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Swan Lake

I grappled with symptoms of PD for years before I was diagnosed. I was treated for depression, carpal tunnel, muscle stiffness, joint pain, nerve pain, etc., etc., and suffered awful fatigue. Having always been such a driven person, I felt ashamed by my dwindling energy. I was losing my mojo!!!!

Smiling more than before

Now, two and a half years after three formal diagnoses, (“No”, said one lovely doctor, “You definitely don’t present as someone with Parkinson’s”!!) I am no longer embarrassed by having this unattractive, irritating disease. I still like being in the limelight, love dancing, exquisite clothes, love making new friends. I enjoy so much. I think I actually smile even more than before! I just have to be “me” in smaller chunks.

Every pill makes me terribly sleepy. But that is during the day!! Then, at night time, with no pills, the complete insomnia and leg pain kick in.

I am terrified each day that my fingers won’t play the piano any more. My singing doesn’t sound so good…. I hate having to budget my “on” time…

But…. I have never wondered “Why me?” I think, “Why not me?”

Most people suffer from something or other! And Emma Lawton has far worse symptoms than I do, and she rushes around inspiring us all, facing challenges, coping with life.

New attitude

I am trying to re-frame my attitude: Instead of seeing PD as a completely diminishing disease, I will imagine I am one of those elegant white swans swimming slowly in the lake, then coming to life as a beautiful maiden at night (See? Quite realistic!!) Well, the pills turn me temporarily into a supple, focused, jolly person, although I do wish I would come to life for a bit longer during the day, but hey, those swans probably felt tired too!

And instead of picturing myself as a diminishing old bat during off times, I will see myself gliding along slowly, all elegant white feathers…..

I have learnt humility, and am incredibly grateful for what I have achieved, and what I can still do. I am composing a musical with a great lyricist who has become a dear friend. It is all coming to fruition now with a group of super young actors with whom I get to laugh out loud, and I have such satisfaction in hearing my songs sung so brilliantly.

And I can keep my friends entertained with stories of funny PD incidents: The shaky finger trying to press the right keys on my mobile phone, and sending an unintentionally rude text by mistake!

I am so lucky to have such a wonderful family, superb neighbors, dear friends, gorgeous puppy, and an incredible husband.

So why am I sad tonight? Well, lack of sleep makes me ruminate…..

I am still struggling with the recent loss of my wonderful parents. I am glad that they never knew about my PD, but sometimes I just want them to hold me and protect me…..

Life is a series of phases

But my over riding sadness stems not from having PD, but from worrying about and missing my daughter: not being able to share in her life. She lives far away, and I feel time is running out – in the sense that I may become incapable of traveling, or even moving, at some point. If maybe one day she marries and has children, what kind of grandmother would I be if I couldn’t lift up my grandchild?

I know you all can relate to this. It is so easy to wallow in self-pity in the wee hours.

So I must stop it!!! I must take each day at a time.

Life is a series of phases. We all go through ups and downs, and sometimes the downs are very deep. But maybe that makes the ups even sweeter! I love the sunshine, my thatched cottage, the rose garden, people, all people! I try to breathe in every golden moment.

I want to say thank you to Michael J. Fox and all others who work tirelessly to find something to cure PD. I heard him say he hopes that soon we may be able to achieve a better quality of life at least.

Thank you to my PD consultant, my nurse and her team, for keeping me going.

As you can tell, I am teetering around trying to be normal: trying to be brave; trying not to be a nuisance; trying to maintain my sense of fun and a modicum of glamour!! And trying to be a viable human being.

Please share how you cope emotionally with this disease. I wish all of you a wonderful, happy life!
Xx

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The ParkinsonsDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Dan Glass moderator
    3 months ago

    There is no such thing as normal. There’s, you, everyone else, and me. We’re all good people. We all have things we can and can’t do. This is life. We’re all exceptional in our own way, though. For instance ,you’re writing a musical, which I’m sure will be great. I hope to be able to hear it in all of its glory some day. Keep up the positive words and your fight. We definitely appreciate it.

  • Posy author
    3 months ago

    Thanks, Dan. At least my insomnia allows me to create the music all night as well as all day!
    Performances at Swindon Arts Centre next May, 20, 21, 23, 24.
    Proceeds to military mental health charities. Hoping Prince Harry will support it!

  • Posy author
    3 months ago

    Emma, you are a true inspiration! I was diagnosed just as you started your PD365 blog. I read every single one. Without that, I would have been clueless, isolated and ashamed. You manage to celebrate life with whatever it holds. This disease is scary in its unpredictable progression, but maybe therein lies our hope: that maybe it won’t be as bad as we imagine! Maybe we will cope and still smile.

    I fear the humiliation of being cared for – helpless, expressionless. However, last week I attended an exercise class with older, more “advanced” people, and I managed to get a laugh or at least a crooked smile from each person by the end of it, so that cheered me considerably!
    Most people have a cross to bear, and we Parkies are far from alone carrying (albeit rather shakily!) our particular cross.

    Thank you to this forum for giving me a platform. I have resisted speaking about my PD, mainly because I secretly hoped it was a mistaken diagnosis! I suppose the clever thing to do, would be to accept it, shrug, and get on with life as best I can.
    Well done, all of you who are doing just that! And newbies: We understand if you need a little time to adjust to the realities of your diagnosis. Remember, it is NOT a death sentence: Rather, it is the start of a different way of life. Enjoy moving more slowly in the sunshine, friends, family, exercising. Some days it is enough to think no further than putting that first foot out of bed. Things will improve as the meds kick in. Get going, but take your time. Don’t feel you have to rush. Appreciate being part of a community, love your home, take on new challenges and grab opportunities to gain knowledge.

    Last night, I had 1.5 hours’ sleep, then went back to bed at 7.45am for a nice nap! At least, I now have an excuse for getting up late!!!!

    Take care, lovely people.

    Posy xx

  • Emma Lawton moderator
    3 months ago

    I often think I rush too much 😉 great article and thanks @posy for your kind words. Wishing you a wonderful, happy life too.
    Emma (parkinsonsdisease.net moderator)

  • Chris H. moderator
    4 months ago

    Love this story, @posy! Reframing your attitude can be easier said than done, but it looks like you’re well on your way. Your swan metaphor is great! Thank you for your positive message! – Chris, ParkinsonsDisease.net Team

  • Posy author
    3 months ago

    Thanks, Chris, for giving me the opportunity to ramble! It has been therapeutic.

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