"The progression of symptoms in Parkinson's may take 20 years or more. In some people, however, the disease progresses much more quickly. " Yeah, but.......... what is the speed of progression: as with a car, what is 20 miles per hour, what is 100 mph? What is a slow progression, what is fast? NOT "it varies from person to person."
Using the car analogy, there are more than one type or brand of car and each type or brand of car operates just a bit differently from all of the other cars. There are Ford Model-T's (slow but predictable-they work every time but they don't go very fast and occasionally they get stuck in a mudhole); Edsel (great car, but lived a short life); 2-door and 4-door sedans (the every-day run-of-the-mill vehicle that stays on the paved roads and rarely breakdown if they receive regular maintenance); SUVs with 2-wheel or 4 wheel drive (they can drive on paved roads or unpaved roads--constantly moving from city to the open unpaved roads with ease); ATVs-All Terrain Vehicles (they can travel anywhere-mud, sand, up and down hills or mountains, etc.); racing cars (follow a designated route and go very fast); Formula 1 racing cars (they go very, very fast and crash into little pieces ); pick-up trucks (the all-purpose vehicle)...etc.
Each type or brand of car represents the different types or different "routes" that Parkinson's can take to get to the end (death). Each car has its own "speed of progression" depending on the type or brand of car, who the driver is, what type of surface they are driving on; how much gas there is in the gas tank; how fast they drive, what the weather is and so forth.
The driving surface, weather and so forth are the different medications or treatments that are used to treat Parkinson's and how Parkinson's in a particular person responses to those medications or treatments, the side effects of medications or treatments, the person's other medical problems and how they are affected by the Parkinson's...
You drive differently than I do; I drive differently than my Mom, Dad, Grandma or Grandpa did; and my neighbors drive differently from each other. And Parkinson's is different in each of us.
I hope that this helps you (or whoever you are counseling) to understand the Parkinson's Disease process or progression better?
When Parkinson's was first discovered, doctors thought that it was the result of having the Spanish Flu in 1918 because most of the people who were developing Parkinson's had had the Spanish Flu. It was through research that they determined the actual cause of Parkinson's. My Grandmother (at age 68) participated in one of the first drug studies--Levodopa-- in 1970. She lived at home for 2+ years and was able (with difficutly) to walk and talk, but needed help getting dress, toileting, feeding herself, etc. until 2 weeks before her death at age 71.
A good friend of mine was diagnosed with Parkinson's at age 67, she died this past weekend at age 70. She spent the last 2 years of her life in a LTC facility.
If you base your conclusions on just these two people, then you would assume that Parkinson's begins at age 65-69 and that the people who have the disease will die at age 70-71. BUT not all people get Parkinson's at these ages nor do they die at these ages. Some people live for 5++ years before they get to the point of needing total care in a nursing home.
As Ecclesiastes 3: 1-8 NIV states: "There is a time for everything, and a season for every activity (disease/illness) under heaven:...."
ADVERTISEMENT
My doctor said to me that he liked my attitude because I didn’t look at him with the expectation of him being able to fix everything. He said that he appreciated that I understood that I had a complicated case.
He consulted two other specialists to help with my case. They filmed my surgery for endometriosis with med students to observe. He even told me that he was going to go back to school for further education due to the challenges of my case.
My body did not respond predictably to the drugs. I nearly died at one point. I also had tried three attempts at in vitro fertilization. Nothing worked! I couldn’t conceive a child.
Many of his patients went to him and said, “Fix my body. It’s broken.” Then he said, “I am not a mechanic. I practice medicine for a living. This is not a shop where you bring your car to be fixed. There are no guarantees.”
So true! By the way, I tried everything! I went to h*ll and back trying to conceive a baby and finally gave up. I spent thousands of dollars!
Years later, with no treatment at all I got pregnant after being told that it wasn’t possible for me to get pregnant!”
Individual humans and the disease process isn't at all like math; more like a mystery novel you try to figure out twist by twist and turn by turn. As this goes along you will have a whole lot to tell us about YOU (or the one you are writing about) but it won't mean a THING to us other than that "this is the way it went for one person. Could be the same for me. Or different".
I had a doctor, when I had cancer, answer a question from me about whether I should take a particular medication with "Oh...................I don't know...............it's anything but an exact science". I laughed and he laughed. Then he said "I can say that to you because YOU are a nurse. I can't say it to most patients. They come to me because they WANT ANSWERS. So I give them answers".
We have always wanted answers, and around that fact all kind of strange juju has come up. Such as "You can cure cancer if you are positive". BUNK! As a nurse I can tell you that one is total myth. You might have a better life with your illness, but you sure won't kill cancer with positive thoughts. Nor will you kill yourself with negative ones.
Answers. We always want them. And there are so few.
prayer either. Nor will karma kill you.
If I am traveling from one place to another I know that if I drive slowly it will take me longer to get there. If I drive fast, I will get there sooner. I also know that I can drive a mixture of fast and slow and therefore not know when I will reach my destination. I am not asking when I will arrive, but how fast I am traveling now, understanding that when I reach my destination is not possible to specify, Also keep in mind that analogies always fall apart if pushed too far.
More research is needed to learn more about any disease. We do know that the younger a person is diagnosed with it the faster it progresses such as the case with Michael J. Fox. My mom got it older in life so it has progressed more slowly.
We also know that there is no cure but is somewhat controlled with meds and sometimes surgery for certain individuals.
These are good questions for you to ask your doctors, especially since they are caring for you or the person you love. They will see you regularly over time, and have an idea perhaps of the progression of your individual case.
Unfortunately, not all questions can be answered. We have no crystal ball in chronic disease. We ALSO can't predict what new treatments are on the way, what research, and there are so very many working so very hard, and making such progress. When I started in nursing really there was just "senility". Can anyone remember those days? Then we started to get differing types, often named for the men and women who first realized how unique different presentations of dementia are. Alzheimer's, Lewy's. Now we recognize so many differing types and symptoms that one can barely keep up. We are a long way from those days when "senile" said it all.
You are asking the question that every patient with cancer asks: How long do I have. It is the most difficult for any doctor to answer. They can give statistics. They hesitate to do so because an individual human being isn't a statistic. They hesitate to make a person either too hopeful or not hopeful enough.