New here just saying Hi


#1

Hi everyone

 I am new here so just thought i would say 'Hi'  and introduce myself , i am Michelle , i am a PWP  , i was diagnosed  with Parkinson's disease in August 2013 , although i have had a tremor for the last 3 or 4 years  up until a few months ago  my tremor had been put down to various other things such as my anaemia which i had suffered with for many years , my anaemia was cured last year , but again i thought nothing of the tremor until other symptoms started to show , feeling very  stiff and my left shoulder was very painful  and i had the feeling as though i was shaking inside my body  so given these i decided to go back to see my GP  who referred me to a Neurologist who specialised in Movement disorders and here we are a new recruit to the Parkinson's club after seeing the Neurologist   something occurred to me my mother who is 76 yrs old had the same symptoms as i have  but more advanced  so after my diagnosis i advised her to go see her doctor  and she was  diagnosed as having Parkinson's disease earlier this month  so a double whammy for our family

Hearing the diagnosis was for me devastating my first reaction  was ' Parkinson's ? i am to young to have Parkinson's  to which  the Neurologist replied 'Michael J Fox  was diagnosed in his 30s ' but now i have come to terms with sharing my life with Mr P and look on it has another challenge which i intend to face  with as much humour as possible

 


#2

Hi Shelly

Welcome to the forum! You're doubly welcome as you're the first new member on our new technology. As you might have seen from other posts there may be a teething trouble or two. But stay with us - you may need your sense of humour.

Very sorry though to hear of your double whammy, and I hope we can support both of you, and in a multitude of roles.

"Devastating" is quite a reasonable reaction, I think. But most people here would also encourage positivity: for many PwP the symptoms advance relatively slowly so there is time to adjust.

So, ask away. As soon as we find out how to crank this Forum up to speed, we'll be chatting away.

Regards

Semele

 


#3

Hi Semele

 

Thank you for your reply , i am indeed  having a few problems logging in , i can log in but sometimes i can post sometimes i cant  i get the message saying i need to log in to post , even though i am already logged in , but i think that maybe due to the fact i was using firefox  i do not seem to have the  problem quite so much  with Internet explorer .

 

Positive is my middle name , i think it was the initial shock of having Parkinson's at 47 yrs old although i now know much younger people suffer with PD , then my mothers diagnosis of PD , but after a lot of research into PD i have a very positive attitude  i may have PD it does not have me

Well it is a honour to be the first new member .... Thankyou

 


#4

Hi Shelly,

as Semele says we are having a little teething trouble with the technology but this forum will shortly refill with people who have lots of experience of daily life with Parkinson's. I hope you get as much support as I have done from the forum.

Elegant Fowl


#5

Thank you elegant fowl i am sure i will  ,i am working my way through the forum slowly but surely

Shelly


#6

Hi Shelley

Welcome to the forum - I have really  missed it during the time it has been down.  The others aren't quite the same as this one.  Hope you find the support you need.  Be kind to yourself, it is a big shock to be diagnosed and to start looking for information about your condition. 

Fizzy


#7

Hi Fizzy

Thank you for the welcome , i like  what i have seen of the forum so far i and i hope to be able to become more involved in the forum

Being diagnosed was a bit of a shock but not totally unexpected   as my gp  had said  she thought it may have been essential tremor but was not convinced as i had a resting tremor   so in the run up to seeing the neuro  i asked good old Dr Google  and he came up with essential tremor or Parkinson's  so given what my gp had said i was  sort of expecting a parkinson's  diagnosis , then a couple of weeks ago my mother had her diagnosis of PD confirmed  .

I have done a bit of research but mainly i have had some  literature from Parkinsons Uk  which  was really helpful and informative , so all in all  i am feeling very optimistic i have age on my side a luxury my mother does not have

Shelly

 


#8

Welcome Shelly, I'm about your age, now 46, dx at 45 in January this year. I started out very positive, researched and read everything possible and then I hit a low point in the summer when my meds were causing side effects which were worse than the PD!  This coincided with the forum being down, which I missed the support of hugely. Anyway new drugs seem better, 3 kids back at school and all in our new routines and I'm back to my positive self. Started a better exercise regime and feel loads better. My point is, don't be surprised if you're a bit up and down in your first year after dx, especially whilst titrating on medication. My symptoms are not controlled so well pre menstrually either (a younger onset problem!) which took me a while to realise. Now I know when to expect a difficult few days I'm less concerned by it. Take care and hope you and your mum continue to do well. 


#9

Hi Silverkins

 

Im not really on to much medication at the minute my neurologist started me on Rasagiline  which has helped to some degree   been on those for 7 weeks now  i do feel better  but aching muscles  in my worst affected arm  can be a problem  but not sure if that is  the PD  or   side effects from the Rasagiline, my children are grown up 24 and 25  so capable of looking after there selves if i am having a off day

You have the pre menstrual curse as well , i am doing a bit of research mainly trying to find out  if i could have had a dominant inheritance from my mother  , interestingly i have 2 brothers who so far are unaffected by PD  my maternal grandfather suffered with Dementia so would be interesting to research if there is a link between Dementia and Parkinsons   so that is on the to do list , although my mothers neurologist  is saying my mothers PD could be down to the stroke she suffered  but im not convinced as my mother had symptoms long before she had a stroke her symptoms are more advanced than mine  partly due to PD and partly her stroke  so i guess time will tell , as for me positivity and humour is the way forward for me  


#10

Hi there sorry to hear about you and yr mum ,being positive def. fantastic and healthy attitude. 

 My father has had mini strokes and has parkinson's. So did sibling, have done a ilttle research on web for genetic link for PD not much conclusive.  PD and dementia stronger links.  

Have looked at lots of topics on forums (now in archives) and there is a lot of useful chat there - and support

bye for now and best wished to you and yr mum

 

 


#11

Hi Danne

yes i cant find much on the web either but i am thinking there may be a link some where my mothers father having Dementia , then myself and my mother developing PD  i am concerned  as to the risks to my children of developing PD in the future

 

Sorry to hear about your  father having had mini strokes  best wishes  to you all


#12

Good afternoon everyone

I have been on the forum before, I must admit I tend to dip in and out, I dip in if I am honest when I'm on a bit of a downer but nice to say this time I am ok just thought I would look over the new set up and it seems pretty good thus far.

Who am I , well I am 53 diagnosed with PD in 2006 which started as a tremor in my right little finger and cramping in my hand when writing at work. Although for a good few years prior to this I had fatigue ++++ I have described it before like hitting a brick wall but I have always been busy so never took a great deal of notice I did visit my GP when it was particularly bad and I do wonder just how many blood tests I actually had prior to 2006 for blood count and thyroid and always came back as normal; which they would.

Anyway I get referred to Neurologist, I go alone (initially) because I didnt think any specific diagnosis would be given at a first consultation; how wrong was I, in fact my sister came with me.....and I was glad she did. Shell shocked comes to mind as to how I felt but do you know the worst he said was that I displayed the mask like expression quite common for PD; that has stuck with me from day one. Why did that upset me more.. I really dont know but I was determined from that day I would smile all the day long from that day on.

So here we are 7 years down the line and if I say so myself I think I'm doing pretty damn good....please never underestimate the progress of this condition I know it is doing so but it does not stop me from doing what I want to where I want to and how I want, but it can make me miserable it can make me cry it can make me sad for my family it frustrates me it can put me in a dark place but .........its not the b all and end all. It is hard going and I have noticed lots of changes in myself how much slower I am how much longer things take me how I have to pace and plan (people that know me would disagree with that statement) but I know I do because I know how much I used to do.

I went to my first local support group the other evening and if for no other reason than to support the group I will keep going because in time, a long time I hope, I may need their support and I hope in going I can support the group as a whole as well as others individually.

I am a great believer in positive thought and it is hard to be so every minute of every day but on the whole that is my coping mechanism, so looking back this is quite a long post but I look forward to reading posts and dipping in and out as I did before but hopefully more in this time.

Take care everyone and keep smiling x