Late last week we sent out our newsletter, which included an invitation for people to email us with their experiences, thoughts, and ideas. The responses back were fantastic. There is golden insight in the paragraphs below. I want to share some of the questions and comments people sent to us. Please note, we did very little editing.
Email: I needed that! Recently my attitude has been bad, bad, bad. Formally PD diagnosed June 2003, but knew that I had a serious problem with my brain since 2001. Seems like moodiness, depression and apathy have become my constant companions in the past 3 months. The person I was is lost right now, nothing is satisfying. It is something I'm sure I will get through, but it is something I don't want to go through. On all of the support group sites, the people are encouraging and try to give positive feedback to each other and anyone in need. But there is a part of me right now that finds positive thinking bland and tasteless. Like slapping a band-aid on a gaping hole.
Just reading the truth of the moodiness and bouts with depression of another person dealing with PD is helpful. I don't feel like I'm really losing it. This too will pass.
Thank you again
Email: Please check your medication. I went to the drug store who I trusted for Stalevo 100 mg. I take one every 5 hours during waking hours. Unknowingly, I took the medication and it turned out to be a 150 mg. oops! A pharmacy mistake. I took 250 mg per day too much and I was flinging and whaling my arms and legs and sweating until I had to wash my hair several times a day. I blamed it on a new drug and quit taking it but it was [not] the new drug. I was overmedicated due to the error of the pharmacy. Look at your meds. make sure they are the right [color] and size. I almost died.
My Parkinson’s Info Answer: This is great advice. A member of the My Parkinson's Info staff has worked closely with pharmacies. They do make mistakes, in spite of good systems to help them avoid them. It’s a good idea to double-check your doctor’s advice, your prescriptions, the care plan that a nurse is carrying out on you, as well as the information that you read on My Parkinson’s Info. Never be concerned about doubting, clarifying, asking questions, or even blatantly disagreeing with your pharmacy or any other person or organization that provides you with health services or information.
Email: My husband has been diagnosed with PD since last Nov. His face gets red blotches on it. We have some cream that helps. Is this something other people get? Is food the cause? He also has diabetes is there a connection< Thanks
My Parkinson’s Info Answer: A lot of people with Parkinson's get a condition called seborrhea. We've only blogged on it once - http://myparkinsonsinfo.com/?p=192We do not know if this is what your husband has. If is is seborrhea, it could also be triggered by stress. We've done a search to look for medical literature linking seborrhea and diabetes, and we cannot find one. We hope this helps.
Email poem
DIAGNOSED CURVE BALL
I'm up to bat coming into the home stretch of my life, since I'm nearing 60yrs of age.
I've worked out for half of those years, knowing I was responsible for caring for the “case” in which would humbly carry my heart & soul.
My heart aches, my soul confused…and my “case” stands to crumble.
So, what did I do wrong, how can this be?
My golden years have tarnished before I've entered.
My heart is heavy, knowing my future can't be anywhere close to what I had dreamed.
Mr. PD reared his ugly self and sent me into a fear I didn't know existed.
There's only one option here.
Plant my feet, grip the stick of life and hit that curve ball with a vengeance.
My body will take on its own physical journey and my spirit will continue to bat, and hit, and win.
My victories may be small but in my mind I'll view them as huge.
Curve ball or not, I'm committed to the game of life and will play to the very last inning.
Email:
Editor:
Can you please publish this information? I would really appreciate your help. I am a 19-year-old sophomore attending Brandeis University on an academic scholarship.
Recently, my grandmother lost her battle with PD; she died in May. My mother, a university professor, was diagnosed with PD four years ago.
Please join me in making a difference in the lives of those living with Parkinson's disease by purchasing my new Christmas CD, HEAVENLY PEACE -- a soothing collection of Christmas classics accompanied by Celtic harp, available at www.cdbaby.com/madisonsings
All proceeds from this CD will be donated to The Michael J. Fox Foundation for Parkinson's Research. (May be verified by Amanda McDorman at the Fox Foundation: www.teamfox.org
Thank you SO MUCH!
Email: I read your letter in the newsletter for October 2006. I really appreciate what you had to say. I have read most of the article by Patricia Lightner. I will finish it later (probably tomorrow). A lot of people just don't understand how complicated life can be and how you have to plan your days in advance. I could have written almost exactly what Ms. Lightner wrote, if I was a writer. I am going to make sure that some of my friends read her article.
Email: My son's father has PD and I would like to know if this disease is hereditary? My son has been shaking in his hands for no reason??? I have read some on PD, what do you suggest I tell my son??? See a doctor, Please help. Thanks
My Parkinson’s Info Answer: As far as we know, most PD is not hereditary. There are some exceptions, however. There are many reasons, beyond PD, that his hands could be shaking.We recommend that he see a movement disorders specialist, a neurologist who has training beyond residency in diagnosing and treating conditions like your son's, and like his father's. They often practice at universities that have medical schools. If you would like help finding one, tell us what city or town you're in. We'll do a little looking.
Email: My husband has been diagnosed with Parkinson's. He is only taking Sinemet at this time. He was put on Requipp and Mirapex over the summer at different times. They both gave him terrible hallucinations. So, of course, we stopped. His legs are bothering him quite a bit now and when I give him the Sinemet during the day, he falls asleep within a matter of minutes. He also takes the Sinemet before bedtime because he knows he will go to sleep and not be up all night. If he wakes up at 3:00 a.m. in the morning or later, he again takes the Sinemet and goes back to sleep.
The main use for the pill seems to be sleeping. Is that normal?
My Parkinson’s Info Answer: : Yes. Sinemet has a number of side effects; and sleepiness is one of them. It is not the most common side effect, however. Many people also experience the opposite problem. They have trouble sleeping when they take Sinemet.