Introducing myself


#1

Hello

I would like to introduce myself. I was diagnosed nearly 2 years ago in my mid 30s. For quite a long time before I had had difficulty writing & my (already small) writing got smaller but hadn't thought anything of it.

My hand started shaking in Dec 2012. I knew that wasn't normal. I went to my GP who referred me to a neurologist. It took until Oct that year to see the right specialist who diagnosed me straight away. During those months pre-diagnosis I started feeling extremely tired & just did not have my normal energy levels. I had all sorts of blood tests & scans. By the time I saw my consultant I just thought she was going to ask more questions, and say I needed more tests. What I wanted was someone to say 'This is what is wrong and this is how we will treat it.'  It was the last thing I thought would actually happen. Parkinson's Disease had never crossed my mind-I thought I was too young. I had the biggest shock but it was also a relief because at last there was an explanation. I started on Rasagiline and Ropinerole not long after.

I am so very lucky to have a brilliant specialist nurse. I also have very supportive family & friends and work have also been supportive. Yet I have still found it (and still do) so hard at times. It took me a year before I could say I was anywhere near truly accepting it or getting my head round it. There is always something new to get to grips with. For me recently, it is accepting that I need help, and accepting my limitations. I am learning to choose what to spend my energy on and when some things are really important I can push myself & it is worth it even though I feel exhausted afterwards.  I try to plan accordingly so I have time to rest. I cut my hours at work down to 4 days a week which really helps. I have good days and bad days,like everyone I guess.

Sorry for the long intro.

Any advice/experience on acceptance/learning to live with it would be welcome. Also any advice/experience from others who are working.

Thanks for reading!


#2

Hello My love,

I too was dx at 47 not as young as you but i still was a huge smack in the mouth I think it is like a bereavement pre pd and post pd your life changes but it is how you now manage things and i would say your doing what is right for you as we are all effected different. 

 

my advice is to join your local support group found on this website under support for you.

don't think they are all going to be in wheelchairs with advance PD as i did you could be pleasantly supervised and let me know how you go.

your new parky personal friend and guide ( if that suits ) BB (Karen)


#3

 

Hi,

I was and am much the same with the energy levels, afraid i'm not working though that went  early on although i am trying my best , working at being me, sitting here thinking about things it's much like driving a car, I have my hands on the steering wheel and the indicators of where i want too go, but Parky has its feet on the pedals Lol, now and then i get a boost of new fuel, but i have too accept it wont last. but while it does make hay while the sun shines.


#4

hi

i was diagnosed 6 years ago. still working 9 to 3 , 5  days a week. everyone is different, so do what you can, though i would suggest jump at levodopa when it is offered.

cheers


#5

I agree with Turnip Levodopa is about the best med's going for PD ( that is in my personal view point) and the longer you go without meds the harder it becomes to control your symptoms as the condition progresses.

I am definitely of the Gimmee the Drugs school of thought!!!!!!!!!!!!!!!!!!

 

BB


#6

Thank you all for replying so quickly and for your advice. I really appreciate it.


#7

I was diagnosed at age 42 and have just stopped working aged 55 - its all getting too much for me now.  I am still mentally capable, I just get soooooo tired and anxious which makes my symptoms far worse.

Since being on sick leave, I have had time to relax and lessen the symptoms.

My advice would be to keep working as long as you feel able, but dont keep going when you really arent able.  I should have given up a year ago, but left it till I was depressed, emotional and very stiff before finally giving in.

Agree about the meds - they make life so much more comfortable and bearable.Dont know what I would be like without them, although I have never liked taking drugs, but needs must.

Listen to your body - you know how you feel and what you can cope with, just make sure you are entirely selfish about your decision.  Its your future and your life.  Finance is always an issue, but I am a firm believer that you live within your means.  Money has been tight, but we are managing just fine.

Keep smiling, keep positive.  

 


#8

I totally agree with OxfordGills you have to be quite strict with your self and make the decision that is right for you.

Although I am back in the land of the employed I have only taken on a sit down office job eight hrs per week and the premises is about 30 steps away from my home. I could some weeks do more but that will be totally decided on my needs first and my new boss is cool with that.

 

Stay safe and look after yourself first then look after those that are dear to you all.

 

BB xx


#9

Hi Butterfly Lily,

Thanks for sharing your story.  I have only been diagnosed recently and found writing an introduction helpful and the responses very positive.  It is a comfort to know that we are not alone.  

Wondering how long an introduction should be was something I struggled with, you want to keep it informative yet fear too much may cause information overload.  I think you got it about right, though what do I know I'm new around here.

I see you are on the same medication as me, do they work for you?  I haven't noticed any improvement 

so, have yet to experience the on/off affect.   I have been on 1mg of rasagiline since June and 8mg of Ropinirole for the last 6 weeks I guess they may take time to kick in.  

 

Keep positive.

 


#10

Thank you OxfordGills! I am glad to hear you have been able to relax and lessen your symptoms. I am a bit of a worrier and I have definitely found stress makes my symptoms so much worse. I'm trying out meditation and other things that help me relax. I feel like there will always be things in life which have potential to make me anxious so I need to find ways of coping better and not getting as anxious. Easier said than done but I am working on it.

I have also never liked taking medicines, but like you say, needs must.

Thank you so much for your kind words and advice. It really helps.


#11

Thank so much for all your kind and wise words and advice BB. I really appreciate it. I wish you well with your new job! It's great your new boss is supportive.

 


#12

Thank you for your reply Wood Machinist. I am new to this online forum business and I wasn't sure what to say and what to expect, but you and everyone else have been really supportive. Thank you! I must admit I never thought the first online forum I joined would be Parkinson's!

When I started my meds I noticed small improvements - for e.g. before I couldn't wave, but then one day after taking the rasagiline for a little while I got very excited when I could wave again! It was tricky getting the right dose of ropinirole and did take a little while. Also stress makes all my symptoms worse so when I went through an extremely stressful period at work, I did increase my dose (via my nurse). I've been on the same dose for a while, but very recently saw my nurse and my hand has got gradually worse, so am currently also trying madopar (lepodova) (on a small dosage as a rescue remedy when I need it). It definitely is making a difference, but it isn't significant - it's small things. I am seeing nurse again soon so may increase dosage. My advice would be to keep persevering with the meds - talk to your nurse/consultant - it does take time to get the right dosage.

Oh, and physio also helped me - so it may be worth asking to be referred to a physio if you can. I was compensating with my left hand, and once I was aware and made an effort, it got easier to make myself use my right hand - even though my brain wants to use the left hand because it's easier. The exercises help - though I must admit I go through phases of doing them.

Getting the diagnosis is hard and it took me a long time to accept it. I hope you have supportive family and friends to help you. Also I found talking to other people/friends with long term conditions helpful, even though it's not the same, there are lots of similarities. I guess I wasn't ready to join this forum until now, but now I have, I am glad I did.

I hope the meds start working for you very soon.

You too, keep positive.

Sorry, it's a bit of an essay - once I start...

 

 


#13

No problem - I have found it very helpful to look at the forums and find that others are experiencing the same symptoms as me.

I have felt really supported by members on this site - no one judges you .


#14

to judge you we also judge ourselves we are all linked with this condition so must be un judgmental to all unless we actually know better.

any questions re our condition I am more than happy to help.

 

BB


#15

You are very welcome.  Relieving stress is so important, but so difficult when we all lead such busy lives.

I find it very difficult to sit and do nothing, I can always see something that needs my attention.  The trouble is it will still be there tomorrow and thats what I have to convince myself.

If you can find time to relax and clear your mind as often as you can I am sure it will help - listen to music, talking books etc. as they can stop you thinking too hard about things.

Keep positive.


#16

Thank you BB and OxfordGills. I am really glad I joined forum - it's been really helpful already and I only joined a few days ago!


#17

Hi Butterfly Lily,

Thank you for your response, it's good to know these drugs can make a difference.  

I guess that I am getting a little anxious as I work at a University and will be teaching in a couple of weeks from now.   My job is very skill based, practical and unfortunately my hands will be very much on display for general scrutiny.   I am hoping to be able to deliver at the same level without having episodes of tremor that could make me look like a nervous wreck and may not inspire confidence.  

I think it will be an interesting time as I will soon find out how well I cope with student demands, my energy levels and trying not to get laden with stress from all angles.

I have had some physio however my job is physical and I spend the best part of the day on my feet, so remain very active if a little slower and with a limp. Standing or perching for me is more comfortable than sitting, and I do feel better doing things, if I try taking it easy at the weekend I tend to feel worse.  I suppose I have never been great at staying still (oh the irony).

My friends and family are supportive and I am slowly getting into this internet thing of forums, twitter etc as a new form of communication to the outside world.  Sometimes it can take me days to respond to a text message, so if you experience a delay it's not you it's me.  My family have got used to the fact that text messaging me is not always that effective.

I hope this does not read as cry for help or unduly negative, its just me trying to be honest and painting a picture.  I really feel that you have to test yourself against the symptoms to find out what your up against.  

So into battle, wish me luck.

 

 

 


#18

Hi Wood machinist,

I'm glad to hear that you're getting support from your family and friends. If you continue to feel anxious and would like some more advice or to chat please feel free to call our Helpline on 0808 800 0303. We're open from Monday-Friday: 9am-7pm and Saturday: 10am-2pm.

Take care,

Edwina

Moderation Team.


#19
Hi Wood machinist Thinking of you and wishing you all the best for when you start teaching again. Hope the meds kick in and start to help you soon. Easier said than done, but anything you can do which helps you to relax and feel less anxious will help with your symptoms. I wish there was something I could say or do help. Good luck! Butterfly lily

#20

hi bl and wm,

kind words mean a lot to pwp this forum not only supports others but it supports us as well.