A DUTY TO TELL

LIFE WITH PD

I had written this piece, prior to reading my friends blog,what stands out for me is his comment about our duty to let people know,we have PD .Its difficult for us because drugs give us magical powers.They enable us to live in two worlds those being normality and disability,this adds to our problems in many respects.

The turning point for me began,the day I was able to say,I have Parkinsons Disease,first to myself and then to the world.

Reaching that point took several years,but thats the moment when my health improved and I began living with MyParkinsons.

Myself and my friend were once upon a time YOPAS, younger people with PD,We were diagnosed at a similar time longer than either of us care to admit these days,were Veterans in PD terms

I shared a cab ride home with my friend just a few months ago,he told our driver that he had PD,a defining moment after so long with an illness, yes it was the first time he had told anyone he had PD a defining moment I think it was.I cant remember that moment for myself but its a tragedy that we delay it but a natural response to isolate ourselves and medications facilitates the pretence

Duty cant be forced but hiding it can be a farce The ability to tel comes with time.

I’m Fine my friends blog

Walking down my local high street last Tuesday, on autopilot, lost deep in thought on some earth shattering subject like the scandalous state of potholes versus the whacking great local authority’s pensions bill, both funded by my Council Tax payments, I was oblivious to the world and to the individuals sharing my bit of pavement.

“Hi there! How’s it going?” asked a voice above the traffic noise, words that started my exit from my inner world. A good slap on the shoulder hastened the exit.

“Fine,” my subconscious replied out loud on my behalf.

I became aware of my assailment’s identity as Wee Jim the Painter, who, without the slightest invitation from me to go beyond the initial exchanges of greetings, proceeded to monologue on all the people scrounging from the state. He included such low life like the unemployed (me), the disabled (me), and the English (me). Paranoia was starting to take hold of me.

As I stood there not listening to Wee Jim, I pondered on the word fine. “How’s it going?” or “How are you today?” or similar questions are always answered by me as “Fine!” or, if I’m in playful mood, I drag out the syllables of “Fan-tas-tic!”

Last Tuesday I was far from fan-tas-tic, things were not going well and to reply to Wee Jim’s greeting as “Fine!” was nothing short of a lie. Each limb had aching bones, I was walking slowly with uncertain, clumsy feet, my speech was slurred, I couldn’t get the small change out of my pocket and I craved sleep.

In the newsagent, trying the simple act of buying a newspaper held up the queue of busy people behind me: I lost the battle with my pocket trying to extract a pound coin, then dropped my wallet which emptied some of its content on the floor. The assistant took the opportunity to serve some of her normal, sane customers whilst below I fought with the floor to release my credit card from its wet and dirty grip. Having won that battle, and extracted a twenty pound note from my wallet in preparation for payment, I rose to my normal height.

The assistant ignored me and her eyes went to the next in the queue – which turned out to be the right thing to do if not for the right reason. I had stood up too quickly and was suffering nausea and the world was becoming rather grey. In short I was fainting! (Fainting in public is not advisable – believe me – I’ve been several times. But will leave that for another day).

Fortunately I was able to hang on to the counter and avoid collapsing in a heap. I was now aware of the assistant’s horrified look in my direction, no doubt I was a funny colour. She snatched the paper out of my hand, scanned it, and thrust it back in my hand, along with a fist full of change and the receipt. I left the shop clutching this as I was in no fit state to resume battle with pockets.

So all was fine!

Looking back, I ask why hadn’t I told Wee Jim how things were really going for me? Why not turn to the people held up by me in the newsagent and apologise for holding them up and tell them that I have Parkinson’s? Would it do any good? Possibly.

Wee Jim might gain an understanding of what it’s like to live with PD, challenge his prejudices. His ability to get a point across is strong, pity he’s not on our side. I doubt it. Noel coward defined a boor as any person who, when asked how they were, proceeded to tell you. Wise words.

Strangely, upon reflection, I feel I was at fault in the newsagents. Like many Parkies, I like to look “normal” – I don’t have many of the obvious signs like a tremor. Clumsy and slow – yes. The assistant wasn’t naturally aggressive, probably just stressed out by an awkward customer who was possibly under the influence of drink. In these situations where our PD is taking control, I believe we have a duty to let others know. How can we expect understanding if we don’t let them know we are far from normal?

Hey, I’ve got PD, the sun is shining and today I really feel fine!

[Carrigan]

I fully agree and if my husband cannot let others know which he does on occassion then I certainly do it for him, from this we have found friends who rally care and take time understand. Others of course just do not know what to do with the information, that is why parkinson's awareness is so important. God forbid it is not a competition but people are generally sympathetic to say someone with cancer which they can understand, but PD can be a mystery to most who have not come into contact with it . great comments from you thanks.

[drew410]

How true. Why do we not tell strangers? Take too long to explain? Embarrasment - why should we feel embarrassed? People have their own problems and don't have the time to listen to mine? I look "normal" so do they think I am living a lie? Or a smack-head? Or drunk?

Unfortuntely people do jump to conclusions and trying to explain when something happens is usually met by an Easter Island statue stare which could kill at 30 paces.

I have a card which I keep in my wallet which I got from Parkinson's UK which succinctly says in a few words what my illness is and how it may affect me. The only problem there is getting it out of my wallet without spilling the rest of the contents on the floor due to shaky fingers.

The best(?) way is if in known company PD throws a spanner in the works. For instance. Arriving for civic reception last week with French Twinning village people I suddenly got double vision on entering the building and lurched to the left. My wife grabbed me and I staggered to a hand rail. To the assembled people my wife said "It's OK he has Parkinson's and he will be OK in a minute or two".

Two ways of looking at that statement.

1. It got the message across and for the rest of that evening peole were very nice to me without being patronising.

2. It's not OK that I have Parkinson's and I won't be OK in a minute or two but I don't have a choice.

It's all in the translation but you get my drift.

There were a few more incidents last week but that was the easiest one to explain. I was thankful that our visitors just accepted my situation and treated me the same as everybody else.

I hope this makes some sort of sense.

[Hidden]

I am just beginning to publicly acknowledge that I have PD for the 1st time in the past 6 years.

I say "fine" because I don't believe other want to know and/or I really don't want to explain.

Until this site I knew so little about PD I didn't know how to explain it to others. Guess that is why I am just beginning to talk about it freely.

[shasha in reply to Hidden]

i do exactly the same if people ask how i am - i automatcaly say ' fine thanks 'purely because i dont believe people really do want to know

god bless xxx

[DrDan]

Purplepixie, You are so articulate!

I've always said having PD without a tremor is like having the flu and not throwing up. You're still dealing with a health issue but you don't have much to show for it (when I'm ON).

But when I slowly walk from my handicapped parking space or take way too long at the grocery check out putting my change back in my wallet; I can't help but wonder what others are thinking. For over 13 years now I've been able to speak and make presentations to crowds of 30 to 300 and if and when I share that I do have PD I can still hear people said, "you don't look like you have PD."

Sorry to say those days are waning with time. I know inform my university students that I have PD (explained in the syllabus) and not to be alarmed if I slur my speech or lose my balance.

[ram927]

I have PD. I let people know it. My friends and co workers know it. I am currently putting a TEAM FOX (TEAM BADLANDERS) walk together to talk about Parkinson's. Most are understanding about my actions and we laugh about it mostly may napping seems I have a button on my butt anad when I sit on it too long I doze. But I say if they have something worth listening to I stay awake . I know I am only ONE but I will not let what I cannot do stop me from what I can do.

[ram927]

A follow up is I know how I contracted PD AGENT ORANGE I served two tours in Vietnam as a helicopter pilot It doesn't make it easier but I know ow I contracted this mess which to me make s it a little but easier to understand

[PatV in reply to ram927]

THank you for your service. I agree, wish I knew how I got it. "Idiopathic" sucks (pardon my slang)

[PatV]

I tell everyone. It's Parkinson's Awareness Year for me! Our team at the JCC in NYC for the Parkinson's Walk April 28 is BOLD MOVES.

[ram927 in reply to PatV]

was there in 2010 and had great time and meet some great people we went b/c my daughter put on a PD golf tourney in Sioux Falls SD and raise about 10K but this year we will be in the Badlands NP for a PD awareness walk

[shasha]

i loved this blog purple pixieand have just read it again - you wrote with such humor - it made me laugh out loud

thanks so much xx

[Maria29]

I tell everyone I have PD. Most people say "You don't look like you have it"

Then I tell them about the many manifestations of PD. I think it's very important for people to know and become more aware of all the symptoms. The slurred speech and balance issues can often be mistaken for drunkeness. The exreme fatigue that suddnely takes over randomly and fits of "yawning" can also be mistaken for other social "no-no's". I will be in Central Park on April 28 th as I have been for 5 years.....It's really a good time.

Maria

[jillfd]

I remember one of the first things I read after my diagnosis was by Micheal J, Fox where he made the point that by "going public" each of us puts a name and face on PD, especially early on-set. The more visible we are, the more recognition is given to our fight for a cure.

[Hokuto]

I was diagnosed in late summer, 2011 at the age of 61, and since then, I've never found it difficult to tell people what I've got. I currently consider myself lucky since my symptoms are not major, yet, so perhaps the ease of telling is simply an expression of denial; I hope not, and I likewise still hope that my symptoms will remain relatively minor and that medical advances will be able to keep up with the progress of the disease. I broke two ribs last Sunday when I slipped on wet deck stairs, but I don't consider the fall particularly due to Parkinson's; I knew both that the stairs were slippery and that I was wearing the wrong footwear (smooth sole beach sandals), and I'd walked down the stairs safely under those conditions before, but the odds finally caught up with me. But afterwards I wondered whether the PD was indeed at fault, at least partially.