Bit scarey


#1

#2

Hi everyone, I have recently been diagnosed - went about something else to neurologist and mentioned doctor didn't like look of tremor in left thumb and there we have it! Still don't know whether the inner tingling sensation is anything to do with it or not.

I know it's early days but so many questions. More tests on Sunday.


#3

Hi traveller,

I too have a weird tingling inner feeling at times. I can only l liken mine to it feeling like a jelly wobbling. It happens at different times, for no particular reason and lasts for different lengths of time. I think it can be another symptom.

Since diagnosis last year I have learned that various niggling problems I had just ignored are actually PD related. I had suspected PD for a while but diagnosis was still a shock as I was hoping I was wrong.

This site is really good and the forum a good place to chat. After diagnosis I was warned not to google PD but to trust Parkinson's uk site. It was good advice and I'd add "don't read about PD just before bedtime."

Some well meaning people say silly things about PD. This site helps you get grounded again.

Daffy


#4

Hi Daffy, thanks. Yes about half the internet is full of 'rubbish' and you can read totally contradictory things about anything and everything.

I try not to think of it when bedtime comes, but usually it makes it's presence known more  then.

I am hoping to see a Parkinson's Nurse in the near future. I never actually suspected Parkinson's. I had problems with my thumb a few years ago and couldn't use it so asked to have a cortisone injection. Sometime since then my thumb started 'shaking' (which now sometimes affects my hand and arm) and I just thought it had touched a nerve or something like that and shrugged it off. But both doctor and neurologist knew differently.

I too now suspect that other things may not have been just 'getting older' or 'post menopausal'.

What worries me the most is the uncertainty of how it will progress.

Traveller


#5

Hi Traveller 

I'm Helen I was diagnosed in June having just retired from nursing I have read extensively on internet to my detriment have just started to come to terms with things I get lots of odd symptoms tingling jerking limbs all sorts I'm sure they are related to the disease. My biggest fear is dementia but as Daffy said on one of her posts no one  can predict our future health but take heart parkinsons by nature is usually according to the literature a SLOW progressing disease. I find this forum a big help so chin up and keep in touch. 

Helen 


#6

BTW traveller i blamed all my symptoms on the menopause. ...how wrong I was !!!!


#7

Hi traveller,

I too worry about the progression rate. I try to rationalise it by telling myself there's loads of other things I cannot predict about the future too but it doesn't always work. In fact I find that PD is never very far from my mind. So I end up trying to distract myself a bit with other things so that PD gets pushed back a bit from my immediate attention. Just having re read that it sounds daft but I can't think of another way to put it!

Worry, tiredness and stress, (all three very predominant in todays world) exacerbate my symptoms but I haven't found a way to permanently eradicate them yet! However since diagnosis, knowing why I have these symptoms does help me get them a bit more in perspective. As in "Why am I anxious/tired for no apparent reason? Oh yes it's that PD again"

Daffy


#8

Hi Helen, yes dementia is my fear! Every time something is mentioned about me being like 'so and so' (a person who has memory problems) I feel scared and upset. At the moment I'm in an 'upset' period and I know I'll get over it but it doesn't help. Every thing seems exacabated by the fact my husband is spina bifida and it is just another thing to cope with.

sorry I need to get that off my chest. Thanks.


#9

Hi Traveller,

Sorry to hear about your recent diagnosis and that you're feeling upset right now.

Please feel free to call our Helpline on 0808 800 0303 if you need any advice or just want to talk things through. We also have a useful section for people who have been newly diagnosed that you might find useful here: https://www.parkinsons.org.uk/information-and-support/newly-diagnosed-parkinsons

Best wishes,

Edwina

Moderation Team


#10

Hi again traveller sorry you are feeling so scared and upset at the moment it's a horrible feeling and one I'm very familiar with parkinsons is enough to deal with without any other problems. I try to think postive and do okay for a while and then I relapse and the dementia fear comes back. I get abit panicky and shaky when I get to bed at night don't know if anyone can identify with that. Anyway its good to be in touch with others with the same diagnosis.Keep  believing

Helen