Well I think Fall has finally arrived here on the Gulf Coast and with it came high winds, cooler temps and a miserable soggy drizzle.
It didn't take long for me to learn what this was going to mean for me this year. I have always been "cold natured" and therefore have always been happier in colder temps than warm. Last night I got my first indication that may have to change.
First let me address my Parkinson's more specifically. For those of you who know Parkinson's you know it is as varied as people are. Some experience resting tremors, some experience muscle stiffness (dystonia) and others involuntary movements (dyskinesia). My PD is more of the dystonia version and is particularly pronounced in my right foot. My tremor is less pronounced now with the meds.
The tremor in my right hand had always been an "intention tremor" rather the typical Parkinson's "resting tremor." Meaning I don't typically see a tremor until my hand needs to got to work. For example, screwing a screw into wood, using a mouse, etc... I can typically get a few minutes of work out of my hand before the tremor begins and then worsens pretty rapidly. This has been delayed somewhat significantly with the medication (Stalevo, Azilect and COQ10) but the more tired I get the more "break through" I experience. Two other oddities about my tremor are an intense tremor with a hard yawn, but it only last as long as the yawn...weird. Second, and perhaps more significantly, when I get a chill my tremor comes on with a vengeance.
What this means for me this winter is being more aware of my body temp. The chill on my skin I used to enjoy has now become my enemy. The chill leads to muscle cramps and aggravated dystonia in short order. Intense muscle stiffness and difficulty walking are the end result. Last night, for the first time, I experienced pain in my right arm.
Like a boxer fighting a larger opponent I am trying to "bob and weave" to keep him from landing a hard blow. Every time PD throws a punch I am just hoping "he" doesn't land it.
I am hoping that being forewarned is being "forearmed" and I can adjust well enough to still enjoy my favorite time of year...time will tell.
Thursday, November 10, 2011
Monday, November 7, 2011
Hey! Remember me? I'm your PD....
Well, it was bound to happen....
As it is, on a good day mornings are particularly difficult for me as it is usually the longest period I go without medication. An extended "off" period if you will. This past Sunday my wife was out of town so it fell on me to get my son and I up, dressed and out the door for church. Everything was going pretty much according to plan until I pulled into the parking lot of our church and suddenly remembered that I had not taken my morning dose of Stalevo. After a brief moment of panic I realized I had not died and thought, "Eh...don't need it."
Well about 15 minutes into church I felt the familiar stiffness in my legs and the sudden and intense cramping in my feet. It was my PD tapping me on the shoulder and reassuring me that yes, in fact, "it" was still here. Midway through church I was becoming increasingly more uncomfortable. By the end of church I was having difficulty standing and my shuffling gait was in full effect.
I learned two things Sunday. One, the medication I currently take (Stalevo, Azilect and COQ10) is in fact helping with my symptoms. Two, my PD is not going anywhere. This realization was both alarming and reassuring. I was alarmed that my symptoms were so pronounced without my medication but reassured that the medication was, at least at this point, managing my illness.
The experience was just another stepping stone on my path of accepting both my illness and it's affect on my life. This lead to my decision to challenge Mr. PD to see if I can determine just where my limits are.
"Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light."
Dylan Thomas
Stay tuned......
As it is, on a good day mornings are particularly difficult for me as it is usually the longest period I go without medication. An extended "off" period if you will. This past Sunday my wife was out of town so it fell on me to get my son and I up, dressed and out the door for church. Everything was going pretty much according to plan until I pulled into the parking lot of our church and suddenly remembered that I had not taken my morning dose of Stalevo. After a brief moment of panic I realized I had not died and thought, "Eh...don't need it."
Well about 15 minutes into church I felt the familiar stiffness in my legs and the sudden and intense cramping in my feet. It was my PD tapping me on the shoulder and reassuring me that yes, in fact, "it" was still here. Midway through church I was becoming increasingly more uncomfortable. By the end of church I was having difficulty standing and my shuffling gait was in full effect.
I learned two things Sunday. One, the medication I currently take (Stalevo, Azilect and COQ10) is in fact helping with my symptoms. Two, my PD is not going anywhere. This realization was both alarming and reassuring. I was alarmed that my symptoms were so pronounced without my medication but reassured that the medication was, at least at this point, managing my illness.
The experience was just another stepping stone on my path of accepting both my illness and it's affect on my life. This lead to my decision to challenge Mr. PD to see if I can determine just where my limits are.
"Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light."
Dylan Thomas
Stay tuned......
Friday, November 4, 2011
And the Saga Continues
Well, I am nearing my check up with my neuro for a update on the switch to Stalevo from Sinemet.
The Stalevo has for the most part worked better than the Sinemet as far as my motor related symptoms go, with the exception of periods of fatigue ranging from mild to severe that does not seem related to my activity level but seems more closely related to my stress level. I have noticed "break through" as I get tired, particularly with the dystonia in my feet.
I experienced one fall episode but I, at this point, have written it off as getting out of bed too quickly. Mornings are always worse. A fact I think is due to it being the longest period of the day that I go without medication. For now the most debilitating issue I have been dealing with is the constant fatigue. I say constant but it is better described as waves that come and go and linger for varying periods of time. My memory seems to have worsened slightly or perhaps I am just becoming more aware of it. Unfortunately that feeds my fear of dementia which has contributed to what I am beginning to feel is a depression that is settling over me.
Lately I am finding it more and more difficult to stay focused and motivated. After discussing the issue with my older brother who has won his first battle with cancer I have decided to at least consider the possibility of an anti-depressant. During his battle with cancer and the associated effects of chemo and radiation he accepted antidepressants as part of his treatment regime and has convinced me of its value.
I am slowly coming to terms with my PD. A lengthy conversation with my brother and his wife was philosophically changing experience for me. Sure, I accepted the initial diagnosis when I received it but quickly dismissed it as being in anyway relevant to my life. PD has a way of reminding you that it is. The realization of fighting a war that you know you will lose and being able to accept the small victories along the way is something I am still trying to wrap my mind around. I was a bit envious of my brother and his dragon, cancer. It was something that could be slayed, eradicated. PD on the other hand is a vaporous amorphous apparition that does not lend itself to defeat, at least for now. Having said that, I have now decided that I am unwilling to slowly succumb to the night. I will fight this....
Let's get it on.....
The Stalevo has for the most part worked better than the Sinemet as far as my motor related symptoms go, with the exception of periods of fatigue ranging from mild to severe that does not seem related to my activity level but seems more closely related to my stress level. I have noticed "break through" as I get tired, particularly with the dystonia in my feet.
I experienced one fall episode but I, at this point, have written it off as getting out of bed too quickly. Mornings are always worse. A fact I think is due to it being the longest period of the day that I go without medication. For now the most debilitating issue I have been dealing with is the constant fatigue. I say constant but it is better described as waves that come and go and linger for varying periods of time. My memory seems to have worsened slightly or perhaps I am just becoming more aware of it. Unfortunately that feeds my fear of dementia which has contributed to what I am beginning to feel is a depression that is settling over me.
Lately I am finding it more and more difficult to stay focused and motivated. After discussing the issue with my older brother who has won his first battle with cancer I have decided to at least consider the possibility of an anti-depressant. During his battle with cancer and the associated effects of chemo and radiation he accepted antidepressants as part of his treatment regime and has convinced me of its value.
I am slowly coming to terms with my PD. A lengthy conversation with my brother and his wife was philosophically changing experience for me. Sure, I accepted the initial diagnosis when I received it but quickly dismissed it as being in anyway relevant to my life. PD has a way of reminding you that it is. The realization of fighting a war that you know you will lose and being able to accept the small victories along the way is something I am still trying to wrap my mind around. I was a bit envious of my brother and his dragon, cancer. It was something that could be slayed, eradicated. PD on the other hand is a vaporous amorphous apparition that does not lend itself to defeat, at least for now. Having said that, I have now decided that I am unwilling to slowly succumb to the night. I will fight this....
Let's get it on.....
Friday, October 7, 2011
Baby Steps....
Well it has been a week since my follow-up and the news has been more good than bad. My neuro switched me from the Sinemet to Stalevo in hopes of more prolonged relief throughout the day. The news so far is noticeable improvement but still not where I was when I originally started on the Sinemet back in June. I am starting to think that the difference is just progression of the PD and probably lost ground at this point. After switching to Stalevo experienced headaches and nausea again but it only lasted about four days.
As for the symptoms...a mixed bag. The dystonia in my feet has returned but my energy level seems greatly increased. Muscle spasms have decreased significantly although occasionally, particularly when I am tired, I have these really annoying muscle twitches in my right arm, right leg and right foot.
I have noticed that I have been experiencing what I call "spatial problems." By this I mean when I try to walk through an open door I hit the door jam. I have problems judging distances when driving and have learned to allow extra stopping distance to compensate. I have read this is a common experience with PD but my neuro tells me it is not related and may be a vision problem. Only one way to find out, next stop....Optometrist.
My current meds;
Stalevo 125, three times a day
Azilect 1mg, once a day
COQ10 1200mg a day
Perhaps the most troubling aspect that has developed has been a "funk" that I feel like I have slowly been sinking into. I have difficulty staying focused and motivated and my concentration on tasks is almost completely gone. I have been thinking of talking with my neuro about adding an anti-depressant to my treatment plan. I am concerned about the mix of the PD meds and the anti-depressant so, for now at least, I intend on further research before making a decision.
More soon as this journey continues....
As for the symptoms...a mixed bag. The dystonia in my feet has returned but my energy level seems greatly increased. Muscle spasms have decreased significantly although occasionally, particularly when I am tired, I have these really annoying muscle twitches in my right arm, right leg and right foot.
I have noticed that I have been experiencing what I call "spatial problems." By this I mean when I try to walk through an open door I hit the door jam. I have problems judging distances when driving and have learned to allow extra stopping distance to compensate. I have read this is a common experience with PD but my neuro tells me it is not related and may be a vision problem. Only one way to find out, next stop....Optometrist.
My current meds;
Stalevo 125, three times a day
Azilect 1mg, once a day
COQ10 1200mg a day
Perhaps the most troubling aspect that has developed has been a "funk" that I feel like I have slowly been sinking into. I have difficulty staying focused and motivated and my concentration on tasks is almost completely gone. I have been thinking of talking with my neuro about adding an anti-depressant to my treatment plan. I am concerned about the mix of the PD meds and the anti-depressant so, for now at least, I intend on further research before making a decision.
More soon as this journey continues....
Tuesday, September 27, 2011
One Step Forward, Two Steps Back
Well, here we are some weeks down the road and I am feeling like I am walking backwards. All my initial symptoms have returned and I have accumulated new ones.
My tremor has returned to the initial visit stage. Not terribly pronounced but it manifests itself when I am tired or when I am performing repetitive actions, like clicking a mouse. The muscle soreness has returned as has the dystonia albeit to a lesser extent. The new one, and perhaps the most frightening, is the postural instability.
My next appointment is this Thursday and I already have many questions. I feel "ahead of the curve" and not in a good way. I was honestly hoping for slower progression with perhaps a year or two at my initial visit point. That appears to have been overly optimistic.
More after Thursday.....
My tremor has returned to the initial visit stage. Not terribly pronounced but it manifests itself when I am tired or when I am performing repetitive actions, like clicking a mouse. The muscle soreness has returned as has the dystonia albeit to a lesser extent. The new one, and perhaps the most frightening, is the postural instability.
My next appointment is this Thursday and I already have many questions. I feel "ahead of the curve" and not in a good way. I was honestly hoping for slower progression with perhaps a year or two at my initial visit point. That appears to have been overly optimistic.
More after Thursday.....
Thursday, August 18, 2011
Win some, lose some
Well today was my follow up to 6wks of Azilect. Apparently I misunderstood the doctor during the last visit and had stopped taking my Sinemet which he had not intended. That lead to a miserable 6wks although I did experience some improvement with the dystonia in my feet.
I was excited to be told that Sinemet was actually part of my treatment plan because I had experienced near 100% improvement taking it prior to the Azilect. In addition he added COQ10 supplements, 1200mg per day. There is some evidence to suggest COQ10 has a delaying action in the progression of the Parkinson's and I am hoping that the mix of Azilect and COQ10 will give me more active years particularly since I am very early on in my diagnosis.
Overall at this moment I am struggling with muscle spams in my right forearm and some intermittent tremor in my right hand. I also have some dystonia in my right foot and some postural instability. I think most of these symptoms will resolve themselves with the Sinemet.
He also suggested that I "stay active" but I am not yet clear on my boundries. Prior to my diagnosis I was an avid cyclist. The last two or three rides I had prior to my diagnosis were extremely unpleasant. I am trying to find an activity that I can enjoy that will aid in my active lifestyle that will be a good fit for dealing with my PD. If you have ideas, I would love to hear them.
Until next time.....
I was excited to be told that Sinemet was actually part of my treatment plan because I had experienced near 100% improvement taking it prior to the Azilect. In addition he added COQ10 supplements, 1200mg per day. There is some evidence to suggest COQ10 has a delaying action in the progression of the Parkinson's and I am hoping that the mix of Azilect and COQ10 will give me more active years particularly since I am very early on in my diagnosis.
Overall at this moment I am struggling with muscle spams in my right forearm and some intermittent tremor in my right hand. I also have some dystonia in my right foot and some postural instability. I think most of these symptoms will resolve themselves with the Sinemet.
He also suggested that I "stay active" but I am not yet clear on my boundries. Prior to my diagnosis I was an avid cyclist. The last two or three rides I had prior to my diagnosis were extremely unpleasant. I am trying to find an activity that I can enjoy that will aid in my active lifestyle that will be a good fit for dealing with my PD. If you have ideas, I would love to hear them.
Until next time.....
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