called who need information and hope. Sharing information with them and receiving information that they shared has been a great help. Special thanks to Mitch Weinberg, Bob and Joann Runk, Donna St. Clair, Larry Almond, Ashley, Don, P.J., Terry Michael, Virginia Greene, Ed Vergano, Judith, Alan and Margery Ginsberg. If I've inadvertently left anyone out, I apologize.
Please continue to respond and comment and add your own take on life with a degenerative disease. Keep those comments and information flowing.
It helps to have a life partner who loves me, but is happy to get after me when she thinks I need it. She has been a loving nag and I appreciate her more than I can say.
Other advantages I've had include living in a big city when I received the diagnosis. Atlanta has medical schools, lots of specialists in every area which is important if you have a movement disorder. While I began with a neurologist who specialized in headaches, he knew a lot about Parkinson's because he attended a monthly class at Emory which was centered on Parkinson's. We decided to go to the teacher instead of the student, as great as he was. Another thing about a big city with a teaching hospital- there are lots of clinical trials to look at and choose. I participated in two or three exercise classes, a gait trial, and the LOUD program. I was extremely blessed to participate in an exercise class with an instructor, Kirsten Magee, whose father in law had Parkinson's Disease. For very little compensation, she met with a group of us Parkies to exercise each week. Her faithfulness to her students was enough to entice us to make an hour's trek to and from the class for several years. The other guys in the class- Steve, Ron, Jerry, Wally, Jim, were buddies that I miss.
Our youngest daughter, Laurajane, began working for the Parkinson's Action Network in 2002. She became the conduit for information about and relationships with members of the Parkinson's community. Her knowledge of the disease and her determination to get me more involved in my own life were invaluable. Her knowledge led us to Dr. Michael Okun at the University of Florida in Gainesville. Dr. Okun was just what I and Nancy needed. He is so knowledgeable, so caring, so kind, and so efficient and effective in his communication that, even though we lived 360 miles away, we gratefully made the treks back and forth to Gainesville. During the years with Dr. Okun, I had deep brain stimulation surgery on my right side. Dr. Kelly Foote, the neurosurgeon in the department, was just as special as Michael Okun. Nancy and Michael actually cried when we had our last appointment with him. He has continued to be our help in time of trouble since our move. Nancy's Mother, who had a deep faith, would have said that Dr. Okun would have many stars in his crown when he arrived in heaven.
When we made the move to northern Virginia to be close to two of our daughters and our five grandchildren, we came with trepidation about finding a neurologist. We were lucky that Dr. Okun was well acquainted with Dr. Fernando Pagan at Georgetown University Hospital. He accepted me as a patient at the request of Dr. Okun, and we began our adventure here. During the four years we've been in Virginia, I've had two battery replacements for my DBS stimulator with Dr. Chris Kalhorn, a neurosurgeon at Georgetown, who is wonderful and I've participated in an Apokyn clinical trial, a Nilotinib (Tasigna) trial, and have been a part of the BIG exercise program.
We've met and talked with so many people, especially after the Tasigna trial, and the resulting publicity it received. Nancy, especially, has been great in talking with and trying to help the many people who have called who need information and hope. Sharing information with them and receiving information that they shared has been a great help. Special thanks to Mitch Weinberg, Bob and Joann Runk, Donna St. Clair, Larry Almond, Ashley, Don, P.J., Terry Michael, Virginia Greene, Ed Vergano, Judith, Alan and Margery Ginsberg. If I've inadvertently left anyone out, I apologize.
Please continue to respond and comment and add your own take on life with a degenerative disease. Keep those comments and information flowing.
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