 |
 |
Welcome back Kees! It was good to hear from you again and about the good results from your DBS surgery. Your optimistic outlook on life with Parkinson's should inspire many others. Take care, Linda On Mon, 12 Jul 2004 16:47:50 -0500 Kees Paap <[log in to unmask]> writes: > 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 > holiday > 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