How does Parkinson's affect our lives?

i had an interesting discussion today with someone about Parkinson's and realize there are so many questions people have about this disease and how it affects our lives. Most people are familiar with the disease only through Michael J. Fox, a well known celebrity who was diagnosed. This type of exposure to the disease has a limited understanding of how the disease affects a person other than the physical nature of what they can see, which is such a small part of what is really going on. A lot of these questions have no simple answers. i know that i had no real understanding of the disease myself until it became part of our lives. i will try to address as many questions as i can think of, at least the ones that come up often.

1. What is (early onset)Parkinson's? This is a quick (layman) summary of Parkinson's. There is a place in the brain called the Substantia nigra. This is Latin for "Black substance". This is a structure in the middle of the brain that plays an important role in reward, addiction, and movement in the brain. This portion of the brain makes dopamine. dopamine is a neurotransmitter. It tells your body to control its heart rate, blood pressure, and all muscles. In Parkinson's this portion of the brain is not working correctly. These cells either die or become impaired. Why or how this happens is not known. The body does not have the dopamine it needs to preform muscle controlling and all functions effected by dopamine. Once this process is started it is progressive. Which means that once the process starts the cells will keep dying and it can not be stopped. You do not show symptoms of Parkinson's until 60-80% of the cells that produce dopamine are dead in your brain.
2. What causes (early onset) Parkinson's? The exact cause of Parkinson's is not know. Your genetic make up can play a role. Your environment and exposures to toxins also may play a role in development of the disease. Mostly we do not know.
3. What are the symptoms of (early onset) Parkinson's? The most visible symptom is a tremor (shaking hands or legs). Bradikineisa, which is slowness of movement. This symptom makes it difficult to initiate movements. Such as writing, walking, sitting up, to name a few. One of the biggest symptoms is muscle rigidity. This has been one of the most difficult ones for Jason. Tight stiff muscle cramps that are extremal painful! Like the worst Charley horse you have ever felt. He describes it as feeling as if you have just finished a MAJOR work out all the time! Another symptom is impaired balance and posture and loss of automatic movement. Some examples are Blinking, swinging your arms while you walk, smiling. These can be diminished or even in some cases lost. Problems with speech and voice. Trouble swallowing, speaking quietly or trembling voice. Finally Dementia, confusion, difficulty concentrating, anxiety, depression, difficulty sleeping. (This all just scratches the surface but it gives you a good idea)
4. Will your children inherit Parkinson's? They are only and a slight increased risk to develop Parkinson's. Less 10% of cases are direct relatives of some one with Parkinson's. Most cases are people who have no family history. For us, ultimately, God is in control of that!
5. Does he move like Michael J. Fox? The movements you see Micheal J. Fox making are not a symptom of the disease, these are a side effect of the powerful medications that are used to treat Parkinson's. (primarily the medication Carbodopa/Levedopa) Jason does not move as noticeably as Michael...yet. However he will! And he does move that way sometimes.
6. Don't they have medications that can help him? Yes, there are treatments that do help with some of the symptoms. They however do have side effects, like the movements described above, and others. Another down side is these medications loose there effectiveness over time. Which means that the longer he has the disease the more medications he will have to take to get a shorter time of relief! And the more medications he takes the worse the side effects. It has been difficult for some to understand that he can't just, take and ibuprofen or go to the hospital and take powerful pain killers and feel better. Those treatments provide NO RELIEF! Living with this type of pain is a fact of life with this disease! There is no cure, it is all about symptom management.
7. Will he die from this disease? There is a saying with in the Parkinson's community...."You don't die of Parkinson's, you die with it" People with (early onset)Parkinson's on average do not die sooner that of someone with out it. However the disease is different for every person. It all depends on how soon you were diagnosed, your treatments, your health and life style. Most people die of Parkinson's related complications, like aspiration(from not being able to control throat muscles), phenomena, falls, accidents, and so on. The disease is considered to be a slowly progressing disease, however some people do progress more rapidly.

These are some of the questions that i hear a lot. If any of you can think of any others that you may have send a comment.