Diagnosis 5 days ago

#1

Hi! I was diagnosed 5 days ago! I have never written on any forum before but thought this would be a good time to give it a go! 

I have spent some time trying to hide my tremor and trying to work faster at work to keep up. 

Now several people in my life think they have made the wrong diagnosis because they themselves haven't seen my tremor. I know exactly what positions to put my hand into to set off my tremor, but i'm not a performing seal. Do I really have to prove I have parkinson's to people?

I could give them an arm swing demo or maybe tell them about my bladder and bowel problems.

I've got it! I will give them a staring competition!!

I choose to be brave and positive when i had the diagnosis from a specialist and i was, but when i'm treated like a hypochondriac, it takes away my gusto and makes me even doubt the diagnosis!

Sorry for being stroppy! I guess it is just part of a whole range of emotions and doubts I will feel for a little while!

Karen

 

 

 

#2

Hi Karen

I was diagnosed 3 years ago and like you I tried so hard to hide my tremors. I worked so hard to keep up with the work. Now three years on i feel i cant do it anymore.Dont think  i  will be able to return to work.

I am In process of having meds changed.

People who treat you like this are not friends.True friends will be there for you.I hope it all works out for you. Enjoy your life  and try to keep doing all the things you already do.

Take Care xx

#3

Hi Karen

How awful for you to be treated like this. You do not HAve to justify your diagnosis to anyone, in any case not all people have a tremor with parkinsons so they are misinformed.  Like yourself and g.g tried to hide my tremor but nothing to be ashamed of just takes some getting used to.  If This is happening at work can you speak to a boss, union rep, HR, ? it sounds to me  like bullying in the workplace or discrimination against you. should this be happening outside work consider if you want such negative people in your life , you have had a diagnosis which for the moment is enough to cope with, you need supportive people in your life right now.  Work out what you need and say goodbye to the people  you no longer need in your life. There is always someone to help you on this site remember that, you are not facing this alone.  there is a helpline number so you can talk to someone on the phone about this too.  take care of yourself xx

#4

G.G hope you are ok, and the review of your meds makes you feel better.  We ought to start a night owl thread to chat on !, xx

#5
KJ, Its sad that some people think they can diagnose you just by looking at you. We have enough on our minds just getting on with life never mind listening to negativity. Ignore these people and concentrate on getting used to your diagnosis and surrounding yourself with friends and professional support.
#6

Thank you for for your supportive replies! It really does help!

I don't think anybody means to make things more difficult for me. It just does make it harder to come to terms with my diagnosis when some people think they know more than a consultant that specialises in movement disorders!

I think the main problem is that there is so much ignorance surrounding Parkinsons

I am sure I will  have many down days but plan to have a positive approach and focus on what I can do while I can. I am going to book a horse riding lesson next week. Always wanted to learn to ride!

#7
That's a great attitude to have K. J. I truly believe that a positive attitude helps. It's not always possible but I give it a good go. I think you are right that people don't mean to be rude but their ignorance can make it harder. Good luck with the horse riding!
#8

Hi karen

i struggled when first diagnosed and due to certain comments began to doubt the consultant had got the diagnosis right. Those comments caused me so many problems mentally and now after talking on the forum I've found that so many folk have varying degrees of symptoms. This has helped me cope and accept things more if you know what I mean. I know people maybe say things because they don't understand but they don't realise the harm those words do. Always good support on here from caring and understanding folk. 

All the best,

sue x

#9

The support is appreciated!

 

#10

Well I have booked my first riding lesson for next Tuesday! I will let you all know how I get on.

That is if I can get on! Hopefully it will be a tolerant horse!:)

Karen x

#11

Have a great time with your first lesson. They usually start novice riders off with a not so fiesty horsey so you should be ok :-)

Joanie x

#12

Thanks Joanie x

#13
Hi KJ.... Its my hubby who has PD diagnosed 6months ago. Tremors badly in right hand and arm also lower jaw.Has very good days and not so good days. He hides it well from work colleagues and friends,sits on his hand and bites the inside of his mouth when around people or out of his comfort zone. Only one who sees the down side of it is me. We have also found lots of ignorance around PD. "Friends" say he looks ok and are we sure he has actually got PD? I am sure they disbelieve me,if only they knew! Its the people I thought would be there for us that I feel let us down and the listening ear and hugs have come from the most unexpected people. We have found that people are busy being busy....if you know what I mean? I dont think PD is reconised by most people as a life changing disease.....its not got a lot of publicity about it really.This is what leads to ignorance by people... We have good days,my hubbys are physical good days and my days are more emotional type days... But the thing that keeps us going are that we have each other and our Sons...plus we all have an amazing sense of humour... Our Grandsons were playing sleeping lions and our eldest Grandson whos 7,wouldnt let Grandad play ..."its not fair cos Grandad will be out first cos hes always shaking " out if the mouths of babes.....xxxx
#14

I think the principal problem is that people expect you to look the part---I`m not even sure what that is! I was diagnosed 2 years ago after years of symptoms. I don`t talk about it much, and people don`t stop to think that I have a disabling disease, because it`s not, although one day it might be.

Live your life, and enjoy what you can. There are worse things!

Frances

#15

It seems we all have different backgrounds, different sets of symptoms and are at different stages in the journey but we all face similar difficulties with ignorance.

I took a career break from being a  hospital pharmacy technician in July 2015 to become a foster carer to two boys. I have since returned to work part time, just working two days a week. I have a resting tremor in my right hand and I also tremor if I'm holding something like a mug of coffee. In the pharmacy my hand is rarely resting and by holding the top of a mug with the other hand that tremor is easily disguised. I find i am slightly slower typing, writing, labelling and even thinking which all adds up. Although frustrated, I had put it down to being out of practise. 

The people I have worked with for years treat me with respect but i find newer members of staff see me as lazy and think they're better than me. When I consider the patience I showed in training them, It is very annoying. There are lots of other unseen symptoms such as bladder problems, restless legs, kicking out in my sleep, finding it hard to get going in the morning etc.

So I am at the very beginning of my journey with PD. I can function pretty much as before but from my perspective I am working somewhat harder but from a few of my colleagues' perspective I am a bit of a  dead weight that has just been given an excuse and they cannot see anything wrong with me.

I think it is only the people you live with that see the reality of it. Though my poor husband did not see this diagnosis coming and I really think it has hit him harder than me!

I can make bold and positive statements such "this won't stop me" but he would feel like he is being insensitive and doesn't know what to say. At the end of the day I know he's there for me! My three kids have also been brill!

Like me, your husband clearly has the love and support of the whole family and as for 7 year olds. It is my 7 year old foster child that highlighted the problem to me. He would keep saying "Karen! your hand is shaking again!" and when i was walking down stairs one morning, a little stiff and awkwardly,. I said to him flippantly that my body wasn't working this morning His reply was "you do know you say that a lot". I hadn't realised!

and on the evening of  my diagnosis when he knew i had an appointment about my shaky hand, he suddenly said "Karen! you didn't tell me how you got on at your appointment this morning!" bless him

#16

I completely agree with you Frances! Even my mum says "but you look so well" I have explained that there is no reason why i shouldn't. At least I know her doubts are for genuine reasons. she just doesn't want to believe it! She also thinks i should be looking after myself rather than having a riding lesson. I have tried explaining that it is looking after myself! 

Karen

#17

Do yourself a favour and go and live life to the full!

Old school Neuro's generally like to save the 'Blue Riband' Sinemet meds until later stages of PD with low doses too. The younger guns prefer to get you on Sinemet ASAP, so that you can be more mobile and live a more product life albeit a shorter one. Its a tough choice. Live a rather dull life but not much risk OR throw caution to the wind (especially if they've popped Dopamine Agonist's into your medication regime as well) and have ball!  

Beware the last option though........having a ball comes at a price!!

Pokermid...................Had PD for 20 years and probably took the wrong fork in the road.......shyte happens eh? eek

 

#18
Hi Karen, I think it's true that our partners can take it hard. They can see you slowing up when you can't. I sometimes think I'm doing things normally when one of my sons will try take over. Then I realise I've been attempting the act for a while. Kids are very honest and it's refreshing. I think for me the fatigue comes in when I over do it. The brain is working overtime just to get the task done. But like the horse riding, doing something you like and for yourself is so good for your mental state.
#19
Hi Karen, I think it's true that our partners can take it hard. They can see you slowing up when you can't. I sometimes think I'm doing things normally when one of my sons will try take over. Then I realise I've been attempting the act for a while. Kids are very honest and it's refreshing. I think for me the fatigue comes in when I over do it. The brain is working overtime just to get the task done. But like the horse riding, doing something you like and for yourself is so good for your mental state.
#20

Hi Pokermid

Does sinemet actually shorten your life? I thought it prolonged it.

Karen