Newly Diagnosed


#1

Hi,

This is my first time on the forum. I was diagnosed in January 2014.... Shock is an under statement and if I'm honest, I think they have got it wrong!!!! But after my GP, Consultant and Parkinson's Nurse all confirming there conclusion of me having... *PARKINSON'S* Reality has kicked in.

It started in August 2013, where I noticed that I was becoming very tired during the day and this was not down to me over doing things!!! ( I have my wife for that) It also came to my attention that I was struggling on my feet, with my balance.....I had none!! I went to the GP and they said that it was probably an ear infection and gave me a spray for my ear.

A month later, I started to have problems with my joints... A return journey to the GP where a probably, arthritis was the cause. (How wrong were they!!) 

Whilst this was all going on my wife became paranoid as I was not smiling as much, Was I not happy ? Oh no, just other symptom of Parkinson's

Towards the end of the year, I was getting a shock down one side of my body whilst resting this would have 2/3 times a night, 3/4 times a week.

My wife also noticed that I was slurring my words and would stutter when excited :-)

But then the hand trimmer began......I had noticed it for a while but tried to keep it to one side whilst I sorted all the other problems out.

Back to the Dr, Who we are now on first names terms..... PARKINSON'S

Can anyone tell me why everyone states that I have Parkinson's, when on paper work it states,   "Probable Idiopathic Parkinson's Disease" ????

 I have now come to terms with my Diagnosis and running the wife ragged.

I hope that I have not bored to all too much as I hope to be using the forum, often.

 

Rams57 ********


#2

hi there ram 57, I dx at 34yrs old what a shock to the system,the drugs for pd are very good these days.Have you started any meds yet,im glad you found this site you can get alot of answers from it.And there is very good support from pduk, also your pd nurse & pd support worker.gus


#3

Hi Rams

My story is very similar to yours . i developed a left sided hand tremor about 4 or so years ago , my doctor put it down to being anaemic, then i started to develop joint problems stiff and achy getting up from a chair and whilst getting out of bed in the morning , another trip to my GP this time it was put down to my thyroid problem , then my left hand started to shake even more and the feeling of a internal tremor and extreme tiredness and a painful left shoulder sent me back to my gp who this time did some routine tests and said if the tests came back clear she thought it was something ' neurological ' and would require further tests  at no point did she mention parkinson's , so i went back for the test results which were clear  GP said she would have thought essential tremor but she was not convinced , again no mention of parkinson's , so given what she said i went home with my appointmennt to see a neurologist but in meantime i decided to consult DR Google  and all that kept coming up was essential tremor or parkinsons given that my gp had already ruled out essential tremor i had it in the back of my mind when i went to see the neuro that parkinsons was a possibility , my neuro said he was more than positive it was idiopathic parkinsons but when i went back 3 months later it was changed to familial parkinsons has my mother was also diagnosed with pd a few weeks after me

Neuros put' probable' for a variety of reasons , there is no definative test for pd they have to go be symptoms and some if not most neuros will prescribe a anti parkinson drug if symptoms improve then you more than likely have parkinsons .

 


#4

Hi Gus, Thanks for replying to me, I am on Madopar 62.5mg 2 tablets four times a day. I have been referred to a Specialist Assessment Rehabilitation Centre for physiotherapy and occupational therapy. that should be interesting. I have also been referred to a research nurse who is interested in contributing to the tracking Parkinsons study. I THINK THERE IS A FREE DINNER THROWN IN WITH THAT? its all go with this PARKINSONS. rams57


#5

Hi Shelley, Thanks for replying. They have put me on meds and they have made a bit of a difference. The biggest problem I have at the moment is sleep problems. No matter what time I go to bed three hours later wide awake back to bed two hours later another three hours, and the wife wonders why I AM MISERABLE DEVIL rams57


#6

hi ram57, Do you get alot of pain,amitripyline are good for pain & also very good for a nice nights sleep,have a word with your gp.Its all tablets with this pd stuff.ps hope you get double servings


#7

Gus,

Double servings, I will be holding out for dessert, If there is no  dessert there will be a row.

Thanks for the tip about the meds, When I see my GP in 2x weeks I will mention them to her. As far as the pain goes, calf muscles, ankles and right foot cause me jip!!!

In the mornings my Wife says that I walk like "Happy Feet" (Penguin) but with out the smile.

 

34 Years old, that seems very young. How long have you had Parkinson's for ??

Rams57**********

 


#8

Thats abit like me when i wake up for a pee,walk like a smurf.Im 42 now mine was very aggressive went through the meds quick & started get bad dyskinesa thats throwing my arms out everywhere,so then had deep brain surgery two yrs ago,Tremors & shaking all gone just a bit problem with walking & balance,speech abit slurry now & then,have my bad days but snap out of them quick just think alot of people worse off then me,


#9

Hi Gus 34 what a shock that must have been for you and your family. Did you have any idea what it was before they diagnosed you? I am very lucky i have a close family, three sons and a daughter all living within a two mile radius, and of course there is the wife  (ah well). P.S. You made the wife smile smurf and penguin walking down the road.


#10

Yeh it  was a shock & no ideal i had it i used to work away as a plumber on pubs & holiday camps came home one weekend and my wife said my index finger twitching .Made appointment with gp referred me to nero with in 5mins he said i had pd ,did not start to get to bad for 2yrs so i carried on work,drinking a bit more to block it out,then bang all down my arm ,more tablets changed job,got compulsive gambling,changed tablets gamblling  stoped,tremor got  worse more tablets reduced hrs at work had dbs worked for another yr then had to give up work,yes i have a rock of a wife 2xgirls 1 bad boy but hes getting there always one ! Oldest daughter came with wife to frenchay hospital when had dbs when  my wife & daughter was aloud too see me after opp ,daughter went a little pale well i did look like ET nurse made her sit down & took her bp talk about  stealing the lime light.wink 


#11

Hi Gus  Sounds like you have  a lovely family there, trust the girls to get in on the act no day of fame for you.  My wife and daughter have both been a rock to me. Wife has joined us up to Parkinsons UK and the Derby Branch their meetings are the first Wednesday and Saturday of each month. My daughter (Clare) was the one who persuaded me to join the Parkinsons forum and is teaching me how to use the lap-top (good job she has patience with me). Like you did I have got to think about work, I am an industrial joiner and I work with my youngest son, my tool kit is a circular saw and three nail guns, these dont look good with a hand tremor and poor balance but thats for another day.


#12

just try and take every day as it comes & stop saving them pennys and start enjoying life ,,parkinsons support workers good for filling out benefit forms if needs must.you could always use nail gun to stop tremors all ways remind me of that film lethal weapon smile


#13

Hi Gus     Think Health and Safety will have a field day when I get back to work. Still got three months of paid sick time yet so I am going to see how it goes, bad day today went to the football yesterday got caught in traffic only just made it on time,so when I got there I was a bit wound up. I have had aches and pains all day, I am just about fed up with it. Clare (my daughter) sent for the PIP Forms received them took a look at them and reached for the Jack Daniels, thats a job for someone else.


#14

Sorry but im a westham fan,i used to love jack daniels after my 12th pint of kroney ,gave the drink up 5yrs ago did not mix very well with the meds ,have the odd cider being a southern man


#15

westham fan thats not to bad we could be playing each other next year meds have sorted me out now took      a bit of getting going to day. felt well for the last few days then it hits you again got to make sure    it   dosent drag you down .easley said than done you must have had some ups and downs over the years gus     hope you have had a good day  rams57


#16

Hi rams57,

I am a Watford fan so get extra punishment on top of my PD :) Very good result for your team this weekend.

Cheers


#17

hi ram57.  First of all i thought you meant us going down again till i had a look at coke cola,yes your right there you do have your good days and bad.The key is to get the best dosage of meds thats right for you as time goes on abit your start experimenting what dosage is right for you ,what times are good ie on times and off times usually a tablet has a on time about 4hrs,when you take your mads better on empty stomach as they get in you system quicker try and stay away from high protein foods such as cheese,eggs  its makes it harder for tablets to get in system as they have to fight there way through food,protein foods take longer to digest making it harder for tablets to get in to body.Make your mobile phone your alarm clock for tablets,if you feel the tablets are not working phone your pd nurse to get gp to up them.Your in control no one else and fight it.good luck & get on those summer holidays as vit d & c  really make you feel good.

 


#18

hi ninja 61 you have nice team there they always try to play football.iam very new to this have you been diagnosed for long with me its been 2 month and out of the blue .started the meds they have made a diffrents but not as much as i was hoping


#19

What meds are you on & what times taken, also what  symptons are  you still getting how long been on them


#20

hi gus good idea about phone alarm i have got tablet box as itake b p tablets as well. We have put off opening the caravan until Easter, it is on the east coast at a place called Mablethorpe. The dog loves going she jumps in the car, she always seems to know when we are going. I take my tablets at 8am, 12 noon, 4pm and 9pm. My tablets are levodopa 50mg, eight a day.