A little information about our project!
I am gathering letters from kids whose parents/grandparents have Parkinson disease to hopefully put these together in a book about parkinson disease for kids by kids. This was my 8 yr old daughter's original concept to help her and other kids like her better cope with having a mom or dad with PD.
The concept is to ask kids of all ages from 3 yrs old through college age kids (about 25 yrs old) to write a letter to their mom/dad/grandpa/grandma about how they feel about Parkinson disease, how it affects their mom or dad or grandma or grandpa, how it affects them as a kid living with this disease and how they cope with it.
They can include the best things they love about their family member. You can help the younger ones by writing what they say and they can draw pictures if they wish. The letter should start Dear Mom or Dad or Grandpa or Grandma -- whichever fits. This disease affects the entire family and it can be very difficult for kids to understand what is going on with their family member who they love very much.
I hope this book will in some small way reach out to these kids and give them comfort in knowing there are other kids like them. Please send letters to jenyopd@yahoo.com and please provide consent from the parents for me to use these letters in the book. I hope you will send this to others who may wish to participate.
Sunday, March 15, 2009
Saturday, March 14, 2009
Project Parkinson Kids - Welcome!
Project Parkinson Kids is a special project I am doing with my 8 year old daughter.
I am 36 years old and I was diagnosed with Parkinson disease at age 32. My kids were 1 and 4 at the time of my diagnosis. I was an RN and noticed I was having difficulty writing, starting IV's and I noticed I was dragging my right leg. Severe fatigue set in and then I began to notice a tremor in my right hand. I also noticed my right arm stopped swinging.
After going through every test known to man and seeing a variety of specialists, I saw a neurologist who took one look at my tremor and stiffness and diagnosed me with Parkinson disease. He told me I had 10 good years left and he would see me in 6 months. Are you kidding me? -- I was not about to have my life over at 42. I immediately threw myself into fundraising and reading every book I could find about PD.
I learned that my life was not over and I can live a very full life! It may have its challenges but I will not lie down -- never give up!
A few things I have done:
1) co-facilitator for a young onset PD support group in California (young onset meaning diagnosis is 50 or younger)
2) President and co-Founder of the San Fernando Valley Regional Chapter of the American Parkinson Disease Assoc
3) coordinated the event "Pancakes for Parkinsons" in California and raised $5,000 for PD Research and local community programs
4) make PD bracelets to raise awareness and contribute part of the proceeds to PD research
5) started 3 exercise classes for PD patients: a 6 week pilates class, a "Yoga class for PD" - still ongoing and our newest upcoming class is "Boxing for Parkinsons"
6) And now the new project "Project Parkinson Kids" to help kids whose families are dealing with PD to express how they feel about PD
I am 36 years old and I was diagnosed with Parkinson disease at age 32. My kids were 1 and 4 at the time of my diagnosis. I was an RN and noticed I was having difficulty writing, starting IV's and I noticed I was dragging my right leg. Severe fatigue set in and then I began to notice a tremor in my right hand. I also noticed my right arm stopped swinging.
After going through every test known to man and seeing a variety of specialists, I saw a neurologist who took one look at my tremor and stiffness and diagnosed me with Parkinson disease. He told me I had 10 good years left and he would see me in 6 months. Are you kidding me? -- I was not about to have my life over at 42. I immediately threw myself into fundraising and reading every book I could find about PD.
I learned that my life was not over and I can live a very full life! It may have its challenges but I will not lie down -- never give up!
A few things I have done:
1) co-facilitator for a young onset PD support group in California (young onset meaning diagnosis is 50 or younger)
2) President and co-Founder of the San Fernando Valley Regional Chapter of the American Parkinson Disease Assoc
3) coordinated the event "Pancakes for Parkinsons" in California and raised $5,000 for PD Research and local community programs
4) make PD bracelets to raise awareness and contribute part of the proceeds to PD research
5) started 3 exercise classes for PD patients: a 6 week pilates class, a "Yoga class for PD" - still ongoing and our newest upcoming class is "Boxing for Parkinsons"
6) And now the new project "Project Parkinson Kids" to help kids whose families are dealing with PD to express how they feel about PD
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