Why me


#1

Diagnosed in Feb 2013 after nearly a year of pain and wasted chiropracter treatments. In the end a physiotherapist who was as puzzeled as I was that there was no improvement in my muscle problems noticed a slight tremmor in my hand and it all took off. The spine specialist was in denial but sent me to see a neurologist who diagnosed Parkys as soon as I walked in the door. Have spent the time since trying to get medication right and I think that's happening now. All this has put a terrible strain on my wife but she has been a rock. Would love to talk about symptoms to someone who has also suffered aches where I didn't know I had places and anything else relevant.


#2

Hello Teapot, sorry you've had to wait so long for a reply.

Pain (in retrospect) was probably my first symptom. I self-diagnosed a frozen shoulder perhaps a couple of years before seeing a neuro. And spent the second year with a burning sensation between my shoulder blades. All pretty much relieved by the meds (though just might be creeping up again . . .)

Ohs and other carers are indeed rocks. I am in awe of mine who I treat abominably at times. Let's hear it for them!

And finally, if I may say so, while I understand the why me stage of grieving, try not to stay there too long. There's even less of an answer to that than there's a cure for PD!

post early, post often, we'll all like to hear from you Teapot (milk no sugar, please).

Very best

Semele


#3

Hello Teapot

My eventual diagnosis followed a very similar pattern to your own.  Chiropractic treatments for years and physio. for trapped nerve and frozen shoulder.  The neurologist also diagnosed within minutes of meeting me.

My nurse thinks I probably had Parkinson's for 5 years prior to diagnosis.  The  body ache is always with me in one or many places especially when doing physical things.  It seems about half an hour is my limit to work in my garden or other physical activities and  then a rest is the order of the day!  I have been getting the meds. sorted as best I can and now after 20 months am coming to terms with the new experiences that each day brings.

The extreme fatigue is hard to deal with when you have always lived a very active life.  I so understand how you are feeling and it is so difficult to explain to someone who hasn't experienced it.  I also find high anxiety levels are difficult to deal with again if it is something you are unused to.  

Support from family and friends it a really huge help and of course those closest always see the difficult times and get the brunt of our anger and frustrations.

I'm sure many forum members will offer you support and share their experiences.  Hang in there and I hope the meds continue to help you.

Best Wishes

 

 

 


#4

Hello Teapot

I had been going backward and forward to my Gp with various things probably over the last 4 years or so , firstly i had noticed a tremor which was put down to anaemia , then i started to notice aches and pains when getting out of bed  gp put this down to my thyroid problem , then it progressed to aching when i got up from a chair  then i devoloped a very painful shoulder and noticed a more prominent resting tremor  so i went back to my gp who finally referred me to a neurologist who  diagnosed parkinsonism on my first visit , that was then changed to familial parkinsons on my next visit after my mother had been diagnosed with Parkinsons also

I do agree that getting the medication right does feel like a hard slog  i am hoping that mine is right now after a few months of side effects, and as polly states the fatigue can be difficult to deal with although since i changed my medication i am not has fatigued as i used to be

Good luck and best wishes


#5

hope your doing well on new meds shellly65


#6

Hi Gus

yes thank you i really do feel  like i am getting back to my normal self again  well as normal as i can be that is , just the dreaded constipation to get rid of and i will be a happy bunny again


#7

A pint of prune juice does......excuse me , omg


#8

that just reminded me of the syrup of figs we had as a child eek

 


#9

Hello turnip and shelly

OH had Movicol aka Laxido for constipation and it works very well.  Powder dissolved in water. 

Hope you find a cure soon.  We`ve now got the opposite problem due to side effect of something or other he`s on.


#10

HIYA TEAPOT....MY STORY SIMILAR TO EVERYONE ELSES, DIAGNOSED FEB 2013 AFTER MANY SYMPTOMS SINCE APPROX 2009. FROZEN SHOULDER, CORTISONE DIDNT WORK SO HAD AN OP END OF DEC 2009. STIFFNESS AND RIGITITY IN RIGHT HAND AND ARM, NOT SWINGING RIGHT ARM, LOSS OF SENSE OF SMELL, PERFUMES SMELT AWFUL. DRAGGING RIGHT FOOT, TAKING TINY SHUFFLING STEPS WITH A STOOP. PAIN ACROSS SHOULDERS, NECK SPASMS, ARMS AND HANDS TREMBLING, VOICE SLIGHTLY QUIETER ( MUCH TO MY HUSBANDS RELIEF)!!eye roll ANXIETY, TEARFUL, LOSS OF INTEREST IN HOBBIES AND RESTLESS LEGS FOR YEARS SO BAD I SLEPT VERY LITTLE. WAS PUT ON REQUIPXL AND RESTLESS LEGS STOPPED ALMOST STRAIGHT AWAY FANTASTIC. EVENTUALLY WENT UP TO 14MGS TAKEN AT NIGHT BUT SYMPTOMS WERE NOT BEING CONTROLLED SO THEN GIVEN 12.5/50 MG CO-BENELDOPA 3 TIMES A DAY BEFORE FOOD AND CUT BACK TO 10MGS REQUIPXL. TO BE HONEST I FEEL UNDER MEDICATED AND THE TREMBLING AND NECK SPASMS ARE NOT GOOD, I RANG MY NURSE LAST WEEK AND BECAUSE I HAVE JUST FINISHED A,BIOTICS FOR A CHEST INFECTION SHE THOUGHT THAT COULD BE THE REASON. IM FINE NOW BUT PD SYMPTOMS ARE NOT SO I WILL BE RINGING HER AGAIN THIS WEEK.

I HAVE NO PROBLEMS WITH NUMBER TWO S!!! BUT IN THE PAST FOUND LIQOURICE OR AS YOU SAID TURNIP....PRUNE JUICEidea

ALL THE BEST TO EVERYONE...KEEP SMILINGrazz


#11

Hi to those newly diagnosed

Please could I urge you to get a speech therapy assessment earlier, rather than later?

You may currently only have minor speech/voice issues, but therapy is much more effective in maintaining a level, than trying to get back what has been lost and there are good, well researched techniques to maintain voice and speech for PWP.

Speech therapists are also the specialists in swallowing problems.

They work both in the NHS and privately.

To search for a private speech therapist you can go to:

helpwithtalking.com or visit my website as detailed on my profile.

 


#12

to me if you feel you are under medicated then you are. end of story.


#13

Hiya Turnip........yep i reckon you are right and so i rang my nurse again today...she is going to have a word with the Nuero doc and get back to me. Thank youbig grin


#14

good luck