coping with parkinsons

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sad i was first told i had parkinsons in june1998.it was a shock,i was 46 with two young children.it started with my thumb shaking,the dr said it was nothing to worry about,loads of people have unexplained tremors. my husband was'nt happy with this,so we had to pay to see a consultant.after loads of test and mri scan i was told,its been a slow progression.until now .i can't walk unaided or turn around i keep freezing and find it hard to start again.i must now start levodpa as i can't swallow.i'm afraid i'm not coping very well and feel guilty when i have to ask my family for help.it's the frustration of being helpless . i hope when this medicine kicks in things will change for the better,and i can do things for myself again. heres praying

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  • Posted

    Hi, I've had PD for nearly 8 years now but was only diagnosed three years ago after years of test after test until i developed a tremor and they discided to do a dat scan and it clearly showed PD. Like you i was having problems with freezing and walking became very slow and limited. I started taking dopamine agonists which helped but in the last year i've had to introduce levodopa. This made a dramatic change and helped me to regain alot of my independance. I can truly appreciate your anxieties and the problem with anxiety and PD is it makes your symptoms a lot worse. It will take a few months for your body to get the full benefit of the medication and you may feel a little perculiar at first along with some unwanted side effects such a nausea and dizziness. Given time these side effects will settle and you will be amazed as to how much better you feel. I advice you to keep a drugs diary and monitor how you respond to treatment. Log day to day times when taking medication and how you feel through out the day, also make note of food intake as protien intake can affect the efficiency of the levadopa. Best to take levodopa a hour before or after food or with a biscuit. Anti-sickness tablets can be prescribed to treat nausea but this normaly stops after a few weeks of taking medication so don't let this put you off. Follow your neurologist's advice and by keeping a drugs diary your specialist will be able to tailor your medication to your needs. It's trial and error until you get the right timings and type of medication that suits your paticuliar needs. I wish you will, Jackie smile
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    • Posted

      Today was my first day on carb/levodopa and in the early afternoon, I got very dizzy, weak, nauseous and fainty.  This lasted for an hour or so.  Few hours later I am feeling better so glad to hear this will, in time, get better.
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  • Posted

    hi jackie thanks for your reply how old were you when it started. how are you coping now have you got the right medication .i am waiting to go into hospital to be monitored to find the right dose,as i can't walk at all now unaided,it is very frustrating especially when you've been very active. i live in west sussex how about you? my children are marvellous,but i hate asking for help,especially getting dressed.i'm looking forwad to getting out of hospital a new woman and being able to walk alone again.
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  • Posted

    So sorry this struck you at such a young age.  My husband, several years ago, started with his thumb shaking and quivering and his family Dr. just kept saying it was some minor tremor.  Then he started walking so slow and dragging his right foot and the same Dr. told him it was his age.  Finally, his blood showed something that resulted in his being referred to an Internist.  The day he walked in that Dr's office, he was told he needed to see a Neurologist.  That was 3 months ago and this week he had a followup and has been put on carbo/levodopa.  The first dose was yesterday and he got very dizzy, nauseous, fainty and abdominal cramps.  Today has been a little better.  Just hope he can continue and these side effects will get less and the positive results from the med. will help.  Would love to know how you are doing on this med.
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