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On 11 Dec 2003 at 23:56, Nina P. Brown wrote: LIFE WITH PARKINSON'S * * * Good Mornin' Nina and Joe, Nina, your post on this topic is "beautiful" and makes me think "Why couldn't I ( we all ) have said something like this? With your permission, I would like to post this on the MGH site... Best regards, murray * * * Re: MGH PD webforum: Need help! What should I tell it's like living with PD? I just saw this posting and had just written an article on Life with Parkinson's for the January HAPS (Houston Area Parkinson Society) newsletter. Thought I'd share it with you. * * * LIFE WITH PARKINSON'S Nina Brown Parkinson's is usually described as a progressive disease that is "debilitating" and "incurable". Parkinson's has also been described as a "designer disease" because it affects everyone differently. This being the case, when I was asked to write an article on what it's like to live with Parkinson's to help family and friends understand, I realized could only write about what it's like for me. One symptom has followed another since my diagnosis in 1985 but the progression has been slow, allowing me to adjust. Even still, time has a way of passing quicker than we'd like. Initially, I had to give up tennis and skiing. As my symptoms progressed, I had to give up my walker for a scooter. As I write this article, I am struggling with frustration from dealing with dyskinesia, the involuntary movements from the prolonged use of Sinemet. In an attempt to hit the correct keys on the computer for the past 4 hours, I am reminded how similar life with Parkinson's can be to playing a game of cards. You have no control over the hand you are dealt. You just have to play the hand out to the best of your ability. So, what is my life like with Parkinson's when the cards don't fall my way? It can be FRUSTRATING: - When I can no longer read my own writing and am relegated to the computer instead of calligraphy. - When life feels like a roller coaster because of the unpredictable "ups and downs" which make it impossible to plan my day without considering whether I am going to be able to move or have the energy to dress myself. - When my toes cramp so badly I can't walk. - When I am forced to live by the clock because I have to take medication every two hours. - When the cocktail of medications I take, don't work. - When I lean over for a hug, lose my balance and panic inside because I am afraid I will fall. - When doing the simplest of things takes so much longer than it used to take. - When I see a photo or video of myself and my body is contorted or moving abnormally. - When I look in the mirror and the person looking back at me has a blank stare. IT IS FRUSTRATING: - When the autonomic nervous system that regulates my blood pressure, heart rate, bowel movements, bladder function and body temperature tricks my body into thinking I'm hot, causing me to sweat profusely while everyone else is grabbing for their sweaters. - To have to call my husband to pick me up from a shopping trip because I "froze" and was unable to get back to my car. - When tremor affects my ability to paint. - That incontinence is one of my concerns. - Knowing the importance of exercise; I still don't seem to find the time. - Because it is so difficult to describe the myriad of symptoms that are unseen by friends. - That I might lose the ability to drive safely, thereby threatening my independence. - It is frustrating to know that the frustrations of today will seem inconsequential tomorrow. Even the words used to describe Parkinson's can be frustrating. It is frustrating for me to see the word "incurable" when scientists tell us, that with enough money we could have a cure. It is frustrating that as hard as I try, I seem unable to inspire others to work as advocates toward that goal. "Debilitating" is the other word commonly used to describe Parkinson's. Although I may occasionally feel frustrated, I refuse to let my frustrations make me feel debilitated because sometimes the cards do fall my way. - Without Parkinson's, I would not be writing and editing this newsletter which touches so many lives. - Without Parkinson's, my vocabulary would never have expanded to include so much medical terminology. - Without Parkinson's, I would have missed the opportunity of meeting some of the most courageous, inspiring, amazing people I know. - Without Parkinson's, I would never have had the passion or opportunity to fight for and represent the Parkinson community with legislators in Austin and Washington, at press conferences, television debates, fundraising events, etc. - Without Parkinson's, I would never have realized how crucial HAPS services are to so many lives. Unfortunately, there are still many other worthwhile, necessary services that HAPS could offer if more funds were available. Because of this, my husband, Joe, and I volunteered to walk the 5K in the Houston Marathon on behalf of HAPS, January 18th. Joe and I started "training" and I began to have back and sciatic pain that I haven't had since I had a back fusion seven years ago, which is frustrating! But, as you might have gathered by now, Parkinson's has rewards as well as frustrations! I have been overwhelmed by the tremendous outpouring of love and support from family and friends that have volunteered to join us. I may have to call for my scooter in the middle of the walk--but Joe and I will be there, alongside my 87 year old father, our daughter, our son and daughter-in-law, our 7 and 10 year old grandchildren (4 generations) and other family and friends who will proudly walk for the Parkinson community. Life with Parkinson's for the January HAPS (Houston Area Parkinson Society) newsletter written by Nina Brown. * * * cheers ..... murray ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn