Nervous newcomer


#1
Hi there!
I surprisingly nervous about writing my first message. I was diagnosed in May last year and have spent much of the year trying to work out what this will mean to my life and future. So far not too bad. Perhaps the side effects of Requip is the most challenging so far.

I am just looking for people who share this experience.Perhaps get advice from those that know. It is all a bit overwhelming at the moment.

Looking forward to future communications with you all.

#2
Hi Mayhem and a warm welcome to the forum. I was dx about 7 years ago, I'm 46 now and I vividly remember the period after diagnosis when I struggled to work out what it all meant. It took me a lot longer than you to get round to coming here.
You will find people here who can answer your questions about any aspect of life with Parkinson's.
Make yourself at home here - you will find someone or other online pretty much 24/7 either because they keep silly hours (like me) or because they are in australia.

Elegant Fowl

#3
Hi Mayhem..

... think the name says it all!! .. but a warm welcome - like you, I initially hesitated but, for all of us, this is the 'place to be'.. You will find so much understanding, empathy... and often pure common sense.. You can come at any time (looks like you, like me, are a bit of a 'night owl' - part of having PD apparently).. and someone will be around..

Maybe a little about me.. so often I've found that helpful as then I don't feel "alone".. I'm David, now 66, retired College Bursar (hence the Forum name).. lovely wife and two youngsters in their 30'a now.. I was diag. Jan'y 2011 thanks to the persistence of a good GP - was "euphoric" at first 'cos knew something hadn't been right, but now had a name for it - 36 hours later, euphoria was all gone and absolute panic took it's place.. My manifestations are not the tremor type, but stiffness, slowness left hand side.. sometimes "tight" chest/abdomen..bit of a droopy eyelid when I get tired... and a bit of the old anxiety.. Meds are Pramipexole (Mirapexin) and Azilect. Used to run/jog - used to take my 'gear' on holiday, so "literally" jogged all over the world.. also used to play piano.. Neither of these happen any more but do go to the gym five days
a week (weights, treadmill, rower and swimming) and have bought electronic keyboard with one finger auto-accompaniment (so there are ways!)..

It took me a little while to come to terms... worried loads, cried, fretted, always looking for signs of degeneration - but meds/exercise seem to keep me where I'm at (but some days easier than others).. I was never any good at "thinking positive", Olympic gold for fretting),but I'm learning to do it... and it does work!!

Better not take up too much more page space.. but again, welcome.. please keep in touch... come here when it's good... but come here when it's bad.. we're all here for one another (and don't fret - if you are worried, the HelpLine Team are absolutely brilliant and lovely - and often a 'live' chat with one of them works wonders..

Take care... 'till next time... bursardavid.

#4
Hello Mayhem and welcome,

There is no need to be nervous, although I do understand. I think it may be something to do with putting down in print for yourself & others to see that you have pd?

I was dx just over 3 years ago. Like BursarDavid I felt huge relief as I had been certain for some time that something was amiss.. Now I thought, in my innocence & ignorance , there will be pills & I will feel better.

Like yourself I found the side effects of Requip difficult. But these will either settle down or can be addressed. Keep in touch with your PDnurse (if you have one), your GP, and do not be afraid to ask advice from the PUK helpline. A nurse will 'phone you back Their patience & understanding is 2nd to none.

I will not do you the disservice of saying that having pd is a bundle of laughs. It has it's difficulties (does not everything?), but with help & support these can be managed. And life can still be enjoyed.

I trust that you will find as much support & advice fron being a member of this forum as I have done

I wish you the very best
AB

#5
To all you lovely people who welcomed me I thankyou. It is so nice to know you have a link to people actually experiencing similar things.

A little about myself. I was dx May 2011. It came as a shock although with hindsight there were clues. It was not until the left hand tremor that the doctors put 2 x 2 together. I try to think positive and deal with one day at a time.

I am an actor and have been for nearly 40 years. Not famous but occassionally working. I hope the PD won't get in the way. At the moment it is a hand tremor which makes guitar playing slightly harder. (I was never Jimi Hendrix anyway) Other than that, sleep problems and dizziness, its not too bad so far. I have two beautiful very supportive children 24 & 19 still at home. They make it all seem so normal.

I have loads of questions spinning about in my head but I am not sure which are important or even useful. But I will start with one on supplements. I keep fit with regular excersise and loads of walking. I have noticed that muscles and joints are starting to ache a bit and take longer to recover. Anyone any thoughts on taking omega oils and glucosamine. I am a vege so I do put a lot of thought into my diet and some things are tricky without supplements. Do supplements clash with the PD medication does anyone know?

Thanks in advance for any thoughts on the subject and any advice.

#6
Welcome

Like all of us. you'll find PD a bit all-encompassing and difficult to define. It is hard to sort out the difference between what symptoms are the disease itself, the side effect of any drugs you take or the simple fact that you are getting older and things change over time.

PD is often blamed for a myriad of problems that are possibly not connected to the disease itself.

For clarity, I found it useful to keep a diary, listing you feeling that day. At least then you have a chance of tracking how you are doing.

Also, ask a partner, friend or relative to 'keep an eye' on you. This includes your health, your relationships and also your financial and legal dealings. Some of our members have had issues that can be devastating. Make a pact with them.

Best wishes for the future

#7
Hello Mayhem and welcome.

You just reminded me of when I was diagnosed. Unlike some others it was not a relief as it came as a shock. I thought it was a trapped nerve!!!!!!!

After the Neuro said those words "you have Parkinson's disease" I burst in to tears.

As my husband and I walked through the shopping centre afterwards, all I could think of was what he had said, over and over and over again.

The day of Dx I went straight on line, needing the comfort of someone who would understand what I was feeling and I found them here :grin:

Well, life goes on. Still working, still me, still Mum, Wife, chief cook and bottle washer !!. Overall, life is very good, bit different but in some ways better.
Husband does more to help, takes me on holidays and even does the food shop (i hate food shopping).

Good luck and try to remember Parkinson's will take over your whole life if you let it. You are the same person so just be you, enjoy life because it is the only one you will have !!!!.

#8
Hello Mayhem,

Welcome to the forum, as you see everyone is very friendly and you will gets lots of support and plenty of encouragement from fellow members.
My husband has had parkinson's for thirty years and his was diagnosed when he was in his late thirties so we have been through many situations over that time, but everyone is different so be prepared for taking a slightly different path in life than you had perhaps planned at some stage, but there is still lots of life to enjoy. Its not the diagnoses but the managment of the drugs that makes all the difference in coping with this condition.
my very best wishes and good luck
vivian

#9
Dear Mayhem I know post dx can feel like mayhem I have been dx for 4yrs and have sort of leanrt to live with it:grin: I too have 2 beautiful kids 20yrs and 24yrs my eldest is a photographer so art in both families! I also take requip which can cause impulsive responses be careful take care an love your life!

#10
Hi and welcome
I am also veggie and take supplements which I believe help but I'm not on meds yet. If you can find a naturopath to consult they should be able to advise you, probaly after analysing a blood sample and having a good chat with you.

#11
Hi Mayhem welcome to the forum, reading your post brings back thoughts of my own diagnosis. After years of suffering from a variety of ailments and two years of tests that day in Aug 2009 was a mix of panic, shock and relief! It felt like the end of my world (my life as it was), but like others have said relief at having a name for what was wrong with me! The first question i asked through floods of tears was 'will i be able to drink alcohol on the meds'?! i know how strange this sounds (i'm not a big drinker) but it was the first thing to come into my head!

Nearly three years on life is good, of course its different and i have off days but im still the same person inside. My husband and children (23 & 25) just treat me the same as before. Having pd does have its advantages tho - when the lawn needs cutting, dish washer needs emptying or theres a big pile of ironing!


Maybe im lucky but seem to be stable for now (fingers crossed))
I hope you find the forum as helpful as i do,

Take care

Big C

#12
Gosh I am overwhelmed by the support everyone is showing. It is good to hear positive things from people with PD. I no longer feel so frightened going forward.
[u]Big C[/u] I must say I asked that same question when they gave me the prescription and like you I am not even much of a drinker. At first it all felt so desperate like everything good had come to an end. Feeling less anxious now.

Does anyone else get dizzy spells. I often feel like I am drunk, even though I have not been drinking. PD nurse said it is not uncommon with the condition. But has anyone found anyway of minnimizing the effect. I am only on Requip XL and take no other meds. My blood pressure is good.

#13
Hi Mayhem,

Do you mean dizzy as in dizzy and nauseous or dizzy as in what I call a funny turn? As I understand it takes 300 odd muscles working in balance to keep normal posture and there can be a momentary blip. Balance problems are part of PD and as in many symptoms of PD it varies according to the individual. I have had split second "what was that"'s which come together and then nothing for months.

#14
the simple answer to that is yes!!

dizziness was one of my first symptoms and a year on from diagnosis I still have it.

some days are better than others but I always have a level of fuzziness in my head that none of the medication has managed to address. So far

Tried mirapexin, I thought I was dying!!!. Then I tried Requip got some very interesting symptoms which included sleep paralysis, hearing voices and some very pretty sparkly vision accompanied by a stonking headache.

I am now on neupro patches, but too early to decide whether they are making a difference As I am on such a low dose as we titrate up.

I live in hope that we may stumble across some drug or another that doesn't cause me to suffer all these side-effects.

I do have every sympathy though, living with dizziness is not easy, but it can be done. Still, work full time, although some days are easier than others.

I remember AnneBernadette suggesting to me once to drink plenty as that helped her so maybe worth a try?

#15
Hi Mayhem, a warm welcome to the forum. I had dx confirmed 16th April (1st day of PD awareness week 2012) guess this will always stick in my mind. Since then I have read most posts on the forum and am amazed at the level of support found here.
However for me to get my head around things I am attending the local PD support group in Aberdeen tomorrow - need to meet others to get it all in perspective.
Like you I am only on Requip XL, I also have a fuzzy head but I find drinking plenty of fluids help but coffee makes it worse, I also have nearly constant nausea Ginger nuts help especially if dunked in tea!!
Hope to see you around the forum and wish you well on your PD journey hope you have few side effects of med.
I am 51 and work full time as a Senior Charge Nurse - but have had no real dealings with patients with this disease so real learning curve for me and husband.

#16
The dizzy spells are worse in the mornings shortly after taking Requip. I don't feel sick only very light headed. Sometimes it affects my ability to focus my eyes properly. But that may also be lack of sleep. oh well I will just have to learn to live with them.

I should probably stop worrying. I just don't want to start blaming every minor itch and scratch on PD.

Forward with positivity.:grin:

#17
Yes as they say onwards and upwards :smile:
I found taking Requip with breakfast not the best, spoke to PD nurse who suggested moving the time forward by hour daily, I now take it at lunch time which seems to suit me better seem to be sleeping better so thats a big boost.
:grin:

#18
Hi mayhem....love the name!
I was Dx in march 2011. It was a shock but had had symptoms for nearly 2 yrs......never entered my head I could have PD.
I take mirapex 1.5 mg and azilect 1mg and amantadine 100mg twice a day. It's been trial and error but have things under control. I am beginning to get problems with balance and freezing but generally managing pretty well.
Don't let it define you....you are still the same person you were before you heard the dreaded words.

I have become much more spontaneous and really do make the most of everyday.

Good luck
Matilda