LATEST NEROLOGY APPOINTMENT RESULTS

[jimandsharynp]

Hi all, We had our four month visit to our neurologist at Shands Hospital Neurological Clinic this past week. We go there for an evaluation of Sharyn's PSP condition. No swallow test this time but our next visit in August they will do one.

We did participate in a study while there allthough it was not planned in advance. They placed Sharyn's hands/arms in a device that also separated her fingers. They they played, on the computer, a series of click sounds. At first they started slow then gradually increased in speed. Sharyn was to tap her index finger in time to the sounds. If you know anything about PSP you know that coordination of this tapping was not too consistant. They did this about four times, the test. They are studying movment and response in PD and PSP patients.

We return to Shands in July for our anual participation in another study which involves a very, very, lengthy MRI and some coordination movements during the MRI. We are glad to help in any study if it will help someone down the road with PSP.

Bottom line on Sharyn is that she has not progressed very much in PSP according to the top neurologist. Neck a bit more stiff and eye movements a bit advanced but really no significant changes since four months ago. Thank God! Slow advancement is a real blessing.

Jimbo

[jillannf6]

hi jim and sharyn

good news tha t thePSP has not progrssed much since the alst visit

you are gettign goood treatment a t your centre!!

so jus tenjoy!!

lol JILL

[jimandsharynp]

Jill, Thanks for the good wishes. Same back to you!!

Jimbo

[bubbie in reply to jimandsharynp]

hi jim, we havent written in awhile. glad to hear that sharyn is holding on .my husband is not so good. the drugs dont work and i hate watching him decline so much.i am so depressed all the time and i can see he is too. but we are doing what we can. we still go out with friends and we are going up north for mothers day and our grandaughters birthday. so we are excited about that. i take along my aid and she is great .as long as alan can travel we must see everyone. im so happy for u that sharyn is good. may it only continue. god bless us all . bubbie

[jimandsharynp in reply to bubbie]

Bubbie, I wish we all could have good reports from our neurologists. I know that our good report may be temporary so we are thanking God for it. As I read the sad reports on this blog I realize that if the rest of you can cope, I should be able to get through the worst also. You give me strength for each day. Hope your trip is the best ever. Glad you are able to still travel at this time.

Jimbo

[bubbie in reply to jimandsharynp]

good morning,i wish i have your attitude. they say god gives u what u can handle. i dont know if thats true. im trying my best to do what i can.it is just so so sad. i wish there was more to do for my alan. we have the neurologist may 22 so we will hear what he has to say. have a great day .thanks for listening. bubbie

[peterjones]

hi jim glad sharyn passed with flying colours by that i mean she has not progressed at all thats great news for the pair of you especially sharyn good luck to her and hope it does not go any further for many years to come then you can start living again instead of putting your life on hold

i also went to the specialist and i think surprised to see me standing in hes waiting room anyway he gave me the once over or twice over with hes pen or pencil not sure what it was anyway he said to keep on doing what i am doing that i was a strong man and said see you in 6 months so that was good news for me as well so i said my farewells to him and went off as happy as larry

well sharryn i wish all the psp people could go to their specialist and get the same results \\would'nt it be wonderful anyway i will say goodnight to you both see yer peter jones queensland australia psp suffererf

[Hidden in reply to peterjones]

I'm new to this forum but I'm intrigued by your personal PSP story. I haven't checked all your blogs, but how long have you had PSP and was it a definitive diagnosis. When I read your answers I often wonder if you have Richardson's PSP. The fact that you are still walking is unusual. Do you have vertical gaze palsy? Do you have any dysarthria or dysphagia? How's your handwriting and recall of words?

Sorry if this seems a bit questioning, but my wife has PSP and I try and study as many case histories as possible.

If you do have PSP you are doing remarkably well - all the best!

I live in Perth!

[jimandsharynp in reply to peterjones]

Peter, Thanks for the well wishes. We are thankful for the slowness of PSP at this time and are enjoying life to the extent we can.

Jimbo

[JoJo-K]

Hi Jimbo,

Good to hear all went well for your wife's check up Also well done to the lovely Peter Jones, sending you all warm thoughts from Wales

Jo x

[peterjones in reply to JoJo-K]

well jo jo if at first you dont succeed GIVE UP i lost the first little bit was sending to you but never mind my wife and i were in wales in 1981 god that seems so long ago \\ we'll keep a welcome in the hillside we'll 'keep a welcome in the dales and so on \\ can you talk welsh jo jo its a beautiful country you notice i said beautiful country NOT a beautiful part of the country if you are welsh that is or did you emigrate there from england or somewhere exciting anyway its lovely place to live and no im not welsh mate despite the name sorry \\well matey you have a lovely day take care look after yourself peter jones queensland australia psp sufferer

[JoJo-K in reply to peterjones]

Hey Peter, lovely to hear from you, how are you doing? I was born in Wales, we live on the North Wales Coast so a 5 minute walk to the sea. I speak a little welsh, my dad was was fluent but my mum (who has PSP) is English. Gosh 1981 does feel like a lifetime away, I was 10 then I have an aunty who lives in Perth, mum and dad visited her about 10 years ago, but the stories of bugs and snakes has put me off visiting oh and of course the long flight !! I love the Australian lifestyle though so will remain contented watching Bondi Beach lol, you take it easy my lovely, best wishes to you and Mrs J xx

[peterjones in reply to JoJo-K]

hi jo jo hows it going great i hope \\ thanks for your answer so you had heard stories about our bugs and snakes a i thought that was a well kept secret actually ive only ever seen a snake in our garden about twice and a really big carpet snake that stretched from one pavement right across the road to the other side it was massive two people in a car knocked on my door one night and asked me if i would move it so they could drive on down the road to which i replied not bloody likely \\ i went to the house next door and i asked the young lady if she would mind shifting it for them she said yes i will if you hold this large pillow case now before i go many further i must tell you that she worked at a wild life place called LONE PINE SANCTUARY anyway i was scared because i thought i got to hold this pillow case and that thing is huge it might bite me through the case but all went well i held the case shaking a bit and she picked it up and it twirled around her arm and body and i held the bag open for her and she scooped it off her arms and body no trouble at all then i was left holding the bag at arms length i might add she took it for a drive then released it in the bush much to my relief but they can only make you sick apparently if they bite you \\ the other two were brown snakes and they were poisonous that were in our garden i just let them go there own way which they do if you are around them this is over a period of 35 years i have a friend who keeps snakes in hes bedroom caged of course \\but i have only seen very few here i think its just the thought of them that makes you a bit scared of them and the bugs you get them at different times of the year like psp i suppose \\\ you just have to have a can of fly spray or insect repellent but i think they can read the label, on the can most of them but really its not that bad its a good place to live i can tell you that well mate i was'nt going to talk about that at all but i thought a little bedtime story might be ok for you sorry but i think the plane ride out here is the worst thing it seems never ending going over and coming home but there you are you cannot have everything in this life can you \\ i know we can try well im sorry i never answered your em never mind so see yer take care peter jones queensland australia psp sufferer and snake charmer

[JoJo-K in reply to peterjones]

Oh sweetie, you had me in fits of laughter reading this. My question is how bloody big was the pillow case?? Lol It's been a funny old day, I joined this sight because my mum has PSP, I've educated myself on the condition quite well and done lots of reading etc, just had draft from solicitor for mums advance directive, hurts my heart to read but I will make sure mums requests are followed to the letter. And then your message came through and put a smile back on my face. So thank you for that I hope you are behaving and not having too many tumbles. Big day tomorrow my eldest daughter is 17 and will be having her first driving lesson....

hopefully with her Dad, I'm not quite sure my nerves would stand it !!! Take Care my lovely, hugs to you and Mrs J

Ps before I got married I had proper welsh surname Williams

[marytea13]

Hi Strelley I'm not sure if u are addressing me or someone else? I first saw my neurologist in 2008 but was not clinically diagnosed with PSP until Dec 2011. I'm told by the neuro nurses that I have PSP p don't know if that is Richardson's. I guess I have some degree of vertical gaze difficulty but not palsy Also some degree of dysphagia, hand writing is 'terrible' & has been for some time mostly I can recall words if not immediately then later. All the best to your wife. I live in Perth too!

[Hidden in reply to marytea13]

First of all - many apologies - I was trying to write to peterjones - so I must have clicked the wrong box!

However, thank you for your reply. I like to gather information from actual sufferers so that I can be better informed about the many aspects of PSP.

I will try and click on peterjones again and hope I get it right this time.

Thanks and take care.

[dorothy-thompson]

dorothy-thompson

From reading these blogs the one thing that stands out clearly is the marked difference in the level of support from the medical profession in the various countries. Here in the UK where the NHS is free, within three months of my husband's diagnosis of PSP in October 2010, he was off all medication and his then neurologist told us that the NHS could do nothing more for him. We then moved into another health district and saw another neurologist last November, we were then sent a follow-up appointment in his clinic for this September.

dorothy

[JudyJ]

Jimbo:

Thanks for sharing the results of the visit. I am so glad for both of you that her disease is progressing slowly. Both of you are remarkable people.

Judy J

[LizzieF]

Hi Strelley

I've never heard of Richardson's PSP. PSP is also known as Steele-Richardson-Olszewski Syndrome, named after the three Canadian doctors who described it in 1963.. Is that what you mean?

[Hidden in reply to LizzieF]

Hello LizzieF

There are several sub-types of PSP. Most of us on this blog will have loved ones with the classical PSP that has been called PSP (R) where the R stands for Richardsons (as you note, he was one of the original dosctors who described it). About 50% of cases are PSP(R). Then there are PSP(P) -Parkinsons and PSP(PAGF)-Pure Akinesia with Freezing Gate and PSP(CBS) -Coricobasal Syndrome and PSP(PNFA) - Progressive Non-Fluent Aphasia.

It all becomes a bit complex, but you can see that some PSP sufferers may have combinations of symptoms, and that's why initially some are diagnosed as CBD when it may be PSP and vice versa.

Since the complex disease affects different parts of the brain with different severities, we can see how varied the symptoms are between individuals.

Hope this helps.

Kind Regards.

[LizzieF in reply to Hidden]

Hi Strelley

That's all news to me, I have never heard of these sub-types. My mum was diagnosed with PSP in 2009 after having symptoms since 2005. I have read up on PSP extensively and not come across this before. The Parkinson's Disease Nurse Specialist was impressed with my knowledge/insight and said I probably knew more about it than the nurses and doctors that were treating mum (apart from her neurologist of course!). So this news has made me look at it differently and will have to do more research.

LizzieF

[Hidden in reply to LizzieF]

Hi again LizzieF - I've tried to find a simple scientific paper describing these subtypes for you to read. I think the one below may help:

Google.... "What's New in Progressive Supranuclear Palsy? -ACNR"

or try this link:acnr.co.uk/.../ACNR%20JF12%...

Hope one of these links works for you. The paper has a simple chart with the subtypes.

(There are many more papers that compare PSP with other neurological conditions. Did you know CorticoBasalDegenertaion (CBD) is often misdiagnosed for PSP and vice vera - it has the same faulty protein (tau). So there's a lot to learn about PSP and there's a lot being discovered).

[peterjones]

hi strelley im sorry that i have been so long in replying but i came back from holiday and the amount of em i had were horrific i never took my puter with me i just wanted a quiet time and i got it \\ well mate i have never blogged yet all mine have been in the answers bit \\\just trying to make people a little bit happier and not get weighed down by sadness anyway you wanted to know a few things are you sure you want to hear all this !!!!!! ok heat we go i came back from holidays in cairns and i was walking in between two cars when suddenly i fell over backwards i do not know why i fell i had not been drinking or felt ill there was just no rhyme or reason for it shortly afterwards my voice started going on me so i got a private speech lady in who came to my home soon after i went to my own doctor who sent me to a specialist who after prodding and poking me around you have motor neurone disease go home and put your affairs in order excuse the pun but you know that motor nuerone is deadly \\we all had a cry and then carried on then he retired and sent me to another nuerologist this all happened in 2004 \2006 and she said i had a stroke there was blood staining inside my skull i did not know what to think and i was frightened which was worse the blood staining in my head or the motor neurone by the way this was after an mri scan \\ then she decided it was parkinsonism so i thought well that can't be to bad and i was given a tablet called madopar which made no difference at all before that i had been given a tablet called rilutek for 2 and a half years for the motor neurone then she decided that i had gone as far as i could go with her and gave her up and went to an other neuroloist this gentleman said you have not got parknsonsism nor motor neurone after my speech pathologist suggested a few tests be done on me \\\ i wont go into that but i saw my own doctor again who gave me another neurologist name he turned out to be the head of neurology at a hospital he ask me to walk up and down and a few other things and then said you have steele richardson syndrome i said what the hell is that he gave me a brief outline of what it was what to expect and said you can look it upon the internet if you want more info i have been back to him 4 times since at 6 monthly intervals\ he still says i have steele richardson or psp and i am a strong man i do not know if he wants me to drop off the perch to prove him right or not \\ just a joke\\ there is a lot more to this story i also changed my speech lady after 2oo5 and still go to this one today i also have dysphagia swallowing problems im have not had vertical gase palsy my legs or rather my feet frease up on me and my handwriting is virtualy non existant if someone asks me to write down a message im hopeless this started going bad in 2004\5

i can just do my signiture now because the other writing looks like two worms have had a night out i do opologise for the length if this em i hope i have covered all that you ask oh by the way i am 77 years old now i think i was 76 when i started this em

well mr strelley good luck take care \\\\\\ ps eat your heart out judy i have almost caught up with your bloggs peter jones queensland australia psp sufferer just one thing more mr strelley i have had to put different letters in because my letters are broken in places on my puter

[Hidden in reply to peterjones]

Thank you so much "peterjones" for all this information. From what you say, I'm estimating you've had symptoms for about 10 or 11 years now. You are doing very well compared to the majority of PSP (R) sufferers.

You were really messed about by the medical profession in the early part of this disease. I cannot understand how they could suggest motor neurone and a stroke - these two conditions can be diagnosed fairly readily (although motor neurone may take a few months to confirm, it has symptoms in the legs and arms and mouth). Then you had to put up with medications that were not helping (although the madopar for Parkinson's would have given a good clue that it was PSP and not Parkinson's itself)

Anyway, I see you have many of the characteristic symptoms of PSP except for the vertical gaze palsy (the inability to look down or up). Strangely, this is a key sign for PSP (and that's why it's called Progressive Supranuclear Palsy, as you know). Has anyone had a good look at your eye movements recently (or have they checked the slowing down of your eye saccades - have you heard of these things before?). If not, ask about them with your next visit to your neurologist. As far as my research goes, vertical gaze palsy should show up within about 3 years of the intial symptoms (like falling), and rarely by 5 years.

It does not appear you have any of the sub-types of PSP (see what I've written to LizzieF above).

I think you are both a mystery and a marvel, and you are to be congratulated on your typing - thanks for all the answers to the blogs I've seen - you're a real encouragement to this group!

All the best