How Am I Supposed To Look?

Hello Friends!

An apology. I am trying to do a lot of things at the moment, sorting out the house, selling on Vinted, keeping up with my Walk 100 Miles For Parkinson's Challenge, getting the roof fixed, dealing with the incompetent Welsh Water, so on and so forth, and then the odd extra such as reapplying for my Blue Badge, well, it keeps a girl busy, but it also means my replying to your blogs has slipped somewhat. You see, typing is not easy and typing out my own blog takes it out of me.  Something's got to give!

Anyhow, I just wanted to dip in here this evening to say, as many of you probably already know, that the Parkinson's UK garden designed by the amazing Arit Andersen, at RHS Chelsea Flower Show was announced this afternoon as the winner of the People's Choice Award! As voted for by the public, not the judges {who in the opinion of the public know nothing about gardens!}

I sat here and cried. Happy Tears, of course, but oh! how foolish I felt when, sitting and sobbing into my Kleenex, there was a tap at the door. I thought it was one of the builders so made a sorry attempt to say come on in. AArrgghh! it was a previously unknown to me courier! What on earth did he think was happening? LOL

However, it doesn't end there. I sort of blubbed out "it's okay, it's just that I'm watching the RHS Chelsea Flower show and Parkinson's UK has won the RHS People's Choice vote, and it's hugely meaningful to me because I have Parkinson's" He looked quizzically at me and said, "you haven't got Parkinson's" which, on so many levels highlights the sort of problems we who do have it face!

I have got Parkinson's, but how does someone who has Parkinson's look? How are we supposed to look when we are harbouring a debilitating neurological condition that manifests itself in any one of very many ways? How do people without Parkinson's look?  Well, I have tremors. They are probably the most prominent symptom that most people associate with Parkinson's, but not everyone who has Parkinson's has tremors, and I don't have them all the time, and not everyone with tremors has Parkinson's. I've gained weight, but does that mean I've got/not got Parkinson's? Same can apply to speech, eyesight issues, loss of smell, taste, appetite. Some have hallucinations, or insomnia, or oedema, others don't. Then there are the symptoms connected with gait, stiffness, freezing, and shuffling. My skin and hair are awful, due to the medication, but then so is the hair and skin of others just because that's how it is.  I could go on, there are over 40 such symptoms, all of which might be exhibited by someone with Parkinson's, but equally can indicate something else entirely unrelated.

Naturally, as the condition deteriorates {remember, there is NO CURE at present} then some of these symptoms become more obvious and others will develop. Right now, I am grateful that {so far} my visible "symptoms" are occasional tremors, I drop things, I am stiff and slow, and I stoop. Sometimes I shuffle, my balance is off, and I need to stop and rest more than most. But others with Parkinson's look quite different to me, in the same way that you, as you are reading this, look different to me, except you don't have Parkinson's {at least I hope you don't} On a good day, now that I've started to take more care over my appearance, if I'm dressed tidy, wearing make up, and have accessorised well, you might not notice anything untoward regarding my health, other than I need to use a walking aid.  

With over forty known indicators, and not everyone gets more than a few, and everyone gets a different selection at the Pick 'n' Mix smorgasbord that is Parkinson's, how can you determine how someone looks?  Take medical conditions out of the equation.  Someone might be stiff and slow because they have arthritis.  They might also have thinning hair, psoriasis, and drink a lot of coffee that manifests in tremors of the hand. They do not, however, have Parkinson's.  Someone else {ME!} might be stiff and slow, and have thinning hair, very dry skin, and tremors, and in this case {MINE} they have Parkinson's.  Get what I am saying?

My Parkinson's does not control who I am or how I look.  I do.  It may contribute it's five pennorth from time to time, but right now, in the here and now, I am still in charge of how I look, and as the man said today, "but you don't look as if you have Parkinson's".  What worries me most is that, although I don't LOOK like I have an incurable disease, I DO HAVE an incurable disease, and one that causes a lot of frustration {when I can't move, or bend to pick up some of the things I am constantly dropping, or hold a pen to write, and especially when it gives the impression to others that I am lazy, not interested, or unsociable.  It's all part and parcel of a very complicated and deeply misunderstood {currently} incurable medical condition. 

Okay, I've rattled on enough tonight.  I only dipped in to say how chuffed I am over the winning garden, and I've rambled on and on and on!  Tomorrow, I need to share with you a rather amazing and magical thing that is happening right now in my "vestibule"!

Until next time

💙🌷💙