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Kees, Thank you for haring your story. I'm sure it gives many of us hope. Carole --- Kees Paap <[log in to unmask]> wrote: > Hi everyone, > > It has been at least 3 years since I was an active member > of this list. Lots > of things have changed in my life since then. A short > introduction of my > life with Parkinson till 3 years ago, followed by a > little longer story > about the last 3 years. People who don't like > introduction can delete this > message now, or skip to the end of this E-mail. > > It started innocent enough, a light tremor in my right > hand, easy tired and > worse handwriting. "A Carpal Tunnel Syndrome", the > neurologist said, "If it > doesn't pass you will need a surgery". That was not > exactly what he said, > because he was -like me- a Dutchman, but the translation > is close enough. Of > course I got the surgery, but the symtoms didn't go away. > During a holidayKees, > of my neurologist I got to visit with his colleague who > was right with his > very fast diagnose of Parkinson's Disease. He sent me for > a second opinion > to a professor in the north of the Netherlands, who > confimed his diagnose. > It was may 6,1989, I was 39 years old, I remember to feel > relieved that it > was not a brain tumor, but what was it then? > > I have learned a few things since then. It ruins your > life, if you let it. I > didn't let it. But it has had its price. I was very > active in the > Association of the yoppers in the Netherlands and later > also in the young > onset movement of Europe. I have had my ups and downs, > following my ups and > downs in my PD. I got divorced in 1979, but I got married > again in 1998, > with an American Surgeon. She loves me in spite of my PD > and she knows what > PD is and does to people. I moved to the USA. We live in > Waco, the center of > Texas. > > During the years my PD progressed and in 1999 I had a > Pallodotomy. I had a > lot of Dyskenesia's, which all disappeared for about a > year. In the > progression of my PD, I used more and more, and different > kinds of > medication. I have used Sinemet, Eldepryl, Parlodel, > Amantadine, Permax, > Requip and Comtan. > > In Januari 2002 my daughter Suzanna was born; A gift from > Heaven. But my PD > didn't care, it got worse and worse. I didn't dare to > carry Suzanna, because > I had fallen several times with her in my arms. To > protect her I managed to > fell on my back or my knees. That was fine with her -she > liked it even- but > not fine with me. I broke a rib and I still cannot crawl > on my knees. I > froze regurlaly and my Dyskenesia's got worse. October > 2002 I used the > following meds. 7 x a day Sinemet CR 50/250, 7x Comtan > 200, 7x Permax 1.0 > and 2 x Sinemet 25/100. I was still freezing and had a > lot Dysenesia. > > October 2, 2002 I had a bilateral DBS-STN. From that > moment on I improved > regurlaly. Dr Dessaloms, neurosurgeon in the Presbyterian > Hospital in Dallas > did the surgery and Dr. Stewart, neurologist in the same > hospital does the > adjustments of the DBS-STN. I needed quite a bit of > adjustments, but I > improved slowly. Until the last adjustment. I improved > very much. I am > almost leading a normal life now. (what is normal for a > 54 year old men, > married to a general surgeon of 43, with a daughter of > 2.5, who is the sun > in many lives?). > > We slowly started with Sinemet, then added Amantadine, > followed by Requip. > Somewhere in the process I started using Q10. I use the > following meds now > : 3 x Sinemet CR 50/250 mg, 3 x Comtan 200g, 3 x > Amantadine 100, 3 x > Requip 3 mg and 3 x CQ 10 400mg. Every other day or two > days I break a > Sinemet in half and take in the evening half a tablet. > > I gained a lot of weight (50 pounds) in the one and a > half year period > between the surgery and the last adjustment in April. Due > to no movement and > due to a lot of rest. I sleep very well. Since April I > lost 10 pounds, so I > have only 40 to go. I play golf again (very bad) and 2 > leagues of bowling. > Further I am working in the Yard again and doing more in > the house. I still > have a lot to catch up, but with a little girl around it > is not easy to do > much. We have help in the mornings for Suzanna but > instead of doing a lot I > enjoy the calm mornings. In the evenings I like to go to > bed early, because > I am tired by 10 or 10.30, but hey I am 54. I am not in a > good shape > anymore, but I am working on it. > > The scientsts promised us, 3 years, ago a solution in 5 > years. Now they say > it takes 4 years, so we made progress, only 12 years to > go and we will be > cured. I read that if they find a cure now it takes 10 > years before it is on > the market for everyone. So in 22 years we will all be > cured. Well, they say > DBS-STN is not a cure, but to me it makes life as > "normal" as can be. I can > wait 22 years now :). Every year sooner is a year less > with batteries in my > chest, although they are not the worst things that > happens to a PD patient. > It is not a fine feeling when Suzanna stands on them, but > at least she has > something to stand on. Take care and keep up all the good > work and the > support we give each other. Don't let PD get you, but > make the best of it. > > > Kees Paap > 1885 McLennanCrossing Road > Waco, TX 76712 > tel 1 254 848 9652 > > ---------------------------------------------------------------------- > 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