Stobbs1907


#1
Hi my name is les thanks for letting me have the chance to share my experiences and i hope to get good advice of others ive been on before im x army but was diagnosed 9 yr ago i had dbs 2014 now my tremour has stopped my walking is bad esp in the morning and i get very low aswell alot i freeze sometimes and keep hearing things i have recently losed my mam so things have been worse for that im open to talking privatley too once again thanks

#2

hi ,i also had dbs doing well my walking got bad & alot of freezing making me fall alot, my dbs nero put me on entacapone which made my sinemet last longer so more on time walking better then also added azilect which made a unbelievable difference to my walking hope this helps abit.


#3
Thanks gus that helps alot

#4
I was recently took off rasagaline cause i was in constant pain all over my body i tried pain killers it never helped so i mentioned to my parkinsons nurse and she took me off rasagalineand the pain is not as intense now but would like to mention i dont know if im affected by paranoia but just cause my tremour is settled now after my dbs everyone at work thinks im ok i try to explain that theres more to parkinsons than just the tremour but they seem to not give a ..... about it now when i had the tremour they were very supportive now nothing they think im fully fit i work full time but i get really peed off at how they think that everythings ok now i mean im not after sympathy but just a bit of understanding of what myself and others go through with neurological diseases im 44 yrs old work full time i try to keep fit as best i can and eat healthy im not sure if its distonia or dyskensia but i sometimes get involuntery movements im my arms and mainly my stomach its not nice just wish there was more publicity about parkinsons to let people realise living with this horrible disease is like i know there are worse things to have but just a bit of understanding would help people like us to live a happier lifestyle and be able to cope better with everyday life cos they would also realise depression in parkinsons is very high

#5

Know what you mean man I am 55 year old with pd but unless you have a big bruise or cut no one knows u what you are going through be strong and just do your best I also am just like you but I just plod on 


#6
Thanks ldj its great advice just a lot of people think because your not in a wheelchair then u r ok it just gets on my nerves i realise that no matter what i think it wont change what people think so i guess u r right il just plod on

#7

 

You are right Parky is so much more than a tremor, it effects every aspect of our day and lives even if some of its effects is hidden to the eyes of those around us, there are worse more final things too have, but even this will be final in the end we just have a generous amount of time too live with it and the generous amount of problems it gives us.


#8

I have had so many folk shove by me, on lifts, narrow pavements,, etc . Now I a walking stick. I don't use it to walk. Cos I'd end up falling over it. It's more a visual aid to everyone that I'm unsteady,freeze, stumble sometimes with a festernating gait, I'm liable to run into them.       

The other thing is people's sympathy is short lived. I had persistent hiccups, for a week. In the queue at my local greggs, a builder was in front of me. 1st hiccup-went unnoticed, 2nd hiccup-turned and smiled, 3rd hiccup-ignored, 4th hiccup-turned and glared. It was a good job he was next to get served, or I'd be on the receiving end of a punch.  


#9

hi stobbs be very careful with your work its not to stressful as i was a plumber also carried on work with dbs ! stress made me tremor which i had to get reprogrammed ,went to work again same happen so in the end i had to give up work & my dbs i would say got symptoms more under control


#10
Thanks gus ill keep that in mind thats crossed my mind thing is ive had parky for 9 yr and im only 44 but thanku for that advice

#11

Work keeps the head busy  don't stew on things be happy 


#12

hello stobbs and all , i was dx may 15.when i finally met the neuro specialist ,.i had to actualy ask him if i had pd,because he spoke to me as if i knew ,and was ever so flippant about the dx...youve got pd  off you go atitute..i walked out of there feelling lost..im learning theirs so much more to pd and certainly depression is a big problem...but i must say having a chat on this forum helps a hellova lot...your not on your own . hope thing get clearer for you


#13

i had pd at 36 now 44 yrs old keep fit & heathy but never over do it.happy easter remember chocolates good for pd 


#14
Thanks smudger i hope so too had too i hope u r ok too happy easter And on that subject thanks gus the only problem is im allergic to chocolate have been since i was 9 but thanks to u all for the great advice and its the reason i came on here happy easter to u too mate

#15

Having only joined this group in the last few days it becomes apparent that we are all similar in age of diagnosis. Is Parkinsons becoming more common in younger people or is it the fact that the ones who frequent sites like this are of a computer literate age group, so thats why we only see similar ages? BTW  has anyone had a DAT scan and if so did you experience any side effects?


#16

Hello barnowl...yes i had a dat scan about a year ago , i didnt notice any side affects ,things were differant at the time because of pd dx after and some common side affects of meds...have you had a scan and noticed any changes ?...


#17

Hey Smudger, No not really, i have my  thoughts and theories but no medical knowledge. Over the years i have had to have various xray's, the DAT scan being 40 mins in duration was possibly a necessary evil but still a long blast of radiation. Not everyone has one of these to determine whether they have PD or not. I suppose the only other way is wait and see what develops method. Its done now but i won't be having anymore xray's unless no alternative.

 


Barnowl

 

 

 

 

 


#18
Hi barnowl1 when i was told 9yr ago i first had a ct scan because i had the tremour after the ct scan i waited a couple of monthmy tremour got worse along with other things then my consultant asked me back in to have a dat scan then got told 2 weeks later that a diagnoses of well at the time was early onset of parkinsons at the age of 35 but now 9 yr later ive recived dbs and my tremour ok just other stuff but i just deal with it nice to speak to u anyway

#19

hi  stobbs   where did  you have your dbs too


#20
Can u say that again gus pls didnt quite get that