Informative information from those at the coalface!

[honjen43]

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!

[Kevin_1]

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.

[abirke in reply to Kevin_1]

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 !

AVB

"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

[honjen43 in reply to Kevin_1]

Mine too. That is why I signed on!

[vlh4444]

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.

Vicki

[honjen43 in reply to vlh4444]

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.

[Sonia1970]

Wow so right it's a monster and sadly the one person I want more than anything to knock on my door and say honey I'm here for you is my dad but he won't he sadly no refused to speak to my psychologist at Parkinson's nsw who's amazing she taught me alot about this monster the rest I've had to learn myself I to have not responded with to any Parkinson's medic to why because cortisal basal ganglionic I degeneration doesn't it's a slow monster that takes little by little it a lot to fast my life will be cut short but I fight why I have no choice because my son and my partner need me

[honjen43]

I was annoyed and angry at my love for his behaviour in the early days as we neither of us realized it was part of something more than just aging or getting set in his ways. He probably began symptoms around 5 or 6 years before we had a diagnosis, and symptoms were masked by other more immediate problems, like needing a pacemaker, diabetes, skin disorder, and Parkinsonisms.

And remember the timeframe is different for everyone!

Keep trying to talk to your dad. At some point he will realize something has changed. Keep your toe in the door so it doesn't shut completely!

None of this stopped my love from doing what he planned to do. We made a trip to UK, Rarotonga, and around South Island, as well as holidays to Northland where we walked a lot.

But he was always someone who kept his own counsel and talked little of important things, read a great deal and spent time on the computer playing Solitaire. This last thing drove me nuts! and I frequently threatened to switch him off at the wall! That was after he had gone to do a 10 minute job and still had not done it 3-5 hours later!

I don't think he ever tried to analyse his actions or feelings or symptoms. That was not his way. I don't think he was aware of how sick he was when he went into hospital, until close to the end.

You have good chances on your side with fore-knowledge. Talk to your specialist about research on CBD. Learn as much as you can. The American websites have a lot of info. NINDS and psplife I think and others. One of this PSP group called Mnd0vrmnky has passed on some good sites. If you type @ before the name a blue bar appears so you can alert her you would like to access the info she has previously left. There may be something there you can try with your specialist, or there may be a trial.

Don't think there is anything going in NZ, but the young Canadian who diagnosed my husband was most enthusiastic about the properties of coconut oil! He himself took it daily and was a very bright guy! Think it was too late for my love. But is worth trying for you! He suggested 2 tablespoons a day, but beware - it is a laxative in that quantity so start slowly !! Other thing mentioned is CoEnzymeQ10. Have used what I can access from the chemist and it does seem to make my mind sharper. My love refused to take anything of that sort!

Meantime, do the best you can with what you have. Let's face it, any of us could get hit by a bus any time!! No chance to prepare for that!

Hugs

Jen xxx