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My father was diagnosed with Parkinson's plus syndrome about 4 to 5 years ago

Posted , 3 users are following.

roxii13
roxii13

Parkinson's plus has some of the symptoms of general parkinsons but there can be extra symptoms and the disease progresses faster compared to parkinsons. Sinemet has in the past made my dad quite belligerent but really hasn't made a great difference in the overall lessening of rigidity.

1 like, 7 replies

7 Replies

  • roxii13
    roxii13

    Posted

    Sorry my ipad wasn't letting me finish this 

    The doctors have brought in another drug to help ease his rigidity called entacopone? And this drug has caused hallucinations worse than normal and each night he is fighting wars in his mind with bombs going off and bodies everywhere! He is begging me every day to discontinue the drug! And the nurses are having to fight him to help with his care. He has several cuts due to throwing his weight around and is normally a very quiet human being with a religious background.

    Has anyone else had a similar problem? And did you continue with the treatment? I am responsible for dad's treatment and need to make some serious decisions, if you have any experience with this I would love to hear from you.

     

  • sally_14743
    sally_14743 roxii13

    Posted

    Hi 

    so sorry to hear your dad is having a reaction.

    my mother had parkinsons and I cared for her . For 10 years . 

    i am surprised your specialist hasn't taken your dad immediately off of entacapone because of the reactions.

    does your health authority have a parkinsons nurse you can google to see. If yes ring the number and get the nurse involved . They are excellent.

    there are so many parkinsons drugs he need not suffer. 

    My mum reacted to entacapone after two tablets she became irrational and muddled so she stopped taking them.

    she took sinemet 2 tablets 5 times a day and started to have severe wearing off patches unable to move , stomach pain leg aches panic attacks all signs of the sinemet withdrawal . So they gave her a 24 hour patch rotigone as a constant dose background dose . The difference was amazing . She still took her sinemet but was much more even suffered very little off patches ... 

    My advice all these drugs have side effects after long term use ... 

    Nothing you can do you need the drugs ...

    But if you are reacting straight away to a drug what will your dad be like after months of taking it. What damage will it have done?

    Parkinsons doesn't kill you it is a long long illness . 

    The key is quality of life . 

    The time will come if he lives into his 90s which they do that his tablets won't work anymore . And he will have a poor quality of life unable to move speak etc... 

    Right now he can still enjoy life with the right drugs ...

    he can still talk etc ... 

    Your job is to fight for his rights to a managed illness .

    it can be done ... And then you will have longer with your dad comfortable and un muddled not hysterical. 

    Feel for you . Don't get fobbed off ..

    • helene
      helene sally_14743

      Posted

      well said Sally, i am 63 and have had PD for 10 years after diagnosis .when i was told i had PD i was a mess i took Ropinirol for 6 months and it made me so il i lost 3 stone and could not eat without being nausious . when i went back to my Neurologist he told me if the ropinirol was not working then nothing would as i did not have enough dopamin left to work with the meds.he said i would just have to live with it. i got so depressed i never went back to this neurologist.after a while i seen a poster saying do you have Parkinsons Disease come along to our support group phone Jacqui the Parkinsons nurse so i did .the best thing i done i got a new neurologist a young lady doctor who helped me so much and the nurse is the best ever i can phone her anytime.The Ropinirol was lowered and i got sinimet and Sertraline for depression .i have had a good quality of life for the past 10 years and only now do i feel its not quite working the same.i am on Stalevo 5 times a day and 8 mg of Ropinirol at night still taking the sertraline due to go to the neurologist next month. i am very worried that i will stop walking as i get very bad pains in my legs and fatigue how was your mum is she still with you. sorry i am going on a bit when i read your reply to roxii i thought it was very good advice.
    • sally_14743
      sally_14743 helene

      Posted

      Hi Helene

      sadly my mum died this year aged 83. 

      Still walking, talking etc .... She fell over and broke her hip .

      she was as the parkinsons nurse noted over medicated but happy.

      she wanted to be able to walk etc and she didn't like the leg aches and stomach pains that occurred in her off patches. So she was on maximum sinemet and then this rotigone patch as she too had struggled with ropinerole. So she didnt experience long off patches.

      She enjoyed life but the side effects were dysphasia (body movements) she would raise her arm in the air , then as doses increased her leg too. When the doctor asked if it bothered her she said no I feel good. 

      The risk of body movement is falling ...

      but her choice she was active to the end she stood up from watching TV walked with her pusher and just fell side ways she was with a friend at the time.

      my advice is quality of life ....

      i am sorry you got this rotten disease so young but glad you have a Parkinsons nurse. 

      Biggest enemy is stress ... Stress fear etc just stops the tablets working..that's why taking anti depressants so important . Mum did increase them to help her . Also get your vit b12 checked if you are on a proton pump inhibitor like omeprazole they can stop you absorbing vit b . Mum got a sore tongue numb feet and fatigue before they realised. Then she had regular vit b12 injections which helps parkinsons. 

      Hope that helps 

      Sally 

       

    • helene
      helene sally_14743

      Posted

      OH Sally, you have just hit the nail on the head i had no idea about vit b 12

      for the past year i have been getting  little blisters on my tongue i always have a soar mouth.,and my feet  sometimes feel like two wooden blocks.i also get fatigue a lot.i went to the doc this morning before i read your post or i would have asked her ,i will ask the next time im at the docs. I am so sorry to here that your mum is not with us  she sounds a bit like me dont give in to it keep going.i find if im busy im ok as soon as i sit down im feeling ill when i go to the support group i feel lucky as i can still do most things and i can help the older more fragile people  thank you so much for your input  Helene

    • sally_14743
      sally_14743 helene

      Posted

      Thankyou Helene smile 

      if it is vit b12 defiency the  injections  did reverse the sore tongue and fatigue but it didn't reverse the numb feet .. 

      I hope all goes well 

      Sally 

  • helene
    helene roxii13

    Posted

    Hi Roxii,i have just replyed to Sally about her advise very good.

    i have PD but never heard of Parkinson's plus i must google that.

    i hope you have a Parkinsons nurse near you as they are wonderful

    i was diagnosed 10 years ago i was 53 but i had it for at least 4 years before that.Iam just getting to the stage my meds arent working so god as some symptoms have come back ,i cant complain as i have had 8 good years .i wont give in to it my meds can be put up or changed around there are a lot of diffrent ones .at my support group i have made many good friends and we are all on diffrent meds so hopefuly your dad will get that extra support and find the best one for him .take care 

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