JUDY J, HOW ARE YOU, NOT ANY COMMUNICATION LATELY? XX

[tisha1953]

HOPE ALL IS WELL LOL TISHA XX

[jillannf6]

hi judy

i agree a re you takign stock still??

LOl JIll

[peterjones]

judy i was just going to w rite the same thing are you all blogged out judy how have you been !!!!! ok we all hope i say all because i think everyone has missed your blogs mate

i hope you are well and psp is not getting you down best wishes peter jones queensland australia psp sufferer ive got my eye on you mate

[jillannf6 in reply to peterjones]

Hi Peter

How r you also ??

I am using my iPhone To send this as it makes suggestions for mis types!l

[peterjones in reply to jillannf6]

hi jill it seems as though the phone will be good for you mate as it makes a suggestion for missed types sometimes things get a bit to technical for me i do not like change which i know we have to have i think as you get older you get a bit frightened to use things we tend to get set in our ways \\ take care peter jones queensland australia psp sufferer

[jimandsharynp in reply to peterjones]

Peter, Any idea how many cases of PSP in Aussy Land?

Jimbo

[peterjones in reply to jimandsharynp]

well jim mate there is about 1500 cases of psp in australia the population is around 21 million eight hundred and thirty thousand people so you can see that i am lucky to get it not everybody gets these odds we are a big country with a small population i understand that about twenty million in the united states have it

and six million in the uk anyway mate thats enough of that hows sharyn doing today !! ok i hope well mate see yer take care both of you peter jones queensland australia psp sufferer i think these figures are correct give or take a few thousand

[jimandsharynp in reply to peterjones]

Peter, Thanks for the response. The numbers are big but still only a drop in the population so we don't get much "press" (news reporting). Sharyn is doing well. No falls in March but one in this month of April. We go to the neurologist at the University of Florida for an assessment later this month. It will be interesting to get his thoughts on if and how Sharyn's PSP is progressing. We also get a swallow study there and a PT evaluation. Keep in touch and have a Fosters or two for me. Oh, does beer affect PSP patients differently?

Jimbo

[peterjones in reply to jimandsharynp]

hj jimbo well a FOSTERS is a bit to light to drink for me mate i have a beer called TOOHEYS OLD which is a dark beer more like a guiness or stout which seems to go down ok without any sputtering not that i drink a lot i am a social drinker if i have it in the house i will have drink if its not in the house i do not bother with it \\ i do not go to the pub or hotels\\\\ does it effect my psp i relly coud not

slay matey hic \\ no i do not think so jim if you over indulge then anything effects you i cannot use psp as an excuse but my voice sounds very much like it \\ see yer jimbo

[peterjones in reply to peterjones]

my best wishes to sharyn jim i forgot to add that on the end

sorry mate im forgeting my manners peter jones queensland australia psp sufferer

[jillannf6]

Lo l jill

And a smile

[peterjones]

hi jill im fine thanks still breathing and putting one leg in front of then other thank goodness but i have had this very bad cough that will not go away and wheesing on my chest my breathing is down from the last time i went to specialist i go every 6 months he reckons i am doing fine and just waves a pencil in front and sides of my head and says right see you in 6 months i always think i hope i dont drop off the perch before the 6 months is up not sure what he would do with hes pencil but a =nice man well joill nearly bed time for me 10==15 your probably just starting your day mate so goodnight to you take care chin up see yer peter jones queensland australia psp sufferer

[carehope in reply to peterjones]

Hi Peter! What you said in your note to Jill about your cough is worrisome. It sounds as if you may have a respiratory infection of some sort. Maybe be the squeaky wheel with your doc so that he'll do more with his pencil than just use it for a prop!

It really ticks me off how once we get to be over 60, a good number of doctors don't give us their attention. On the other hand, maybe it's just time to find a doctor who does ! Feel better soon !! Elise By the way, I always enjoy reading your messages. You bring a lot of good medicine to this site !! Thank you so much !!

Elise ( in NY, USA - sister with PSP )

[peterjones in reply to carehope]

hi elise from NY USA HOWS IT GOING MATE OK I HOPE AND YOUR SISTER YES MATE I WENT TO THE DOCTORS NOT THE ONE WITH THE PENCIL THOUGH \\ I WENT TO MY OWN DR. I DID HAVE A RESPIRATORY [ THAT WAS A MOUTHFUL ] PROBLEM I STILL HAVE IT BUT I HAVE HAD ANTIBIOTICS

FOR IT AND IT WILL GET BETTER SOON \\ I AM GLAD YOU ENJOY READING MY MESSAGES WITH NO FULL STOPS OR COMMAS OR PUNCTUATION MARKS IN IT MAKES IT MORE EXCITING YOU JUST TAKE ONE BIG BREATH AND GO FOR IT AND HOPE IT MAKES SENSE I NEVER SEEM TO GET TIME TO PUT THEM IN GOD KNOWS HOW I GOT ON AT SCHOOL BUT THAT WAS TO LONG AGO NOW TO REMEMBER I THINK YOUR RIGHT ABOUT DRS MATE ONCE YOU GET OVER ^&*^%%$$#& THEY DONT REALLY SEEM TO WANT TO KNOW YOU PERHAPS WE ARE TO MUCH TROUBLE ITS A SHAME ISNT IT BUT WE'LL SOLDIER ON NO MATTER WHO WE HAVE AND KEEP GOING FORWARD EVEN IF WE DO FALL OVER GOING THERE BUT GET UP AGAIN THATS THE MAIN THING \\

PAUSE\\\\\\ NOW ANOTHER BIG BREATH AND WERE OFF \\\\ I FELT LIKE A RED INDIAN WHEN YOU SAID I BRING A LOT OF GOOD MEDICINE TO THIS SITE BY THE WAY HAS YOUR SISTER TRIED COCONUT OIL IT TASTES DISGUSTING BUT I FEEL I HAVE HAD SOME BENEFIT FROM IT AND I AM HOPING THAT SEVERAL PEOPLE ON THIS SITE WHO HAVE TRIED IT WILL GET SOME BENIIFIT FROM IT ANYTHING IS WORTH A TRY I GUESS \\ WELL ELISE I WILL SAY GOODNIGHT TO YOU THE CLOCK IS TICKING AND ITS GETTING CLOSE TO MY BEDTIME IT WAS NICE TO CHAT WITH SOMEONE FROM THE STATES GIVE MY REGARDS TO YOUR SISTER AND TELL HER NEVER TO GIVE UP THERE IS ALWAYS HOPE ----------------I HOPE HE DOES NOT HAVE THAT PENCIL WHEN I GO TO SEE HIM AT THE END OF THIS MONTH TAKE CARE DONT GO RUNNING AROUND THE BLOCK

PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER

[JudyJ]

Dang it, I got to the end of a response, lost the page, my reply is gone and...sigh. Dang it again.

This event of a few weeks ago in which I had a near faint while I was driving really devastated me, and put a different perspective on things (not so positive). I do not want to engage in any more to drive or not to drive discussions, at least for now.

The past few weeks, I've spent the 1st few hours of the day weeping. A kind of sadness from deep in your soul. My depression seems to be back in my driver's seat (I am on meds for it). On a brighter note, due to scheduling erros/miscommunications, I've been out of therapy since the end of Feb; start again on a regular basis with Shelly, my therapist this week; thankkfully.

My 4-1 appoint with my Internest, with whom I've had a medically relationship on a somewhat frequent basis since 2006, left me feeling a little down, but mostly disappointed. I acknowledged for how complicated things had become with me, I apologized for not getting into see her sooner, if nothing but to touch base. Last I saw her was 6-12 before my 8-12 PSP diagnosis.

I told her I was insistent she received a copy of any report from my Neuro and/or hopital visit. She acknowledged she got them all as she was doing a fast read on her lap top while I was in her office. I got a gut-hunch early on she had no idea what PSP was. I asked her directly "Do you know what PSP is?". She shook her head no as she said the word no. I have had a lot of confidence in her over the years and she's helped me a lot. I know most medical professionals don't know what is it, but frankly, it surprised me when she said she didn't know what it was.

Why? At her own admission, she's recieved dozens of report on my for other docs/hospitals about my PSP and my symptoms. Call me idealistic, but I can't help but wonder, insist perhaps, that with all this info coming to her about me and a terminal disease, shouldn't had picked up the ball at some point before my arrival on4-1-3 and decide she might want to get get educated on it? Am I yet too idealistic, dial down my expectations, or even more, don't have any expectations? Via her med training to be an Internist, she is to provide a higher level of care for patients with more complex problems. I was too tired to be mad; but not tired enough to feel bewildered. Once again, I found myself 'teaching' the Doc about what was wrong with me. There's a lot wrong with that in addition to be a confidence-shaker, tedious, feeling like you're tether to a port has broken and I'm starting to said away into the distance. Dramatic perhaps; but I just wasn't prepared for her 'doe-in-the-headlights-look' at me. She's a gread Doc & compassionate human being. Here I go with being too idealist again, but I know her, I know she wasn't happy with how things happened on her end; perhaps the appointment with me will get her thinking she needs to READ this reports about a chronically ill patient of hers, and well before appointment time. It shook my faith in her,

I then went on to telling her (excitedly) about my research about Nuerally Mediation Hypotension, a possible Parkinson's link, but most importantly, something as simple as a pacemaker can help manage the symptoms of NMH, is nothing else; what a 51 year burden that alone would take off my shoulders. From her side on the conversation; she hadn't a clue. I told respectfully that perhaps it would be better discussing it with my Neuro, nor did she eve know what NMH is.

She did have the report on my swallow test performed last week. It was normal. She suspects if there's something causing me to aspirate, it's located lower in my esphogus which is actually what it feels like. She ordered an Upper GI. 2 night ago, had another eposide after taking big swallow of liquids, up it came as soon as it went down, leaving me with a spraying/coughing fit. Also these episode of aspiration have left me with a raspy voice and a 'middle of my chest cough'; my words; don't know how to explain it.

I'm going back to the gastro doc who did an upper GI 2-12; makes the most sense. He was the last one down there & will be able to tell rather quickly, my guess, if there are changes. The last time he saw me that prompted the GI was because I was have stomach pain I'd not experienced for several months. Sounded like he found a pot of gold. Saw 5 areas of erosions in my stomach due to long term use of NSAIDs (alleve, ibuprofen), due to chronic arthritis in all joints below my waist. And, my were and have become over the 2000's about prescribing pain relief because of all the 'celebrity deaths', and patient epidemic with painkillers. Always told them it was a big group punishment and more about protecting their behinds, because there is a small percentage of use who do not doc shop, feign the need, etc. And then we're left to suffer. It shouldn't be an option. But, apparently what was an option of my was to due quite abit of damage to my stomach after taking years of nsaids via my doctors instruction.

I do have something I want to post today or tomorrow about something my mother said to me that was devastating. It was mean, uncalled for, far from supportive, and I quickly realized she wasn't going to allow me the dignity I deserve going thru this journey which will probably lead to my death, via PSP. I was blindsided. Of her kids, I'm the one she's had trouble getting close to, but that's my fault, too, according too her. I really need insight/input. Stay tuned.

Thank you all my lovelies, for being concerned/'watching my back', but to show enough interest/caring to reach out to me...that, I'm not used to; love you all, many times back.

[tisha1953 in reply to JudyJ]

Glad your back Judy, we missed you, now for a good read! xx(0)

[JudyJ in reply to tisha1953]

Thanks Tisha.

[peterjones]

JUDY]] IS BACK WITH A VENGEANCE \\\\\\\\\\\\\\ITS GOOD TO SEE YOU BLOGGING AGAIN MATE\\\

NOW I'M GOING TO READ IT ================IT WONT KEEP ME AWAKE WILL IT MATE I WAS JUST OFF TO BED PETER JONES QUEENSLAND AUSTRALIA NIGHT OWL AND PSP SUFFERER SEE YER JUDY TAKE CARE I WAS GOING TO WRITE IVE GOT MY EYE ON YOU BUT THEY ARE NEARLY CLOSED READY FOR KIP SEE YER MATE

[JudyJ]

You left a smile on my face again, Mr. Jones...sleep well.

[peterjones in reply to JudyJ]

judy thats good mate if i left a smile on your face perhaps i have left a smile on a few more carers and psp patients we certainly could do with some laughter or smiles at least with what we live with every day laughter is the best medicine for sure take care everyone who is sick\\ struggling with what life has to offer remember be positive there is light at the end of the tunnel peter jones queensland australia psp sufferer

[jillannf6]

hi judy

good to see you bloggging again

lol Jill

:-_)

[peterjones]

hi jill while im on here i was very pleased to see your writing has got better mate have you given the old dislexier the big flick mate it looks great was this by your phone or computer mate whatever it was its good to see just thought i would let you know it peter jones queensland australia psp sufferer

[jillannf6]

thanks peter

i am takign more care but everything has speeded up with hte PSP for me (not slowed me down)

so it is a bit of a lottery

i think the last comment was the computer but i cannot really remember...,...

we must tell mroe jokes on this site - the PARKINSONS site is good 4 jokes

lol Jill

[peterjones in reply to jillannf6]

hi jill how are you today !!!!! ok i hope well you say everything has speeded up im the same mate when i go to balance classes i always hear the same thing slow it down slow it down does'nt matter what movement i do she always says to me slow it down i reckon i am the fastest in the group i cannot help it either i think i am the youngest the ages went from around 77 up to 90 but the 90 year old has just passed on he was a nice old boy and you should have seen him do those exercises boy oh boy he was a goer but that's a good innings don't you think jill yes must tell more jokes on this site to lighten it up a bit but im not going to start them off mate \\\ your writing is perfect mate in your reply to me you must have slowed it down to do this

i do understand the pressure you are under and i thank you for really trying well mate its time for me to give my typing finger an rest so i will say cheerio for now pip pip peter jones queensland australia psp sufferer PS by the way the classes were mixed stroke victims parkinson 's ms patients and some just to cosy to get off there backside which i do not blame them for at this age see yer\\\\\ pps sorry about the word cosy the letter i wanted is broken on my computer again

[jillannf6]

hi peter

i go to tai chi fo rmy balaance

it si fgreat and ogood htat u r hte youngestin the group!

JOKE

A yorkshire man went into the butchers and aske dfo ra steak and kiddlie pie

di d you mean "kidney" said hte butcher

i said kiddlie., diddle I?? said hte man from gods own county

I ALWAYS LAUGH AT THAT ONE!

LOL JiLL

[flicka]

LOVE AND COURAGE ARE EVERYTHNG AND YOU ALL HAVE THESE IN SPADES, THANK YOU FOR SHARING THIS WITH US. VICTORIA X