Nice to meet you, to meet you......!


#1
Hi everyone
I'm a 53 year old (in body, but not in mind) mother, wife and PWP. I was diagnosed 2 years ago (is it really two years already?) having gone to see the neurologist convinced that the tremor in my left side and stiffness in my neck and shoulders was all caused by the stress of having the house remodelled around us over two years and that living with the builders had just taken its toll. The three words that ran through my mind when he gave me my diagnosis began with S, F and B!!! So convinced was I that it was nothing serious that I'd gone along by myself to see him - BIG mistake! I then caught a train up to Yorkshire (I live in Stroud in Gloucestershire) to catch up with my husband who'd driven up two days previously to join friends and spent the journey texting friends and family along the lines of "oh bugger - it's Parkinson's". I didn't break down until I was getting ready for bed that night, then the tears came. And that was it - I've only had two occasions since when I've had a little cry. It's just a case of "I can do nothing about this, so I'd better just accept it and get on with it". It took me a month to get through the denial phase and to finally accept the diagnosis but now it's just part of my life. I class myself as lucky, because my symptons are relatively mild - the aforementioned tremor and stiffness. I am gradually losing the dexterity in my left hand and the only concession I make to my condition is to go to the hairdressers every week to have my hair washed and blow dried as I struggle to do it myself - but I'm not complaining about that! Also, typing takes a bit longer as, not only am I slower, but I end up with two or three a's, s's and d's as the tremor kicks in and hits the letters several times for me so a lot of backtracking and correcting goes on.

Thinking back, my first symptom was the loss of sense of smell, but only bad smells. I can still smell the roses, but not the manure around them! This comes in really handy when the dog is being antisocial. It also came into its own when the freezer packed up while we were away and we returned to a rancid soup in the bottom of it. My husband gagged and retched as he started to clean it up, but I merrily stuck my head down into the bottom of it and baled it out with no problems!

I tell everyone about my Parkinson's - nothing to be ashamed of after all - especially when I'm fumbling in my purse trying to pick out the correct change and we have plenty of laughs at my expense. I've heard all the jokes and the suggestions for jobs - cocktail maker (shaken not stirred) to Shake & Vac triallist! I also shake a mean collecting tin!

My other major symptom is apathy. I just can't be bothered to do anything - probably why it's taken me so long to write this. But when I can get off my backside I love to walk and find that using two walking poles is very beneficial as they make me use my arms as well.

I've already decided that I'm not going to get any worse and have a very positive mental attitude. I try not to use it as an excuse to not do something, although admit I have pulled the 'too tired' card every now and then. I guess what I'm saying is you can't do anything about this blasted disease so just get on with life and don't let it get you down.

If you haven't fallen asleep by now, then thank you for reading and bye bye for now.
Jane

#2
Hi..I'm newly diagnosed at 47 years of age. Loved reading your post! Inspiring..me I struggle some days accepting but try to be positive. Keep the positive attitude! Vanessa

#3
that's the way :grin:

don't ruin today fretting about what may never happen

Peter

#4
Hello janech and a warm welcome.

Always remember
The pessimist looks at his glass and says it's half empty:disappointed:

The optimist looks at it and says it's half full:smile:

#5
Hi Janech,

Welcome. Lots of encouragement and practical advice to had here. Looks as if you have coped as well as can be expected. Like you, I had something (car crash/whiplash) nine months before to blame and went on my own to the neuro.
Lack of motivation is a parkinson symptom to do with the levels of dopamine. I had it before dx and meds but it usually took the form of a day of complete idleness, apart from feeding myself and then I would wake up next day and get on with things more or less normally.

#6
Hi Janech

Welcome great to read your post like your attitude to diagnosis x
Was interested to read that you live in Stroud we live not far from you Brockworth.
My o/h was diagnosed nearly 10 years ago at 43, I would be dishonest in not saying it has been a roller coaster more lows than highs but we do still remain positive and do try and live life to the full.

Not sure if we are allowed to name Neurologist or PD nurse by name but really can't complain in fact they are both very supportive, hope you have the same experience.

Take care x

#7
Welcome Janech
thanks for your inspiring story. I hope youfind the forum as supportive as I do

Elegant Fowl

#8
Hi Jane and welcome!

I enjoyed your story and love your attitude towards life with PD.

Gill.x

#9
Hi there, your positive attitude is the only way forward, its working for me so keep it up.

Craa:grin:

#10
Thank you all for your kind welcome, thoughts and comments.

Bubble - mine are Geraint and Claire - both very approachable. EileenPatricia - yes, I'd go with idleness but I think apathy makes me sound slightly less lazy!

Having had a couple of months on Selegeline with absolutely no impact at all, I start Ropinirole next week. As I had bad nausea when I started the Selegeline, the doctor has prescribed me Domperidone as an anti nausea drug, or, as I like to call it, Dom Perignon!!! The side effects of Ropinirole sound a lot more exciting than those of Selegeline and whilst I'm hoping for the obsessive shopping, my husband is banking on hypersexuality - in his dreams!!!! I'll keep you all informed.

Kind thoughts and best wishes to you all
Jane x

#11
What a very honest and positive lady you are Janech.
You sound a super lady,I to am new to the forum and am a carer for my Father.
Good on you!!!!!!

#12
Hi janech

I have only just read you post, so not sure where I have been?

welcome to the forum. Well done for having a positive attitude and a sense of humour, it helps you get through the day.
I was dx at 48 and that was 5 ears ago, still work, however that is getting harder, but not giving in.

Hope to see you around the forum. All the best PB x