A day in the life.......

[carolineb211]

I was diagnosed with PD nearly two years ago. I remember vividly how I felt, all those fears and feelings rushing around in my head. I thought my life was about to change drastically and was expecting that I would have to give up work in a year or two as the disease rapidly destroyed my brain.

Well, two years later (nearly) the panic has gone to be replaced by a quiet acceptance. It has been a tough journey, with trying to come to terms with PD, struggling with medication, side effects and worsening symptoms.

I am now on drugs that work for me and thought I would share a day in my life, 2 years on.....

Friday

7.00am - get up, shower, breakfast, take requip, azilect, omeprazole and multi vitamins, get dressed and off to work

8.00- am at work (luckily just round the corner) look at E-mails, ring IT dep't to see if they have resolved my dragon software issue (the security systems and Dragon don't get on)

9.30 am - visit to see a child in reception with behaviour problems, OMG do teachers have no common sense ? write contact record on site with suggested strategies.

11.00 am - back in office for Team around the child (meeting for Autistic twins) their poor mum is struggling, discuss support for her. complete referrals for family support and the Educational psychologist.

12.30 - grab a sandwich whilst typing up reports.

1.00 pm. Child protection conference for a very troubled family, 4 children, all delayed, the baby, at three weeks old has been admitted to hospital twice already, why oh why are those children still with that family?.

3.00 pm - Chief executive briefing (yawn)

4.00 pm - home , cuppa (bliss)

5.00 pm pick Jack and Isaac ( my grandsons) up from a friend, play and go to the park with a football ( in between downpours).

6.30 Beth arrives to pick up boys ( she had a parent meeting at pre-school), have a chat then make a start on dinner.

7.00 - Husband home and for once, teenage son appears for dinner.( he is 19) clear up kitchen.

8.00 - sit down to watch Eastenders with a cup of tea( take Amitriptyline)

9.30 - I'm a celebrity, get me out of here, (whilst on laptop planning the training I have to deliver next week.)

10.30 Bed with my kindle for half an hour.

11.00 sleep

so as you can see, little has changed in my life since diagnosis. I am a bit more achy especially in the evening and first thing but it is not stopping me from living my life. I am lucky I only work term time so get very regular weeks off for school holidays which are a god send.

I would love to hear how other people spend their days.

[jillannf6]

nhi

great that u r still working AND SEEEM TO HAVE SOME ENERGY LEFT

lol jiLL

[AndyC]

Hi Caroline Unfortunately at moment I am unemployed so my days are taken up with job hunting ( I'm a support worker, I work with adults with Learning Difficulties ) I keep my hopes and spirits up that an opportunity will arise very soon....fingers crossed.

I'm either on my laptop looking for work or I visit the jobcentre

I do a few chores around the house....I have just recently moved in with Sue my girlfriend....and do any grocery shopping as needed

Oh and we have a dog "Tango" and he demands attention, playtime, walks etc....he's really taken to me and we are best pals, I love him to bits

Cannot wait to get back into the working environment though

Andy xx

[AndyC in reply to AndyC]

P.S. I was diagnosed with PD in Oct 2011 at age 49.......I find laughter is the best medicine.......well 8mg Ropinirole a day helps!! lol

[christinehulmes in reply to AndyC]

I was diagnosed with PD on October 30th this year (my son's birthday) and i am unlikely to forget. It was a shock but i am getting used to it now. I am not on medication at the moment but i am seeing my neurologist in January about the medication and to be truthfull i am dreading starting the medication as he has already told me about some bad side effects but that i would be prescribed some anti nausea meds as well! My tremor is getting worse and my sleep is also getting worse as well.

[christinehulmes in reply to AndyC]

Forgot to mention that i am 55 years old.

[carolineb211 in reply to AndyC]

Hope you find a job soon Andy. Must be very frustrating for you. I love my job and am dreading the day I have to stop working. That is what gets me up in the morning and keeps me going through the day.

[shasha]

my God how amazing are you -- i just wish i had PD and not PSP though --

love sha

[carolineb211 in reply to shasha]

I saw your post about the PSP. I am so sorry to hear that. I will keep my fingers crossed they find something that will help you soon. x

[shasha in reply to carolineb211]

thank you so much for your kindness

[wordworks2001]

Well, they say it takes less muscles to smile than it does to frown and since I am a lazy old fart to begin with, I find it much easier to go through life with a big grin on my face. Besides, that big grin makes me look crazy and when people think you are crazy they don't mess with you.

[Hidden]

This is why no matter what life brings we need to keep smiling

"Solitude," by Ella Wheeler Wilcox (1850 - 1919).

Laugh, and the world laughs with you:

Weep, and you weep alone;

For the sad old earth

Must borrow its mirth,

It has trouble enough of its own.

Sing, and the hills will answer;

Sigh, it is lost on the air;

The echoes bound

To a joyful sound,

But shrink from voicing care.

Rejoice, and men will seek you;

Grieve, and they turn and go;

They want full measure

Of all your pleasure,

But they do not want your woe.

Be glad, and your friends are many;

Be sad, and you lose them all;

There are none to decline

Your nectared wine,

But alone you must drink life's gall.

Feast, and your halls are crowded;

Fast, and the world goes by;

Succeed and give,

And it helps you live,

But it cannot help you die.

There is room in the halls of pleasure

For a long and lordly train;

But one by one

We must all file on

Through the narrow aisles of pain.

[christinehulmes in reply to Hidden]

Love the poem. I will keep a copy of it and when i feel low i shall get it out and read it again. Thank you.

[Hidden]

There is so much philosophical meaning in poetical words

often quite beutiful and sad all at the same time

[jonroberts]

This reminded me of my early years with PD working as an insurance trainer with New York Life. I was able to be productive for about 5 years. I was responsible for teaching and training agents in their first 3 years. Fatigue and rigidity finally forced me to file for disability. I thought I could last longer, but life has taken a different path for me to follow. Enjoy life while your symptoms are minimal. Don't be afraid of the meds, they will help you. The side effects come over time

[Bitbit]

thank you all for sharing. I was diagnosed 2 years ago as we'll, and still working .75 time as a nurse. I did have to take a desk job because I was unable to start ivs and I would drop people's pills a lot. All I take is Azilect and sometimes a sleeper because the insomnia is pretty terrible. I would encourage those of you with a new dx and mild symptoms to get on azilect ASAP. There is a theory that it is neuro protective, allowing us to hold onto those last stores of dopamine before they are all gone. I have no side effects from the azilect and it does definitely help me. I tried sinemet but could not keep it down, literally puking on the side of the road several times. I imagine I'll lose my job once the sinemet becomes necessary.