The above was written on this site by our daughter who is 10 years. Her father - John has PSP for the last 8+ years - so most of Chloe's life. She has chosen to post this message knowing that I communicate to people who are similar situations to that of her father. Basically she is after ideas on what you, if you were in a similar situation would like. Our circumstances, though similar maybe a 'little' different from yours - in that medication is currently helping John immensely with mobility, but unfortunately also gives a few unwanted side effects so he does not live with us.
(N.B. Don't worry - Chloe is under the care of professional counselling support services & l'm a pretty proactive watchful mother!)
Written by
SharonAB
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N.B. John's neurologist has advised me in writing that it is medication that is keeping John mobile. I am not so sure, as it is seems to be in conflict from anyone or anything I have read. So I presume the only true way to tell is if John was not taking it. Likewise the personality changes - There is no way of really knowing - without the process of eliminating or reducing the medication.
I would also say that my Dad's Parkinson's meds are keeping him moving too, although the effects are wearing off now. He has been on them since early 2010 and as he has only quite recently been re-diagnosed, the neurologist isn't changing them until she sees the results of an MRI, which hasn't happened yet. I would say the effects started wearing off in April this year and the downturn from then has been fairly dramatic. I do think I have read in several places that while a large portion of PSP sufferers have no response to medications for mobility, there are some who will show an improvement, although it is likely to be only temporary. I think there is more chance that medications will help if they have PSP - Parkinsonism as opposed to PSP Richardsons syndrome. That's my humble understanding of it anyway! But like you, the decision to stop the medication, even for a day, to prove the point is too much of a risk to take. I did also see in a seminar in Australia I watched online, that their studies have shown that most people feel worse if the medications are stopped completely, even though they don't appear to be doing a lot of good, so they have found it was better to only reduce them to limit side effects.
Sharon, I experienced a similar thing with my wife Sharyn. It did not appear the carbadopa/levadopa (Sinimet) was working so the neurologist said to ween her off it slowly then try Amantadine which might help. By the time we got her off C/L Sinimet she was not doing well do the neurologist and I decided to put her back on it instead of trying Amatadine. Maybe down the road we'll try again. She is on a very low dose of Sinimet (one pill twice a day).
I TAKE MODOPAR TWICE A DAY AND FEEL IT DOES HELP A LITTLE WITH THE WALKING AND THE PIAN IN MY NECK
Mum took Madopar and we thought it wasn't working until she took something else and it wiped the effect of the Madopar. It took her 2 weeks to nearly get back to where she was and when she had an infection stopping her form taking it at all she took a month to recover and get back to eating talking and some aided walking. She was on 10 a day which went up to 11 eventually and it definitely stalled things which for her was amazing as she had an extremely fast progression. She reached end stage 9 months from Diagnosis and she was middle stage at diagnosis.
Thankyou for your comments/advice on medication. What would also be appreciated if you can confim & reassure how Chloe can still cuddle, comfort and generally just be a daughter to her father. (Yes, I do but it seems to help if the words come from others). Chloe is also at times scared that she will make him upset (as when he is he doesn't move too well) is finding it increasingly difficult to carry conversations with him as his voice projection is quite low, words are slurred and he seems to show an indifference to what she is saying and doing. It's those socially changing aspects of PSP that are becoming hard.
dearsharon a b this is for chloe\\ i to have psp just like your dad now i think everyone can express themselves once they get the hang of it mate i know your dad speaks badly but he cannot help it i sound the same its just something we have to live with im afraid but he will not be deaf even if he has hearing aids if you could just say to him sit down in this chair dad and when he has sat down just take hes hand and hold it and take a deep breath and say i love you dad he will love you for this and it will have broken the ice that is separating you from him just explain to him that you cannot understand him very well so say to him how about we just sit quietly here together and even a few minutes im sure he would appreciate that my friend \\\\ i dont know if you will do this but im sure i would be pleased as hell if you were my daughter you have nothing to lose except one thing in your life you might regret later not telling him just 4 words mate thats all it takes \\\\\ i hope i have helped in some small way i do not know how old you are ps just remember your dad still has feelings mate as i do
but you are a pretty sensible young lady anyway peter jones queensland australia psp sufferer
sharon ab \\\my pleasure\\ if cloe can hug and shed tears then i think she will be ok
goodluck with that cloe take care you are a very sensible young lady
peterr jones queensland australia psp sufferer
Hi SharonAB
The area of medication for PSP in terms of correcting dopaminergic and cholinergic neurotransmitter "faults" (that cause balance, movement and postural problems) is well documented as you know. As noted above by others and yourself, it is unusual for John to find benefit after 8+ years, even if he may have a more skewed condition of PSP-Parkinson's. However, he may be the exception to the rule, but I'd like to know why! Not all PSP sufferers "follow the rules"
It is a common experience that stopping such medications can cause real adverse effects unless withdrawn slowly by lowering the dose gradually over a period of (possibly) months.
I'm sure Chloe is learning about this disease called PSP and how it affects her dad. I hope she realises he is still the same dad inside, even if he may seem grumpy sometimes.He now finds it hard to speak, but I'm sure he really wants to hear his daughter talk to him, even when on the outside he may not show much interest. I think Chloe will learn that his brain is very confused, and he won't be able to talk to her like he used to do. All of us who have to live with, and care for, our loved ones with PSP have to take advantage of those "good hours or days" when they show more interest. Sadly, as time goes on, these times will become less, but our loved ones will still be aware of what is being said to them, even if it's a one way conversation.
Chloe, keep talking to dad and give him lots of hugs (he really needs this, even if he does not show much interest on the outside - on the inside he'll know how much you love him).
Dear Strelley, I just read the middle and end paragraph to Chloe for which she was very happy to hear. Thank you. The 'hugs' are something that still comes naturally for Chloe to give and it was to reassuring for her to read this. However - last week Chloe asked me 'for permission' to still hug (I don't if it was an age thing or if she sees him as fragile or ...?
Last week Chloe and I spoke about the importance of reminding one another how much we care so over the weekend she placed a sign on the fridge which reads 'SAY TO DADDY I LOVE YOU' as a reminder for everytime he phones.
My Mum has PSP too and I hate it. Sometimes I am sad because it seems as if she is not the same Mum I remember from when I was younger (I am quite a lot older than you!). I know she is the same inside though, so I talk to her about what I am doing just like I used to and I tell her often that I love her. My Mum doesn't talk much now so I do most of the talking. I think she likes hearing about the things that I and my friends do. I expect your Dad likes hearing you talk too.
When it's really hard I find it helps me to write down what I am thinking and feeling. I think that may be one of the reasons your Mum comes to this website too, it gives her a chance to say how she feels to people who understand. Maybe you could ask Mum for a special notebook that you could use to write down how you are feeling?
Dear H, Thankyou for your posting. Chloe just read it and is happy, yet sad to read about other people in similar situations. (I presume she is on a quest to find out that she is not alone?)
Hi, as a daughter of a CBD sufferer my advice to Chloe follows much of what has aready been said.
1) always take the time to sit, hug or just hold a hand as you talk. I noticed that my father always responded well to human touch even when he couldn't talk anymore. I would chat to him about my day and stroke his hands. Occassionally he was able to squeeze my hand back if he agreed or found something funny.
2) If speach is becoming difficult get chloe to make up some flash cards or similar so that she & her Dad can communicate with when they are together. My son made up a set that only he & his grandfather used. They remain special to him & he has kept them although my father has been gone from us for nearly 3 years.
3) Another thing we alll did together was look at photos. Even if they were before our time - we would sit down & look through them. Occassionally my mother would chip in about the event they related to but other times we just enjoyed the togetherness of looking at them together. (Just a small note of warning - my dad became very emotional during the progression of the illness & sometimes photos would send him into floods of tears which was a little unnerving tobegin with).
4) I don't know if Chloes dad likes music - but mine did & surprisingly although he couldn't talk towards the end he could still sing. So we would listen to music together - I would hold he hand sometimes too as we listened.
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