I am new to this forum


#1

big grinHi I'm Dollymaz....I am 60 years old  Hairdresser and  was diagnosed in Feb 2013 though it seems i have had this for approx 5 years. I noticed the usual symptoms, right hand stiffness and rigitity in the arm and neck, twitching thumb, frozen shoulder, loss of sense of smell,weakness in legs,shaky, woozy heads etc. i had tests for lots of things and unfortunately it was PD. I had an RTA 20 yrs ago and had 3 fractures to the pelvis consequently i have enduured back, neck and shoulder pain since but i have found this has got worse. Could it be the PD? i do exercises regularly given to me by the Physio and have done line, Ballroom and Latin for approx 7 years certainly not well, but i have enjoyed what i have been able to do. This has become more difficult as has walking any distance.I was put on Requip XL which i take at night when i took it in the morning i was away with the fairys for hours! as the rigiitity in my neck and tremors were becoming worse i was recently given co-beneldopa 12.5/50 capsules and told to reduce the RequipXL back from 14mgs to 10mgs a day. To be honest i am now more shaky and neck spasms, will this improve after time on these meds ? i am not due to see the Neuro until March. I really look forward to hearing from anyone who also feels confused about this disease as i do. Thanks so much.


#2

Hi dollymaz 

if i was you i try and talk to your pd nurse about your meds ! how long  have you been on your new meds


#3

Hi, Dollymaz, and welcome!

Like Gus, I think you should seek a consultation on medications.  It does not sound as if you are getting the benefits a newly diagnosed patient should be able to get from the right combination of meds.  I was diagnosed in February of 2002 and have had pd nearly 17 years, I estimate.  Finding the right balance of meds for me has nearly eliminated my symptoms.  I still live an active life, so don't give up hope.  You may do as well.

Best wishes!


#4

Thankyou so much for responding so quickly......i have been on requip xl since last feb and was on 14mgs, i felt i was needing more but the nurse was not happy to do that because of side effects. I felt i was doing well on them with no adverse side effects. she felt it was time to introduce the co-beneldopa and reduce the requip xl back to 10mgs. I only started the beneldopa  on the 18th Dec 2013 and now take 1 after breakfast and 1 after lunch plus the requip in the evening, i am supposed to now add 1 more beneldopa after my eve meal. Does it sound to you like maybe i am under medicated hence the tremors and neck spasms getting worse? or could it be a side effect of the beneldopa? sorry to ask but i am totally confused by it all. Did it take either of you long to get your meds right and to feel the benefits? You have made me feel better already knowing that you understand.....i appreciate that, thanks, and so good to hear that you are doing so well J of greys cottage, that is very reassuring.


#5

Hi again, Dollymaz --

I cannot offer an opinion on whether you are under-medicated, because I'm in the U.S. and taking meds. with different names, though some are probably identical to yours in content.  Also, my case includes stomach problems caused by pd, so Domperidone and Omiprazole are included in my daily regimen.  Others on this forum will answer you soon, I'm sure, with more valuable information. 

Meanwhile, I'm glad you have discovered one of the great things about this forum: it offers support in the knowledge that you are not alone.  Whatever weird symptoms or side effects you may encounter, someone here will have had them.


#6

big grinHi J....I appreciate you getting back to me and it helps so much feeling that someone understands. I wish i had joined before, i only know one lady with PD and she is a client of mine (hairdressing) she has her ups and downs and at the moment is going through a good spell as her meds are balanced well, which again is reassuring. Today i have been pretty shaky, heady and woozy so i decided to go for a little walk as the sun was shining! i met up with a pal who came back for a cuppa and a bite to eat and then put on some good line dance music and really got stuck in.....fantastic, it is amazing what a bit of Mustang sally and Mambo no 5 can do to help . Now im feeling on a high. Isn't it weird how different you can feel throughout the day? I also have Domperidone and Omiprozole which i take when needed, it does help with the nausea i find and stomach ache. The prescriptions are getting longer and longer!!!cool thanks again J.


#7

Hi Dolly,

Curiosity kills cats, so I looked you up before your pussy suffered. You asked if any of what you described made sense. I'm sure it does to a lot of people on here.

This is based on my experiences and I compare to yours in some aspects. By the way I have to behave on here, so my dictionary of naughty words has been binned and more polite comparisons drawn. There are no naughty words only  ** so you can make your own up. If it's good enough for the Daily Mail it's good enough for me.

Being diagnosed.......... I was tested for everything known about man, pigs and horses before I got a very street wise doc who had a very clever friend. So problems arose from medication. I struggled at first.

I read the list of side effects posted by the NHS. I crossed my fingers and hoped for the increase in libido and hyper sexuality. My wife trembled at bed times waiting for the onset......unfortunately I got the same as you......the problem of being unable to socialise like I used to.............

i.e crowded pubs did me 'ead in. I am working hard on this problem and making progress.

Head like a snow globe.........I used to wake at about 3.00 am and sit on the edge of the bed like Alice in Wonderland........excuse this next bit........I wondered where the f**k I was. Having been a space cadet most of my life, this compounded the issue. My PD nurse (she's a gem.....very Grrrrrr! rated and clever with it) sorted this out with a nightly dose of slow release co beneldopa. I now sleep fine. My wife has removed the chastity belt and breathed a sigh of relief.

Dancing......have you ever seen someone trying to dance in quick setting concrete.......I gave it up as a bad job. This was before diagnosis and I wondered what was going on, I used to be as fit as a butchers dog. Swimming also had to go.

Stiffness.....again I apologise for the next bit.......If my pr**k was a stiff as my joints I would be a very happy man. My arms ache in all moving joints. I take pain killers with my Madopar, which makes it tolerable, but still painful if I try to lift anything.

I thought that medication made things better. I am told it does in the brain department but has unfortunate  side effects.

I am 63 and pre medication was reasonably active bar for old wounds incurred via ripping myself to bits in heavy engineering.

The conclusion I have reached is to stick two fingers up at PD and reorganise my life. If it's beyond me I send my wife off with her mates. I concentrate on the things I can do.

Morph


#8

HI MORPH...THANKS FOR YOUR MESSAGE..cool..I DON'T KNOW WHERE I HAVE BEEN BUT I DIDN'T NOTICE ANY EXPLETIVES...EXPECT I WAS AWAY WITH THE FAIRIES ..I AM SOMETIMES, ANYWAY IT'S GOOD THAT YOU ARE BACK WITH US...WHATEVER THE REASON WAS.

THE HEAD IN A SNOW GLOBE IS A PERFECT  DESCRIPTION....I WILL REMEMBER THAT ONE FOR NEXT VISIT TO THE NURSE. I AM SORRY THAT YOU HAVE THE HEAVY LEGS AND PAINFUL ARMS AND CAN'T DANCE NOW...ESPECIALLY IF IT IS A HOBBY THAT YOU ENJOYED. I HAVE FOUND RECENTLY ,.....AND I TOLD THE PD NURSE LAST WEEK AND AGAIN YESTERDAY THAT THE TREMBLING AND PAINFUL TIGHT NECK SPASMS HAVE GOT WORSE ESPECIALLY WHEN THE MADOPAR IS WEARING OFF, SHE HAS SAID THAT GIVING ME MORE EVEN THOUGH I AM ON A TINY DOSE WILL REDUCE MY OPTIONS IN THE FUTURE!! WELL I KNOW HOW I FEEL AND I AM DEF UNDER MEDICATED SO SHE IS NOW GOING TO SPEAK TO THE NUERO AND GET BACK TO ME. (NEXT WEEK)!

DO YOU EVER TWIDDLE WITH YOUR MEDS YOURSELFred face:-) OR DO YOU WAIT TO GET ADVICE FROM THE NURSE? SHE TOLD ME THAT THERE IS LITTLE THAT CAN BE DONE FOR THE "TREMBLING"  AND ITS NOT JUST IN THE KNEES!!! IVE HAD PHYSIO FOR THE NECK AND SHOULDERS AND DO THE EXERCISES BUT LIKE YOU WAS NOT SO STIFF! BEFORE THE MEDS.

LAST NIGHT MR DOLLY WENT DANCING AS HE REALLY DOES FORGET HIS STEPS AND NEEDS THE PRACTISE!! I WOULD HAVE HAD A GO BUT HAD LINE DANCING THIS MORNING AND NOWADAYS HAVE A JOB DOING BOTH...SO LIKE YOU SAY....YOU DO WHAT YOU CAN. WHEN WE GO FOR A STROLL (NOT WALK AS SUCH) I HAVE A FEW SITS ON THE WAY AND MOH STEPS IT OUT WHILST I WAIT...AT FIRST IT MADE ME SAD TO NOT BE ABLE TO DO THINGS I USED TO...BUT LIKE YOU I ENJOY EVERYTHING THAT I CAN DO....THINGS COULD BE A LOT WORSE. i HAVE NEVER HAD THE SIDE EFFECTS OF HYPERSEXUALITY FROM THE MEDS...WHICH MR DOLLY IS GLAD ABOUT COS HE HAS A JOB KEEPING UP WITH ME ANYWAY! HA HA....KEEP SMILING MATEY...YOU ARE DOING GREATlol


#9

I follow the PD nurses advice to the letter. I was told the same as you.......it could limit future options. My PD nurse is brilliant.......not to mention pretty. My wife comes with me to make sure I behave. I try really hard not to twiddle by myself.

I haven't had a knee trembler for years, if I tried I'd probably tumble in bits. I also get dumped regularly. this is when I've gone far enough and I pull against my lead till I am allowed to sit down. My photos from previous walks keep the memories alive.

Not sure if this is any use to you.......but I now go to Pilates. I make jokes about this.......14 ladies and 1 man, in all seriousness it works for me. The lady who runs it gives a lady with MS and me a chair in case we struggle with some of the more exotic positions. If I keep going I should be able to practise the Kama Sutra again by next Christmas.

A snow globe is the posh version of describing such problems, I describe my head as similar to the bottom of a baby's pram......full of p**s and broken biscuits. Mostly I use it for keeping my baseball cap on.

My first wife was a dancing champion (seriously) she led me a merry dance for 13 years before I eventually had to get rid of her. My second wife is pure gold.........and very pretty.

Morph


#10

IN THAT CASE I WILL DO AS I AM TOLD AND NOT TWIDDLE! ALTHOUGH IT IS SO TEMPTING WHEN YOU FEEL THAT YOU ARE UNDER MEDICATED, I WILL BE PATIENT, THANKS.

YES I'VE HEARD THAT PILATES IS MARVELLOUS FOR POSTURE AND CO-ORDINATION AND WELL DONE FOR GETTING INTO IT....MUST BE HARD BEING SURROUNDED BY ALL THE LADIES! WE HAVE ABOUT 50 IN OUR LINE DANCE CLASS AND MR DOLLY IS 1 OF 6 FELLAS AND LAPS IT UP. SEQUENCE ISN'T SO BAD AS THE WOMEN CAN ALWAYS DANCE WITH EACH OTHER.... .NEVER CAN UNDERSTAND WHY IT DOESN'T HAPPEN THE OTHER WAY AROUND. winkONE OF OUR LADIES ALSO PRACTISES THE ALEXANDER TECHNIQUE HAVE YOU HEARD OR TRIED THAT? I FIND YEARS OF HAIRDRESSING HAS NOT HELPED MY POSTURE AND HAVE TO REALLY CONCENTRATE ON NOT STOOPING, SO PILATES WOULD PROBABLY HELP. 

IT IS ALWAYS HEARTWARMING TO HEAR WHEN COUPLES ARE HAPPY TOGETHER AND LIKE YOU I FOUND THAT IN MOH, MY 1ST HUSBAND HAD AN EYE FOR THE GIRLIES, SO WE ONLY LASTED 8 YRS. I GAVE UP TRYING TO COMPETE! MR DOLLY AND I HAVE ENJOYED 32 YRS THOUGH HE USUALLY DOUBLES IT WHEN HE TELLS ANYONE COS HE SAYS IT FEELS LIKE IT!!! eye roll

WE ARE SO LUCKY AREN'T WE TO HAVE FOUND GOOD PARTNERS 2ND TIME ROUND...WE REALLY DO HAVE A GREAT DEAL TO BE THANKFUL FOR......KEEP SMILING MORPHbig grin


#11

The smile on my face is permanent, My favourite saying to friends when my wife pokes fun at me is......you smile at her, my jaws are aching.

I asked the fount of all knowledge (the trouble and strife) about the Alexander Technique, I should be able to walk again come Monday.

I agree fully with your sentiments on happy marriages.

This is true (not one of my silly fantasies). I spent ten years between marriages looking for the right person.

My daughter got worried about the lack of progress, and the quality of some of my efforts.

She made ( arm up back) me join a dating agency for professional people. No joke......I was so busy I thought I was going to have to take a lad on. Even the lady who ran it had a few nights out with me.

I took ladies out for meals and to dances. I sometimes went out with three different ladies in a week. It was how the system worked.

Then I met my wife to be who was nothing to do with the dating agency. Her friend very kindly told her I was a womaniser. She thought I had so many girl friends.......like most rumours she got it all wrong and didn't know I was in a dating agency.

Fortunately the lady who ran it vouched for me. Within one week I told my wife I was going to marry her. She was sceptical. I gave her a year to make up her mind and then asked again. We have been married 21 years.

Am I happy?..........as a pig in s**t. Oh such a romantic comparison.

Morph

 

 

 

 

 

 

 

 

 

 


#12

HI MORPH....THAT IS A FANTASTIC STORY....ALL GOOD THINGS COME TO THOSE WHO WAIT, AND THAT IS CERTAINLY TRUE FOR YOU...SO PLEASED IT ALL WORKED OUT WELL FOR YOU. MY STORY WAS A BIT DIFFERENT AS FAR AS PATIENCE IS CONCERNED.....I WAS MARRIED 8 YRS 1ST TIME AND HE DID LIKE THE LADIES (AS MENTIONED BEFORE) I WANTED A CHILD VERY MUCH AND HE LET ME HAVE ALL THE TESTS GOING BEFORE LETTING ME KNOW THAT HE DIDN'T WANT KIDDIES. hE LEFT ME FOR MY BEST MATE!!! FRIENDS SINCE INFANT SCHOOL AND THEY GOT MARRIED AND HE HAD THE CHOP!!! I HAVE ALWAYS BEEN A HAIRDRESSER BUT I ALSO BECAME A HOME HELP IN THE LATE 70S AND THAT IS HOW I MET MR DOLLY....AS I WAS HIS MUMS HH....NO HEARTS AND FLOWERS OR BELLS RINGING BUT HE LIKED THE WAY I CARED FOR HIS MUM EVEN ON MY DAYS OFF...SHE HAD THE BIG C AND WAS ONLY 62 WHEN SHE PASSED. ALSO HE HAD 2 YOUNG CHILDREN THAT HE HAD CUSTODY OF AS HIS EX DIDNT WANT THEM! WE GOT TOGETHER AND I THOUGHT I WOULD BE MUM TO THEM....WELL I TOOK MOH ICE SKATING AND WE THOUGHT WE WERE TORVILL AND DEAN EXCEPT HE FELL AND BROKE HIS ANKLE....THE STRANGE THING WAS THAT WHILST IN PLASTER HE GOT ME PREGNANT!!! NOW NO-ONE EVER TOLD ME THATS HOW ITS DONE!!! WAS IT TO DO WITH BEING "PLASTERED"!!! WHATEVER IT WAS IT WAS AMAZING AND I COULD NOT BELIEVE IT, THE MOST WONDERFUL THING THAT HAS EVER HAPPENED TO ME ...TO HAVE THE MOST FANTASTIC SON...HE IS NOW 31 AND THE KINDEST MOST CARING FELLA.......WE ARE  SO LUCKY TO HAVE HIM, AND HE NOW HAS A LOVELY PARTNER AND IS VERY HAPPY. LIKE I SAID ALL GOOD THINGS COME TO THOSE WHO WAIT.......AREN'T WE LUCKY?razz NO-ONE CAN EVER TAKE AWAY THOSE MEMORIES.


#13

Hi Dollymaz

I do enjoy reading your posts, but I do wonder if you have the capital lock on!

I always think someone is shouting at me when the text is in capitals!

But if you prefer it that way it's fine.

Love

GG

 


#14

I once saw a guy on telly who dealt in statistics. This was pre lottery days.

He said,''If you filled an Olympic sized swimming pool with identical golf balls, but inside one was a diamond, and you had one chance to pick it out, then that's the same odds as finding your ideal partner. Quite an analogy. So yes we are very lucky Dolly.

When my wife gets annoyed with me, which happens from time to time, she hops about like a cat on a hot tin roof, this makes me laugh, that exasperates her and she gives up. This means arguments last all of ten seconds. If it's a legitimate point I take it on board, if it's an unnecessary rant I just ignore it......saves time.

I suppose having worked in practical jobs you just get used to ignoring things that don't apply and concentrate on the important things.

A favourite expression at work for awkward or objectionable person was.....there's plenty of room for 'em. The odd poke on the nose was required from time to time for those who talked when they should have listened. These days wimps spout off and when someone pokes them for being out of order, they run squealing to the police. This is why so many think they can do or say what they want with impunity.

My ex wife had a boyfriend who slapped my daughter.......he didn't do it again, it cost me a small fine, but he knew if he did it again it would be a bigger fine and I'd gladly pay it. I have no time for such people. I don't believe in violence, but I also don't believe in letting people get away with bullying, either verbal or physical.

It's a happy life, Morph.


#15

HI goldengirl ....hows that?wink the reason i do capitals in bold is my eyes are pretty c*** even with glasses, and i find it easier to read......now  im squinting so might have to resort back....SORRY! BUT PLEASED YOU ENJOY READING THE POSTS....coolLUV DOLLY X


#16

FOR US OLD F**TS IT DOES MAKE LIFE EASIER IF YOU ARE ON LAPTOPS. ON MY DESKTOP IT'S NOT SO BAD............WAZ HE SAY MUSKY?.....DEPUTY DAWG REFERENCE.


#17

So sorry, Dolly!

I never thought about it being an eyesight problem....and me getting cross when people don't see my husband has problems such as freezing!

Keep posting !

Love

GG


#18

Well done GG. If we make a mistake (as we all do from time to time), it only takes a moment to apologise and the world will think much more of you for doing so.

On the humour side of your comment......If you hear shouting while reading large print you have got the wrong medication. Personally I hear bells, but that's coz I work in Notre Dame cathedral.......should've gone to specsavers.

Just in case you feel like shooting me this is my sense of humour not condemnation. I get tired of explaining after the event, so I now do it in advance to those who don't know me.

Morph.

 


#19

Before the event, after the event ...   There's no explaining you, Morph!  You're beyond explanation.

(And that's MY sense of humor.)   J

 

 

 

 

 

 

 

 

 

 

 

 


#20

Hi All.....its me with the wonky eyes eye roll...no need for an apology GG, its very good of you to do so and much appreciated.....thank you. Its just one of those things since i was a child...you know the old patch worn over a pair of N.Health glasses. Now i also have thyroid eye disease and apart from seeing double, seeing double!!!!wink i have one lid that is barely open and one eye a bit prominent.....LOL :-) doesn't paint a very pretty pic does it? but never mind i do have other attributes....ive just got to remember what they  arefrown!! 

Love your comments Morph....you really are a wasted talent....you should have been a script writer....so funny.

Im off to a dance...really not keen going out in this awful weather...rather curl up by the fire! chat soon luv Dolly x