Day 37
Today is the 30th day of taking a full dose of my medication.
I did not get the Pramipexole from the pharmacy due to $107.00 copay! I am hoping that it will be cheaper from express scripts. If it is not, however, I will have to buck up and pay it. Between the co-pay for the prescriptions and $15 for each doctors, OT, PT & AT appointment, Parkinson's disease is going to be expensive!
I am hoping to start taking trapeze every other week. I am not certain that I am strong enough, but there is only one way to find out…
Sunday, August 30, 2015
Friday, August 28, 2015
New Day-New Drug-New Therapy
Day 35
Today is the 28th day of taking a full dose of my medication.
After discussing it with my doctor, I have decided to take an additional drug, Pramipexole. Hopefully, this will help with my current symptoms. Of course, there is a laundry list of side effects, but the ones most common in younger men (most of my doctor's patients are all between 70 and 90, so I am a younger man), are sleepiness, impulse control, binge eating & hyper sexual activity. My wife told me to get a mistress!
I went to PT today and learned three new exercises to preserve my balance. My PT has also suggested that I become involved in "dynamic sports". There is some evidence that suggests involvement in these activities slows the progression of Parkinson's. The PT suggested basketball and I just laughed. What I wanted to do was to hold out my hand and say, " meet the last kid picked gym class!" I suggested single point and static trapeze and he has asked me to send him some video clips to see if they count as a dynamic sports. I hope so, because I really need to get up in the air and out of my head.
I went to my first occupational therapy session today and set some goals.These include using my right hand to button my left shirt sleeve cuff, brush my teeth and work the mouse. If someone told me two years ago that I would be setting the above items as "goals" I would have laughed in their face!
I am waiting on insurance approval for some assistive technology sessions. My OT thinks that it might be possible for me to receive further training on Dragon speech software. Currently, I am only using it for typing, but I know that it can be used to open files, save documents, send email and open and close windows. I have already ordered the updated version for my Mac at work.
Enough for now.
Today is the 28th day of taking a full dose of my medication.
After discussing it with my doctor, I have decided to take an additional drug, Pramipexole. Hopefully, this will help with my current symptoms. Of course, there is a laundry list of side effects, but the ones most common in younger men (most of my doctor's patients are all between 70 and 90, so I am a younger man), are sleepiness, impulse control, binge eating & hyper sexual activity. My wife told me to get a mistress!
I went to PT today and learned three new exercises to preserve my balance. My PT has also suggested that I become involved in "dynamic sports". There is some evidence that suggests involvement in these activities slows the progression of Parkinson's. The PT suggested basketball and I just laughed. What I wanted to do was to hold out my hand and say, " meet the last kid picked gym class!" I suggested single point and static trapeze and he has asked me to send him some video clips to see if they count as a dynamic sports. I hope so, because I really need to get up in the air and out of my head.
I went to my first occupational therapy session today and set some goals.These include using my right hand to button my left shirt sleeve cuff, brush my teeth and work the mouse. If someone told me two years ago that I would be setting the above items as "goals" I would have laughed in their face!
I am waiting on insurance approval for some assistive technology sessions. My OT thinks that it might be possible for me to receive further training on Dragon speech software. Currently, I am only using it for typing, but I know that it can be used to open files, save documents, send email and open and close windows. I have already ordered the updated version for my Mac at work.
Enough for now.
Wednesday, August 26, 2015
People notice
Day 33
Today is the 26th day of taking a full dose of my medication.
Today was Welcome Day at our college and Omarion was the entertainment. Jeff the sound technician has done the audio for our Welcome Program for the last 6 years. Although, I only see Jeff once a year for three or four hours, I just know that is a great person. I cannot explain how I know, I just do. At the end of the day, Jeff looks at me with a sad expression on his face and asks, "what's wrong?" I respond by asking, "what do you mean?" Then, Jeff states, " Come on man. I saw you walk across the entire quad twice, I know something is wrong with you." So, I tell him the truth and let him know that while the news is bad, the prognosis is good.
The entire point of the short post is that people notice. When they mention it, you can tell them the truth or you can just pretend nothing is wrong. At this point, the truth seems to take less effort...
Today is the 26th day of taking a full dose of my medication.
Today was Welcome Day at our college and Omarion was the entertainment. Jeff the sound technician has done the audio for our Welcome Program for the last 6 years. Although, I only see Jeff once a year for three or four hours, I just know that is a great person. I cannot explain how I know, I just do. At the end of the day, Jeff looks at me with a sad expression on his face and asks, "what's wrong?" I respond by asking, "what do you mean?" Then, Jeff states, " Come on man. I saw you walk across the entire quad twice, I know something is wrong with you." So, I tell him the truth and let him know that while the news is bad, the prognosis is good.
The entire point of the short post is that people notice. When they mention it, you can tell them the truth or you can just pretend nothing is wrong. At this point, the truth seems to take less effort...
Tuesday, August 25, 2015
Day 32
Today is the 25th day of taking a full dose of my medication.
Tomorrow is one of the two busiest days of the year for me. 2100 new students and 200 to 400 returning students will come to campus for the welcome program. There is a ceremonial march, greetings from the college president, meals, fun and the major concert. In short, there are a lot of moving pieces and many things which could go wrong. Surprisingly, my level of anxiety is very low. Maybe it is because this is the eighth time that my staff and I have run this event. My anxiety seems to be caused over little things and I wonder why this is.
I had a great deal of muscle soreness when I woke up this morning and I am certain the Parkinson's disease is the cause of much of it. I did a lot of stretching and got the soreness down to a level that was tolerable. Note to self, "must stretch more and stay flexible…
Today is the 25th day of taking a full dose of my medication.
Tomorrow is one of the two busiest days of the year for me. 2100 new students and 200 to 400 returning students will come to campus for the welcome program. There is a ceremonial march, greetings from the college president, meals, fun and the major concert. In short, there are a lot of moving pieces and many things which could go wrong. Surprisingly, my level of anxiety is very low. Maybe it is because this is the eighth time that my staff and I have run this event. My anxiety seems to be caused over little things and I wonder why this is.
I had a great deal of muscle soreness when I woke up this morning and I am certain the Parkinson's disease is the cause of much of it. I did a lot of stretching and got the soreness down to a level that was tolerable. Note to self, "must stretch more and stay flexible…
Monday, August 24, 2015
Day 31
Today is the 24th day of taking a full dose of my medication.
Today marks one month since the diagnosis. I have been on the full dosage of this medication (Azilect) for over three weeks now and I am not seeing the results that I had hoped for. I am shuffling my feet less and at times, it no longer feels like my right foot is stuck to the floor. I would describe my right arm as feeling "looser" than before. It still, however, feels awkward when using my right hand to sign my name, use the mouse or brush my teeth. When I spoke to my neurologist/movement disorder specialist last week, she said that the results would not be "too dramatic," but once again, I had hoped more. I think that I will give the medication a few more days and then call the neurologist back. I am hoping that this is not the "new normal."
I thought that I would attach pics of the pond that I swam in last week. It was very relaxing.
Today is the 24th day of taking a full dose of my medication.
Today marks one month since the diagnosis. I have been on the full dosage of this medication (Azilect) for over three weeks now and I am not seeing the results that I had hoped for. I am shuffling my feet less and at times, it no longer feels like my right foot is stuck to the floor. I would describe my right arm as feeling "looser" than before. It still, however, feels awkward when using my right hand to sign my name, use the mouse or brush my teeth. When I spoke to my neurologist/movement disorder specialist last week, she said that the results would not be "too dramatic," but once again, I had hoped more. I think that I will give the medication a few more days and then call the neurologist back. I am hoping that this is not the "new normal."
I thought that I would attach pics of the pond that I swam in last week. It was very relaxing.
Sunday, August 23, 2015
Day 30
Today is the 23rd day of taking a full dose of my medication.
The other day, my son asked my wife, "Does daddy have Park Slope?" I guess that I will have to be more careful of talking in front of him. What would Park Slope Disease entail? OK, just for the hell of it, here are the symptoms.
Suffering from the delusion that:
You are the most important person in the world
You are the only person that ever had a child
Your dog is a child
Your dog is special and leash laws do not apply to her
You really need multiple SUVs in "No Park Slope"
Pedestrians do not have the right of way in a cross walk
I just spent 6 days in Treadwell NY. I had fun with my wife, son, brother and sister in-law and my two nieces. We swam in a pond, ate good meals and relaxed. It was very a very calming break, but I was home for a few minutes and the anxiety was back. While I have some reasons to be anxious, the severity of it is simply a symptom, so I am labeling it "not real" and turning on the TV.
Today is the 23rd day of taking a full dose of my medication.
The other day, my son asked my wife, "Does daddy have Park Slope?" I guess that I will have to be more careful of talking in front of him. What would Park Slope Disease entail? OK, just for the hell of it, here are the symptoms.
Suffering from the delusion that:
You are the most important person in the world
You are the only person that ever had a child
Your dog is a child
Your dog is special and leash laws do not apply to her
You really need multiple SUVs in "No Park Slope"
Pedestrians do not have the right of way in a cross walk
I just spent 6 days in Treadwell NY. I had fun with my wife, son, brother and sister in-law and my two nieces. We swam in a pond, ate good meals and relaxed. It was very a very calming break, but I was home for a few minutes and the anxiety was back. While I have some reasons to be anxious, the severity of it is simply a symptom, so I am labeling it "not real" and turning on the TV.
Friday, August 21, 2015
Day 28
Today is the 21st day of taking a full dose of my medication.
I have spent some time with my family at Croton on the Hudson and I am now in Franklin which is in Delaware County, NY near Oneonta. It is an idyllic setting with cows, trees, grass and a pond to swim in.
As I think, "I am feeling better..", I am still typing with just my left hand.
Today is the 21st day of taking a full dose of my medication.
I have spent some time with my family at Croton on the Hudson and I am now in Franklin which is in Delaware County, NY near Oneonta. It is an idyllic setting with cows, trees, grass and a pond to swim in.
As I think, "I am feeling better..", I am still typing with just my left hand.
Monday, August 17, 2015
Day 24
Today is the 17th day of taking a full dose of my medication.
Last night, I went to put my son to bed and everything was fine. When I got up, I began shivering uncontrollably. This type of shivering/shaking was beyond anything that I had ever experienced. I could not stop even when I went outside into the 80 degree weather. Later I got sick, had a headache and I was running a fever. I hope that this was a stomached bug and not low blood pressure which is a symptom of Parkinson's. In any case, I am just trying to enjoy my vacation and not worry too much about it.
Today is the 17th day of taking a full dose of my medication.
Last night, I went to put my son to bed and everything was fine. When I got up, I began shivering uncontrollably. This type of shivering/shaking was beyond anything that I had ever experienced. I could not stop even when I went outside into the 80 degree weather. Later I got sick, had a headache and I was running a fever. I hope that this was a stomached bug and not low blood pressure which is a symptom of Parkinson's. In any case, I am just trying to enjoy my vacation and not worry too much about it.
Saturday, August 15, 2015
Day 22
Today is the 15th day of taking a full dose of my medication.
The good news about yesterday was that while the folks from safelite replaced my windshield I had lunch with a colleague. The bad news is that the installer ripped out the microphone for my stereo, so now my blue tooth will not work with my phone! In a few weeks, when things settle down, I will go to the car stereo place that safelite found for me and have it fixed on them. No cost, just another in a line of many inconveniences.
My colleague, Leslie, has had her own neurological challenges, so it was good to chat with her about my diagnosis. We compared neurological tests and traided MRI stories. Leslie and I were in with a group of lucky individuals who were selected to represent the college on a trip to China a few years back. Now we have lunch monthly, trade campus rumors and catch up.
On Saturdays, my son and I walk through the Green Wood Cemetery and go to soccer class. He likes looking at the crosses, particularly the Celtic ones. He is obsessed with soccer and he is really good for a four-year-old. Today, one of the moms asked about my frozen shoulder and I told her about the diagnosis. She told me about her uncle and how long he lived with the disease and what a wonderful life he had. Apparently, he had the same doctor as Michael J. Fox. We also talked about all of the advances that medicine has made since her uncle passed. Unfortunately, we ended the conversation with a story about how he was on a liquid diet toward the end of his life because he could not swallow. It is really odd what people say, but she meant well. In any case, that is not in the prognosis for me.
Today is the 15th day of taking a full dose of my medication.
The good news about yesterday was that while the folks from safelite replaced my windshield I had lunch with a colleague. The bad news is that the installer ripped out the microphone for my stereo, so now my blue tooth will not work with my phone! In a few weeks, when things settle down, I will go to the car stereo place that safelite found for me and have it fixed on them. No cost, just another in a line of many inconveniences.
My colleague, Leslie, has had her own neurological challenges, so it was good to chat with her about my diagnosis. We compared neurological tests and traided MRI stories. Leslie and I were in with a group of lucky individuals who were selected to represent the college on a trip to China a few years back. Now we have lunch monthly, trade campus rumors and catch up.
On Saturdays, my son and I walk through the Green Wood Cemetery and go to soccer class. He likes looking at the crosses, particularly the Celtic ones. He is obsessed with soccer and he is really good for a four-year-old. Today, one of the moms asked about my frozen shoulder and I told her about the diagnosis. She told me about her uncle and how long he lived with the disease and what a wonderful life he had. Apparently, he had the same doctor as Michael J. Fox. We also talked about all of the advances that medicine has made since her uncle passed. Unfortunately, we ended the conversation with a story about how he was on a liquid diet toward the end of his life because he could not swallow. It is really odd what people say, but she meant well. In any case, that is not in the prognosis for me.
Friday, August 14, 2015
Day 21
Today is the 14th day of taking a full dose of my medication.
So far today has been really crazy and is only 12:15 PM! I am attempting to reply to several email communications but not only am I having difficulty typing (thank you Parkinson's), my email keeps going down. In addition, people know that I am on vacation next week and therefore, everyone and their mother is calling me. And when I write that I am being literal. The mothers of two students have called so far today.
On top of all of the above, safellite auto glass repair is coming to replace my windshield and of course, they are late. I may have to cancel my lunch meeting, which is a shame because I was looking forward to getting together with this colleague.
I am avoiding making a "general announcement" concerning my Parkinson's disease, but if related topics come up in conversation I generally tell the person the truth. For example, if someone asks, "I know that you've been going to physical therapy. How is your arm?" At that point, I generally tell that I have recovered from the frozen shoulder but now, I am going to physical therapy for Parkinson's disease. If a friend or coworker makes a statement like, "Wow! You have been taking a lot of sick days" or "Why are you home in the middle of the day?," I generally respond, "I have had a lot of doctors appointments…" If that leads to additional questions then I inform them about my Parkinson's disease. Most people are ill-informed about Parkinson's disease. I know that I was before my diagnosis. People often believe that everyone will end up with cognitive impairment, the shakes and a cane. Therefore, when I tell someone, I can see all the color run out of their face. I quickly explain about Parkinson's being a "boutique disease," that I have very few symptoms and that the prognosis is good. I generally add, "I never asked to go fucking shopping," in reference to the "boutique disease" comment and sometimes that makes the person smile again.
Today is the 14th day of taking a full dose of my medication.
So far today has been really crazy and is only 12:15 PM! I am attempting to reply to several email communications but not only am I having difficulty typing (thank you Parkinson's), my email keeps going down. In addition, people know that I am on vacation next week and therefore, everyone and their mother is calling me. And when I write that I am being literal. The mothers of two students have called so far today.
On top of all of the above, safellite auto glass repair is coming to replace my windshield and of course, they are late. I may have to cancel my lunch meeting, which is a shame because I was looking forward to getting together with this colleague.
I am avoiding making a "general announcement" concerning my Parkinson's disease, but if related topics come up in conversation I generally tell the person the truth. For example, if someone asks, "I know that you've been going to physical therapy. How is your arm?" At that point, I generally tell that I have recovered from the frozen shoulder but now, I am going to physical therapy for Parkinson's disease. If a friend or coworker makes a statement like, "Wow! You have been taking a lot of sick days" or "Why are you home in the middle of the day?," I generally respond, "I have had a lot of doctors appointments…" If that leads to additional questions then I inform them about my Parkinson's disease. Most people are ill-informed about Parkinson's disease. I know that I was before my diagnosis. People often believe that everyone will end up with cognitive impairment, the shakes and a cane. Therefore, when I tell someone, I can see all the color run out of their face. I quickly explain about Parkinson's being a "boutique disease," that I have very few symptoms and that the prognosis is good. I generally add, "I never asked to go fucking shopping," in reference to the "boutique disease" comment and sometimes that makes the person smile again.
Thursday, August 13, 2015
Day 20
Today is the 13th day of taking a full dose of my medication.
I went to the dentist for a cleaning today. If you have been reading this blog , then you know that Charlie, my dentist, is the one who convinced me to go back the the neurologist and get her to listen to me and review my symptoms. This lead to the subsequent appointment with the Movement Disorder Specialist and the diagnosis. I thanked him again...
Today is the 13th day of taking a full dose of my medication.
I went to the dentist for a cleaning today. If you have been reading this blog , then you know that Charlie, my dentist, is the one who convinced me to go back the the neurologist and get her to listen to me and review my symptoms. This lead to the subsequent appointment with the Movement Disorder Specialist and the diagnosis. I thanked him again...
Wednesday, August 12, 2015
Day 19
Today is the 12th day of taking a full dose of my medication. I have recently read online that it may take up to eight weeks for my medication to start working. Oh well, I guess that I will have to be patient.
If you have been reading this blog you may remember that my Movement Disorder Specialist thinks that my frozen shoulder (which originally masked my Parkinson's disease) was actually caused by the Parkinson's disease itself. It is important to note that there is research supporting her theory:
Frozen shoulder and other shoulder disturbances in Parkinson's disease
In at least 8% of the patients frozen shoulder was the first symptom of
disease, occurring 0-2 years prior to the onset of more commonly recognized features. Parkinson's disease should be added to the list of
causes of frozen shoulder, and clinicians must be aware that the latter
is often the presenting symptom of Parkinson's disease.
I should also point out that it took exactly one Google search and a single click for me to find out this information! Is this information that an orthopedist should know? I would argue that it is. Is an orthopedist wrong for diagnosing you with and treating you for frozen shoulder? No, but when someone points out that their gate is off and that they are holding their arm in an awkward way, it might be important for you to speak to the patient's neurologist and suggest this as a possibility. In fairness, my orthopedist, he did refer me to a neurologist. This neurologist saw me for less than 15 minutes and diagnosed me with carpal tunnel syndrome. Had the two doctors spoken to each other and had they been knowledgeable about the link between frozen shoulder and Parkinson's disease, I may have gotten treatment a year earlier! Am I angry at anyone about this misdiagnosis? No (well maybe my original neurologist). I am, however, upset especially about the time and sick days that I lost to needless doctors appointments and I wish that I would have listened to my wife when she suggested that these doctors were wrong.
The human body is an amazing thing and often times, the skeletal system and different organs are treated by specialists who do not speak to each other or understand that problems with the skeletal system can also affect or be caused by the brain and other organs. In short, a patient is more than the sum of her or his individual parts and doctors should take the time to speak to each other. I have attempted to call my orthopedist twice and share this information with him, but I am still waiting on a call back…
I am going to see Nicole, my therapist, tonight. I am looking forward to discussing this and other issues with her.
Today is the 12th day of taking a full dose of my medication. I have recently read online that it may take up to eight weeks for my medication to start working. Oh well, I guess that I will have to be patient.
If you have been reading this blog you may remember that my Movement Disorder Specialist thinks that my frozen shoulder (which originally masked my Parkinson's disease) was actually caused by the Parkinson's disease itself. It is important to note that there is research supporting her theory:
Frozen shoulder and other shoulder disturbances in Parkinson's disease
In at least 8% of the patients frozen shoulder was the first symptom of
disease, occurring 0-2 years prior to the onset of more commonly recognized features. Parkinson's disease should be added to the list of
causes of frozen shoulder, and clinicians must be aware that the latter
is often the presenting symptom of Parkinson's disease.I should also point out that it took exactly one Google search and a single click for me to find out this information! Is this information that an orthopedist should know? I would argue that it is. Is an orthopedist wrong for diagnosing you with and treating you for frozen shoulder? No, but when someone points out that their gate is off and that they are holding their arm in an awkward way, it might be important for you to speak to the patient's neurologist and suggest this as a possibility. In fairness, my orthopedist, he did refer me to a neurologist. This neurologist saw me for less than 15 minutes and diagnosed me with carpal tunnel syndrome. Had the two doctors spoken to each other and had they been knowledgeable about the link between frozen shoulder and Parkinson's disease, I may have gotten treatment a year earlier! Am I angry at anyone about this misdiagnosis? No (well maybe my original neurologist). I am, however, upset especially about the time and sick days that I lost to needless doctors appointments and I wish that I would have listened to my wife when she suggested that these doctors were wrong.
The human body is an amazing thing and often times, the skeletal system and different organs are treated by specialists who do not speak to each other or understand that problems with the skeletal system can also affect or be caused by the brain and other organs. In short, a patient is more than the sum of her or his individual parts and doctors should take the time to speak to each other. I have attempted to call my orthopedist twice and share this information with him, but I am still waiting on a call back…
I am going to see Nicole, my therapist, tonight. I am looking forward to discussing this and other issues with her.
Tuesday, August 11, 2015
Day 19
Today is the 11th day of taking a full dose of my medication. My lower back is really sore. I am not certain if this is a symptom of the disease or a side effect of the medication, but I am almost certain that it is not from working out.
The more that I hear and read about Parkinson's disease, the more I learn that many people take their medication, see their doctor every three months and live relatively symptom-free lives. I am hoping that this will be the case with me. My doctor thinks so and I am following her lead!
Compared to many Parkinson's patients, I have only a few symptoms. Before the Movement Disorder Specialist diagnosed me with Parkinson's disease, my neurologist blurted out, "These are all the classic signs of Parkinson's." Keep in mind that this was after keeping me waiting for over two and a half hours and seeing me for less than 10 minutes! I took the next day off from work and spent the majority of the day searching for a Movement Disorder Specialist and scheduling an appointment. I somehow managed to get a great doctor to see me in two weeks. In those two weeks, I attempted to stay away from the internet, but I could not help myself. I stumbled it upon the following questionnaire on the Michael J Fox foundation website.
Some facts about Parkinson's from Johns Hopkins:
There are approximately 60,000 people diagnosed with the disease per year. The average age of onset of symptoms is 60, but five to ten percent of patients have symptoms before the age of 40. The prevalence is expected to triple in the next 50 years.
...25 to 40% of patients have clinically significant anxiety disorders. These can involve problems with generalized and nonspecific anxiety, phobias of going out in public or being in crowded or closed spaces, or panic disorder, which was seen in 25 percent of patients in some series.
I think that that is enough for today.
Today is the 11th day of taking a full dose of my medication. My lower back is really sore. I am not certain if this is a symptom of the disease or a side effect of the medication, but I am almost certain that it is not from working out.
The more that I hear and read about Parkinson's disease, the more I learn that many people take their medication, see their doctor every three months and live relatively symptom-free lives. I am hoping that this will be the case with me. My doctor thinks so and I am following her lead!
Compared to many Parkinson's patients, I have only a few symptoms. Before the Movement Disorder Specialist diagnosed me with Parkinson's disease, my neurologist blurted out, "These are all the classic signs of Parkinson's." Keep in mind that this was after keeping me waiting for over two and a half hours and seeing me for less than 10 minutes! I took the next day off from work and spent the majority of the day searching for a Movement Disorder Specialist and scheduling an appointment. I somehow managed to get a great doctor to see me in two weeks. In those two weeks, I attempted to stay away from the internet, but I could not help myself. I stumbled it upon the following questionnaire on the Michael J Fox foundation website.
- Have you been getting slower in your usual daily activities?
- Is your handwriting smaller?
- Is your speech slurred or softer?
- Do you have trouble arising from a chair?
- Do your lips, hand, arms and/or legs shake?
- Have you noticed more stiffness?
- Do you have trouble buttoning buttons or dressing?
- Do you shuffle your feet and/or take smaller steps when you walk?
- Do your feet seem to get stuck to the floor when walking or turning?
- Have you or others noted that you don't swing one arm when walking?
- Do you have more trouble with your balance?
- Have you or others noted that you stoop or have abnormal posture?
Some facts about Parkinson's from Johns Hopkins:
There are approximately 60,000 people diagnosed with the disease per year. The average age of onset of symptoms is 60, but five to ten percent of patients have symptoms before the age of 40. The prevalence is expected to triple in the next 50 years.
...25 to 40% of patients have clinically significant anxiety disorders. These can involve problems with generalized and nonspecific anxiety, phobias of going out in public or being in crowded or closed spaces, or panic disorder, which was seen in 25 percent of patients in some series.
I think that that is enough for today.
Monday, August 10, 2015
Today is the 10th day of taking a full dose of my medication.
When I mention that Parkinson's is a boutique disease, I often get blank stares. The best explanation of the terminology that I could find was on michaeljfox.org
Parkinson’s disease is sometimes referred to as a "boutique" disease: It is unique to each person. You cannot predict which symptoms you will get, and when you will get them. There are broad paths of similarity as the disease progresses, but there is no guarantee that what you see is what you'll get. Some people wind up in wheelchairs; others still run marathons. Some can't clasp a necklace, while others make necklaces by hand.
I really do not have anything to post today except that I am eager for some symptom relief.
Sunday, August 9, 2015
Saturday, August 8, 2015
Day 16
Today is the 8th day of taking a full dose of my medication.
Took my son to soccer class and got in an argument with some crazy dog people who would not keep their dogs on a leash. (I really overreacted, but all the Soccer Moms and Dads and crazy dog people did too. At least I did not drop the F bomb.)Took a nap, played with my son and his friend and watched Orange Is The New Black with my wife.
Did not think about Parkinson's!
Today is the 8th day of taking a full dose of my medication.
Took my son to soccer class and got in an argument with some crazy dog people who would not keep their dogs on a leash. (I really overreacted, but all the Soccer Moms and Dads and crazy dog people did too. At least I did not drop the F bomb.)Took a nap, played with my son and his friend and watched Orange Is The New Black with my wife.
Did not think about Parkinson's!
Friday, August 7, 2015
Day 15
Today is the 7th day of taking a full dose of my medication and once again, I brushed my teeth this morning with my right hand and it felt less awkward. My right arm seems to be a little more relaxed but my right foot is still arching and having my toes curl under is driving me crazy!
Had a wonderful time today at Rockaway Beach with my family today. For Ocean and I it was our first time at the "Irish Riviera." Just like the NJ shore, the food at the beach was totally over priced, but unlike the food at the Point Pleasant Beach board walk, it was actually good!
My son loves standing up to his knees in the water while the waves crash. He loves the pulling feeling of the water as the waves go back out and his feet sink deeper into the sand. He was just standing there, trying to balance and giggling. Then, he looked up at me and exclaimed, "...the earth is moving..."
It was a good day!
Today is the 7th day of taking a full dose of my medication and once again, I brushed my teeth this morning with my right hand and it felt less awkward. My right arm seems to be a little more relaxed but my right foot is still arching and having my toes curl under is driving me crazy!
Had a wonderful time today at Rockaway Beach with my family today. For Ocean and I it was our first time at the "Irish Riviera." Just like the NJ shore, the food at the beach was totally over priced, but unlike the food at the Point Pleasant Beach board walk, it was actually good!
My son loves standing up to his knees in the water while the waves crash. He loves the pulling feeling of the water as the waves go back out and his feet sink deeper into the sand. He was just standing there, trying to balance and giggling. Then, he looked up at me and exclaimed, "...the earth is moving..."
It was a good day!
Thursday, August 6, 2015
Day 14
Today is the 6th day of taking a full dose of my medication and I brushed my teeth this morning with my right hand! It actually felt a little less awkward! Is this a placebo effect or are things beginning to change?
Moments ago, one of my employees delivered a signature stamp to the office. My hope is that I will not need it for very long, but I will have to use it until the medication kicks in. About two months prior to my diagnosis, I started to go back to therapy and I am so glad that I did. I cannot imagine going through this period of my life without a therapist. The mold, the temporary relocation of my family, the news that I will need yet another dental implant and the Parkinson's diagnosis would have been too much to bear on my own. Everyone needs a therapist. Last night, Nicole, my therapist and I discussed the possibility of telling my parents about my diagnosis. If you have been reading this blog then you already know that originally, I was going to spare them the bad news. They are both about to become octogenarians, so with any luck, they will never see me display any visible symptoms. The reason that I am rethinking this decision is that I would hate for them to hear about from someone else. My current plan is to tell the next time my family and I visit.
Any advice? Should I tell them? Join the blog and leave a comment.
Today is the 6th day of taking a full dose of my medication and I brushed my teeth this morning with my right hand! It actually felt a little less awkward! Is this a placebo effect or are things beginning to change?
Moments ago, one of my employees delivered a signature stamp to the office. My hope is that I will not need it for very long, but I will have to use it until the medication kicks in. About two months prior to my diagnosis, I started to go back to therapy and I am so glad that I did. I cannot imagine going through this period of my life without a therapist. The mold, the temporary relocation of my family, the news that I will need yet another dental implant and the Parkinson's diagnosis would have been too much to bear on my own. Everyone needs a therapist. Last night, Nicole, my therapist and I discussed the possibility of telling my parents about my diagnosis. If you have been reading this blog then you already know that originally, I was going to spare them the bad news. They are both about to become octogenarians, so with any luck, they will never see me display any visible symptoms. The reason that I am rethinking this decision is that I would hate for them to hear about from someone else. My current plan is to tell the next time my family and I visit.
Any advice? Should I tell them? Join the blog and leave a comment.
Wednesday, August 5, 2015
Day 13
Today is the 5th day of taking a full dose of my medication.
Today is the 5th day of taking a full dose of my medication.
Not much to post about today. I am still tired of using my left hand to work the mouse and I am experiencing some soreness and muscle cramps. I think that these cramps are Parkinson's-related. I have had cramps before, but not in the same muscle groups. In addition, unlike past cramps, these do not go away regardless of the amount of water I drink and bananas I eat.
I would get a massage, but how do you ask another person to massage your quads and glutes?
Tuesday, August 4, 2015
Day 12
Today is the fourth day of taking a full dose of my medication and I am eager to see results.
I began the day by teaching my two spinning classes. For over 15 years, I have taught spinning at Credit Suisse, many of my students have been there since day one and they feel like family. I know all about their children and their accomplishments, their aging parents and illnesses in their families. Two of them know about my diagnosis and I find it helpful to talk to them about it.
After my classes, I went to the New York Stem Cell Research Center and had a biopsy done for a Parkinson's study. I posted yesterday that I thought that doing something for others would make me feel less powerless and I was right. The people there are really nice and the entire process was quick and painless. As an added bonus, they gave me a $50 American Express gift card! I am going to give it to my wife for putting up with all my shit!
By 1:30pm I was at my first physical therapy appointment. Waiting in the lobby was thoroughly depressing. While there was one person about 15 years older than me, most of the patients had at least 20 years on me. Many of them were caught up in the downward spiral of injury leading to inactivity, leading to gaining weight, leading to further injury. On the positive side, the physical therapist thought that I was doing great and said that I would probably only need three or four visits for now! He is going to ask the doctor to write a script for occupational therapy, but he feels that this could be handled in three or four appointments as well. The therapist was a nice guy, but I could have done without the laundry list of Parkinson's symptoms! Especially when he implied that they were all an eventual reality. It is boutique disease after all!
Special note to those in the medical profession: Offer to help Parkinson's patients who have to fill out medical forms! I really like NYU medical center, but there are a few things that they could do to improve. First, based on the diagnosis, ask the patient if she or he needs help filling out forms. Second, since they have all of your records already, they should have certain fields on the forms fill in automatically. What do they call that? Auto fill? How many times do I have fill out a form listing my name, address, date of birth and cell phone number? What were the photo and finger print scan for anyway?
Random thought: "I need a massage!"
Overall, it was a very good day.
Today is the fourth day of taking a full dose of my medication and I am eager to see results.
I began the day by teaching my two spinning classes. For over 15 years, I have taught spinning at Credit Suisse, many of my students have been there since day one and they feel like family. I know all about their children and their accomplishments, their aging parents and illnesses in their families. Two of them know about my diagnosis and I find it helpful to talk to them about it.
After my classes, I went to the New York Stem Cell Research Center and had a biopsy done for a Parkinson's study. I posted yesterday that I thought that doing something for others would make me feel less powerless and I was right. The people there are really nice and the entire process was quick and painless. As an added bonus, they gave me a $50 American Express gift card! I am going to give it to my wife for putting up with all my shit!
By 1:30pm I was at my first physical therapy appointment. Waiting in the lobby was thoroughly depressing. While there was one person about 15 years older than me, most of the patients had at least 20 years on me. Many of them were caught up in the downward spiral of injury leading to inactivity, leading to gaining weight, leading to further injury. On the positive side, the physical therapist thought that I was doing great and said that I would probably only need three or four visits for now! He is going to ask the doctor to write a script for occupational therapy, but he feels that this could be handled in three or four appointments as well. The therapist was a nice guy, but I could have done without the laundry list of Parkinson's symptoms! Especially when he implied that they were all an eventual reality. It is boutique disease after all!
Special note to those in the medical profession: Offer to help Parkinson's patients who have to fill out medical forms! I really like NYU medical center, but there are a few things that they could do to improve. First, based on the diagnosis, ask the patient if she or he needs help filling out forms. Second, since they have all of your records already, they should have certain fields on the forms fill in automatically. What do they call that? Auto fill? How many times do I have fill out a form listing my name, address, date of birth and cell phone number? What were the photo and finger print scan for anyway?
Random thought: "I need a massage!"
Overall, it was a very good day.
Monday, August 3, 2015
Day 11
Today is the third day on my full dose of the medication.
Since this is a "journal" style blog, it really only makes sense if you start reading from the very first post. I have kept the posts short, so starting from the beginning should not be that challenging. I will be the first to admit that I hate blogs and only read one or two authored by friends. So if you just want to skim this and not join please do not sweat it. While it would be nice if a few people joined and made comments, I will continue to write for my own therapeutic reasons regardless of the number of followers and comments posted.
Tomorrow is my first physical therapy appointment. I have had physical therapy before for frozen shoulder (which I now know was probably caused by Parkinson's disease), but I do not know what to expect this time. I am thinking that I will stop at the New York Stem Cell Foundation and allow them to do a skin biopsy, which will be used for Parkinson's studies. Other than taking my medication, going to physical therapy and staying active, there is not a whole lot that I can do. I am hoping that giving a skin biopsy and taking part in the research study at NYU will help others and be somewhat empowering.
Today is the third day on my full dose of the medication.
Since this is a "journal" style blog, it really only makes sense if you start reading from the very first post. I have kept the posts short, so starting from the beginning should not be that challenging. I will be the first to admit that I hate blogs and only read one or two authored by friends. So if you just want to skim this and not join please do not sweat it. While it would be nice if a few people joined and made comments, I will continue to write for my own therapeutic reasons regardless of the number of followers and comments posted.
Tomorrow is my first physical therapy appointment. I have had physical therapy before for frozen shoulder (which I now know was probably caused by Parkinson's disease), but I do not know what to expect this time. I am thinking that I will stop at the New York Stem Cell Foundation and allow them to do a skin biopsy, which will be used for Parkinson's studies. Other than taking my medication, going to physical therapy and staying active, there is not a whole lot that I can do. I am hoping that giving a skin biopsy and taking part in the research study at NYU will help others and be somewhat empowering.
Sunday, August 2, 2015
Day 10
Second day on the full dosage of Azilect.
People have begun to ask, "How is Kate doing with all of this?" (Thanks Bill Borden.) I asked her and she said, "It is a relief, because now we know what it is and we know what to do... ...I am a little worried because there are no guarantees, but then again, there never are..." Before the diagnosis when we only thought it might be Parkinson's she said, "Now let me be strong for you..."
I love that woman.
Random thought "I like this remix," There is a better version on her new album.
Second day on the full dosage of Azilect.
People have begun to ask, "How is Kate doing with all of this?" (Thanks Bill Borden.) I asked her and she said, "It is a relief, because now we know what it is and we know what to do... ...I am a little worried because there are no guarantees, but then again, there never are..." Before the diagnosis when we only thought it might be Parkinson's she said, "Now let me be strong for you..."
I love that woman.
Random thought "I like this remix," There is a better version on her new album.
Saturday, August 1, 2015
Day 9,
Today, I finally started taking a full dose of my medication! I cannot wait for my current symptoms to go away! Other than the toes on my right foot constantly curling under (which was driving me crazy), today was a great day. I spent the entire day with my son at soccer class, the Splash Pad at Prospect Park, and then at home with my wife, son and good friend Sam.
A few times while writing these first nine posts, I have felt the urge to type up a laundry list of everything bad that has ever happened to me end with something trite like, "How much more can I take?" Instead, I just shrug and think, "There has been more good than bad... ...a lot more."
Today, I finally started taking a full dose of my medication! I cannot wait for my current symptoms to go away! Other than the toes on my right foot constantly curling under (which was driving me crazy), today was a great day. I spent the entire day with my son at soccer class, the Splash Pad at Prospect Park, and then at home with my wife, son and good friend Sam.
A few times while writing these first nine posts, I have felt the urge to type up a laundry list of everything bad that has ever happened to me end with something trite like, "How much more can I take?" Instead, I just shrug and think, "There has been more good than bad... ...a lot more."
Subscribe to:
Posts (Atom)