Thursday, November 8, 2007
Still waiting but not not doing anything
It will be Nov 20 when I see the sub-specialist. I'm taking 1200 mg CoQ10 now in 4 divided doses daily. Expensive, but it appears to be a good thing from the studies I've read. Reading on the web now and then, and have some reservations about some possible treatments. I 'll want to review the possible side effects and weigh them with possible benefits. It does interfere with my life to shake at unpredictable times.
Thursday, September 20, 2007
Waiting for an appointment
I am now waiting for a subspecialist to call me to make an appointment. His office said to expect it to take weeks. Meanwhile, when my hand and arm start to shake at work, it goes into my pocket. I just do not want this out for fear it will shade different people's perception of my capabilities. It is a fearful place to be. The strain of secrecy leaves me exhausted.
After checking with the extended family, not only does my maternal aunt have Parkinson's, but a great uncle on the same side of the family had it as well. I guess I won the Parkinson's lottery. Of the 48 grandchildren my grandmother had upon her death, I am the one so far. I think the odds are that 1 or 2 more may yet get the diagnosis. I'm more in the median age of those 48. Time will tell.
Right now, while I'm waiting, I'm deciding what is a priority in my life. Obviously, the main priority is my family. I want to do the extensive family history my Aunt June started, and finish other lines I have begun myself. I want to leave a record, written and electronic, for my children, grandchildren, and the extended family.
Another priority, upon which the first depends, is to simplify my life so that unneeded clutter and upkeep do not infringe on precious time. I'm beginning the weeding out process now. I don't want junk interfering with my life.
I've read a number of blogs from PD patients, and I find it frightening to think in a matter of a few years I may be disabled. I'm avoiding taking supplements of any kind that might interfere with treatment or trials I might get into later. But I am seriously thinking of taking Coenzyme Q10. Have to go.
After checking with the extended family, not only does my maternal aunt have Parkinson's, but a great uncle on the same side of the family had it as well. I guess I won the Parkinson's lottery. Of the 48 grandchildren my grandmother had upon her death, I am the one so far. I think the odds are that 1 or 2 more may yet get the diagnosis. I'm more in the median age of those 48. Time will tell.
Right now, while I'm waiting, I'm deciding what is a priority in my life. Obviously, the main priority is my family. I want to do the extensive family history my Aunt June started, and finish other lines I have begun myself. I want to leave a record, written and electronic, for my children, grandchildren, and the extended family.
Another priority, upon which the first depends, is to simplify my life so that unneeded clutter and upkeep do not infringe on precious time. I'm beginning the weeding out process now. I don't want junk interfering with my life.
I've read a number of blogs from PD patients, and I find it frightening to think in a matter of a few years I may be disabled. I'm avoiding taking supplements of any kind that might interfere with treatment or trials I might get into later. But I am seriously thinking of taking Coenzyme Q10. Have to go.
Saturday, August 25, 2007
25 August 2007
OK. I decided it would be better for all to not keep secrets. So I told my kids, and everyone is OK. They know me as I am now, and can't grasp a future where I'm kind of checked out. I'm far more worried about that than walking with a shuffle or shaking.
I've spent several hours looking at other blogs or medical forums or postings with medical info on Parkinson's and I suppose I have some general idea of what may lay ahead. Since it takes so long to see the sub-specialist, it will be a while before I can ask questions, so I guess I'll make a laundry list as I go.
One thing that has stricken me is how tired I feel. I think some of the rigidity in my left arm is because of the Parkinson's, not because of the frozen shoulder syndrome I had a couple of years ago, and which I now wonder if it was not the onset of symptoms. Chemical's I've worked with:
used to spray the house with pesticide whenever I pleased. Lived out in rural New Mexico where pesticides may have been sprayed, but it looks like childhood or fetal exposure to pesticides may be a key, not necessarily exposure as an adult. No known exposure as a child other than household pesticides used now and then by my parents.
Worked about 3 years in an asthma and allergy clinic where I daily concocted the formulas which were injected into our patients. I think the latter is an unlikely causal factor, since everything was an extract of a tree or grass or other natural substance. Seems very unlikely. Lived in old houses in the 50's and 60's but don't remember eating much paint. (Ha.)
Maybe an Aunt has Parkinson's. Worked around a lot of inhalants as a nurse: gave breathing treatments and Ribavirin.
Or, like having a child with some genetic abberation, it just might be THE GOD-RAISIN THEORY. The God-Raisin Theory was developed by a Psychologist who worked with families with children who had chronic impairments. To explain why, as we all need to, something had happened to "cause" the impairment, he explained that every day, God grabs a hand full of raisins and throws them out there, and if you get hit in the head with one, you get a child with an impairment.
Makes perfect sense to me. Why else? Same thing may apply here. Some things can be explained scientifically, and all else may fall under the God-Raisin theory. I don't want to make light of prevention, which I'm all for, but when all else fails, blame that random way God has of shaking up our little orderly worlds.
I've spent several hours looking at other blogs or medical forums or postings with medical info on Parkinson's and I suppose I have some general idea of what may lay ahead. Since it takes so long to see the sub-specialist, it will be a while before I can ask questions, so I guess I'll make a laundry list as I go.
One thing that has stricken me is how tired I feel. I think some of the rigidity in my left arm is because of the Parkinson's, not because of the frozen shoulder syndrome I had a couple of years ago, and which I now wonder if it was not the onset of symptoms. Chemical's I've worked with:
used to spray the house with pesticide whenever I pleased. Lived out in rural New Mexico where pesticides may have been sprayed, but it looks like childhood or fetal exposure to pesticides may be a key, not necessarily exposure as an adult. No known exposure as a child other than household pesticides used now and then by my parents.
Worked about 3 years in an asthma and allergy clinic where I daily concocted the formulas which were injected into our patients. I think the latter is an unlikely causal factor, since everything was an extract of a tree or grass or other natural substance. Seems very unlikely. Lived in old houses in the 50's and 60's but don't remember eating much paint. (Ha.)
Maybe an Aunt has Parkinson's. Worked around a lot of inhalants as a nurse: gave breathing treatments and Ribavirin.
Or, like having a child with some genetic abberation, it just might be THE GOD-RAISIN THEORY. The God-Raisin Theory was developed by a Psychologist who worked with families with children who had chronic impairments. To explain why, as we all need to, something had happened to "cause" the impairment, he explained that every day, God grabs a hand full of raisins and throws them out there, and if you get hit in the head with one, you get a child with an impairment.
Makes perfect sense to me. Why else? Same thing may apply here. Some things can be explained scientifically, and all else may fall under the God-Raisin theory. I don't want to make light of prevention, which I'm all for, but when all else fails, blame that random way God has of shaking up our little orderly worlds.
Friday, August 24, 2007
Friday 24 August 2007
Two days ago I learned that the symptoms that I could no longer ignore were because of Parkinson's. I saw a specialist I have long respected, who will send me to a subspecialist for treatment. It will probably take a month or two to get in. I'm hoping
not to learn my symptoms are rapidly progressing. A tremor in my right arm and hand gave me the first hint the other signs I had been seeing were connected. The tremor has been there about 3 weeks. I've had a raspy voice off and on for several months. For more than a year I've had what I thought was heartburn at night to the extent that I finally had to start a prescription medication to treat it.
Parkinson's sounded like a better alternative than MS. But it has an end stage I hate to think of. Yet there might be a long middle, which I will hope can provide me with valuable time to complete the things I want to in this life and leave a legacy for my family. I also hope to have several years to prepare for the inevitable disability Parkinson's promises.
My husband and most of my siblings now know. I'm waiting to tell one brother who is having some health problems of his own. And I'm waiting to tell the kids until I see the subspecialist and know more about what kind of time frame I have to work with.
But I plan to let them know as soon as possible to help them grow through this experience, and prepare for the changes it means to all of us.
It is better than a car wreck. There is time. For that I am grateful.
not to learn my symptoms are rapidly progressing. A tremor in my right arm and hand gave me the first hint the other signs I had been seeing were connected. The tremor has been there about 3 weeks. I've had a raspy voice off and on for several months. For more than a year I've had what I thought was heartburn at night to the extent that I finally had to start a prescription medication to treat it.
Parkinson's sounded like a better alternative than MS. But it has an end stage I hate to think of. Yet there might be a long middle, which I will hope can provide me with valuable time to complete the things I want to in this life and leave a legacy for my family. I also hope to have several years to prepare for the inevitable disability Parkinson's promises.
My husband and most of my siblings now know. I'm waiting to tell one brother who is having some health problems of his own. And I'm waiting to tell the kids until I see the subspecialist and know more about what kind of time frame I have to work with.
But I plan to let them know as soon as possible to help them grow through this experience, and prepare for the changes it means to all of us.
It is better than a car wreck. There is time. For that I am grateful.
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