Confused

On reading all you lovely people's post it appears that either you or your loved ones are suffering from psp. I am very confused with Brian's diagnosis as the neurologist said he had a mixture of psp and cbd and dementia.

They have never explained as to how the illness will progess but only that there is no treatment.

I have looked on line about the disease but it all seems very conflicting.

Brian no longer walks although can weight bear, his right side seems worse than his left and is unable to use his right hand at all.He is able to swallow well but does muddle his words sometimes.

I would be interested to hear from anyone suffering from cbd so that I was more aware

Of what to expect. Love to everyone xx

8 Replies

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  • Hi cillat, no need to be confused. All are brain disorders, all (I think) caused by buildup of the tau protein, and have similar symptoms at times, and some specific symptoms such as alien limb (CBD) or upward gaze (PSP), or dementia as in Altzheimers. Some overlap, timeframe is difficult to predict but there is no cure for any so far. Confusion at diagnosis is more on onset of symptoms, and timeframe, and progression. As he progresses you will see pointers one way or another, as well as overlaps.

    Find a good specialist and nursing staff who understand all aspects of each of the possibilities, as you will need additional help.

    Don't be concerned at what name to put on the disease.

    Just be thankful you know time is limited and make all you can of that time while you can do that fully together!

    Make plans to do things together if you are able, discuss 'end of life' circumstances and put affairs in order while you are able to discuss it together before the illness gets in the way!

    Create an environment where you can talk frankly together about your fears, hopes, and the future, and your family. Find someone you can both talk to, together and separately, so you both have a support network. If you are Christian, talk to God and ask his help in dealing with this Devil!

    Many here have found it a long, hard and harrowing road, whatever name it goes under. They have given it their ALL and have cared for their loved one to the end. You will do what you have to do to the best of your ability!

    We will be here to help, encourage and advise you and will listen to your worries and fears.

    We have all been there, at all stages on the way, and can support you on your journey.

    Hugs to you both as you begin.

    Jen xxx

  • Well said, Jen. I can't improve on your reply. Love to you and all here, Ec

  • Thanks Jen. Brian is unaware of his condition although neurologist explained to him that it was cbd etc by the time he got home he had blocked that out. He doesn't realise that it is terminal and keeps asking me to look for cures for Parkinsons as in his head that is what he has. The neurologist thought it kinder to let him believe that although not to lie to him.

    Although the Parkinson nurse comes out to see us once a year and the dementia nurse we have little contact with anyone else.

    When we saw the neurologist in March he more or less asked if we wanted to see him again,I felt he was saying there is nothing we can do so there is no point.

    Have you any suggestions as to whom would be the best person to contact for support.

    Many thanks for your reply.

    Love Cilla x

  • You are probably in the best place to find answers!!

    I had similar experience with my John. Don't think he was aware he was dying until he was told he had to go into hospital care in a home rather than return home. Read my posts if you feel strong. They cover his last 3months.

    If Brian wants "cures", there are various suggestions made in posts here.. Coconut oil, CoQ10, a particular antidepressant whose name I have forgotten. They may help to hold things back for a while, or not.

    Look for indications of 'events like a sort of mini stroke' when he seems out of it, or a change in character or mental ability. I found this is a sign of progression of the disease, whatever it is! And watch out for infection - particularly in chest or urine. Confusion can indicate infection.

    Hope this all helps you cope!!

    Hugs

    Jen xxx

  • I know the doctors don't tell us much .they always say see you in a year. Nothing more can be done they don't tell you how to work it out. Love you Jenny

  • Your husband a lot like my husband. His left side is the one affective. His leg and his arm it is starting to affect his right side he has not walked for 2 yrs .been dx for 3yr.he was first dx with Parkinson but he did not respond to the medication so they said it is CBS. His head leans forward all the time he does not look at you when you talk with him.he is now forgetting things trouble finding the right words he is now incontinent and eat less lost about 40 lbs.I have to do everything for him.I think pep and CBS are close to the same. God Bless you Jenny

  • Hi ciilat

    My mom has cbd,she's in the middle of the progress though ,her neurologist can't determin about the duration of the progress,she can't walk since a year ago ,its hard to tolerate her because she's screaming sometimes,leads the carer leave our home in less than a month,i'm taking care of her ,i'm passing hard times of my life,feeling pitty for my mom .she's 65 yrs old,she could have enjoyed her life now after years of working as a midwife but niw she's quiete dependent, i just hope that she doesn't understand much about her illness.

  • Hi Kathrin sorry to hear you are having such a bad time with your mum .I fully understand you not wanting your mum to know much about the illness ,I really don't think Brian would cope with knowi g what the future could bring.

    I also understand about the screaming. Brian gets very frustrated and shouts and swears when things go wrong or I take too long doing something. I consider myself to be a very patient person but sometimes it gets too much to bear, especially when I've spent all day trying to please him.

    I hope you are getting sitting service to give you a bit of time for yourself and a good family network ,it's so hard coping on your own.

    I think it's the not knowing what the future holds is the most frightening bit ,everybody seem to progress differently .

    Hope you sleep well and lets see what tomorrow brings

    Love Cilla x

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