Parkinson's Disease Support Group
Parkinson's disease is a movement disorder often characterized by muscle rigidity, tremor, a slowing of physical movement, and in extreme cases, a loss of physical movement. The primary symptoms of Parkinsons are due to excessive muscle contraction, normally caused by the insufficient formation and action of dopamine, which is produced in the dopaminergic neurons of the...
A few months ago I was diagnosed with the beginning stage of Parkinson's Disease. I started having hand tremors on my left hand approximately 2 years ago every now and then and I thought it was muscle spasm due to working out at the gym. Then on December 2012 it progressed and I went to see my primary Doctor who immediatey recommended I see a Neurologist. My Neurologist gave me some office exams inwhich i passed all but one at which time my Neurologist advised me to have a Cat Scan done in the Hospital.It was an all day procedure but I did it in one shot without moving! I then went to see my Neurologist thinking that I was ok. Bad News, As per the Cat Scan results It showed that I was positive with Parkinson's Disease. Wow, I was in denial and did'nt want to accept it. Since my hand tremors were constant daily I accepted it and decided to take the meds and fight it! I tried to hide it from Family and Friends but they noticed my tremors and so I came clean and told them that I was in the beginning stage of P.D. I'm ok but my Parents are in denial and think it's just my nerves,LOL!! They finally accepted it after educating them on P.D. This is the first time I opened up on a Discussion site about my P.D. I've read one book about P.D. but hope to get some advise here. Thank You!!............Will
Hugs!
For he cause. Take a moment to read my story. Good luck and good health Alex
I was diagnosed in 2004, I was 45 years old - a husband, a father to a fourteen year old daughter and was an otherwise a fairly healthy man. The neurologist said We belive you have Parkinsons disease.
I had genetic testing done and surprisingly I have none of the major genetic markers the doctors expected. I had intimate knowledge about pd as my father suffered with it for 20 years. It took me time to digest the fact that I had it too. Each person's response to their diagnosis unique, ranging from denial to acceptance.
In 2006, my wife convinced me to come with her to a local Parkinson support group meeting. Since it was a rainy night and there was no fishing, I went to the meeting.
After 5 years in the Young onset of Westchester support group, I was motivated to take action and be assertive in fund raising. In the support group I learned about the Parkinson's Unity Walk (the major fund raiser for PD research). I thought maybe I could raise $500. To my surprise, I raised over $1500. I am humbled by the support of my family and friends, and their family and friends.
This year the Unity Walk in New York City is on April 27th. I have received a commitment to match dollar for dollar donation up to $5000.00. This is huge and generous.
It is my hope that I can help raise awareness of this disease. It is my hope that new therapies will be discovered to improve the quality of life for those living with Parkinson's. It is my hope that there will be a cure for PD in my lifetime.
The Parkinson's Unity Walk shares my hopes, and is committed to raising funds for research until a cure is found. 100% of donations go to research funded by the major U.S. Parkinson's organizations.
I am living my life with Parkinsons disease and not letting Parkinsons live my life for me. Whether it is the daily frustrations of typing a simple email and having to hit the backspace key on almost every word or the daunting task of bending down to pet my cat, I overcome these challenges. What keeps me going is the knowledge that we are all doing as much as we can to raise funds, so the scientists and researchers can continue their work and move us closer to a cure.
Please make a donation now.
http://unitywalk.kintera.org/2013/alex?faf=1&e=6498437875
Like hisknobs, I also found liberation in being open about my Dx. When my body doesn't behave as it should & I get curious stares, rather that trying to cover up it's so much easier to simply say, "No need to worry, I have Parkinson's disease." And then I always smile to try to put them at ease. We need to be comfortable with our disease first.
So glad your family is with you on this now - their support & understanding will surely be helpful.
Bari
I have learned soooo much - either from others questions/replies or from throwing a question out there myself. (I often quote something discussed on this site to my neuro during our visits.)
I was dx just over 2 years ago - at age 53. My neuro has not prescribed any PD meds at this point - tho she does have me on a medication I call my "get up & go pill" (could not get thru a work day without it & has gotten to the point now that even with it I fear each day I will not be able to complete the workday). When I was officially dxd she told me we would work on numerous areas of my health & well being to start...taking on each symptom or area of concern. So - physical therapy, counseling (to work on decreasing stress issues, since stress causes greatly increased symptoms for me), cognitive testing to track how the 'ol brain is doing, etc.
We all have our own unique set of symptoms - yet you will find this group both supportive and quite open about sharing the good & the bad of living with PD.
P.S. Family and/or friends being in denial seems to be somewhat common. Glad your folks came around for you! (I'm still working on educating a few people that don't get that because they've never witnessed my head, hand, or arm tremors and I don't tremor constantly like they believe is "true" PD.....I HAVE PD!)
I'd like to know more about your "get up and go" pill, as this is an area in which I could certainly use some help.
Bari
The first attempt to get me thru my workday was methylphenidate (Ritalin) 10mg in the morning (for me that was 8am (ish) and 10mg @ noon. Just did not seem to make any noticeable difference for me. So neuro discontinued this prescription.
I was then prescribed Addreall 20mg in the morning (first took at 8am, then changed to 6:30am and that seemed to work better for me. She said I could take a Ritalin at noon as a "kicker" if I was having an especially bad PD day. Again - if it was a bad PD day I just did not notice that Ritalin helped a single bit.
Recently she changed my dose of Adderall to 20mg @ 6:30am - then another 20mg at noon if needed. This is probably the best dosage I can hope for, since I don't want to be "hyped up" - just want to be able to get thru my workday.
We each have our own journey through the PD symptoms, medications, doctors, coping, etc. I fought taking meds the first year but the symptoms became too noticeable and interfers with my job. I love my meds in that they allow me to live a very normal life - physically. My meds take away the pain of the rigidity.
Exercise is very important too. I feel my PD is all about keeping the muscles from being rigid and keeping them flexible and strong.
Please share your experiences with everything having to do with PD because that is how we help each other. Thank you for joining our group!!!
I'm 54 yrs old and 6ft & 4 in tall. Since my Parents see's me fit they cannot comprehend how in the World did I get P.D. They wonder if it's due to bad eating habits or maybe when I was involved in Judo I sustained a head injury? NOT! Never did.:-) They assured me that no one in our Family ever had P.D.! I accepted it after going through the Dat Scan at the Neuro Dept at a major Hospital. I pretty much did well at my Neurologist office exams and office test except one inwhich they scrape your wrist with the end of a rubber hammer type of instrument. The Doctor asked if it tingled and I said yes. She said not good. I was diagnosed in January of this year and finally commenced taking my Meds in February. I'm taking Azilect 0.5 mg, one per day. I live in South Florida and been trying to find a group for PWP. But to no avail? Thank You so much my Friends for taking time out to help me!! God Bless!