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Neuroscience Clinic Webmaster wrote: > > check out www.pallidotomy.com for Parkinson information. > > > From: Ronaky Olga <[log in to unmask]> > > Reply-To: "Parkinson's Information Exchange Network" > > <[log in to unmask]> > > Date: Sun, 31 Aug 1980 22:44:50 +0200 > > To: [log in to unmask] > > Subject: Hi everybody > > > > My name is Oga Maria, I'm writing you from Hungary, Europe. I'm 49, married, > > have two daughters (26 and 24), one dog and two cats.I joined your list just a > > few days ago. I have had PD for 10 years, but it took the doctors almost 7 > > years to diagnose me and in that time wrote me off as a nervous person with > > several rheumatological and unknown problems. Two years ago they put the name > > of my illness, but it was not at all the name I wanted, I expected something > > better that could be fixed and stopped. For a long time I was very depressed > > (sometimes I still am) but after a while I adjusted to PD and I try to live a > > quite normal life - if a normal life is possible wirth PD. I mainly have > > symptoms (tremor and rigidity) on my right side and a little on my face, too. HI I tremor most of the time. I am sort of use it. I have tremoring for over 25 years. I am 43. Never kept me home nor from going to graduate school. Just had to cut my career short:) like worked 5 years. anyway, I was smart enough to chose a job that paid most of the health insurance and med costs over a big salary. Something I know can be easily taken away also. Nothing is set in stone:) Here are some tips I do-- > > I have problems with writing I USE THE COMPUTER AND PRINT OR FAX WHAT I NEED TO. WHEN I MANUALLY PRINT , THEN I USE 2 LINES. DOESN'T MATTER TO ME IF I STAY ON THE LINE. , going upstairs and downstairs, DON'T THINK THEY HAVE THESE IN HUNGARY, BUT WE HAVE THESE CHAIRS THAT GO UP AND DOWN THE STAIRS CALLED STAIR GLIDES. dO U HAVE THOSE THERE? HERE IN THE STATES, PEOPLE GENERALLY PAY OUT OF THERE POCKET FOR THEM. COSTS APPROX. 3000. (USED) AND UP INCLUDING INSTALLATION. IF THAT IS NOT AN OPTION, I ALSO USE TO SIT ON THE STEPS AND USE MY REAR TO GO DOWN WITH SOMEONE INFRONT OF ME. I WOULD WAIT UNTIL I GOT DOWN THE STEPS TO PUT MY SKIRT OR PANTS ON. DRESSES- I JUST TUCK UNDER AND SCOOT DOWN THE STEPS ON MY REAR. IF THAT ISN'T GOOD THEN, I SLEPT DOWNSTAIRS IN MY RECLINER ELEVATING MY LEGS ABOVE MY HEART. THE ABOVE ISN'T THE END OF THE WORLD. I AM JUST GLAD TO GET OUT:) doing my work at > > home, and there are days when I even am unable for example to cut a slice of > > bread, SLICING BREAD HAVE THE STORE SLICE IT. I KNOW FRESH BREAD GET STALE FASTER. OH WHAT ABOUT A BREAD MAKER. MY HUSBAND MAKES BREAD WITH ONE. HE JUST PUTS FLOUR, EGG, YEAST, ECT. IN AND SETS THE TIMER. wHEN IT IS DONE, THE B.MAKER SHUTS OFF. I USE TO DO THE BAKING, BUT MY HUSBAND LOVES BREAD SO HE MAKES IT NOW. MY SON KNOWS TOO. THEY BOTH COOK. MY HUSBAND IS A DEPT. CHAIRMAN AND VERY BUSY, BUT HE FINDS THE TIME. I cannot speak for longer time and my voice has changed, VOICE.... SPEECH LANGUAGE PATHOLOGIST - PROFESSIONAL NAME. OR SPEECH LANGUAGE THERAPIST ONE WHO SPECIALIZES IN VOICE, SWALLOWING, AND ADULT LANGUAGE IS GOOD. PREVIOUSLY, AN AMPLIFIER WAS USED BY ME. U COULD HEAR ME ALL OVER THE HOUSE:) PRESENTLY, I USE INTERCOMS FROM RADIO SHACK. THEY WORK OK. ALSO,I SEEM TO TALK MOSTLY IN THE MORNING, SO PEOPLE WHO ARE AROUND ME ARE USE TO THAT PATTERN AND JUST LISTEN MORE THAN RESPOND:) THE PHONE HAS A HEADSET FOR USE. I USED TO USE SIGN LANGUAGE AND I GUESS MY FACE AND HAND GESTURES ADD MEANING TO MY VERBAL COMMUNICATION. BEFORE MY MEDS WERE FINE TUNED I OFTEN RESORTED TO SIGN LANGUAGE. FASTER TO COMMUNICATE. UNFORTUNATELY, MANY PEOPLE DO NOT KNOW SIGN LANGUAGE. MY SON DID AND MY HUSBAND NOW KNOWS SOME SIGNS. PEOPLE USE THEIR HANDS ALL THE TIME TO COMMUNICATE. IT IS OK. many times I > > am not able to eat or drink normally, etc. GET A REFERRAL TO A SPEECH LANGUAGE PATHOLGIST. I often have extraordinary strong > > pain in my neck, shoulders, spinale column and limbs, hardly I can sleep over > > a night, I dream nightmares. CAN U PHONE, FAX OR EMAIL UR DOC?? THIS COULD BE SO MANY DIFFERENT THINGS AND A PHYSICIAN HAS TO LOOK AT UR MEDS, POSTURE, ECT. WHEN I WENT TO THE ORCHESTRA, I USED A SOFT CERVICAL COLLAR, BUT A OT AND PT SHOWED ME HOW TO WEAR IT.ALSO, THE HALL HAD PILLOWS FOR THE PATRONS. ASK! OR BRING UR OWN. I HAVE DOWN THESE THINGS WHILE IN EUROPE, NONE CARED. I RECENTLY WENT TO AN MEDICAL MEETING IN EUROPE AND THEY HAD THESE REALLY NEAT RECLINING CHAIRS AT A CASTLE WITH ORCHESTRA AND ALL. I WAS IN MY EVENING GOWN. I SAT IN THE RECLINING CHAIR. I WAS TIRED AND VALUED STAYING AWAKE DURING DINNER OVER THE COCKTAIL HOUR. U KNOW 3 OTHER LADIES SAT IN THE CHAIRS AND WE ALL TALKED. IT WAS BEAUTIFUL LOOKING AT THE SKY AND ALPS, LISTENING TO THE MUSIC. DURING THE DAY I WAS IN REHAB AND NAPPED. ONE DAY I WENT WITH THE OTHERS AND SHOPPED FOR SHOES OF COURSE:) TRYING TO TELL U IT IS GOING TO BE OK. SOMETIME DEPRESSING/SAD AND SOMETIMES GREAT AND ALL IN-BETWEEN. I ALSO WENT TO A REHAB NEURO DOC. I READ OR WATCH TV OR TURN ON MY COMPUTER TO FALL ASLEEP. I REMEMBERED WHEN MY SON WAS A BABY, HE USE TO FALL ASLEEP IN THE COMPUTER LAB, SO I TRIED IT AND IT WORKS FOR ME. I do also have almost all of the secondary > > symptoms. My illness progressed to that point that I took disability > > retirement in January 2000. > > Here in Hungary we use the same meds as you do, but there are problems with > > informing the patients. All I know about PD is from the USA and Canada, via > > internet. I dare say that on our mother tongue people can get zero information > > on their own illness. > > DO U HAVE A 3 WHEEL WALKER WITH HAND BRAKES FOR BUSY TRIPS?? THEY CALL THEM ROLLATORS OR WINNIE WALKERS IN EUROPE I HAVE HEARD. I CAN WALK FASTER AND LONGER WITH MY WALKER. ALSO, HAVE A RECLINING WHEELCHAIR WITH LEG RESTS THAT ELEVATE. I KNOW THINGS COSTS THOUGH.... SOMETIMES UNIVERSITY PEOPLE MAY BE SOMEONE TO TALK WITH. > > I am on Amantadine 4 times/day, Mirapexin and Rivotril also 4 times/day (only > > under normal conditions, this means that if there is a party at us, or I go to > > theatre or to the Opera, or I must do the shopping, CAN THE SHOPPING BE DONE THE DAY BEFORE?? UR HUSBAND GET THE STUFF ON THE WAY HOME FROM WORK? I NAP 3-4 HOURS BEFORE I HAVE AN EVENT LIKE THAT. HAVE UR HUSBAND DROP U OFF AT THE FRONT OR THE THEATER AND U SIT INSIDE AND WAIT FOR HIM. THAT IS ALL FOR NOW. NANCY so if something special > > happens, I have to take more meds) Zoloft 1/day, Concor 5 (because of the > > frequent extrasystoles in my heart), a special med 3/day for urine problems, > > and four kinds of the California Fitness products (Green Care, Acidophilus, > > multivitamins: New Life, and Citrimax & Chromium). > > > > Any information and practical advice on life style, what to eat, eating and > > meds and vitamins or others - mainly their relation and effect on my PD and on > > my body functions, would be highly appreciated. > > > > I am going to travel to Austria on Saturday and return on next Saturday. I > > will answer your message after coming home. > > > > Greetings and my best wishes to everybody, > > Thanks > > > > Olga Maria > > > > ---------------------------------------------------------------------- > > 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