Telling colleagues at work about my PD!


#1

Hi, several months ago I decided to sit and write my PD story for my work newsletter which is published monthly. I felt the time had come to widen the number of colleagues who knew about me as there were increasingly times when my symptoms we kicking in during work time. 

The response has been brilliant and although I know that not everyone read it, those that did gave me some wonderful feedback and many admitted not realising the details of PD and/or even that it could affect someone as young as I was when I was diagnosed.

Anyway, here it is....sorry for the length of it...... I am very interested in reading your comments:

Parkinson’s and Me!!
You may already be aware that I have Early On-Onset Parkinson’s disease (PD). Thankfully my condition isn’t terminal, but its symptoms are debilitating and painful and can sometimes be embarrassing in that they are difficult to disguise! My PD is treated with a large regime of medication all of which have a number of side effects; these can be debilitating and unpleasant too and in many ways actually mirror the symptoms of Parkinsons. Fortunately my decline in health has been extremely slow so far and my Parkinson’s nurse assures me that there is no reason to believe that the pace will increase, however; the stage I have reached in the past year, is having a more significant effect on every aspect of my life; this has prompted me to share my story with you.

When & how did my symptoms start?

I think my childhood clumsiness and scuffing of my feet is probably relevant and almost certainly the instances of my limbs ‘freezing during repetitive movement in my early 20’s was one of my earliest symptoms. A self-conscious, busy teenager, I never mentioned this to anyone, I just made excuses to stop whatever I was doing and I certainly never really worried about it! The next PD symptom began in 1993 when I developed a tremor in my right arm and hand. I was 29 and was expecting my second Son; a fact which is purely coincidental. The Midwife thought it may be that my large baby was lying on a nerve but unfortunately it continued after Luke was born. When I eventually consulted my GP in 1994 he said it could be Benign Essential Tremor and prescribed Propranolol tablets; these amazingly completely controlled the shaking within a day of starting them, and the tablets were put on my repeat prescription and I thought that was it. Sadly though, on holiday in the summer of 1997 family members noticed that I was dragging one foot quite badly when I walked; something I was already aware of! On our return from holiday I was persuaded to go to the doctors to discuss my dragging foot and he decided to refer me to a Neurologist. I think I knew then that this wasn’t something that was simply going to go away although I tried to keep my fears to myself!
The long road to diagnosis!

The consultant did nothing to dispel the fear Rich and I felt as he explained my poor Neurological responses could be caused by some pretty scary conditions, one of which was Parkinson’s disease. Who knew then that the road to diagnosis would be 6 years? I’m glad I didn’t! I endured numerous blood tests, Electrode Treatment, Lumbar Punctures, MRI Scans as well as hospital stays one of which saw me started on a very low dose of Dopamine medication (PD sufferers do not produce enough Dopamine). The tablets helped significantly from the start but I felt completely spaced out for a week which was extremely frightening. After a couple of wrong diagnosis; Dopa Responsive Dystonia and Stiff Person’s Syndrome, I was referred in 2003 for a new type of scan called DAT. DAT is a radioactive scan of the Basal Ganglia in the brain which is the part which produces Dopamine. Scarily my scan identified an abnormality and finally I had a label; Early Onset Parkinson’s disease! The diagnosis didn’t really come as a surprise to me; over the years of testing I’d done a lot of reading about PD so I really just carried on doing what I was doing; that said the future is slightly scary so I deal with it by living for today and not dwelling too much on what’s ahead!
Medication & me!

Since I originally started on a tiny dose of Dopamine in 1997, my medication regime has grown beyond belief; thankfully though, there’s still room for more as I need them! When I started at TOMC in 2000 I was taking meds twice a day but these days I need topping up every 3-4 hours!  I dislike having to depend on my huge medication regime with its unpleasant side effects; these affect both my thought processes and behaviour. The trouble is that without them I’d be completely incapacitated! It’s impossible to define what are my PD symptoms and what are medication side effects these days, indeed there are lots of similarities. It’s even more impossible to define my actual personality traits as PD and the medication have such a strong influence. One example is that I’ve always been a bit of an obsessive compulsive character even before medication, but my OCD is more dominant nowadays! There are others such as paranoia and anxiety which I definitely suffer; I can’t remember either of these being present pre-PD but then my age could be a factor too!
My battle with accepting PD and its limitations!

From the start I’ve been determined to lead a completely ‘normal’ life and my life today is generally what you’d expect of a 50 something, happily married, working Mum of two grown up children. My very full life is enriched by my wonderfully supportive husband Richard and my two amazing sons, Daniel & Luke. I have a very close relationship with my parents who live nearby; Mum understands how important it is to me to continue working and having a social life  and she commits a large proportion of her time to helping me in practical ways around the house, for which I am eternally grateful!
I’m also lucky have a large and varied circle of friends without whom I’d be lost. All of my friends and family are having to consider my condition; Generally, I’m socialising less and annoyingly I’m increasingly forced to pull out of social arrangements through illness or tiredness; upsetting for me, but really irritating for others!
I’ve had to accept that I can’t run around all day without a break, I get too tired and my limbs and back become painful. Lack of sleep from both PD and the side effects of my medication have forced me to learn to pace myself and I’ve even learned to say No on occasion. That said accepting that my PD makes me different is difficult and I still haven’t completely come to terms with it; it’s a roller coaster journey of emotion and frustration and I still have some way to go before I reach complete acceptance but I’m getting there. I refuse to think ‘poor me’ and my usual positivity keeps me going on bad days!
Working & PD

In the past few years my health has been a factor in reducing both my hours and my level of responsibility and in request for a role away from the front line. This year, due to my unpredictable sleep pattern, I was forced to ask for a later start to my working day; starting at 10am has helped significantly and after years as an early bird, rising before 7am, I don’t often get up before 9am. Unfortunately I’ve seen a slight decline in my condition over the past year and this has started affecting me at work. Realising my limitations triggered some intense soul searching and I have realised that I have to stop trying to be the Lorraine who ignores her PD and fights to be ‘normal’ and be more accepting of my limitations; not easy at all! I am confident that I still have much to offer as a person, friend, employee or colleague although the rollercoaster of frustration and emotion mentioned above has shaken this confidence badly at times.
There may already have been a time when my behaviour wasn’t quite what you expected and if not, it may happen in the future. If I appear vague, slow or unhelpful please be assured, this isn’t me being intentionally difficult but PD and the meds affecting my response to you. My fatigue, foggy brain and poor memory have a lot to answer for and I hate asking for excuses to be made, however; I hope that by sharing my story with you I will understand what is happening to me.
There are also occasions when my PD manifests itself physically and unexpectedly for some reason which may not be apparent, my body reacts negatively and I experience what is described in PD as ‘off’ time. The symptoms of Bradykinesia and or Dystonia (described below) kick in. Over the past year I’ve noticed some symptoms becoming more frequent and I have the additional difficulty of pain from the stiffness now, especially if I sit for too long. My throat muscles have been affected causing swallowing difficulties with some food; consequently I have become self-conscious about eating in front of people. This is irreparable but the speech therapist I saw did suggest some coping mechanisms.
Other symptoms affecting me:
• Slowing down of my movements ‘Bradykinesia’ - feels like a weakness in my limbs making movement and co-ordination slow and heavy
• Slowing down of my memory and thought processes – affects my responses and behaviour.
• Fatigue - If I manage to sleep I am more stiff and painful in the morning, however; that is preferable to the washing machine brain and restless limbs of my frequent, sleepless nights and the fatigue that follows.
• Anxiety – a symptom of PD that also exacerbates my other symptoms such as Bradykinesia. I take medication for my anxiety which features strong palpitations and feelings of panic..
• Muscle spasms ‘Dystonia’ in one foot where it contracts much like a bad cramp! These are agony; I have to sit with my foot up in order for the muscle to relax. The spasm makes it impossible for me to walk.
• Stiffness and pain
• I’m more susceptible to infections and viruses due to my body having to constantly fight my PD.

Please believe that I don’t want you to feel sorry for me; I know that everybody has things in their lives that they have to deal with and there are far worse illnesses than PD, however; my condition may affect our working relationship and therefore your understanding and consideration of my position is invaluable to me.


Thank you for taking the time to read my story.


 


#2

 

Sounds much like me although i can no longer work , i'd have real difficulty thinking and putting all that together in some meaningful way that someone would understand.


#3

I love writing and always have done; thank goodness for computers though, I'd have taken forever to hand write it because my meds induced obsessiveness meant 100's of edits!!!