I have just been diagnosis PSP. I am 74 years old.stumbled across this(or my wife did) We live on a few acres, and am very active. Not been able to find out much about PSP, except on google. The medical profession don't seem to know don't seem to know much. One thing I do know is i have a very supportive wife. We don't live in a major Australian City
sheers
Charlie
Hello Charlie,
I'm so sorry to hear that you've been diagnosed with PSP. My brother (who is 75) was diagnosed late June.
I'm in the UK but it seems that Medical and Health Professionals worldwide generally seem to now very little about PSP. We were advised by my brother's neurologist to seek information from the PSP Association (pspassociation.org.uk/) which led me to this forum.
Here you will find people with a wealth of experience (those living with PSP and those caring for people with PSP), information, advice, support and understanding.
If you have any particular questions there will be someone here who will be able to answer you and advise.
Erica
Hi, Charlie! This is a good place to be. There's lots of information and support here. PSP is so rare that very few medical professionals have come into contact with it, but, since there is not much in way of treatment, having a decent GP is more important than having a specialist. Staying active is the best thing to do. A speech therapist may help if swallowing becomes difficult - my guy had good exercises that prevented choking episodes for a long time. The progression is extremely variable, so keep doing the things you want to do and prioritize the best things - traveling or visiting or just enjoying the company of your wife.
There have been many folks here from Australia. There are folks from all over the world. I'm in a rural area of the Northeast US, and I found this community a life saver.
Best wishes, Sarah
Hi Charlie, sorry you have received this diagnosis but glad you have found this forum. Here you can ask questions, seek advice or information and there will be someone ready with a response. We are all at different stages, some just recently diagnosed and others who are more advanced. You can vent your feelings, no one will judge you as we have all been there, but you will receive lots of comforting words and lots of hugs. Do as much as you can now with your lovely wife and create lots of new memories. Best wishes Nanny857 x
Welcome to a group no one wants to belong to. Wealth of information here and plenty of loving support .
Dee in BC
First person I have seen from Canada. I have not got much information. I got passed note from neurologist look it up that’s it. I struggle as I also deal with a serious issue my liver is holding. Beesick a lot. Vein surgery, bronchitis over 2 months real bad I just keep going. Hubby has difficulty talking now. Choking episodes. Could you relay or give me websites or what you have been doing? I would appreciate it.
Some how you have type in a year old post,if you go to healthunlocked.com main page and type in your post what you want to know,just make sure you are in the psp group and you will get a lot of response.
Dee
Welcome, Charlie from Australia,
Reading others views is always helpful but possibly the best bit of being here is knowing you are not alone. It can feel very isolating having a rare disease.
PSP has various paths but is always progressive, so keep doing whatever you can whilst you can and don't waste precious time mourning. There will be time for that later. Enjoy what you can but prepare for the future.
love, Jean from London x
Hello, Charlie. I'm sorry you are here, but happy to tell you this is the best place to get help and support.
You will find this site the best for information and support, it will advise on the best way forward and all of the things you will need to you through this journey. I do hope you find it gives you strength to get all of the stuff you need to sort out and the medics you need to get onboard who can arrange the support available to you. Wishing you both love and support.
Love Kate xxx
Charlie, you are in the right place. The folks on here know more about PSP than almost any doctors I have met (a few exceptions from people in the field). And as far as practical advice, empathy and camaraderie, you will not more of that anywhere. Use the "Search PSP Association" tool on the upper right hand side for any PSP related topic and you will generally find a treasure trove of valuable info in the posts on here.
Wishing you slow progression and lots of love and support.
Regards,
Rich
I can only echo what everyone else has already said. I didn't put my first post up until I was feeling really fed up with PSP and felt helpless for not being able to do more for my mum. The support that followed from this forum was amazing. It's the only place I have found where people truly understand.
My mum has an occupational therapist, social worker, physio therapist, continence nurse, speech therapist, doctor to name a few and I am the one that has to inform them that when she is choking, it is her condition and she doesn't need a glass of water, that her incontinence can't be controlled through exercise, it's the condition, that she can not slow down when she is walking as her brain doesn't warn her.
Having said that they have all been really helpful and so kind to my dear mum. Some of them are going out of their way to find out about the condition and that make her feel valued.
My advice to you is to live each day as best you can and as hard as it is try not to worry as you can not change a thing. Talk to your wife and share your fears, that way she can try to understand. My mum constantly tells me 'I'm alright' but I know different and I end up just imagining how she feels. This isn't helpful at all as I have a wild imagination.
I'm really sorry that you have been given this diagnosis but you really have come to the right place.
My mum has CBD oil (legal in UK) which is a cannabis extract but everything that causes psychosis and the high feeling (THC) has been removed. This really helps mum with her speech balance and sleep. Expensive but she and dad have just sold up and moved in with me so money isn't a problem at the moment, so very fortunate. Not sure what other medications are out there as to date she hasn't been given anything by the professionals. Perhaps others could give you some information here around what works and what doesn't.
Charlie I wish you and your wife the best in every thing you do and please please keep in touch with us all and if you have any questions I would be happy to answer them for you base on my experience, as would many others on here. As mentioned above this progresses so differently between each person but some one one here somewhere will have the answers for you.
Best wishes Sarah xx
Welcome Charlie. I'm glad that you found this site... wish it were under better circumstances. I'll be turning 61 in another week, but was diagnosed with PSP at the age of 57. I'm on the other side of the world in small town Ontario, Canada. You'll find plenty of support and advice from others on this forum, sometimes it's helpful to have thick shoulders. You may not always like what you hear or read... but it keeps it real. Buckle up, you're in for a ride with plenty of curves, steep hills and even the odd straight away.
Thanks to everyone for the support and positive welcoming comments. Charlie and I are overwhelmed with your enthusiastic responses. We have been looking for some kind of support network since the Feb diagnosis... We don't get angry with 'PSP' we just say 'Well what do we do now?' That is not easy really because nobody knows. Although out specialist said ' Do as much as you can as soon as you can.' ... As you know, most people look at you blankly when PSP is mentioned. It doesn't even make sense to them when you say what PSP stands for. Charlie just says 'Well , you might want to google it.' ... Sometimes reading others experiences can cause an emotional response and Charlie cannot watch personal videos anymore but I just want to find out everything that I can so that I can be a bit prepared for the challenges to come. It is good to know we are not alone. ... Thank you all ... Val (and Charlie)
Im scared of the red marks on body :(
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