Just saying Hello


#1

Thank you for accepting me on this site, I am a 58 year old married lady with four grown up children.  I started with a tremor in my little finger in 1997 but was not diagnosed with pd till 2003. As well as trying to cope with the symptoms of pd and the side effects of medication, I also feel it makes  me feel very isolated, I don't know how others feel. On the positive side now my meds are right, I am still working 30 hour's a week and coping well outside of work too. Not saying I don't have bad days but at the  moment the good days still out number the bad. Thanks for listening,  hope to hear about your stories too.


#2

Hello and welcome, I am fairly new to the forum and its great to read your post. Fantastic to know that your doing so well considering the length of time you have had PD. After only being diagnosed a few weeks ago I am scared to death of what the future might hold. Your post has defintley cheered me up. Thanks


#3

Wildrover has just said it all! I am 69 dx since Christmas 2016. Looking for hope and friends on here. I wish you all well x


#4

Pickz06, Wildrover and Roseycrunch welcome to the forum, have no fear there are plenty of people on here prepared to help you through the mine field that is PD and you will make plenty of friends.  Myself ? I'm fairly new on here having been diagnosed in 2011 and gone through umpteen medications to cure my tremors(yes, I am greedy, I have two !!) before and after diagnosis and finally because none of them worked was put forward for Deep Brain Stimulation which I had done in 2013.  This made a big difference bringing the Parkinsons tremor into line but not the Dystonic tremor(I originally was diagnosed with Essential tremor).  The operation involves the drilling of two holes in the skull linked with a trench, wires are then put in and fed through your body to your chest where they are hooked up to a battery which stimulates the brain into producing dopamine.  If you see the operation on tv you are lead to believe that the patient is awake but they are not, it is a date rape type drug that gives this illusion though I have come across one person, though drugged was awake during the whole process.  Me, I was out for the count for seven hours though I was informed afterwards that a member of staff went back to the ward to fetch my medication for me to take, I have no recollection.  The medication I am taking is 4 x 250mg Madopar which helps with the PD.  Don't be afraid to ask anything on here, helps to talk.  I went to see my area Parkinsons Nurse yesterday and she was very helpful and informative about all issues with my PD, everyone is different as it takes so many different forms.  Enjoy the Forum and explore the different discussion topics.


#5

This is a classic example of one of the side effects of my PD, forgetfulness !!  My Essential/Dystonic tremor started in my teens, I am 64 heading towards 65.  My other side effect is balance but it has not been so bad since moving home, it is confined spaces that give me issues and then there is the swinging arms when I walk and I look as if i'm drunk !!  But through all this I stay positive and since diagnosis have made light of my condition and been given funny looks by people, life is too short to be miserable.


#6

Hi there, thanks for your reply im so glad i cheered you up.  I do realise just what your going through, i know i was in shock when i was first told and felt like it was the end of the world for me.  All i can say is iv tried to live as normal a life, and thankfully iv been lucky with my meds, unless you know i have pd you wouldnt guess.  I'm realistic and do realise its a progressive illness with no cure as yet, and sometimes i do feel down and lonely, but i have so much to be happy about, so try not to dwell on it too much. hope all goes ok for you.  Good wishes.


#7


Hi there Rosiecrunch, what can i say, its hasnt been as bad as i thought when first told i had pd, but i have always been a very determined person and realise i have more good things in my life to get on with.  Like i said i do have dark days but try to remain positive.  I m also realistic and realise its a progressive illness with no cure as yet.  Please keep in touch with me if you would like ok? best wishes.


#8

Ps Wildrover, please feel free to keep in touch if you want ok.

 


#9

Sympathy. Was in the middle of a long response and lost the lot! Don`t worry too much. It is slow to progress, and drug treatments improve all the time. It is isolating unfortunately.

frances


#10

My eldest brother had the extreme form of PD with head and full body shaking.  I didn't think anything of it as I didn't think it could be heredatory but it seems it can and I am proof of that but as it goes I have adopted a positive attitude to the disease and try not to think about it.  At least mine is a different form of PD in that it is tremor based down the right side of my body.  When i'm at rest my legs do shake and I have mentioned this to my Neurologist and Parkinsons Nurse.  Frances, no one need be isolated on here as there are plenty of people on here in the same boat as you, just reach out.


#11

Thanks for your reply. You sound very much like me. Some days I could just like on the floor and cry, other days I kick my butt and sing and dance in the kitchen! Can't lie though, I resent this happening to me, but like my kids remind me, it's not all doom and gloom. Could be worse xx


#12

Nobody likes what we've got Rosiecrunch but we make the best of it and try not to let it affect our day to day life.  As I said before, try to be  positive in your attitude, even laugh at yourself by making light of your situation I know I did before I had the DBS done and still do sometimes.  With the advances in Medical Science these days there will come a time when there won't be Parkinsons Disease as there will be a cure for it.  Take good care of yourself. x