You know how I like to be in control. Well, I wasn't tonight. I went out for pizza with a friend of mine and her daughter. I love this friend. When I was in the throws of my deep bipolar depression, she used to pick me up and drive my daughter and me to soccer games because she was scared to death that I wouldn't make it to an out-of town destination. She was a special angel watching out for my daughter and me.
As the three of us sat outside talking and eating pizza, however, I was getting more and more frustrated. I wasn't able to spit out what I was trying to say. I couldn't remember words. I used the wrong words. I stammered over words. These are not things I used to do. I remember a couple of years ago complaining about these problems and having medical professionals play them down. It made me angry then and this situation makes me angry now.
I can only assume that as Parkinson's progresses in me, its interference with my speaking and thinking is going to continue and possibly get worse. I certainly don't have any control over the ultimate effects of the disease on my speech. However, I can do something that might slow down the deterioration of my ability to communicate.
You see, there are exercises for the brain. If the brain is not used, it will atrophy. As I understand, humans get into ruts and use the same"brain waves" over and over. This causes other unused "brain waves" to "sleep." Brain exercises wake those "brain waves" up - a good thing. I've looked at brain exercises on Luminosity.com, Brainmetrix.com, and Freebraingames.com. On the last cite, I tested my brain age. It was 67. I'm 54.
So, I've decided to regularly do brain games. I'll never know if the games will help. But I know this. If I don't do the games, then I will have done nothing to even possibly slow the deterioration of my brain. If I do the games, I may actually slow down any dementia that might be in my future.
This certainly isn't control. But, doing something - anything - is empowering. The games let me believe I can do something that might diminish - if even a little bit - the effects of my Parkinson's. I can't control the Parkinson's, but I can control how I react to it.
Gayle M.
Sunday, July 31, 2011
Saturday, July 23, 2011
CONTROL
Anyone who knows me knows that I like to be in control. I don't trust anyone else to do it right, so I don't delegate. Even if whatever it is is done right, if it's not the way I would do it, then I don't like it and I feel compelled to take it back.
Also, if something is broken, I want it fixed. I'm not talking just about mechanical things. I want to fix situations. I want solutions.
That's not all though. I don't like uncertainty. I want to script a meeting before the meeting and have a response for any question I think might be asked. This goes beyond preparation. I need to know what to worry about. Tell me the worst-case situation. Is there a blow-up I can divert? I suppose this is just more control. I want to be in control. And I want to fix a blow-up before it happens. My therapist tells me I can't always be in control. Ha!
Parkinson's Disease has the two things that I don't like: it's something I cannot fix and it's something I cannot control.
There is no cure for Parkinson's. Researchers know it's a shortage of dopamine in the brain so that the part of the brain that controls movement is adversely affected. Scientists have developed drugs that can mitigate many of the symptoms. But those medicines don't always work and may eventually wear out. There's no fix.
I cannot control how my Parkinson's will affect me. When I first was diagnosed, I did what any lawyer does: I researched Parkinson's. And I learned:
Now, a health professional says he believes I have the onset of dementia from Parkinson's. He's only one health professional and I've seen him only one time; but, because he did testing and he's talking about my intelligence, he's hitting way too close to home. My other health pros that have seen this professional's report do not seem to be concerned about it, which upsets me a little. I can't just dismiss what he said because it explains some of the things I'm experiencing: forgetfulness, difficulty in understanding complicated material after just one reading, searching for words (i.e., thinking "mitigate" looking for "mediate"). Yesterday, I wanted to say cremate and all I could muster was incinerate. That happens at least once a day. I can't fix it. I can't control it. And, I just can't stand it.
Now, I'm afraid of not having control. I'm scared of not having a sharp mind. I treasure being able to deliver a snide comeback when it's necessary. Now, I picture myself sitting in a chair and staring into space or saying things that make no sense or not processing at all what I hear. What if I don't know my kids? What if I get that way before my parents do?
I don't have to be this way. More on that next time...
Also, if something is broken, I want it fixed. I'm not talking just about mechanical things. I want to fix situations. I want solutions.
That's not all though. I don't like uncertainty. I want to script a meeting before the meeting and have a response for any question I think might be asked. This goes beyond preparation. I need to know what to worry about. Tell me the worst-case situation. Is there a blow-up I can divert? I suppose this is just more control. I want to be in control. And I want to fix a blow-up before it happens. My therapist tells me I can't always be in control. Ha!
Parkinson's Disease has the two things that I don't like: it's something I cannot fix and it's something I cannot control.
There is no cure for Parkinson's. Researchers know it's a shortage of dopamine in the brain so that the part of the brain that controls movement is adversely affected. Scientists have developed drugs that can mitigate many of the symptoms. But those medicines don't always work and may eventually wear out. There's no fix.
I cannot control how my Parkinson's will affect me. When I first was diagnosed, I did what any lawyer does: I researched Parkinson's. And I learned:
- No one knows what causes it.
- There are 5 stages of Parkinson's that promise some or all of things like drooling, constipation, falling, shaking, dementia, inability to swallow, slow movement and speech, a "frozen" facial expression, micrographia, shuffling gait, rigidity of muscles, which may feel like anything from uncomfortable to painful, postural instability, and the possibility of needing to depend 100% on someone else.
- No one can tell me how fast or even if I will progress though the 5 stages of this degenerative disease. It could happen quickly. It could happen slowly. It could be a mix. I am the way I am today, but a month from now, I might be different or I might not. I just don't know. It's uncertain.
Now, a health professional says he believes I have the onset of dementia from Parkinson's. He's only one health professional and I've seen him only one time; but, because he did testing and he's talking about my intelligence, he's hitting way too close to home. My other health pros that have seen this professional's report do not seem to be concerned about it, which upsets me a little. I can't just dismiss what he said because it explains some of the things I'm experiencing: forgetfulness, difficulty in understanding complicated material after just one reading, searching for words (i.e., thinking "mitigate" looking for "mediate"). Yesterday, I wanted to say cremate and all I could muster was incinerate. That happens at least once a day. I can't fix it. I can't control it. And, I just can't stand it.
Now, I'm afraid of not having control. I'm scared of not having a sharp mind. I treasure being able to deliver a snide comeback when it's necessary. Now, I picture myself sitting in a chair and staring into space or saying things that make no sense or not processing at all what I hear. What if I don't know my kids? What if I get that way before my parents do?
I don't have to be this way. More on that next time...
Tuesday, July 19, 2011
Tremors
Parkinson's Disease is a movement disorder. A part of the brain called the substantia nigra produces a chemical called dopamine. Dopamine acts as neurotransmitter in the brain that allows for the coordination of movement. It creates symptoms that include tremors, rigidity (described as a ratchet of muscles), balance problems (I can't stand on one foot), and a modified gait (I don't swing my arms when I walk. More than 1 of my doctors say I shuffle when I walk, but I don't believe them.)
I submit the most recognized symptom of Parkinson's Disease is tremors. If asked to describe a tremor, I first would suggest watching a You Tube of Mohammad Ali. He is a good example of a PD tremor in my mind. It's a fast, short tremor. However, look at the You Tube of Michael J. Fox. I don't know if he tremors, but, as you can see in this video, he does have a movement disorder associated with his Parkinson's. http://www.youtube.com/watch?v=a9WB_PXjTBo&feature=related
I have tremor in my hands and head. I take 2 drugs for my PD, so, I don't have a tremor all the time. Frequently, if I am having a tremor, people don't see it because the tremors are not strong enough to come to the surface. I just feel them in my inside, a strange feeling. On the other hand, I really tremor when I am upset. I can't write. I can't type. My hands just go a mile a minute.
For the most part, the tremors do not create any problem for me so long as I'm not upset. I have, however, had a situation or two where my tremor would have best been left at home. I volunteer a little of my time for a local non-profit group. We believed we were in need of someone who could help us with public communications. A person at my church said he knew just the person. His name was (and still is) John Peterson. Now John is a big deal. He has done communications work on a national level, justifying his copious resume. I was anxious to meet him. So I invited his wife, Brenda, and him to lunch to talk with me and 2 other people from my group about public communications.
That day at lunch with my colleagues and the Petersons, I had tremors. The tremors weren't obvious, but, I stressed all through lunch that someone would notice them and wonder if I liked to play with my hands or something. Also, I had tremors of my head, going back and forth in a "no" kind of way and I worried that as John was talking, he would think that I was disagreeing with everything he was saying - completely rude since he was there giving his opinion at my invitation. I tried, but I couldn't make my head stop. While I could hold my hands together to control them, I couldn't easily hold my head.
Then, my hands started into a major tremor and, according to one of my colleagues, a distressed look hit my face. I don't remember making a distressed face, but I now know from the tests I described in Blog 1, that's probably because I'm in the early stages of dementia. (Now that I have this excuse, I'm going to run with it whenever I can - I'm sharp enough to recognize its utility.)
Immediately, my lunch partners started asking me "Are you OK?" "Yes," I answered, "I'm fine." "Are you sure?" "I'm fine." Then I blurted out, "It's OK. I have Parkinson's Disease!" I was embarrassed by the fuss, but not a single person said anything further. We simply picked up the conversation where we left off. At least now everyone knew why I had a tremor. John knew I wasn't saying "no" to everything he was saying. I didn't have to worry anymore about what my lunch companions thought when they saw my tremors. Disclosure was liberating!
But now, I worry: will people think I'm seeking sympathy if I tell them I have Parkinson's? I don't think so. I can't know what was in my lunch companions' heads but none of their faces evidenced pity.
I've decided that being open about why I have tremors and why I have a death grip on a stair railing empowers me. If the people that I'm around know that I have Parkinson's, I don't have to worry about what they might guess is the reason I tremor. I'm not going to introduce myself saying, "I'm Gayle and I have Parkinson's Disease. Just ignore the tremors." But if someone sees a tremor, "It's just Parkinson's," will be something that releases me from having to worry about what that person might otherwise think and probably will relieve the observer from distraction . We all can treat it like a cold's sneeze and move on.
Blessings,
Gayle M.
Post Script:
I submit the most recognized symptom of Parkinson's Disease is tremors. If asked to describe a tremor, I first would suggest watching a You Tube of Mohammad Ali. He is a good example of a PD tremor in my mind. It's a fast, short tremor. However, look at the You Tube of Michael J. Fox. I don't know if he tremors, but, as you can see in this video, he does have a movement disorder associated with his Parkinson's. http://www.youtube.com/watch?v=a9WB_PXjTBo&feature=related
I have tremor in my hands and head. I take 2 drugs for my PD, so, I don't have a tremor all the time. Frequently, if I am having a tremor, people don't see it because the tremors are not strong enough to come to the surface. I just feel them in my inside, a strange feeling. On the other hand, I really tremor when I am upset. I can't write. I can't type. My hands just go a mile a minute.
For the most part, the tremors do not create any problem for me so long as I'm not upset. I have, however, had a situation or two where my tremor would have best been left at home. I volunteer a little of my time for a local non-profit group. We believed we were in need of someone who could help us with public communications. A person at my church said he knew just the person. His name was (and still is) John Peterson. Now John is a big deal. He has done communications work on a national level, justifying his copious resume. I was anxious to meet him. So I invited his wife, Brenda, and him to lunch to talk with me and 2 other people from my group about public communications.
That day at lunch with my colleagues and the Petersons, I had tremors. The tremors weren't obvious, but, I stressed all through lunch that someone would notice them and wonder if I liked to play with my hands or something. Also, I had tremors of my head, going back and forth in a "no" kind of way and I worried that as John was talking, he would think that I was disagreeing with everything he was saying - completely rude since he was there giving his opinion at my invitation. I tried, but I couldn't make my head stop. While I could hold my hands together to control them, I couldn't easily hold my head.
Then, my hands started into a major tremor and, according to one of my colleagues, a distressed look hit my face. I don't remember making a distressed face, but I now know from the tests I described in Blog 1, that's probably because I'm in the early stages of dementia. (Now that I have this excuse, I'm going to run with it whenever I can - I'm sharp enough to recognize its utility.)
Immediately, my lunch partners started asking me "Are you OK?" "Yes," I answered, "I'm fine." "Are you sure?" "I'm fine." Then I blurted out, "It's OK. I have Parkinson's Disease!" I was embarrassed by the fuss, but not a single person said anything further. We simply picked up the conversation where we left off. At least now everyone knew why I had a tremor. John knew I wasn't saying "no" to everything he was saying. I didn't have to worry anymore about what my lunch companions thought when they saw my tremors. Disclosure was liberating!
But now, I worry: will people think I'm seeking sympathy if I tell them I have Parkinson's? I don't think so. I can't know what was in my lunch companions' heads but none of their faces evidenced pity.
I've decided that being open about why I have tremors and why I have a death grip on a stair railing empowers me. If the people that I'm around know that I have Parkinson's, I don't have to worry about what they might guess is the reason I tremor. I'm not going to introduce myself saying, "I'm Gayle and I have Parkinson's Disease. Just ignore the tremors." But if someone sees a tremor, "It's just Parkinson's," will be something that releases me from having to worry about what that person might otherwise think and probably will relieve the observer from distraction . We all can treat it like a cold's sneeze and move on.
Blessings,
Gayle M.
Post Script:
John Lynner Peterson communicates through his photography. His work is thought-provoking. Please visit his website at: http://www.johnlynnerpeterson.com/ Note Mr. Peterson has an exhibit of his photography at the Woodford County (Kentucky) Library. He will speak about his photography this Wednesday, June 20 at 6:30.
Brenda Bartella Peterson is "recommended for wisdom, listening and relationship support." Follow Ms. Peterson at:
Monday, July 18, 2011
Introduction - Following Parkinson's
My name is Gayle. In 2008, I was diagnosed with Parkinson's Disease. I really didn't think much about it at the time. I was in the throws of a terrible, debilitating bipolar depression.
But now, things have changed. I recently had a neuropsycological exam. I really didn't think anything of it either. It was long, tedious, and not very attention-grabbing. The results, however, did catch my attention. According to this report, I have dementia resulting from Parkinson's Disease.
This news hit me hard and, for the first time, made Parkinson's real. I'm an attorney and the thought of not being sharp enough to always be an attorney (even though I don't practice anymore) is hard to accept.
So, I've decided to do what makes me unwind: write. Each day (well, almost each day) I will attempt to write a little something to give a perspective on Parkinson's. In the meantime, if you want to know more about PD, click on the 2 links below. The Parkinson's Disease Foundation and the Michael J. Fox Foundation for Parkinson's Research are wonderful resources for everything PD.
Gayle M.
But now, things have changed. I recently had a neuropsycological exam. I really didn't think anything of it either. It was long, tedious, and not very attention-grabbing. The results, however, did catch my attention. According to this report, I have dementia resulting from Parkinson's Disease.
This news hit me hard and, for the first time, made Parkinson's real. I'm an attorney and the thought of not being sharp enough to always be an attorney (even though I don't practice anymore) is hard to accept.
So, I've decided to do what makes me unwind: write. Each day (well, almost each day) I will attempt to write a little something to give a perspective on Parkinson's. In the meantime, if you want to know more about PD, click on the 2 links below. The Parkinson's Disease Foundation and the Michael J. Fox Foundation for Parkinson's Research are wonderful resources for everything PD.
Gayle M.
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