A FINAL ADDENDUM
Life during the last 23 years has been increasingly difficult. However, for all the inconveniences and problems, there have also been times of great joy. Seeing our children grown and established has brought great happiness. Our trips abroad and in the states provided lots of growth and wonderful memories. We look at all the photos fairly often.
There are too many people to name who have supported us in one way or another. My doctors, past and present, Dr. Freeman, Dr. Okun, Dr. Foote, Dr. Pagan, Dr. Kalhorn, Dr. Falconer have kept me going far longer than anyone could expect. Parkinson's obviously affects an entire family. My life partner of 44 years, has been my biggest advocate, cheerleader, counselor, and lover.
Our Best to all of you.
Irish Blessing
May the road rise to meet you. May the wind be always at your back. May the sun shine warm upon your face, and until we meet again, may the Lord hold you in the palm of his hand.
Wednesday, August 22, 2018
Tuesday, August 21, 2018
The Year that things changed
It's been over a year and a half since I published "Happy New Year" 2017. Many things have happened since then.
In late May of 2017, I entered assisted living. Nancy was absolutely exhausted taking care of me and we talked about alternatives. We couldn't afford 24 hour care for me at home, so the only viable alternative was to move into assisted living. We found a brand new assisted living facility about 18 minutes from our house. It looked like the Ritz. I moved in and I couldn't sleep. Part of that was the transition from home to a new place; part of it was that the med techs could not get my medication straight. Nancy had several meetings with the head of nursing, but, to no avail. On the first Saturday morning after I had moved in on Monday, I had hallucinations and ran down the hall yelling "fire", ripped a painting off the wall in the hall, broke the frame, and I "easy cheesed" my kitchenette and the baseball wreath on my door. I also threatened a care giver. Needless to say, this did not go over well with the powers that be, so I had to move. I also had to have a caregiver with me at night until I moved. It took 2 weeks to find another facility. Nancy and LauraJane had visited about 8 places before settling on the second facility. The care there, especially at night, was almost non-existent, so Nancy paid a caregiver to be there for 12 hours during the night.
In the fall of 2017, they found that a new facility was being built 8 minutes from Laura Jane's house.
They first visited it, liked it, and took me there to look around. The head of nursing was very knowledgeable about Parkinson's Disease. We were very honest about the frequency of my falls and my need for special care during the night. They were not effected by that at all. I moved in on January 30, 2018. I was their first resident. The staff here is excellent-very competent and very caring. The place is beautiful, my room is very nice, so I am being well cared for. Nancy comes every day to visit.
When we found out about a new facility being built so close to Laura Jane's house, She and her husband, Seth invited Nancy to move in with them. We needed to sell the house we had bought when we first came to Virginia. It was way too big for one person (5000 square feet) and too expensive to maintain. We sold the house and part of the proceeds went to build an addition to their house. Nancy loves her space and is happy there.
My neurologist, Dr. Falconer, took me off the Nilotinib in June of 2017. He felt that the medication was not doing any thing for me any more. I guess my Parkinson's Disease had progressed to the place where the medication was no longer effective. I didn't change any after the medication was removed, so I think that was a good change.
Even with all the changes that have taken place during the past year, we have experienced many blessings. We are so thankful for them.
Until the next time, I hope you are doing well and are happy. I am becoming weaker, but am still walking with a special walker for Parkinson's Disease patients- the u-step. It helps. My wife of 44 years is still an incredible advocate for me. Life is still good, not great! Take care of yourselves.
Tuesday, January 31, 2017
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.
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.
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.
Thursday, November 17, 2016
How can this be happening? During the past 10 or so years, I have become increasingly frustrated at my inability to communicate effectively with everyone. The volume of my speech and my articulation suffered. I actually took the speech therapy course, LOUD, at St. Joseph's Hospital in Atlanta, but, there was not a lot of carry over for me- laziness on my part. I worked harder to be understood by friends, but did not work when I talked to Nancy. My speech was slurred and not loud enough. Therefore, everything I said was followed by "what?" which was tiresome for both of us and led to more frustration on both our parts.
This past summer at an appointment with my neurologist, he mentioned the program BIG and how successful it was for Parkinson's patients. Nancy called and they said that they probably would not have an opening until December. However, they called a few weeks ago and I've begun the program.
First, I have to say that this freaked me out. I'm very cognizant of my difficulties walking, speaking, thinking. I have fallen more often than I would like to admit. I am sometimes reluctant to stand close to another person for fear that I will fall and take them down with me. I was very nervous about attending the class. I've undergone invasive DBS surgery and was less nervous going through that than I was about this. After the first evaluation which included a few exercises, I was ready to quit because I felt so inferior. Our 19 year old granddaughter said to me, "why do you think you're special? They see hundreds of patients, probably some worse off than you. They take you where you are and try to help you. You have to be willing to work." That did it. I bought in hook, line, and sinker.
It's amazing how my psychological health influences my life. DUH! HA! I have already learned in two sessions how to get into bed and out of bed without needing Nancy to help. I'm also much better in getting out of chairs. I'm practicing the exercises every day and I believe that at the end of the sessions, 4 weeks with 4 days a week, I'll be much better. I'm actually speaking louder also. Speaking louder helps my articulation.
Maybe, you can teach an old dog a few new tricks.
I've begun taking RYTARY instead of the 25/100 carbidopa/levadopa I took so long. It has evened out the on/off time I felt with my old regimen.
In short, I have a lot to be thankful for. We have talked with and met so many people since all the hoopla following the introduction of Tasigna October a year ago.. I'm happy to say that there are more people every day who get their neurologists to prescribe Tasigna. Some are seeing huge changes and some are not. Life is a crap shoot! The Canadian pharmacies who are making money off of all of us are very happy. HA!
We hope you all have wonderful Thanksgivings with those you love and that life is good for you now and in the future. Life is improving at the Hoffman's.
This past summer at an appointment with my neurologist, he mentioned the program BIG and how successful it was for Parkinson's patients. Nancy called and they said that they probably would not have an opening until December. However, they called a few weeks ago and I've begun the program.
First, I have to say that this freaked me out. I'm very cognizant of my difficulties walking, speaking, thinking. I have fallen more often than I would like to admit. I am sometimes reluctant to stand close to another person for fear that I will fall and take them down with me. I was very nervous about attending the class. I've undergone invasive DBS surgery and was less nervous going through that than I was about this. After the first evaluation which included a few exercises, I was ready to quit because I felt so inferior. Our 19 year old granddaughter said to me, "why do you think you're special? They see hundreds of patients, probably some worse off than you. They take you where you are and try to help you. You have to be willing to work." That did it. I bought in hook, line, and sinker.
It's amazing how my psychological health influences my life. DUH! HA! I have already learned in two sessions how to get into bed and out of bed without needing Nancy to help. I'm also much better in getting out of chairs. I'm practicing the exercises every day and I believe that at the end of the sessions, 4 weeks with 4 days a week, I'll be much better. I'm actually speaking louder also. Speaking louder helps my articulation.
Maybe, you can teach an old dog a few new tricks.
I've begun taking RYTARY instead of the 25/100 carbidopa/levadopa I took so long. It has evened out the on/off time I felt with my old regimen.
In short, I have a lot to be thankful for. We have talked with and met so many people since all the hoopla following the introduction of Tasigna October a year ago.. I'm happy to say that there are more people every day who get their neurologists to prescribe Tasigna. Some are seeing huge changes and some are not. Life is a crap shoot! The Canadian pharmacies who are making money off of all of us are very happy. HA!
We hope you all have wonderful Thanksgivings with those you love and that life is good for you now and in the future. Life is improving at the Hoffman's.
Friday, October 7, 2016
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!!!
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!!!
Monday, August 15, 2016
Where is the Knight on the White Horse?
A few months ago, I wrote this piece trying to talk Novartis into paying for Nilotinib for the clinical trial participants. We were initially told that after they had agreed to allow us to continue on the drug under "Compassionate care" that the drug would be provided to the participants. As you may now know, that did not happen. Since I wrote this, one of the participants has passed away. We continue to wait for Novartis to do the right thing by all of us who participated in the trial.
WHERE IS THE KNIGHT ON THE WHITE HORSE?
Alan J. Hoffman, Ph.D
Do you remember the joke that went around some years ago about a divorce? The husband in the couple said that his former wife had “gotten the gold mine” and he had “gotten the shaft.” That’s the way I and eleven other patients in a clinical trial feel.
Twelve of us participated in a clinical trial at Georgetown University which tested the drug Tasigna (Nilotinib) which is used to treat leukemia to see if it was safe for patients with advanced Parkinson’s Disease. The idea was formulated by Dr. Charbel Moussa at Georgetown. He believed that substances from the bloodstream and spinal fluid which cause plaque that increases brain cell death could be reduced by Tasigna. This would slow down the progress of Parkinson’s Disease. There was pre-trial testing to make sure the patients would be able to take the medication without side effects of heart disease. The twelve who were accepted into the program began to take a daily dose of either 150mg or 300 mg capsules.
After about a month, wonderful things began to happen. The quality of my life began to improve. I no longer had to have my wife translate what I was saying to our friends. My articulation and volume improved. I began to do things around the house that I had not done in years-emptying the trash, unloading the dishwasher, setting the table, etc. My attendance at church and at activities increased. We began to participate in social activities as well. My wife says that it was life-changing for her and for my children and grandchildren. Moreover, my cognitive skills improved. I could carry on an intelligent conversation without losing track of the point. I understand that another patient who was bilingual in Spanish and English and had completely forgotten English began to speak it again after taking Nilotinib. This made a huge difference for his English-speaking wife.
Then came the rub. The medication ended for me on August 5. We dreaded that day because we feared regression without it. Just then the knight on the white horse appeared and promised Dr. Fernando Pagan, my neurologist, that Novartis, the drug manufacturer, would continue the medication for the twelve trial participants for free. Excitement was rampant. We were thrilled beyond measure. I could continue to take Nilotinib and hopefully would get better and better and at the least, be stable.
Alas, the knight on the white horse has either vanished or is delayed. Since Nilotinib is not yet approved for treatment of Parkinson’s Disease, insurance won’t pay for it. The cost is astronomical for us- $5000 in Canada for 112 days worth and over $16000 in the US for the same amount- very serious decisions for non-wealthy people.
I am now on the medication again. $5321 later, I began the medication on November 22. Today is December 15. I am beginning to get better already. One other individual in the trial is also taking the medication again. We worry about the 10 others who don’t have a choice.
Dr. Pagan has secured private funding to conduct more trials to see if Nilotinib makes the kind of difference for others that it has made for me. Years from now, the FDA may approve the medication for Parkinson’s Disease and insurance may pay for it. I believe that Nilotinib offers the next hope for patients with Parkinson’s Disease. In the meantime, the twelve of us wait for the knight on the white horse. When we agreed to be “guinea pigs”, we took the risk that we wouldn’t be harmed by the treatment. Since the medication helped all of us, wouldn’t it seem fair for the pharmaceutical company, Novartis, that manufactures it and is the richest drug company in the world to pay for the 12 original “guinea pigs” whose quality of life was so poor that they were willing to try anything? Where is the promised compassionate care?
Where is the knight on the white horse?
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