I have always heard that time flies as you get older and I guess they (whomever they are) were right. It seems like it was just a month or two ago since my 5th Anniversary post last July. Yet here we are 6 years since the start of my journey with Parkinson’s Disease. Many of you have been following along for those 6 years as we became expert at researching PD, learning all we could by attending research conferences, day long seminars, and attending the 4th World Parkinson’s Congress in Portland, OR.
We have seen substantial progress in the past 6 years with researchers diving into the gene pool to look for ways to modify the progression, drug research that has resulted in several new drugs being approved, several clinical studies looking at re-purposing already approved drugs for use in PD, and new clinical trials involving implanting stem cells. And don’t forget the great Sarasota experiment that resulted in our move to Sarasota, Fl and our subsequent love of tennis.
I am pleased to report that there have been no major changes to my symptoms during the past year. I continue to exercise as much as possible playing tennis 3 to 5 days a week and attending the cycling for PD class twice a week. The biggest change has been the emergence of occasional dyskinesia, involuntary movements which are usually a result of the amount of medication needed to keep the symptoms at bay. As I wrote in the last post, I seem to have figured out the right combination of extended release levadopa/carbadopa (Rytary) , pramipexole, and regular release levadopa/carbadopa (Sinment) which reduces my “off” time if I stay on schedule.
If you saw me today playing tennis while the medication was working you would probably say “You don’t have PD.” If you saw me when the medication has worn off, you would notice my limited arm movement, my limited leg movement resulting in short steps, how difficult it is to get out of a chair, and you would probably notice my lack of facial expression (the PD mask). You still might think “He doesn’t have PD” because I don’t have tremor, but I think you would agree my issues are caused by more than being 73 years old. I feel like my progression continues to be slow and I credit exercise for keeping it that way. I know I rarely mention the need for exercise in this blog 😀 but I will make a pitch today, find an exercise you like, and start exercising. You might only go for a minute the first day, 2 minutes the next day and 3 minutes the 3rd day, but you will build up stamina and you will see a difference in your symptoms.
Speaking of exercise, yesterday during our Tuesday cycling class, the management of the YMCA announced that they were closing the Sarasota YMCA’s on September 13, 2019. Talk about a shock, we were flabbergasted! Apparently the rumored financial mis-management finally caught up with the board and the only option was to close the buildings. We are all looking for new alternative locations for our classes and hopefully we will have something by the 13th of September. The high intensity exercise we get cycling has been a mainstay of my exercise program for the last 4 years and I can always tell when I miss a class or two. Hopefully we get this worked out or I might have to take up running again or I guess I could play more tennis😎.
This has been a hectic, fast paced and exciting spring. So much has been going on that this is the first chance I’ve had to take some time and catch you up on what’s been happening. As long as you don’t count the times I started and dozed off in front of the screen leaving a trail of dddddddddd or some other letter across the page. 🙂
When last we met, it was the middle of April and we had just completed our World Parkinson’s Day cycling class in the lobby of the YMCA. One of the pluses of living in Florida is everyone likes to come visit in the winter and spring before it gets too hot and humid. Another is, we like to play tennis in the winter and spring and fall (and summer!) so we kept busy for much of April playing tennis and enjoying our friends and family who visited during the month.
In May we traveled to West Virginia University to attend our
granddaughter Breanna’s graduation from medical school. It was an
outstanding event as her parents presented her with her hood during the
ceremony.
We returned home and caught up on our tennis and cycling then in early
June we traveled to Little Rock , Arkansas to attend Breanna’s wedding
to fiancee Will. In between her graduation and the wedding, they had
been to Italy for two weeks, purchased a home in NC where she will
be a resident for the next 5 years, moved most of their belongings to
the new location and found a chocolate lab puppy who will join them
in a about two weeks. (Our first great grand dog!) And I thought we
were busy!!
And now it’s almost the end of June and we are gearing up to celebrate the Fourth of July with friends and family at the beach followed by a trip to Bald Head Island in North Carolina and then a trip out to Seattle to visit family.
In between visiting, traveling and exercising I have spent many more weeks trying to determine the correct amount of Rytary and carbidopa/levodopa to take and I think I have finally hit on a combination that is working most of the time. I am taking two Rytary when I get up and then two carbidopa/levodopa 3 times a day in between with each dose accompanied by 1/2 tablet of 1 mg pramipexole and if I’m still off for whatever reason, I take an extra carbidopa/levodopa as needed. In talking with other PwP’s it seems that we all have a routine that works most of the time, and none of us want to add another med if we don’t have too so we do what we can to ‘make it work’.
Next month will be the 6th anniversary of my diagnosis and I am as active if not more active than I was before I was diagnosed. When I go back and read some of my early posts I am certainly more active now than I was during the first year or so after diagnosis and I continue to believe that exercise helps me fight PD and slow the progression. In the past six years there have been several new medications approved along with new DBS equipment and the dopamine pump which supplies a steady amount of dopamine. And if you read the Science of Parkinson’s monthly summary (click on tab above) you will see that there continues to be a lot of interesting and promising research happening around the world. So I hope I can continue to slow my progression and benefit from some of the research results that get approved in the next 6 years!
As I mentioned in my last post, yesterday we moved our spin bikes out of the classroom and into the lobby of the YMCA and held our Pedaling for Parkinson’s class in the lobby . We had a good turnout of cyclists and attracted a lot of attention from Y members and visitors who stopped to watch us as class progressed. A member of the Neuro Challenge Foundation staff was there to answer questions and provide literature about PD and the foundation. And a reporter from the local news station, Suncoast News Network, was there and filmed us for a news report that was broadcast that evening. A video of the broadcast is below. A big thank you goes out to the YMCA staff for allowing us to hold our class in the lobby and to our instructors Kathy and Kelly for always challenging us to keep on pedaling. And kudos to all of the riders who participated in the event to bring awareness to PD.
Parkinson’s Patients Peddle to Raise Awareness by Jenna Brew, Suncoast News Network
Oh, you may have noticed a familiar face being interviewed towards the end of the video, yep that’s me making my TV debut. I’m pretty sure the offers for a starring role will be rolling in any day now 🙂
And I’m back! I noticed that I didn’t mention anything in the last post about how my buddy Parkinson’s and I are getting along. Things are pretty much stable, still some arm stiffness and shuffling when I walk and the occasional balance problem. I don’t have the sticky feet problem nearly as often nor the internal tremors so, all in all, things are OK.
As I have noted before, I follow many other blogs, websites, and Twitter accounts related to Parkinson’s, probably close to 50 if I took the time to count them all. I have been planning to add a page with the list of who I follow to this blog and maybe that will happen one of these days soon, but remember, apathy is a non-motor symptom so don’t hold your breath. 🙂
One of the blogs I follow is Tremors in the Universe written by Robert Baittie. In a recent post, Chapter 36 Whistle while you twerk, he talks about another symptom of PD, micrographia and from there he… well here, I’ll let you read it yourself picking up where he defines micrographia:
“The symptom as it appears in association with Parkinson’s disease is called micrographia, and in handwriting or penmanship is characterized by abnormally small, cramped handwriting and/or the progression to continually smaller handwriting. It’s cause, according to the National Parkinson’s Foundation is attributed to a common feature of PD which is a slowing of movement, and feelings of muscle stiffness in the hands and fingers. Loss of automatic motion also affects the easy, flowing motion of handwriting. This can impact even simple writing taskssuch as signing your name.”
“Which started me thinking.”
“Parkinson’s disease is named after the English doctor James Parkinson, who published the first detailed description in An Essay on the Shaking Palsy in 1817.”
“In 1817”.
“Might there be any signatures of record prior to 1817 that show signs of a typical Parkinson’s style of writing?”
“Of what importance was that to me? Well my entire attitude around my diagnosis of Parkinson’s has been about succeeding with the disease and having and maintaining a positive attitude towards dealing with it. I was curious if there might be individuals who had continued to achieve and possibly even made a mark in history while in the midst of dealing with PD? At a time when they didn’t have today’s technology, support and treatments. Obviously this was all pure speculation because prior to 1817 it was not classified or known as Parkinson’s. But I was curious none the less.”
“The first thing I did was to Google micrographia thinking I might find a visual example of the malady that I could use for comparison to any earlier documents I might come across. And sure enough, in the Wikipedia Encyclopedia a writing example of a Parkinson’s patient.” “The next step was to begin searching documents prior to 1817 that might offer a similar writing style”.
“Now I was not going to go about this by pure happenstance, on the contrary, I had a hunch and I had definite place in mind to start. There was one document in particular I wanted to take a look at. And sure enough my hunch or maybe I should say my “intuition” was correct.”
Stephen Hopkins
“Here was my individual of notoriety that I felt had that characteristic signature at a time when the flourish of stylized and ornate signatures and penmanship were the art form of the day.”
“Here was a man among men. Stephen Hopkins. Born in 1707 and died in 1785 at the age of 78. He came from a prominent Rhode Island family and most definitely left his mark upon a nation. Not only did my initial examination of the document serve to heighten my belief, but further readings of his biography removed all doubt. His own admission was proof enough for me.”
“In the summer of 1776, while holding his right hand with his left, saying, “although my hand trembles, my heart does not” Stephen Hopkins, a Rhode Island delegate to the First Continental Congress, signed the Declaration of Independence.”
“It gave me tremendous pause to sit and look at that Declaration of Independence and those signatures and to think about the thoughts that must have been going through Stephen Hopkins mind. Not only could I imagine he had a sense of uncertainty and fear for what the future held for our new country at that time, but he was simultaneously dealing with the uncertainty of and concern for his own health. He held the same questions in his mind then about his health, that millions still hold to this day. What is causing this? What can be done?”
“And as I reread those simple words of Stephen Hopkins, a number of thoughts came to mind. First, I felt a tremendous amount of respect for the man because he was not afraid to share with his friends and colleagues the disease that afflicted him. Especially at a time when there was no explanation he could offer for what ailed him. He openly called attention to and acknowledged his tremor and in doing so said he was not ashamed of it. Second was that he had not allowed his tremor or the disease to limit him. He had continued on with his passion for his work. But most profoundly to me was the double meaning I took from the words as a whole. While obviously in one context he is referring to our young nation and “though his hand trembles” while signing this Declaration of Independence “his heart does not” because he believes this to be the right direction for his country, the other context it speaks to for me is the disease of Parkinson’s itself. The words make the analogy of how I have felt all along. “Although my hand trembles, my heart does not.” It’s that strange sense of the positive and knowing that although I have been diagnosed with Parkinson’s, everything I feel in my heart tells me there is nothing to fear and I will be alright. That I can and will deal with whatever it brings me.”
“Over 230 years later since the documents signing technology is most definitely moving at a rapid pace, and the research being done toward finding a cure for Parkinson’s is as well. But to continue that work and to hasten the success, additional funding is always needed. Volunteers and Foundations continue to spearhead the vast majority of the fundraising efforts but more needs to be done.”
“Given that, I find it extremely ironic that this would be the example of the signature I would find. A statesmen, a member of the First Continental Congress. Because additional support and funding from our government is what is needed to keep progress moving forward and ultimately finding a cure. And so I would like to ask everyone reading this to take the opportunity to write your Congressman with a steady hand to request that they show the heart of our founding fathers and support increased funding for Parkinson’s research. (emphasis added)
Reblog it. ReTweet it. Do it for your self. Or someone you love.
To find out what prompted Robert to research micrographia, read the complete post of Chapter 36 here. I think you will find it interesting and I highly recommend reading some or all of his other ‘Chapters’.
What a great statement “although my hand tremors, my heart does not” and as the Michael J Fox Foundation says “Our challenges don’t define us. Our actions do” We can and will deal with whatever Parkinson’s throws at us on our way to finding a cure.
I also agree that we need to continue to urge Congress to support increased funding for Parkinson’s research. In that vein,the Parkinson’s Action Network (PAN) is sponsoring a Parkinson’s Day of Action on February 26th. They ask that you contact your Representatives and ask for their support. They have provided information here on how to contact your representatives, some sample statements you can use and links to why we need more funding for research. I urge you to join me and PAN on Wednesday, February 26th and contact your Congressional Representatives.
As I write this post, we are watching it snow as we are under another winter storm warning for the next couple of days, just hoping it clears up here and in Atlanta by Friday so we can start our trip to what I hope is a warm Florida. We are looking forward to the trip and a chance to meet up with a couple that we met during the Kripalu retreat. ‘See’ you next week.
And I’m back! I noticed that I didn’t mention anything in the last post about how my buddy Parkinson’s and I are getting along. Things are pretty much stable, still some arm stiffness and shuffling when I walk and the occasional balance problem. I don’t have the sticky feet problem nearly as often nor the internal tremors so, all in all, things are OK.
As I have noted before, I follow many other blogs, websites, and Twitter accounts related to Parkinson’s, probably close to 50 if I took the time to count them all. I have been planning to add a page with the list of who I follow to this blog and maybe that will happen one of these days soon, but remember, apathy is a non-motor symptom so don’t hold your breath. 🙂
One of the blogs I follow is Tremors in the Universe written by Robert Baittie. In a recent post, Chapter 36 Whistle while you twerk, he talks about another symptom of PD, micrographia and from there he… well here, I’ll let you read it yourself picking up where he defines micrographia:
“The symptom as it appears in association with Parkinson’s disease is called micrographia, and in handwriting or penmanship is characterized by abnormally small, cramped handwriting and/or the progression to continually smaller handwriting. It’s cause, according to the National Parkinson’s Foundation is attributed to a common feature of PD which is a slowing of movement, and feelings of muscle stiffness in the hands and fingers. Loss of automatic motion also affects the easy, flowing motion of handwriting. This can impact even simple writing taskssuch as signing your name.”
“Which started me thinking.”
“Parkinson’s disease is named after the English doctor James Parkinson, who published the first detailed description in An Essay on the Shaking Palsy in 1817.”
“In 1817”.
“Might there be any signatures of record prior to 1817 that show signs of a typical Parkinson’s style of writing?”
“Of what importance was that to me? Well my entire attitude around my diagnosis of Parkinson’s has been about succeeding with the disease and having and maintaining a positive attitude towards dealing with it. I was curious if there might be individuals who had continued to achieve and possibly even made a mark in history while in the midst of dealing with PD? At a time when they didn’t have today’s technology, support and treatments. Obviously this was all pure speculation because prior to 1817 it was not classified or known as Parkinson’s. But I was curious none the less.”
“The first thing I did was to Google micrographia thinking I might find a visual example of the malady that I could use for comparison to any earlier documents I might come across. And sure enough, in the Wikipedia Encyclopedia a writing example of a Parkinson’s patient.” “The next step was to begin searching documents prior to 1817 that might offer a similar writing style”.
“Now I was not going to go about this by pure happenstance, on the contrary, I had a hunch and I had definite place in mind to start. There was one document in particular I wanted to take a look at. And sure enough my hunch or maybe I should say my “intuition” was correct.”
Stephen Hopkins
“Here was my individual of notoriety that I felt had that characteristic signature at a time when the flourish of stylized and ornate signatures and penmanship were the art form of the day.”
“Here was a man among men. Stephen Hopkins. Born in 1707 and died in 1785 at the age of 78. He came from a prominent Rhode Island family and most definitely left his mark upon a nation. Not only did my initial examination of the document serve to heighten my belief, but further readings of his biography removed all doubt. His own admission was proof enough for me.”
“In the summer of 1776, while holding his right hand with his left, saying, “although my hand trembles, my heart does not” Stephen Hopkins, a Rhode Island delegate to the First Continental Congress, signed the Declaration of Independence.”
“It gave me tremendous pause to sit and look at that Declaration of Independence and those signatures and to think about the thoughts that must have been going through Stephen Hopkins mind. Not only could I imagine he had a sense of uncertainty and fear for what the future held for our new country at that time, but he was simultaneously dealing with the uncertainty of and concern for his own health. He held the same questions in his mind then about his health, that millions still hold to this day. What is causing this? What can be done?”
“And as I reread those simple words of Stephen Hopkins, a number of thoughts came to mind. First, I felt a tremendous amount of respect for the man because he was not afraid to share with his friends and colleagues the disease that afflicted him. Especially at a time when there was no explanation he could offer for what ailed him. He openly called attention to and acknowledged his tremor and in doing so said he was not ashamed of it. Second was that he had not allowed his tremor or the disease to limit him. He had continued on with his passion for his work. But most profoundly to me was the double meaning I took from the words as a whole. While obviously in one context he is referring to our young nation and “though his hand trembles” while signing this Declaration of Independence “his heart does not” because he believes this to be the right direction for his country, the other context it speaks to for me is the disease of Parkinson’s itself. The words make the analogy of how I have felt all along. “Although my hand trembles, my heart does not.” It’s that strange sense of the positive and knowing that although I have been diagnosed with Parkinson’s, everything I feel in my heart tells me there is nothing to fear and I will be alright. That I can and will deal with whatever it brings me.”
“Over 230 years later since the documents signing technology is most definitely moving at a rapid pace, and the research being done toward finding a cure for Parkinson’s is as well. But to continue that work and to hasten the success, additional funding is always needed. Volunteers and Foundations continue to spearhead the vast majority of the fundraising efforts but more needs to be done.”
“Given that, I find it extremely ironic that this would be the example of the signature I would find. A statesmen, a member of the First Continental Congress. Because additional support and funding from our government is what is needed to keep progress moving forward and ultimately finding a cure. And so I would like to ask everyone reading this to take the opportunity to write your Congressman with a steady hand to request that they show the heart of our founding fathers and support increased funding for Parkinson’s research. (emphasis added)
Reblog it. ReTweet it. Do it for your self. Or someone you love.
To find out what prompted Robert to research micrographia, read the complete post of Chapter 36 here. I think you will find it interesting and I highly recommend reading some or all of his other ‘Chapters’.
What a great statement “although my hand tremors, my heart does not” and as the Michael J Fox Foundation says “Our challenges don’t define us. Our actions do” We can and will deal with whatever Parkinson’s throws at us on our way to finding a cure.
I also agree that we need to continue to urge Congress to support increased funding for Parkinson’s research. In that vein,the Parkinson’s Action Network (PAN) is sponsoring a Parkinson’s Day of Action on February 26th. They ask that you contact your Representatives and ask for their support. They have provided information here on how to contact your representatives, some sample statements you can use and links to why we need more funding for research. I urge you to join me and PAN on Wednesday, February 26th and contact your Congressional Representatives.
As I write this post, we are watching it snow as we are under another winter storm warning for the next couple of days, just hoping it clears up here and in Atlanta by Friday so we can start our trip to what I hope is a warm Florida. We are looking forward to the trip and a chance to meet up with a couple that we met during the Kripalu retreat. ‘See’ you next week.
And I’m back! I noticed that I didn’t mention anything in the last post about how my buddy Parkinson’s and I are getting along. Things are pretty much stable, still some arm stiffness and shuffling when I walk and the occasional balance problem. I don’t have the sticky feet problem nearly as often nor the internal tremors so, all in all, things are OK.
As I have noted before, I follow many other blogs, websites, and Twitter accounts related to Parkinson’s, probably close to 50 if I took the time to count them all. I have been planning to add a page with the list of who I follow to this blog and maybe that will happen one of these days soon, but remember, apathy is a non-motor symptom so don’t hold your breath. 🙂
One of the blogs I follow is Tremors in the Universe written by Robert Baittie. In a recent post, Chapter 36 Whistle while you twerk, he talks about another symptom of PD, micrographia and from there he… well here, I’ll let you read it yourself picking up where he defines micrographia:
“The symptom as it appears in association with Parkinson’s disease is called micrographia, and in handwriting or penmanship is characterized by abnormally small, cramped handwriting and/or the progression to continually smaller handwriting. It’s cause, according to the National Parkinson’s Foundation is attributed to a common feature of PD which is a slowing of movement, and feelings of muscle stiffness in the hands and fingers. Loss of automatic motion also affects the easy, flowing motion of handwriting. This can impact even simple writing taskssuch as signing your name.”
“Which started me thinking.”
“Parkinson’s disease is named after the English doctor James Parkinson, who published the first detailed description in An Essay on the Shaking Palsy in 1817.”
“In 1817”.
“Might there be any signatures of record prior to 1817 that show signs of a typical Parkinson’s style of writing?”
“Of what importance was that to me? Well my entire attitude around my diagnosis of Parkinson’s has been about succeeding with the disease and having and maintaining a positive attitude towards dealing with it. I was curious if there might be individuals who had continued to achieve and possibly even made a mark in history while in the midst of dealing with PD? At a time when they didn’t have today’s technology, support and treatments. Obviously this was all pure speculation because prior to 1817 it was not classified or known as Parkinson’s. But I was curious none the less.”
“The first thing I did was to Google micrographia thinking I might find a visual example of the malady that I could use for comparison to any earlier documents I might come across. And sure enough, in the Wikipedia Encyclopedia a writing example of a Parkinson’s patient.” “The next step was to begin searching documents prior to 1817 that might offer a similar writing style”.
“Now I was not going to go about this by pure happenstance, on the contrary, I had a hunch and I had definite place in mind to start. There was one document in particular I wanted to take a look at. And sure enough my hunch or maybe I should say my “intuition” was correct.”
Stephen Hopkins
“Here was my individual of notoriety that I felt had that characteristic signature at a time when the flourish of stylized and ornate signatures and penmanship were the art form of the day.”
“Here was a man among men. Stephen Hopkins. Born in 1707 and died in 1785 at the age of 78. He came from a prominent Rhode Island family and most definitely left his mark upon a nation. Not only did my initial examination of the document serve to heighten my belief, but further readings of his biography removed all doubt. His own admission was proof enough for me.”
“In the summer of 1776, while holding his right hand with his left, saying, “although my hand trembles, my heart does not” Stephen Hopkins, a Rhode Island delegate to the First Continental Congress, signed the Declaration of Independence.”
“It gave me tremendous pause to sit and look at that Declaration of Independence and those signatures and to think about the thoughts that must have been going through Stephen Hopkins mind. Not only could I imagine he had a sense of uncertainty and fear for what the future held for our new country at that time, but he was simultaneously dealing with the uncertainty of and concern for his own health. He held the same questions in his mind then about his health, that millions still hold to this day. What is causing this? What can be done?”
“And as I reread those simple words of Stephen Hopkins, a number of thoughts came to mind. First, I felt a tremendous amount of respect for the man because he was not afraid to share with his friends and colleagues the disease that afflicted him. Especially at a time when there was no explanation he could offer for what ailed him. He openly called attention to and acknowledged his tremor and in doing so said he was not ashamed of it. Second was that he had not allowed his tremor or the disease to limit him. He had continued on with his passion for his work. But most profoundly to me was the double meaning I took from the words as a whole. While obviously in one context he is referring to our young nation and “though his hand trembles” while signing this Declaration of Independence “his heart does not” because he believes this to be the right direction for his country, the other context it speaks to for me is the disease of Parkinson’s itself. The words make the analogy of how I have felt all along. “Although my hand trembles, my heart does not.” It’s that strange sense of the positive and knowing that although I have been diagnosed with Parkinson’s, everything I feel in my heart tells me there is nothing to fear and I will be alright. That I can and will deal with whatever it brings me.”
“Over 230 years later since the documents signing technology is most definitely moving at a rapid pace, and the research being done toward finding a cure for Parkinson’s is as well. But to continue that work and to hasten the success, additional funding is always needed. Volunteers and Foundations continue to spearhead the vast majority of the fundraising efforts but more needs to be done.”
“Given that, I find it extremely ironic that this would be the example of the signature I would find. A statesmen, a member of the First Continental Congress. Because additional support and funding from our government is what is needed to keep progress moving forward and ultimately finding a cure. And so I would like to ask everyone reading this to take the opportunity to write your Congressman with a steady hand to request that they show the heart of our founding fathers and support increased funding for Parkinson’s research. (emphasis added)
Reblog it. ReTweet it. Do it for your self. Or someone you love.
To find out what prompted Robert to research micrographia, read the complete post of Chapter 36 here. I think you will find it interesting and I highly recommend reading some or all of his other ‘Chapters’.
What a great statement “although my hand tremors, my heart does not” and as the Michael J Fox Foundation says “Our challenges don’t define us. Our actions do” We can and will deal with whatever Parkinson’s throws at us on our way to finding a cure.
I also agree that we need to continue to urge Congress to support increased funding for Parkinson’s research. In that vein,the Parkinson’s Action Network (PAN) is sponsoring a Parkinson’s Day of Action on February 26th. They ask that you contact your Representatives and ask for their support. They have provided information here on how to contact your representatives, some sample statements you can use and links to why we need more funding for research. I urge you to join me and PAN on Wednesday, February 26th and contact your Congressional Representatives.
As I write this post, we are watching it snow as we are under another winter storm warning for the next couple of days, just hoping it clears up here and in Atlanta by Friday so we can start our trip to what I hope is a warm Florida. We are looking forward to the trip and a chance to meet up with a couple that we met during the Kripalu retreat. ‘See’ you next week.
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