Words From My Sleepless Bed

I have been thinking about what to say to you. I have been lying awake (it’s 3am) feeling guilty I’ve not replied, but wondering what are the right words?

It’s hard when you’re newly diagnosed. scratch that, it’s still hard now. That sudden shock. The painful realisation that this thing you’d hoped was ‘just a little thing’ that perhaps you’d shake off (pardon the pun) or do a little physio to aid recovery, is in fact, here to stay. Worse than that- this condition you’d hoped was ‘just a little something’ is just the beginning. Your new found constant companion, and it’s going to get worse.

It’s easy to drown in a sea of woe. It’s ok to do that too. You’re coping with horrendous news.


Is there a light at the end or is it just a big freaking train racing to finish you off?

It looks safe, but is it?

Truth is, we just don’t know.

I cried for a week when I found out my limp would be here forever. I had just turned 42. I still feel robbed, cheated, really, really angry. Why me? I’ve got 4 children. My youngest were just 5 years old. (I have twins.) I thought my life was over. I remember my husband saying “come on, you need to get up” and I replied “Why? What’s the point?”

I don’t know anything about you. Yet if you’re reading this I guess you are interested in how to deal with Parkinson’s. Personally I have always prided myself on my ability to pick myself up, dust myself off, and start all over again. (Thank you Fred Astaire.) After all, I am from Yorkshire. I won’t lie to you. It’s not easy. But it is possible.

It will take time, lots of it. Most yopd / pwp I know live happily in denial, choosing to just ‘get on with it.’ They take their meds and tell nobody. It’s like a dirty secret. Others fall apart, resorting to “woe is me” and give in. I don’t judge, it would be so terribly easy. Sometimes it’s tempting.

I personally fall into the “stuff this shit” bracket. I tell people I have Parkinson’s but it’s ok, it’s not contagious. Nobody is ashamed of asthma or diabetes, right? So why should I not speak out? I have reluctantly learned exercise is the key to feeling better. Now I hate exercise just as much as the fat people wearing activewear, socks and slides smoking a fag (cigarette) outside the fish and chip shop, but I’m sorry. Spoiler alert – exercise is good for you. Who knew, right?

I go to a gym 3 to 5 times a week at the ungodly hour of 6.30am. It’s transformed my mobility and fitness. Which is great because the bad news is that Parkinson’s will try to take it from you. My overall abilities are not what they were. Is it Parkinson’s or my age? I’m now 48. My left hip, my affected side, sometimes aches when I walk. I blamed pd, then was told lots of women ‘my age’ have this issue. Damn.

I do hip exercises now.

Which path? Who knows.

I can’t tell you how your Parkinson’s journey will pan out. We’re all so different. What I can tell you is I have found the courage to leave an unhappy marriage, find a new job and financial stability, do so many more crazy fun things with my children and new boyfriend, (can one have a boyfriend at my age?) and embrace living in the now. It took me a long time to understand that last one. I mistook it at first for something depressing, but it’s not. Of course I plan for the future, but today is wonderful. It’s raining right now, that’s ok. It’s cooling the air and helping keep my garden growing. Babies live in the now. They’re very happy. Until they’re not. Lol

In short, Parkinson’s is shit. That’s it. Rather than being defined by it, I choose to define myself as a person. I choose to be happy, live in utter refusal that anything bad will ever happen, and as someone whose partner had a cardiac arrest, 32 ish minutes of CPR and survived with most of his functions and all of his personality, knows better than anyone that life is precious and good.

Eat chocolate, do some exercise, (everything in moderation!)

Live well and be happy.

Until next time. Kitty.


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