Hi every one just diagnosed on Easter Saturday got letter don't know what to do am I surppose to have special meds or stay on ones I have

[Flakes12]

Got nurse coming soon but advice needed now thankyou y the way 48 years old

[laroux]

Hi Flakes12,

I think because the disease is different for everyone, the meds likely are too. Only thing I would suggest is to contact your neurologist and see what they would like you to take, if anything. Sorry to hear of your diagnosis, but this site is the best support. I hope you get your questions answered soon.

Take care,

joan

[peterjones]

hi flakes 12 well mate im sorry to hear that you have psp which there is no medication for so I would carry on with your own medication until you see a specaiilst and thern tell hi\m your concerns because your own meds might be blood pressure or diabeties or something which you should not leave off mate so I would keep on taking your own until such times as they tell you differently\\\

\ most of the medication that has been tried on here is our own trial and error stuff not scripted stuff unless the specialist or doctor has prescribed it for some reason or other desperate times need desperate measures mate thats why we have tried coconut oil turmeric & coq10 and other kinds of stuff to see of it gives you any relief from this psp \we are the human guineas pigs mate but stay on this site you will learn quite a bit about psp peter jones queensland Australia psp sufferer\\ your certainly very young to have psp take care

[flicka in reply to peterjones]

As ever 'amazing Peter Jones' Good advice Go gently x

[peterjones in reply to flicka]

WELL THANK YOU FLICKA YOUR PRETTY COOL YOURSELF PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER

[Healthygramma3 in reply to peterjones]

agreed

[peterjones in reply to Healthygramma3]

AND THANK YOU TO HEALTHY GRAMMA3 HAVE A GREAT DAY PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER

[flicka]

Hi Flakes Peter Jones always gives excellent advice. Shall be thinking of you. You will have to push for help, as sometimes the left hand does not know what the right hand is doing in other words the professionals do not always talk to each other get local support in, if possible. Shall be thinking of you.x

[shasha]

hello

you are very young to get psp -- as far as meds go, were you dxd with parkinsons prior to being dxd with psp? if so, then the neuro will prob tell you to stop taking all the stuff - but if you do and feel worse then you must get in touch with him/her immediately - all the very best AND BON CHANCE

[Hidden]

First get in contact with the PSP association and ask for an advisor. They can take you from there.Secondly, try not to panic. Thirdly this forum is full of people that understand your situation so stay in touch! Please be aware that PSP is rare and a lot of medical people do not understand it or how it progresses. Parkinson's nurses can be of help as they are attached to neurology. Best wishes, Dianne xx

[denmob]

My husband was just two years older than you are when diagnose 10 years ago. Although it has been difficult we have not allowed the disease to stop us doing things we enjoyed like travelling and trips out. Once you get your meds sorted take the opportunity to do all the things you planned to do. PSP affects people differently and in my husbands case we just had to take precautions against falls initially. Best wishes.

[jimandsharynp in reply to denmob]

Denmob, Well said. I tell those newly diagnosed to go and do everything you wanted to do in life because a time will come when you can't go and do things. It's easy to underestimate what will be coming your way via the disease PSP. My second mantra: Don't worry about what "stage" you are in. Face it, you could get aspiration pneumonia in "stage 1" and die and never reach other "stages". Live one day at a time not fretting about what is coming. There is enough time for that when it comes, if it even comes. Above all, THIS DISEASE IS VERY INDIVIDUAL. Some never experience symptoms others have. Some find something that works for them and not others. Keep on this site, it is your bread and butter for PSP things. Jimbo

[Flakes12]

Thank you all for you're kind words I did not know that I was young to have psp why is 48 young please let me know I hope yo are all as well as can be xxxx

[jimandsharynp]

Flakes12, Wow at 48 I've not heard of a case of PSP in a younger person. Here's what happened with my wife. First diagnosed as Parkinson's and put on Carbadopa/Levadopa medication. Second opinion said either Parkinson's or PSP but too early to say which. The above medication did not work. Eye movements, a common marker for PSP, showed vertical gaze palsy and thus permanent diagnosis of PSP. It is good you found this site so early in the disease. There is a wealth of information here so you don't have to "reinvent" the wheel, as they say. Ask questions often and stay on the forum from time to time to keep current with the latest news. I have a method that will allow you to be aware of anything posted on the entire internet about PSP. Information on new drug trials, medical papers, etc. If you email me at [e-mail] I'll send it to you. You will find it an easy way to keep up, at least on what's on the internet about PSP. Stay strong. Jimbo

[Flakes12]

Hi jumbo thanks for the reply can I ask you why every one is saying I am young font understand about it all yet I read that you could die after seven years of the psp starting is that true got nurse but she is vague sorry for the questionsxx

Sorry jimbo got ur name wrong

[denmob in reply to Flakes12]

My husband was 50 when diagnosed, he is now 62! Yes they say 6-7 years but that I think might be because most people are older when diagnosed. Take care of yourself. People don't die of PSP but of other issues, so. I have been told. Take care you contact doctors immediately you feel "unwell". Falls and.chest infections are the common causes of complications. My husband had falls so we kept a close eye on him but they have only just become a major problem for him as walking is very difficult. Again everyone responds differently to the condition and it has taken many years for the condition to seriously impact on our daily lives. Live life to the fullest.

[Baddie]

Hi sorry to hear you have psp

So young please get all the advice and help you need

Lots in this web site

If you on Parkinson's meds keep taking them

As when you stop systems go worse

Keep active and Do everything you want to do

While you can void luck

And keep your chin up

My family has just raised 3000 pounds for psp

For my dad who passed away in December age 70

We have been raising awareness too putting it in papers

I have family doing the manchester run and manchester to blackpool bike ride

[Healthygramma3]

I would definitely suggest that you research grain free diet and dementia for the latest research findings and use your own judgment as to what will work for you. Many, many connections to dementias and gluten/grains.

My husband has been on a detox diet for about 4 months as well as immune supporting supplementation and a phytonutrient supplementation program called Juice Plus.

[Flakes12]

Why is everyone saying so young g I started 3 years ago with problem told I had parkinson but now psp does it only happen to older people no disrespect

[easterncedar in reply to Flakes12]

Statistically, PSP most commonly strikes people, slightly more frequently men than women, I believe, in their 60s, but some get it much later, as in their 80s, some earlier. I think the youngest I personally know of was mid-30s. So 48 is on the young side, but not, unfortunately, unheard of. Our neurologist thinks the survival statistics are very unreliable, since the diagnosis is often made quite late in the progression and because the progression of the disease varies so greatly among individuals, so don't worry too much about that. Stay as active as you can. Hang in there and keep in touch. Easterncedar

[Hidden]

Dear Flakes12,

If you are on medication for parkinson's , be very careful as there is evidence that long term use of levadopa causes irreversible dystonia. Look up dystonia on google if you do not know what this is. My father was affected in this way and it made his life even more hell than it needed to be. PLEASE be careful with parkinson's medication. It may be that your diagnosis is not actually correct as true proof of PSP cannot be confirmed unless a brain biopsy is performed after death. It is the same for many of these neurological conditions. As many of our members say, you are very young to have such a certain diagnosis. Peter Jones will give you wonderful advice and support. He is wonderful and very understanding. A bit of a clever old stick!! We are lucky to have him on site, Jimbo too knows a great deal and Strelley. Australia seems to be more informed than us here in the U.K. Good luck!

[CheekyChops1973]

Hi Flakes ,

I was diagnosed with parkinsons plus syndrome in July 2013 . Then letter from my consultant to my Gp said it could turn out to be cbd so I know how you must be feeling . When I was diagnosed I was only taking an antidepressant but was put on sinemet plus 125mg three times a day which had little benefit . I am now on stalevo 100 three times a day with a half sinemet 125mg before bed . I have to take a diazepam in the mornings to prevent painful muscle contractions and I also have one 10mg baclofen and one 0.5 clonazepam at nightime. Don't know what your symptoms are at the moment but I had clonus in the ankle , tremor in right hand with cogwheel rigidity , bradykinesia and brisk reflexes on clinical examination . Also had a positive datscan . Would be interested to know more about your story leading up to your diagnoses . I was thirty-nine when diagnosed and didn't know where to turn . Was ringing helplines left right and centre and consultant said he would put me in touch with a parkinsons nurse which never happened . I see a neurology nurse practitioner monthly now but it was only through my mum stating my case to her lung cancer support nurse that I got put in touch with her . Gp had said it was too early in the diagnoses to need a nurse !!!!!! Every best wish to you !!!

[Hidden]

Hi Flakes,

So sorry to hear your diagnosis.

Have you registered with the Association yet? They have loads of great information to help you understand the course this disease may follow and also have info for your GP too. Not sure if you know about the helpline we have in UK? Always handy when you, family or friends just fancy a chat to someone who understands. They can hook you up with your regional,Specialist Care Advisor who can make sure you are getting the right levels of support.

I understand you will be searching for information at the moment, but as has been said before remember the course of PSP varies and is very individual. For now don't let PSP rule, try and get out and enjoy yourself.

Good luck !

[Heady]

Hi Flakes,

Welcome to this site, my thoughts are with you at this very frightening time. As you have been told, it's a rare disease and PLEASE, please be aware that not many people have heard of it, much less dealt with, I am talking about the medical profession! So the first thing you must do, is contact the PSA association. They will send you booklets about it and booklets that you can take, when you go to your GP, dentist etc, etc. They really are worth their weight in gold!

Please don't think your life is over, it's just changed. You really do have to live each day at a time. DONT put off something you can do today, till tomorrow! Most of all, you and your loved ones will have to learn to fight! Not just your body, but the medical profession, social services (not yet!) everyone. Try to learn very quickly how to accept help, ( not easy).

Most of all, STAY on this site. It's the best help you will find anywhere! Everybody here is either a sufferer or someone (like me) who care for their loved one. We all know exactly what you or your loved one is going through, "been there got that Tee-shirt". You can learn, moan, kick, scream, share everything you are going through. We will all understand, nobody will judge you, all we will do is try and get you through the bad times and share the good times. Read the old blogs, which I am sure you already have done! Ask as many questions that you can think of. We will answer, please remember, lots of people out there, don't exactly come on the site, they just read, so something you ask and get replies, will help them! The answers to your questions will help us all. Sometimes, answering questions, will help you. Quite often, I have answered questions to someone in need and although I may be in a really bad place myself, I have got some peace, by taking my own advice!!!

The one thing I have learnt recently, you MUST keep moving. Get to a Neuro Physio NOW!!! Try and get on to a special exercise class for Parkinson's. My husband as just finished a session of classes run by our NP and physical, he is so much better. Much more alive and less stiff! Starts a Parkinson's class this week. Practice getting up from the floor with your partner. This, which I'm sure you have already found is a must!!! It helps build up confidence for when it's needed!

Love to you and your family, look forward to "talking" with you!

Heady

[easterncedar in reply to Heady]

Well said, Heady!

[Heady in reply to easterncedar]

Thanks Easterncedar, how are you doing?

Heady

[easterncedar in reply to Heady]

Pretty good. We're upright! Thanks for asking!

[SharonAB]

Dear Flakes12,

Like me - I imagine some people have queried your age - (and admiring the medical support & services you are getting in place) because they and/or their friends, partners, work mates, or children had for some time been wondering what was not quite right before their (final) diagnosis was made. Though it seems my husbands diagnosis was made quickly compared to some others, when I reflect there were quite a few steps along the way. For example my husbands supervisors made phone calls to me with concern & then employed me to work alongside him whilst our baby was placed into childcare. Still later on our toddler was able to pinpoint differences attributable to a neurological condition (lack of blinking and change to facial expressions) well before diagnosis. And now many years later I am still left wondering if the diagnosis is right.

So I think the reason for writing this to you, is to let you know - yes, like me (though I haven't been diagnosed with PSP) we BOTH may or may not be able to tell out stories tomorrow, but in twenty years time the same could also apply. For that is what is so confusing and makes PSP difficult to understand. It affects each persons 'very being' so differently, and to add to confusion you and others can't determine its timeline and how your mind and body is adapting til it happens.

So take NOTE - enjoy what is around and remember to not put off what you have planned to do or what you would like to do,

Regards,

Alana - Western Australia

N.B Keyboards better be obsolete in twenty years time - they are a nightmare for a one finger typist!.

[Flakes12]

THANKYOU for all ur replys I still find it all yo much especially when nappy pads arrived by the hundreds lol does anybody have toilet problems so to ask but have so many symptoms it all very hard

[Heady in reply to Flakes12]

Yes, S has toilet problems! Sometimes worse than other times! He has to go for a "pee" extremely regularly. Does not need a "nappy pads" ( please everyone can't we think of better words to describe them! ) yet, but has to use them, if going somewhere the toilet is not in easy access! Flying etc.! S takes pills for over active bladder, so ask your GP if you can see a specialist nurse regarding bladder problems. There are lots of things that can help. I carry a little bottle, the size of an old camera film case, that has a bag, for S to use at times of need. This may stop the need for pads all the time. He uses a bottle at night, as it's difficult getting to the loo at that time.

Honestly Flakes, you are not abnormal, you just have PSP and all that, that brings. I agree it's "....." But we all have to get on with it. Some days are better than others. We are having a good one, you will as well, once you get use to life as it it now!

Keep smiling

Love Heady

[Flakes12 in reply to Heady]

Thanks heady you talk a lot of sence thanksxx

[easterncedar in reply to Heady]

I like the idea of the emergency bag, Heady. Good advice. He has been so mortified by the incontinence, but I say that the "panties" (which is what we call them between ourselves) are available in all the stores because LOTS of men (and women) have the same trouble, even without psp. For many it's just another reward for getting old - and I still say it beats the alternative. All the best, Easterncedar

[Heady in reply to easterncedar]

Hi Easterncedar,

Love the thought of rewards for getting older. I will use that! I normally say, old age isn't for cissies. My fathers best one was, "get to my age then criticise"

The emergency bottle is called a Uribag. Just knowing it's in my bag helps S! About £30 in UK, but we got it on prescription! But well worth the money, if you do have to buy it.

Lots of love

Heady

[easterncedar in reply to Flakes12]

Yes, Flakes, alas, toilet problems are very common. Having hundreds of pads delivered would save some of those awkward trips to the store, I suppose, as long as you have room to keep them! I'm sorry you are having to deal with all of this. Stay in touch. We all care. Easterncedar