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Nina What an amazing job you did of telling how PD affects you! You won't believe this, but I used many of your same phrases : designer disease, incurable, having to call my husband to pick me up, frustration, dyskinesia, FRUSTRATION, life being like a roller coaster, toe cramps, living by the clock (or living life around the medicine bottle), trying to explain unseen symptoms to others, and FRUSTRATION! I, too, expressed the "positives" of having PD - and yes, there are some. I have hope and am able to fight that battle of hope with some terrific people. But you said that part much more eloquently than I did! I wish I had seen your article before I went! (Maybe you'll give me permission to use your thoughts should the opportunity come again?) God bless you, Nina, for all that you and hubby, Joe, do for our PD community! Peggy ----- Original Message ----- From: "Nina P. Brown" <[log in to unmask]> To: <[log in to unmask]> Sent: Friday, December 12, 2003 12:56 AM Subject: 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. > > > > > > > > -----Original Message----- > From: Parkinson's Information Exchange Network [mailto:[log in to unmask]] On Behalf Of janet paterson > Sent: Thursday, December 04, 2003 3:17 AM > To: [log in to unmask] > Subject: MGH PD webforum: Need help! What should I tell it's like living with PD? > > > > hi all > > > > peggy wrote, in part: > > > A pharmaceutical company is flying me to St. > > > Louis next week (Monday) to speak to about > > > 200 newly trained pharm reps. The topic: > > > "What It's Like to Live With Parkinson's" > > > I want to be sure that I don't leave out > > > anything, so I need your responses here, > > > and I need them fast! I will only have about > > > 20 minutes to convey to many who don't have > > > a clue as to PD's effect, so be brief but > > > thorough ... > > > > and then someone wrote, in part: > > > It's like living in a glass house and watching > > > the world live its life ... > > > > and then someone wrote, in part: > > > Someone recently said to me that the effects > > > Parkinson's has on a person can seem like > > > character flaws to anyone who doesn't know > > > what Parkinson's is ... it's extremely > > > frustrating to live with Parkinson's and > > > it never gets any better ... > > > > and then someone wrote, in part: > > > Not being able to make plans to do things > > > with friends because you don't know if you > > > will be off or on at a future date. This > > > tends to add to the isolation ... > > > > and then someone wrote, in part: > > > PD is great fun if you are a masochist, If > > > you enjoy watching your physical abilities > > > gradually diminish over time, where it takes > > > all your concentration to get across a room ... > > > > and then peggy wrote, in part: > > > Thanks for your input ... make those guys > > > and gals who will be out there presenting > > > the medical profession with reasons why to > > > invest in their medication to drop their > > > jaws in shock when they hear what it's > > > really like. These sales reps will be > > > the young "beautiful" people who have > > > charisma and have never even seen someone > > > who had to lose their self-dignity to such > > > a debilitating disease ... "Your self-image > > > is reduced until you feel like a freak in > > > a side show." "You become a prisoner trapped > > > in your own body." "You lose your dignity > > > when someone has to help you do a task as > > > simple as going to the bathroom." I don't > > > want to scare newcomers here, but I am > > > thinking of the worst scenario in order > > > to "get my point across." ... > > > > and then greg wrote, in part: > > > Tell them we are not little profit centers. > > > Tell them we are their brothers and sons > > > and mothers and friends and uncles and aunts > > > and fathers. Tell them to do their jobs in > > > a way that allows them to sleep well at > > > night. Tell them that we need their help > > > as we fight to save ourselves. Tell them > > > to care. Tell them we are them ... > > > > for me > > it's a gift > > a tough slap-upside-the-head kind of gift > > but a gift nonetheless > > > > it forced me to look hard at my life > > and at my priorities > > > > i had to make some changes > > > > what i had thought was important > > suddenly wasn't > > > > what i had thought was cornball sentimentality > > suddenly wasn't > > > > i grew to learn that i had not received > > a sentence to a living hell > > > > i grew to learn that any 'hell' was > > of my own making and my own thinking > > > > i grew to learn that this is a tough test > > is all > > > > i am in competition with no one > > > > i am not being punished > > > > i am being challenged > > > > i will rise to it > > > > and thus find the gift in it > > > > janet > > > > ps > > that does not mean that i would refuse help > > i am not a martyr > > i need intelligent caring people on my side > > as much as anyone does > > and a smart and sensitive pharmaceutical expert > > just might be one of the most important > > members of my health care team > > > > -- > > janet paterson > > a new voice http://www.janetpaterson.net/ > > pd: 56-41-37 cd: 56-44-43 tel: 613-256-8340 > > an akinetic rigid subtype, albeit primarily perky, parky > > > > ---------------------------------------------------------------------- > > To sign-off Parkinsn send a message to: mailto:[log in to unmask] > > In the body of the message put: signoff parkinsn > > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: mailto:[log in to unmask] > In the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn