Leon Celnik
Forum Replies Created
-
I am 74 and was diagnosed with PD some 10 years ago. I had DBS surgery in 2021. Since then, I don’t have had hand tremors neither dyskinesia. I feel relatively well. I don`t have constipation, but it’s quite irregular. Since the operation, I take one pill of levodopa/carbidopa once a day in the morning, and 4 drops (0.2cc) of Clonazepam each night before trying to sleep
Besides, I have:
Short term memory loss. I even forget essential words when I speak.
Insomnia, and nightmares that feel quite real (in fact, I have fallen from my bed)
Tinnitus (hear high pitch noises all day) -don’t know if this is related to PD
Fatigue
Difficulty swallowing
Continuous flu and cough
Loss of balance
Dizziness and low blood pressure
My speech becomes slurred at times, in fact, sometimes I can’t understand it. This produces me lot of anguish.
However, whatever it is, my life has been quite better since the surgery.
-
I don’t have enough good words to describe what my life has been like after the DBS. Having gone through a crisis of uncontrolled movements and dyskinesia that forced me to ask for help to my wife even with the food, I found these doctors in Colombia who, after a long exhaustive and critical analysis, with the assistance of professionals of the highest quality in the hospital, decided to propose the mentioned surgery. At first, I was quite nervous, particularly that messing with my brain wasn’t easy to accept. I had to go to a psychiatrist, who prepared me for facing without fear the issue. During the surgery I was only awakened for the calibration of the sensors introduced in my brain, but it really wasn’t scary at all. In a single session of 13 hours, they did everything to me, the placement of the two electrodes, the connection of the wiring and the fixing of the generator into my chest. Today I thank G’d, the physicians and my wife who make this miracle possible to me. Drinking a glass of water without spilling it and being in a meeting with friends and not moving uncontrollably, among other thinks that everyone gives for granted is worth everything. As today, I drink 1 ½ pills of Levodopa/Carbidopa daily and have my neurologist supervision every 4 to 6 months, where I am checked and recalibrated my pulse generator when required.
-
During some time, I decreased the dose of nightly Clonazepam and my dreams (nightmares) got so real, I couldn’t differentiate the reality from the fantasy, even shouting and sweating. So right now, I’m convinced that I must have this drug daily. The problem, my neurologist says, is the PD.
-
I’ve been using 5 drops of Clonazepam almost every night for the last 5 years. I don’t know if its adictive, but right now I can’t sleep without it. In fact, when I’m overexcited or nervous, I can’t sleep at all. I think that it has all to do with my PD, more than the drug.
-
Yes. I had my DBS in march ’21, almost 1 ½ years ago. Right now, I’m 90% well. I have not diskinesia; my hands are stable. Only my voice is a tiny trembling, and some times I forget the words. My right leg is occasionally trembling a little bit, and some of imbalance (but I haven’t fallen once). But I normally drive my car, with all the precautions, of course, and have a normal life. I drink two Carbidopa/Levodopa pills a day and that’s all. By night, I drink 3 drops of Clonazepam for sleeping and some times I have very real dreams, as if it was present. Eventually I have ghost smells, but it is not something disabling. I’m conscious that DBS is not a solution but a palliative, but I can live with it, as long as my PD is not increasing. I´m very happy to had this surgery.
-
I am 72 but feel a lot younger. The last 10 years have been traumatic, worsening by the minute. The last one was horrible. Besides of the dreadful and disabling dyskinesia, lately I just couldn’t hold steady a glass, a spoon or a knife with my bare hands and my wife had to help me to eat, so, I took the determination of having DBS surgery. It was not an easy choice. I feared having my brain exposed and scrambled, and, worst of all, the terrifying idea of staying conscious at part of the intervention. Not only my fears about the operation itself, but I had to appeal to a psychologist to help me keep calm during the procedure. I had to be convinced that it was a good thing and should face it. I live in Bogota, Colombia, and had my doubts about the quality of the equipment, technique and the medics’ operating skills . But anyway, I took the decision to go for it. At last, I got the surgery in February this year. Being awake during part of the surgery was quite easy and not as traumatic as I thought. The anesthesiologist did the magic. The intervention took about 14 hours at all, including the insertion of the neurostimulator in my chest, but I was asleep almost all the time. They finished at night (since 7 AM) and I had a good and quiet night. The next day, almost 12 hours later, they sent me to my home, prescribed with only Acetaminophen if I felt pain. Since then, my life turned 180 degrees. Its like born again. Right now, I have a normal life. No more dyskinesia, no more tremors, which disappeared almost 80%. Nobody knows what it is worth to drink a glass of water without watering it, cut a piece of meat by yourself and so on, actions that one does for granted. I’m conscious that this is not the end of my illness, but now I have a normal life, I walk without falling, I drive my car (obviously taking all the precautions). The only remnants of the sickness are the lost of balance at rare times, and the hands trembling is almost imperceptible. I’m quite happy and grateful to know that here in Colombia we have such advanced medicine and thankful to the neurologists that make it possible.