Informative information from those at the coalface!

Hi all, I am new here. My husband has just been disgnosed with CBD after a year of Parkinson's medication. I think he is well advanced along this horrid road. In 3 weeks from a stumbling, happy, cognitive being, to a sad soul who cs no longer, walk, converse, feed himself, read, play sudoku, stay alert. He has had reduced stamina and poor gait for several years. I began to realise he could not live st home for much longer without alterations being made to various parts of the house. Getting him into hospital 3 weeks ago has confirmed my fears as he has degenerated so much in this period. I know he will not be allowed to return. That is so obvious! Despite the battle I have had to keep neurology on the team, they have confirmed my fears - that this is not Parkinsons or Altzeimers, but a much nastier monster.

I have read so many posts here that will help me understand what I have to help my man through. I don't look forward to it, but I find knowing helps me prepare my thoughts. I cannot believe he will endure another 2 years of this! I hope he will not have to!

I have gained great indight here! Far more than any specialist can give! My thoughts go out to all others in my situation. Love them while you have them. When the day is bad, don't give up. I have found surprising pearls of wisdom still pop out of his tired brain - as random as the rambling comments - but oh! such joy to realise he is still there, if I can reach him!

Thanks for being there! Hope I can also be of help to others!

5 Replies

  • Hello

    My experience is that this is a supportive place with warm, experienced and sensible people.

    I am so sorry to hear your news. Yes, it can feel very grim some days. Repeated loss and heartache and frustration.

    Well - Welcome - you are amongst good people.

  • Honjen 43,

    Although this site has mostly PSP patients and carers , welcome. I don't know much about CBD, but that like PSP, it is progressively debilitating. This is a good site to find answers or at least solace though I wonder if there isn't a site more specific to the needs of CBD. It, like PSP, has it's own nuances that may not be as well addressed on this site. But until you can find a better place to rant rave inform and be informed, welcome !


    "Fear not for I am with you: be not dismayed; for I am your God. I will strengthen you yea, I will help you I will uphold you with the right hand of my righteousness" Isaiah 41:10

    And let us not be weary in well doing (No matter what that might entail, Honjen)for in due season we shall reap , if we faint not

    Galatians 6:9

  • Mine too. That is why I signed on!

  • Welcome to the site Honjen 43. My husband suffers from PSP but I know there are a good number of people on here who suffer from or care for someone who suffers from CBD. In many cases a I think the symptoms overlap a good deal anyway.

    Are you in UK? I hope you are able to access all the help you need from the various agencies involved. PSPA in UK or Cure PSP in USA can give you lots of advice.


  • No. I left UK 45 years ago and now live in the Antipodes! So far, may be teaching the docs! Maybe some group will come to light with my searching.

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