I don't know if it will make you feel better or not, but I know I have Parkin disease because of genetic testing. The testing was paid for by my health organization. This gives me the confidence to challenge my neurologist when she attempts to brush off many of my complaints as being caused by Parkin.

Neurologists need to rethink what their job description. Neurologist study the brain and only the brain. Ten years ago, the main study of the brain was to know what part of the brain is responsible for what body function. Which is the creative side? How does the brain and where are the receptors in the brain which react to the stimulous of the five senses (Sight, Sound, Touch, Smell and Taste)? This gave the neurologists the ability to understand what part of the brain would be affected if the patient had a tumor, or if surgery was urgent, would it be feasible.

We have learned that the body cannot be separated from the brain when the brain malfunctions. The brain is the motherboard in the human body. Every movement, sensory perception, movement is chemically commanded to occur by the brain. Neurologists need to broaden their vision of their jobs, to include learning more about how the chemical processes in the brain affect the body. Movement disorder specialists espiecially must broaden their job description to include knowledge of not only the neck and up but the neck and down.

CS, only you understand what your body feels. Our caregivers have to worry about finanaces, job, family, and begin to look at their former spouce as a unwelcome patient. I am sure after awhile, they deal with the loss of their spouce and lower their expectations of what they thought the marriage would be. That doesn't give them the right to treat us like children.

Maybe you might consider massage therapy. I have been suffering from severe dystonia causing me problems walking (both my toes are pulled under giving me caullouses on the top of my toes. I have severe charlie horses constantly. They occur more at night than during the day. They are not something you imagined. I, too, exercise flexibility positions every day.

I really understand your fear of adding more drugs to what you already take.
Everytime you add another drug, you have the fear of what it will take away more than what it will help. When I have a good day, and symptoms are minimal, I beat myself over the head thinking of how hard my spouce works and feel I should also be earning more income to get beyound the check to check type of lifestyle. When we married, I also was working and earning more than my spouce. The likelyhood of my husband's earning potential as a music teacher was likely not as lucrative as my career might have been as an Information Manager.

On bad days I am grateful to be able to not have to get up and make like I was like everyone else. I am up alot of nights and often sleep deprived. My husband and I had a talk about our marital issues the other day. Maybe it is time to have a heart to heart to ol' Mrs. CS.

The hardest part of Parkin Disease, is the lonliness of being alone to much with my own thoughts. I can't use my old tried and true stress reliviers like going for a long drive, taking a long walk, etc. I can feel the stress build up over a period of time and it spills over in self-pity, anger at my spouce for not spending more time with me, or depression. I am my own worst enemy. I sit and feed my brain with negative thoughts. I try to keep myself occupied with music, walking or caring for my pets, etc. but I want too much.

I get very enraged at neurologists who act like they know what symptoms are related to PD and what aren't. I wish they would understand how demeaning it is to be told that pain or other symtoms are caused by anxiety. I would be much more open to hearing the truth. They just don't know, but are doing their best with the tools medicine has on hand. The disease would be easier to live with if neurologists would admit the tools don't exist yet to diagnose or treat my problems.

To quote an ex-president, "I feel your pain."

Peace to you,
Vicky