Bad diagnosis for Ronnie - Lewey Body Dementia

Bad diagnosis for Ronnie - Lewey Body Dementia

Hi fellow PWP's, His Neuro doc finally listened to what We've been telling him, Rons cognitive issues have become very pronounced and since he still has his disabled son at home, this is very bad news. He put him on the Exelon patch (rivastignimine) but I haven't started him on it because of the side effects and how they might affect his caring for his son. Balance, dizziness, fainting, etc,. We would really appreciate any comments, advice, you can give us. I'm scared and we are alone, so far, in this battle.

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  • Rivastigmine has been tested in phase two trials I. The UK on People with Parkinson's and have been found to be safe and reduce falls by 45%

  • We found rivastimine a total blessing, it gave me back my husband for a long time, but slowly as PD and LB has taken hold he has deterioated now takes 13.3 patches + other medication.

  • Tamarisk Thank you Ladies, does the patch have bad side effects? He has his adult son to take care of, until they find a group home for him, and I'm afraid for Ron because of all the possible side effects

  • No side effects just brought him back to life, he was like a little old man before.

    Worth trying I would say you can always stop.

  • Very encouraging! Ron takes carbidopa 3 times a day, doc says to continue that. Does your hubby take any other meds?

  • Yes he does, he takes Sinemet 25/250mg every three hours now, day and night although if he is sleeping he might miss a dose, also Amtadine, a drug to try and inmprove his bladder function called mitadina, aslo fludrocortisona for his very low blood pressure, he has tried other drugs but the side effect are worse than the benefits, he also has a nutricianal drink to try to keep his weight up he is 6 ft but only weighs 55k, he has had PD for about 15 years but only diagnosed in the last 7-8 years he is 78 and was a terrific walker, that has all gone now.

    We live in sunny Spain so at least he finds it easier to keep warm.

    Hope this helps Lynnie.

  • 🤗 I'm sending you the biggest hug! You have given me so much hope and info! Praying that your hubby has comfort and you have peace of mind. This is a very complex disease 🙏

  • Thank you Lynnie, I return your good wishes.

    Its amazing the strength we find we have in us.

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