Dx at 36


#1

Hi, I'm new to the forum. I was DX in April at the age of 36. I was really shocked after a year of investigation my consultant told me 'I think you have Parkinsons' I was sent for a DAT scan which confirmed that her suspicions were correct. I felt like my world had been turned upside down. Unfortunately, I didnt have the most empathetic consultant and I was left with my diagnose to deal with on my own. After many stressed calls I was referred to a PD nurse who booked me into see her within days of receiving the letter. The letter stated that I didnt feel my symptoms were an issue (I had originally gone to my GP as I couldnt bring food to my mouth with my left hand - my symptoms were affecting my life). My PD nurse is fantastic. She said that she was interested to see me as on a whole people are dx once symptoms appear. whilst I was with her she asked if I would like to see the consultant at that hospital who luckily for me happened to be at the pd clinic and was able to see me. We all chatted for an hour about how I felt and the best way forward. As my arm was out of action and my leg dragging with many trips it was suggested to go on meds. In September I started on a low dose of Medopar. My consultant allowed me his email address to keep him up to date on my progress. yesterday I increased my dose to help combat the wearing off. I'm also doing physio which altogether i'm hoping might assist my movement. It was a big decision go straight in to Levedopa but as my dopomine levels are depleted it makes sense to try and get some more in there rather than trying to get the small amount left to get going. I know it's going to be a long road but I'm hoping that one day I will be able to take my children skiing again. Reading other peoples story's enable me to realise I'm not alone and that there is a lot of support out there.


#2

Hi Watermelon

Like you i am new to the forum i was diagnosed with Parkinson's in August this year at the age of 47 , like you i felt devastated when my consultant told me it was Parkinson's , then within a few weeks of my dx my mother who is 76 was also diagnosed with Parkinson's  so a double blow for our family , but like you i have found there is a lot of support out there  including this forum , i ordered some leaflets from Parkinson's uk which were really informative  and helped me to understand Parkinson's i would recommend them they really helped me put things into perspective

We do have  Parkinson nurse in our area but as of yet i have yet to see her as i understand she is off work till October and has a backlog of referrels so still waiting for that

I to have a very sympathetic consultant which does help , i am taking Rasagiline at the moment which is providing a certain degree of relief but not fully  i will have to wait till i see  my consultant in November to see if there are any medication changes he can make

 

There is a lot of support to be had on this forum  and you are not alone on your journey with Mr P .


#3

Hi shelly65 I'm so sorry your family got hit with a double blow :( its a shame you haven't had access to a pd nurse yet. This is where I suddenly came to terms with what was happening. I know the stress of keeping on is difficult but please do as my pd nurse is fab and its worth pushing forward. Please keep in touch x


#4

Hi watermelon

Im not to worried about the PD nurse i will get to see her eventually   , i was in total awe the first few weeks felt so sorry for myself all the usual emotions why me etc etc  then one evening i had been out with my cousin and i was waiting for my bus home when i got talking to a gentleman   it turned out he was homeless and was waiting for the food wagon to come  and that made me sit down and realise no matter how much bad stuff i have going on and having to live with a dx of Parkinsons i still had a lot to be thankful for and that encounter made me start to concentrate on what i could do and not what i could not do , yes will def keep in touch   x