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.....
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