“HOW HAS PD LED TO SOME POSITIVE ADDITIONS? WHAT ARE THE HIDDEN BLESSINGS?”
These words were on the Facebook page called ‘Living With Parkinson’s’ this afternoon. It seemed, at first, like a simple couple of questions from an interested member of the group.. but some of the comments were anything but simple and there was a lot of negativity and hopelessness expressed in some of the comments. Reading the comments, positives being outweighed by negatives, I felt quite down and sad, which I hadn’t been when I started reading the post.
Here are a couple of those comments
“There are no positives to this terrible disease. Every day is a struggle.” and
“You’ve got to be kidding! It’s taken away every pleasure in my life. Find something good about that!” and
“PD took away so much. I find it difficult to find a positive addition. If there is a hidden blessing, it’s really well hidden and I haven’t found it yet!”
Then I started thinking about my life, and the 13 years after my diagnosis. Where I HAD been quite happy, sitting on my bed and thinking of devouring my ice cream (a reward to myself for completing half of my To-Do list today.. well, I only got 2 out of 9 things ticked off yesterday so I improved ..and besides, I love salted caramel iceream) but I digress……..
I realised that when I had been thinking positively I had been feeling great, but reading all the negative comments made my mood sink and I felt awful. Really reinforced the notion that you need to find the positives in the situations you find yourself in…no matter how well hidden.
SO, I got down to answering Nelson’s interesting questions.
Of course it sucks having PD but don’t have a negative attitude or it will drain you and suck you dry. Negative thoughts breed negativity, unhealthy thoughts, stress and bad health. Two quotes that help me get motivated and live more positively are:
“There is always, always, always something to be grateful for” AND
“I don’t have any choice whether or not I have Parkinson’s, but surrounding that non-choice are a million other choices I CAN make.” MJFox
When I look for the positive differences PD has made in my life I find lots. Sure there are some awful, crappy things but I wont dwell on those …..it’s a waste of energy!
So what positive additions has PD made to my life? Believe it or not, there are some.:
Since my diagnosis ( and after I stopped always seeing the negatives) I have done things I NEVER would have done or indeed have been able to do before Parkinson’s entered my life
I have :
Learnt to not sweat the small stuff. To look at and enjoy the little things (yes, like salted Caramel ice cream)
Started to be able to paint and have held exhibitions in Perth at the Niche, in my home town of Mandurah in Western Australia and at present I have 5 pieces of art in an exhibition in Austin, Texas.
Published a children’s book about Parkinson’s .
Gotten over my fear of speaking to a group of adults and have done a Tedx talk and talked to small groups and large groups about PD (;eg Rotary, nurses, teachers etc) .
Started a group in Mandurah called The Unsteady Hand Mob and through this group teach art to people affected by Parkinson’s whether they have it, care for someone with it or have a friend or family member with it.
Started a boxing group for people with Parkinson’s (PWP).
Produced a play called Kinetics to raise awareness of PD. (2019)
Produced AND directed another play about a man just diagnosed and it received rave reviews.
Become much more confident in myself.
Raised over $15000+ for the Parkinson’s Nurses fund (Western Australia).
Made a small business putting my paintings on accessories, mugs, coasters and just about anything.
Produced a play called Kinetics to raise awareness of PD. (2019)
Produced AND directed another play about a man just diagnosed and it received rave reviews.
Become much more confident in myself.
Raised over $15000+ for the Parkinson’s Nurses fund (Western Australia).
Made a small business putting my paintings on accessories, mugs, coasters and just about anything.
AND
I am an advocate for those who have PD and have helped many people start and continue their Parkinson’s journey and love the best life they can.
Developed a Hospital Kit for People with Parkinson’s so they dan have an effective hospital stay.
I write a blog and am in the process of putting another book together, this time full of poetry and short musings.
I tend now to be a ‘glass half full’ person.
Two days ago I went to Curtin Radio Station and did an interview with the lovely Jenny Seaton ..something that would never have happened BP.
I spend more time on things that I want to do and need to do now that I was forced to retire early.
I now take exercise and good eating seriously and except for the Parkinson’s I am healthier than I have been for years.
I don’t waste time trying to impress people to get them to like me. They either do or they don’t and if they want to leave my circle of supportive friends ..it’s their loss. I surround myself with positive people .
So surprise, surprise there ARE some unexpected positive additions to life after the diagnosis of Parkinson’s.
I’m still alive, and although I have had to give up driving (which is a VERY HARD adjustment), there are still things to be thankful for. I am moving house soon, hopefully into a small village community which will be great I hope…. easier to maintain, lots of activities to keep me occupied, downsizing and the ultimate 2 deal breakers..a big art room and a heated pool open every day all day!!! and I’m grateful that I am still able enough to move and to enjoy my new home. Even if I’m exhausted and sore and my ‘offs’ are worse than usual because I’ve done so much culling , clearing and sorting in the last 2 months…..I’VE DONE IT !. (surely that deserves another ice cream?)
So take note…. seeing (and looking for ) only the negatives will make you unhappy, depressed and isolated, so every night think of two positives that happened that day and one thing you are grateful for. Write them down if you want ..on paper with pen, pencil, texta or even lipstick o the mirror if you like..anywhere you want OR verbalise them to your pet or even your Teddybear or maybe the invisible man. Make it fun and soon your mood will lift and it’ll become easier.
YES Parkinson’s sucks and YES you are allowed to have a slip and a good cry every now and then.. but when you’ve finished get up, get moving and get those positive vibes ringing out.
Last Monday, I was feeling particularly down. My ‘off’ periods had been severe and longer than usual for a few days ..one lasting over 2 hours. The dystonia in my left foot was its painful self, and the right foot, which had so far been spared PD’s fury was starting to become affected too. My feet were curled and so painful, my calf muscles were on fire and I was feeling teary and sad. I read a phone message from my support worker saying that she wasn’t coming until 8.30 due to a mix up. I lay on my bed feeling overwhelmed, with tears running down my cheek, feeling so frustrated , so helpless, so alone….And I started to write. The words came pouring out faster than I could type but I needed to say things that I usually keep to myself. I needed to articulate what was going on in my head and I needed to do it without feeling guilty that I was experiencing these thoughts. Initially, I was just going to write down the things and leave it unread by anyone except myself but realised that it wasn’t going to be of benefit to me if I kept these feelings to myself… I needed to confess and feel better when I had.
Being an educator, I have felt it was my calling to educate the general public about Parkinson’s and help, them become more empathetic and also those l people who have it … helping them to live the best life possible.
There is a lot of pressure on me to always be positive , inspirational, unfazed by the PD’s attack on me..and I’m not sure whether it’s coming from Inside me or from other people… I’m guessing a bit of both.
Sometimes, people tell me to slow down and take a break from all the activities because I’m doing too much and becoming exhausted. But I HAVE to tell them that I can’t stop because I may never get started again. What I don’t tell them is that I’m terrified of stopping and stagnating in my home.
And So here is what I wrote..it’s a bit self indulgent and I feel a tad guilty that I’m feeling like this ..wrapped up in a pity party that is really no good to anyone.. and it’s hard for me to admit that I have such thoughts and feelings and that I’m not some super human. But I really need to say these words so that I can, hopefully, move on. I need to know that it’s ok to feel like this and realise that everyone has moments # of self doubt, of not wanting to face reality and to say
” this is crap , I feel sad , I’m not perfect.” And it’s ok to do so.
“The Unlikely Inspiration”
“You are an inspiration
You’ve helped me so much.
I look at you and wonder
How you can be positive and such.
You’ve refused to give in,
You scoff in PD’s face.
You are so strong and resilient,
Would I be so in your place?
Could I be as defiant
Or strong or as tough?
I watch you and wonder
If my strength would be enough.”
These are words that people have said to me
I hear them and wonder “How can it be ……
That people perceive me as this strong one
One fighting the fight
When I feel so helpless
When my body’s not right.?
I throw things in frustration ,
I cry buckets of tears.
And then pick myself up
And try to forget all my fears.
“Think positive the experts say
Don’t let it get you down
Put on a smiling face and
Upturn your frown “
But it’s hard to do that
When I’m scared of what’s coming
Scared of losing control of my body
And just feel like running…
Away to the land
Where I’m healthy and fit.
Where my body obeys me
And I don’t feel like shit!
Where I can be ‘normal’ and feel
That I can do what I like.
Dancing and singing
And riding my bike.
Go out with my friends
And play with the kids.
Laugh, work and read …
Things that PD forbids.
I don’t always want to be the one
Who is inspirational and strong.
I like it sometimes
Don’t get me wrong.
But sometimes I just want
To be seen to be me ….
The one that’s frightened
And from problems NOT free.
💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜
Now I just have to take a deep breath and publish this.
Am I scared that I will appear weak? Yes.
Am I scared that people will judge? Yes
Do I need to publish this? Yes
Do I need to continue to educate and help people understand? Yes.
Otherwise, I will feel that there’s no reason for me to have Parkinson’s , that it was an unlucky break , that I’m just going to waste my life going from ‘off’ to ‘on’ and take up space. I’m sorry if that sounds self indulgent but I need to see a reason.
well, looking back at this that I wrote last night and rereading it, it sounds a bit heavy. I know I’m supposed to be all positive and cheery but I’ve learnt that if I try to be so all the time I’m going to go nuts! I was reading some things on one of the PD Facebook page# and one lady said that she felt bad because everyone kept saying to be positive and look for the good things …and she just felt sad and angry cheated out of her life …. So I hope this blog helps her to see that even the strongest of us can get overwhelmed and angry and frustrated and sad.. AND THAT’S OK!!!!
Thursday night saw many people exhausted after yet another day of high temperatures and I was no exception. Asleep in front of the tv just after 7, I was enjoying a perfectly awesome dream when my medication alarm went off at 8 and prevented me from saving the game with a … but I digress !
I took my meds and half an hour later was wide awake and, not being able to get back to sleep, I decided to do some painting on the back patio. I was excited to get on with a huge painting I’m trying to do for an exhibition/competition.
Big mistake!
The canvas was so big it was unstable…I could feel myself falling forward and not wanting to mess it up , OR get paint on the front of the only nighty I have that doesn’t have paint on it….. I turned and fell sideways and onto my back …SPLAT onto the limestone paving!
Second time in 10 days that I’ve discovered that I don’t bounce on hard surfaces!!!!
Knocked the stuffing out of me I can tell you.
I lay for a bit and tried to get up….bad idea….PAIN!…. Next, I tried to ring my friend on the iPad that was lying next to me… discovered that an iPad also doesn’t bounce when it falls and doesn’t work when the screen is shattered.
Had a brilliant idea…. call out to my neighbour …. but soon learned that : A soft PD voice+ his airconditioner on full blast = no response 😦
Another good thought sprang to mind… my apple watch fall detector would have gone to work and alerted my 4 contacts…then realised that my apple watch that detects falls was sitting on the bedside table …yes I KNOW,… not much good there!
Tried looking around to see where the phone had fallen… bad idea…neck killing me, couldn’t t sit up or actually move…. then success! I moved my hand around hopefully and found the little sucker within reach. Rang my good friend and ex nurse Leonie and sheepishly told her I’d had a fall and couldn’t get up. Rolled myself into the coma position and waited. The two cockroaches and one mouse that were out for an evening stroll were not appreciated!
Leonie and Alan arrive looking suitably concerned until Leonie couldn’t stop laughing at the scene that was in front of her…. Large female in nighty, lying on the concrete with a full container of white gesso no longer in the container but spread all over said female’s hair, shoulders and various other parts of the body.
After a coupe of fruitless attempts at getting me up, the ambulance was called at 9.30 and Alan was set the task of washing the gesso out of my hair before it dried completely . Armed with a glass salad bowl of water , a small comb and some shampoo he gallantly attempted the impossible.
At 11 the ambos arrived . They apologised for taking so long..they had been the third ambulance dispatched to rescue me..but the first two had been diverted to heart attacks. These poor guys had come from Cockburn!! Seems late night shopping is not then only thing popular on Thursday nights!
After some deliberation, Mike, the lovely Ambo, decided that even if it was a balmy night, I couldn’t stay lying on the hard limestone and after a couple of attempts at getting me up and me saying a Tad more than “ouch, gosh darn that hurts” he introduced me to a lovely thing called “The Green Whistle”
After floating up onto the stretcher I was wheeled into the ambulance and, giving a royal wave to the neighbours lining the street, off I went to ….well what I thought was going to be a hospital with nurses and doctors and beds in it.
Wrong!…
After About 20 minutes blocking the doorway of the ED I was put in a holding bay, affectionally known as ramping. The driver disappeared and the lovely Mike hooked me up to his monitors and said he would be looking after me there until there was room for me in the ED and a nurse was assigned to me. He was great… chatting, reassuring, medicating and all in all being a fantastic person, looking after me as if I were important.
At 3am that all changed when I was taken into the ED…….Confronting isn’t a strong enough word … and I was put into a bay and left. Those nurses deserve a medal putting up with some of the things they had to.
I won’t bore you with the next couple of hours …. Except to say I’m glad they weren’t longer.
After being:
*pulled, poked and prodded by someone I THINK was a Dr (he never introduced himself),
*slid across a bump and dumped onto a CAT scan thingy
*grumpily told to hold my arms up when they clearly couldn’t go any further
*and being unceremoniously toileted,
things changed and suddenly everyone became more gentle . The presumed Dr came in and told me that the scan had revealed a fracture of my L3 vertebrae and the Spinal team at RPH were deciding the best course of treatment. He said not to move and promptly left again. Needless to say, I wasn’t in a happy place.
Thank goodness for my two angels…My support worker Leanne, who rocked up early and looked after me and then the lovely Day shift Dr who sent me to a quieter place and explained everything to me.
The decision was made to send me home with the insistence that I’d have someone there 24 hours a day for at least 4 days and followed a list of what I could and couldn’t do, particularly for the first 2 crucial weeks.
Between Leanne and Tash, I’m too scared to not obey ..gee they can get testy when I try to do stuff!
Leanne has organised 24 hour help for the next 4 days as required and unsuspecting friends may be getting a phone call.
So that’s that….Just when I was on a roll with my weight loss….(8kg over Xmas)!..and my new found exercise, Croquet, I hit a stumbling block and things are set back. But just think how boring life would be if everything was always smooth sailing ( heck, I don’t even sound convincing to Myself!!!!!! )
And what now? I will continue to: *Take full advantage of my new friends ’the painkillers’
*TRY to have some rest but find the fine line between RESTING too much and losing mobility OR doing too much and aggravating it.
*Suffer withdrawal symptoms when I’m unable to play croquet because I’m not allowed to bend over
*follow the rules ( don’t need an angry Tash or Leanne). AND
I will continue to be very grateful for 2 things
It didn’t turn out a lot worse. I could have hit my head on the concrete, broken my back, landed on the various sharp things around the place… a fractured L3 and a multitude of bruises are better than not being able to walk or paint or breathe anymore! …. AND that
I have an amazing support network, full of wonderful people who go out of their way to be helpful. Thanks to everyone life is pretty darn good.
I had the privilege of being the Pinjarra Rotary Club’s guest speaker a few nights ago and was very touched by their genuine interest in my journey and Parkinson’s in general. I am passionate about educating the wider community about living with PD and breaking down common myths that surround this wretched thing .My aim is to promote understanding and empathy not strange looks and sympathy and this talk to these fabulous people has gone a long way to realising this aim..in Pinjarra anyway.
There were some very insightful questions afterwards but the one question that surprised and delighted me was “How can we, as a club, help you achieve your goals? I mentioned that I, and my group called “ The Unsteady Hand Mob “ , really needed a printer… and three days later a lovely man arrived on my doorstep carrying a Fabulous printer, an extra ink cartridge and a box of paper… 5 x reams of it! I was blown away! Rotarians are amazing and do so much for the community and now have helped me and my group.I can see the printer being used extensively in the coming months as I try to reach another of my goals . I’m putting together a hospital and medication kit for PWP to have in hand when they go into hospital. Something along the lines of the free kit available in the US but unfortunately I can’t make it free. There is a heap of work to be done and my printer will be ‘flat out’ printing draft after draft until I can get it right. I am blessed that the Davis Phinney foundation is letting me use some of their solutions to ideas and so I’m not having to ‘reinvent the wheel’ so to speak.
There was also a lot of interest in the book I have recently written explaining what happens to a person who gets PD..written from a child’s point of view which was very pleasing and validating.
doh! I’ve done it again! Written a title and then gone off on a tangent and not matched the title with what I intended to say…well,as the song says’ blame it on the Parkinson’s’ ! ( if you haven’t heard that song yet , check it out on YouTube)
What this blog was SUPPOSED to be about was …
I was talking to , well mainly listening to, a newly diagnosed lady over a cuppa the other day and as she was venting I saw that she was very distressed (understandably) and very stressed as well. It was obvious that she was totally overwhelmed with the diagnosis and had not given herself time to digest and accept it.She was doing exactly what I suspect most of us do…..push the thought of what life is going to be like and try to carry on as normal as possible, putting husband, children , other family, work, house chores, friends etc etc BEFORE looking after herself. She was saying Things like…well, “if I don’t do it, who is going to?” “ My kids need me to be strong and healthy and able to do everything I need to for them”, “my husband can’t do it in his own”,” I am weak and useless if I don’t do things like I did before”, “i am weak if I ask for help”, “what will other people think if I don’t do the things I’m ‘supposed ‘to do?”, “I can’t give up work, we need the money.” The sad thing is that I’ve heard these things many times over the past few years as I have more and more newly diagnosed people wanting to come and have a cuppa and a chat. ( seems like my educating the community goal has lead to educating PWP as well)
but I digress …again…
what I told her and have told many before her is something that seems so simple and yet so hard to do……
STOP! Step back and really ask yourself…will the world end if I don’t do ………* insert thing here* ……. Right now? ……
Will I be struck by lightening if I don’t….. * insert “ ….until tomorrow?
if you keep pushing and pushing yourself you will burn out. And then be of no help to anyone. PD has taught me many things that I hadn’t expected…
it’s taught me that: I DON’T have to be superwoman, I DON’T have to do everything perfectly, I DON’T have to sweat the small stuff, It’s ok to take time out for myself and as hard as it is to acknowledge IT’S OK to ask for help. Most people are only too happy to lend a hand IF they know what you need.
Now obviously, this doesn’t only apply to us with PD…everyone need time out for themselves.
So know that you have permission from the universe and STOP and smell the roses and while you are there marvel at the little things . Watch a child exploring their world and take a leaf out of their book!
Now, I have to check that everything’s ready for my fundraiser lunch on Friday, check with my volunteers that they’re ready, finish writing my grant proposal because it’s due next Wednesday, work out what I’m doing for the boxing session on Tuesday because tomorrow I’ll be too busy getting prep done for my art class on Thursday.
Now if only I could heed my own advice…I said I’d learnt it…..but I haven’t yet learned to do it all the time….I told you it’s hard! 😜
ps I DID heed the advice a little…I went for a sit by the pond at the park at the end of the street after my garage sale today……when I SHOULD have been vacuuming and washing the floor!
In response to a number of requests, here is a copy the talk I did on the 20th. I’ve also included Mia’s speech to make it flow. I hope you aren’t too bored with it.. just shut your eyes and imagine you’re watching a weird lady who is rocking around the place..hanging onto the lectern like a life raft and wondering what the heck comes next. Oh wait…if your eyes are closed you won’t be able to read! Scrap that idea..just read it .
I came on stage holding my grandaughter Mia’s arm and she deposited me safely behind the lectern. Then she went off and waited for her turn.
And so the speech started…
“Good Afternoon,
Today I made the choice to get onto the stage safely instead of walking on by myself and maybe taking out some of the set or perhaps falling off the edge. I think I made a good choice.
We all have to make hundreds of choices every day, and today I want to tell you about my experience and the choices I made.
Imagine, if you can, living a comfortable life… having a job you love, good friends, great health and everyday chores take a normal amount of effort. Everything is going well. You are a teacher who loves ‘her kids’, you are a mother of 2 and a grandmother of 3. The thought that your life might suddenly change never enters your head. You are taking your expected path taking each challenge in your stride working steadily towards your life’s goals. ,…You are invincible.
Then, almost without you noticing at first, strange things start to happen to you. Your body seems to have a mind of its own. Deciding to do weird things and not obey you
Like:
Can’t do repetitive hand movements to clean teeth so move head top and down instead (demonstrate)
Your handwriting turns into chicken scratches
Your toes curl and try got kiss your heels You keep tripping over
You get very tired at work and almost fall asleep
Your arm creeps up to your waist and your hand hangs like an Italian sausage in a deli. (demonstrate)
Your walk becomes shuffly (demonstrate) and your kids call you Mr Burns.
Then, panic attacks start, and become a normal part of your life.
You finally decide something is, indeed, wrong and you stop procrastinating, and make a doctor’s appointment.
Test upon test is ordered…CAT Scans, MRIs, blood tests, cognitive tests, prodded and poked and mulled over by numerous doctors and specialists.
By now, over 2 years have passed and the symptoms keep occurring, you get frustrated . You’re told that it’s all in your mind .
The was me 13 years ago.
By pure luck I found myself going to a new medical centre and saw a doctor I’d never met before. He recognised my symptoms and sent me off to a neurologist.
The neurologist pulled at my shoulders, rotated my wrists, watched me walk and asked me to do 3 simple movements demonstrate)..I had no trouble wit my left side but couldn’t complete them using my right side. He told me that he was 99%sure that I had Parkinson’s Disease. Apparently, the only test that would confirm with 100% accuracy was to cut deep into my brain to look and I had to be dead for that. But dying just to prove a point wasn’t an option for me! So, given my symptoms, the best way to diagnose at the moment, was that if the medication he gave me made me feel a bit better, then it was Parkinson’s and as he told me more, I struggled to take in what he was saying.
I remember sitting in the room, trying to take it in but all I could think was how will this stop me going to Norway for Xmas with my daughter.
He wrote me out a prescription for the drugs that would confirm my future with PD, said goodbye and he’d see me in 3 months. As I left, he told me not to believe everything about Parkinson’s Disease that I’d read on the internet. And that was that. No explanation of what may happen in the future, no referral to support groups that may understand and help, no list of contacts for therapy to alleviate or delay the symptoms.
I knew nothing about PD except I thought that it was an Old person’s shaking disease and that Michael J Fox was an exception to the rule getting it young. I had heard that people got very shaky, ended up in a wheelchair and then died from it . That was not a good thought to have at my age.
I felt disbelief and then fear …What did this mean for me? My family? Was my life ending sooner than I had planned?
I left the room on auto pilot . Luckily my sister Mandy, was with me to drive.
I felt sad then confused and then scared. I didn’t want to think about it. !….I wasn’t ready for this. I wanted to do so much more and I felt that something huge and uncontrollable had taken away all my life choices.
I had an incurable, degenerative neurological disorder that I thought would keep attacking me, taking more and more away from me until it eventually killed me.
I sank into a bit of a depression and had my own little pity party.Then I told my family and close friends.
I tried to be positive in front of them. To protect their feelings and anxieties. I tried to protect them from seeing me when I was not doing well, particularly mum… But it was hard and I had a fleeting thought that I was actually glad that my dad was not alive to see me struggle. I was surviving but had forgotten how to live.
BUT:
In January 2012, 16 months after diagnosis, I was scrolling through some inspirational quotes, trying to find one that would make me feel a bit better,, and came across one by Michael.J.Fox that changed my whole thought process. It said:
“I don’t have any choice whether or not I have Parkinson’s….but surrounding that non-choice are a million other choices that I CAN make.”
It was then that I decided to make the choice to Fight this thing and not let it rule my life.
But how?
MY teacher brain kicked in… ‘learn about it’….and so I googled Parkinson’s …..the specialist was right! …definitely the wrong
move! …so many different things and some very scary stuff that I now know wasn’t true.
I needed a new plan..
I rang Parkinson’s WA and arranged a home visit from one of their Parkinson’s nurses. Brilliant choice!
Heather turned out to be my ‘Earth Angel.’. Extremely knowledgeable about PD, she helped me find reputable sources of information and the best thing she told me was
“you don’t die OF Parkinson’s you die WITH it”
So, it wasn’t going to kill me .My first piece of good news in 2 years.
I decided I needed to go to as many seminars and talks that I could and participate in every PD research project being done in W.A. I wanted to do everything, find out about everything and I wanted to do it all NOW!
But I had a problem, I had so many ideas buzzing around in my head but they, like me, were totally unorganised. The frustrated Virgo in me wanted organisation , but the impatient, creative spirit wanted to do everything at once… so I decided to write a list of things to do and tick them off as they were tackled. I did what you do….. I got a nice, new exercise book, decorated the front carefully, put some dividers and stickers inside, covered it in plastic (yep I’m a stationary nerd and a procrastinator) and sat down to write my list,
Unfortunately I had used up all of my ‘on’ time getting ready, had gone ‘off’ and couldn’t hold the pen to write!
Let me step out of my story for a tick and explain what I mean by ‘on’ and ‘off’.
OFF time: when the medication isn’t working or has run out and symptoms reappear. It manifests itself differently in different people but When I’m ‘off’ my bradikineasia kicks in …,meaning I move very slowly, can’t articulate, become very stiff, face becomes mask like and I am virtually frozen having little control over my legs and hands as they feel like they don’t belong to me. These are often very debilitating times.
ON time: when my meds are working and I can move quite well, albeit wobbly and sometimes a bit fast.. When I was first diagnosed, I was taking meds every 8 hours and getting about 7 hours of ‘on’ time between them.
But, because it’s a Degenerative disease the ‘offs’ get more frequent and now I have to take meds every 3 hours. So that means during my day…. 5am-10pm ( about 17 hours) I get about 5 hours where I am really “ON” but to get that 5 hours, I take 12 tablets a day and wear a 24hour slow release patch.
Now back to my story.
I took my pill, and thanks to my magic meds I was back at it an hour later.
Now, what to put on my list?
1. Tell my Grandchildren what was going on with me. They were 5,6, and 8 and beginning to notice things that were happening to me and asking questions. I searched for a book to read them to open a discussion and couldn’t find one… except one that said. (Use quotation hands) that the grandpa had shaky hands, he had Parkinson’s, and went into hospital for an operation and came home cured…so NOT true! So I did what teachers do…I made my own resource. I decided to write a book, from the perspective of a child, explaining PD to kids. I enlisted the help of my grandkids and sitting down with them was an eyeopening experience..and here’s one of them to share some things with you.
..Mia came on and said……….
For as long as I can remember, we go to Nan’s every school holidays and some weekends. In the beginning, I remember chopped fruit before going to sleep, visiting her classroom afer hours (and feeling like a renegade), walking down to the duck pond and her helping us pre-make lunches for the week ahead. Since nan’s diagnosis, things like that haven’t been as possible- she can still take care of us, it’s sometimes a little more us taking care of her. We’ve always loved going to op shops together- I think nan’s got some kind of shady deal with the ladies who work there- at the very least, we’re always getting great discounts ☺ When I was little I used to think nan had a superpower. The three of us would snuggle into bed with her in the mornings and she’d say lots of poems to us- without even needing to read the book! Fully memorised!! incredible… But when I was about 6, I noticed that strange things were happening to her. Sometimes, her hand shook when she was doing stuff other than handshaking. Her thumb started twitching and she dropped things all the time. She couldn’t play the piano anymore and I could no longer rely on her pretty handwriting to label my school books. Sometimes she couldn’t smile properly, and it was funny watching her try to get off the couch. She had trouble doing our hair, especially in plaits, and I got sad about that. My siblings and I were worried so we asked nan what was wrong. Dad and nan told us that she had (jazz hands) Parkinson’s disease. My 6 year old brain deduced that this meant she was gonna die soon. I was too scared to ask her. The truth came out eventually, though… (pause for drama) (hand wave) she was gonna be fine. And also wanted us to help her write a book. Cool !!!!!!! Lots more things started happening to her. Her toes go crazy and her head bobbles around when she talks. Noah started calling her our Bobblehead Nanna- which we thought would be a perfect name for the book ☺ When we go on walks she holds onto us to keep her balance. It’s really nice cos it’s like getting a hug every time we walk together. I was opening the childproof pill lids for her as a ten year old, as when she needs her medication for having hands that stop working, her hands obviously aren’t able to work enough to open the stupid bottle. Real oversight by pharmacutical companies!
Nan’s house smells like paint and 100 year old paper. She has so many art supplies that when we come down, we can pretty much work on any project you can think of. Homemade jewellery? Got it. Painting? Yup. Drawing? Yeah, just ordered 36 of the coolest pens you’ve ever seen. Sewing? Costumes? Sculpture? Origami? Fairy houses? Jump? How high? She’s got paint on just about every surface in that house.
It’s amazing. It’s an inventive edifice, castle of creativity, holy temple of discounted art supplies, my nan’s house. We help her get dressed sometimes and she gets us to tidy up a lot. She likes when I cook gran nans mince for tea- But my nan is always going out of her way to help people, so I’m happy to help when I can. I’m really proud of nan for writing a book, and everything she’s done. Starting up an old people boxing thing? Putting on a production? Starting creative workshops? Designing and selling clothes, bags, scarves, pencil cases, coasters, what- ever! My nan is a force of nature. I honestly feel bad for this Parkinson’s fella sometimes. He’s no match for my nan ☺. She is an inspiration to me and so many others. I love you nan.
.
So, Grandkids taken care of, I chose the next thing on the list.
2. Research proven ways to slow down the progression of PD for myself and other people with Parkinson’s ..and actually do them!!
I read that Creative Pursuits were helpful in managing symptoms. It seems that PD, combined with Dopamine based medication is actually stimulating the creative part of the brain. I first experienced a spike in my creativity when I became obsessed with writing poetry at Stupid o’clock in the morning when Parkinson’s induced insomnia hit. Also I had always wanted to paint, but I couldn’t put my ideas on paper….but suddenly, I discovered I could paint fat, long legged birds and emus on colourful backgrounds.
Of course I had to adapt the way I painted to accomodate my growing symptoms eg: when I was in an ‘Off’ and I couldn’t hold a brush I’d put paint on my useless right hand and use my left hand to guide it over the paper. I found I could do a repetitive dotting pattern if I had the beat of American Idiot by Greenday blaring full blast on the speakers. I painted almost nonstop for months, at one stage did 42 in 30 days. Apparently, while intensely involved in a creative activity, the brain would actually produced some dopamine and the symptoms of PD are reduced. My dining room table became covered in paint and paper, my chairs morphed into multicoloured sculptures and there was paint on every surface in the house. My hairdresser played ‘hunt for the new colours’ every week in my hair and my hands looked like a Pro Hart painting. I painted on canvases, paper and anything and anyone that stood still long enough and filled every nook and cranny in my house. It was a crazy place!This lead to holding an exhibition and being asked to participate in the People With Disabilities section of a local Art festival. I remember thinking when I was asked….why me ? Im not disabled.. Then the light went on!
I was a bit nervous about putting my work on public display…but I won first prize and the choice I had made to put myself and my art out there helped me
have the confidence to put my designs on clothing, bags, coasters and such and sell them with part proceeds going to my Team’s fund- raising for the annual Parkinson’s WA ‘Walk In The Park’ event.
Now I needed to help other PWP enjoy the feeling I got from creating and so I formed ‘The Unsteady Hand Mob’ … and run Creative workshops for people affected by Parkinson’s. Not just with it, but care partners or family. I felt it was very important that the caregivers were also included as they are often the forgotten casualties of someone getting PD. We now have workshops the 1st, 3rd and 5th Thursdays of the month and many impromptu sessions at my house.
We spend ages talking over coffee and This social interaction is also vital to our well being.
I saw an article about the Rock, Steady Boxing programme in America. It was having very positive results slowing down the progression of symptoms, helping to make new pathways and helping with strength, endurance and mental health. . I searched Mandurah for a gym that would help me. I finally found someone willing and we opened in November 2017 with 3 participants, which soon grew to 12 regulars We continued until the COVID lock-downs commenced.
When that happened, I didn’t want to stop so I continued on my own at home and as soon as we were allowed to exercise with more than one person, I started a boxing programme on my patio.
We meet twice a week and box for an hour.
Once again, social interaction after the hard work is priceless.
3. Educate the community about PD.
While PD is the second most common neurological disorder in the world, very little is known about it by the average man in the street. Many sufferers experience ignorant and hurtful comments from the public. I, for example, have been accused of being drunk when my hands wouldn’t get my money out in the checkout line and being abused for fraudulently using the disabled toilets and or parking spots. I’ll never forget one day in Macdonald’s .I was a bit unsteady on my feet and a former student came over to me and gave me a big hullo and a huge hug. I was happy to see her but before I could say anything the adult with her (not her Mum who I knew) yelled at her to get away from the disgusting drunk person. Friends of mine have been refused entry into hotels and clubs and on to buses because they were perceived to be drunk.
So I take every chance I can to spread awareness to any one who will listen because it is surprisingly common. I was amazed to find out that In Australia, 1 in 250 people have PD and this increases to 1 in 100 after 60.
April is Parkinson’s awareness month so I hold functions to spread the word and raise funds. Thanks to my wonderful support group of family and friends, we hold an annual morning tea, put educating displays in my Doctor’s surgery, visit markets and have ‘pop up’ displays in shopping centres the rest of the year.
The attendees are always amazed by the hidden symptoms and other things they didn’t know..It’s often likened to an iceberg.
In 2018 I discovered an amazing play written by Sue Wylie, a woman diagnosed just before her 50th birthday. One of the best choices I have made is to date was to produce this play. This script also gave me another important quote to live by “Accept, Adapt, Adjust.”
I have learnt that having a degenerative disease means that before you can fight the fight you have to Accept that you have it. Acceptance doesn’t mean resignation, it means understanding that it is what it is and you just have to find your way through it.
Then comes Adapt… Adapt your thinking and actions to successfully live a great life and then, because PD is degenerative, Adjust these adaptions again to cater for the constant changes.
And I am also working on producing a Hospital Kit for PWP that will hold medications and letters from the neurologist and help educate hospital employees about the specific needs of PWP patients. Particularly the need for medication to be taken on time, every time.
4. Provide support for people indirectly affected by PD (partners and family). I knew a lot of PWP and their partners were always asking me questions that I had some difficulty answering. I could answer from the perspective of having it and I am single so I could only imagine what they were going through. So I started monthly lunch get- togethers and from 6 people under my patio, our group has grown to average 22 at each lunch and this is continuing to grow. The partners in particular are very pleased to find out that they are not alone in how they are feeling and coping with a loved one having a degenerative disability.
PD does not discriminate…. It is not an ‘old person’s shaking disease that kills.’ Looking back I was in my early 40s, (maybe earlier), when some of the symptoms first reared their ugly head. I have friends who were diagnosed in their 30s and one who was diagnosed at 7.
And so, as I continue on this journey, I’m positive, motivated and happy but never sure what Mr P has in store for me next. It’s just the ‘gift’ that keeps on giving!
In conclusion, I’d like you to remember, no matter what life throws at us, we have the power to make choices about what we do with our non-choice. We are in charge…so make your choices wisely and make a positive difference to yourself and your community. You will find that life is beautiful and it’s worth getting out of bed every morning because the alternative sucks.
I choose to keep on researching, educating and badgering PWP To come to the creative workshops, lunches and boxing and try to make other’s lives better and hopefully there will be a cure coming soon.
I’d like to leave you with one more quote that is important to me…
“Life is not about waiting for the storm to pass It’s about learning to dance in the rain.”
“Life is not about waiting for the storm to pass It’s about learning to dance in the rain.”
I can’t believe that my last post was written almost three years ago! where has that time gone. SO much has happened and I can’t believe I haven’t written about it. It’s not as if I had anything else to do last year with all the enforced COVID 19 lockdowns.
I’m not going to bore you with all that has happened since the Cellotape incident….. too much to say..but I am going to waffle on for a while. 😉
Last night I gave a TedX talk at the Mandurah Performing Arts Centre. It was an amazing experience and one I will remember for ever. It was something I never would have done if I hadn’t been diagnosed with PD. I spoke about my PD journey over the past 11 years and the choices I have made over that time. I’ve been on stage in drama and musical performances many times over the years but nothing compared to the buzz of 15 (and a bit more) minutes of reciting a script that I had written, trying to remember everything I wanted to say , not leaving anything out that was important, sounding like I was having a casual, unscripted conversation with the audience and making them think that we were having that conversation 1 on 1. It didn’t help that I had a mental block straight after I gave my opening 2 sentences!
What to do? it seemed like an eternity and then I made a ‘joke’ about the benefit of having PD was that I could have a lectern to lean on and it was a good place to hide some dot points to use if I forgot what I was going to say…but I’d forgotten to put them there! Thankfully the laughter jogged my memory and off I went. Two people actually came up to me afterwards and said how clever it was to PRETEND that I couldn’t remember and show how frustrating PD brain freeze could be. Bless them 🙂
My beautiful middle grandchild joined me in my talk and spoke eloquently and sincerely and I was so proud of her. She had the audience in tears then fits of laughter. She had many people come up afterwards and congratulate her on her wonderful words.
I was so glad that I had another chance to educate people on the world that is “Living with PD”. And it’ll be crazy to see it up on the TED YouTube Channel.
Speaking of crazy, search for and Check out these YouTube videos….
well I know this has been a bit of a weird post but I just wanted you to know that I’ve been feeling really bad about not keeping this site up to date and I promise that I’ll be better at it now. ;p…I hope….
If ther’s anything that you’d like me to write about, or you have any questions i’ll try my best to do so.
Just drop me a line here, or better still, email me at noosemum@gmail.com and put ‘Blog’ in the subject line.
I can’t believe that it’s been so long since I wrote in here. So much has been happening , so there’s been a lot to write about….but maybe there’s been too much and I haven’t had the time! Whatever it is, I’m glad to finally be able to put ‘pen to paper ‘ again…..or I guess it’s gotta be ‘finger to keyboard’ now.
After going to bed on New Year’ Eve full of hope and determination that 2018 was going to be my year of good things, January and the first two weeks of February decided that they would do their utmost to destroy that resolution. Breakages of bones, sickness of family members and various other obstacles appeared and threatened to make this year one that would be best forgotten! However, what fun would that be? So….it was back to the mantra of my PD Facebook group…. ‘ Positive, Motivated, Happy’ and throw in some of Heidi’s “Aspire, Believe, Achieve” and it’s back on track!
Now for the reason for my blog title this time; or maybe it’s self explanatory?
It started with what seemed like a good idea (as all things do). The lovely ladies at Mandurah Podietry and 4Life Physiotherapy (+Grant) Let me run some lucky number things to raise money for my fundraising efforts to support Parkinson’s WA. As it’s nearing Easter, what could be better than some Easter baskets full of goodies and wrapped beautifully with cellophane and ribbon? And that was the first mistake!
Things started out well…..my lovely friends and family donated Easter goodies…… then….I found a basket, put coconut fibre in, arranged rabbits, eggs and marshmallows in basket…so far so good. Then I started to enter one of my daily ‘off’ periods…but stubbornly refused to stop … it needed to get finished! When did putting cellophane around a basket and securing it with sticky tape get so complicated ? I used to be able to do it with my eyes shut (well nearly).
First, the stubborn fingers wouldn’t listen to my brain and refused to open the cellophane up to full size. Not to be beaten, I enlisted the help of my mouth. My toes tried to join in and did their best to dance around in encouragement. Finally it was spread out (albeit a tad wet and tooth marked on one edge.) Putting the basket onto the cellophane was a breeze 🙃 Then , stubborn fingers and all, I pulled the cellophane up and over the top of the basket. But it didn’t quite fit. Not to worry I thought I’d sticky tape the pieces together and add a bow on top.
WRONG. I couldn’t hold the cellophane and reach the sticky tape at the same time. No problem, let go of the cellophane, grab sticky tape…can’t find the end! Fingers REALLY not cooperating now..frustration setting in! Throw tape into bin and get a new one from box. It’s wrapped in a heavy plastic bag and I can’t open it. No worries! Get scissors …..
WRONG again! My scissors were stuck together with paint (how did that happen ?) and wouldn’t work. Aha not a problem….go to newly (and brilliantly organised )shelf and get a new pair. Dammit they’re in a sealed hard plastic thingy . No problem, I’ll just get a pair of scissors and cut the plastic off!
Ooooops obvious problem!
Teeth no help here…toes have stopped dancing and are retreating into a knotted mass of pain. Bashing with steel ruler has no affect on the plastic, but makes me feel a bit better.
Lightbulb moment…get My Stanley Trimmer. (Note to self: Bad move when experiencing an ‘off’.) I don’t think anyone will notice the blood on the egg….yes they might….eat egg.
Stop! Take due medication. Drink two glasses of water. Stop stressing and wait until the meds kick in. Sit and meditate for the required time.
Meds kick in, I’m a ‘wrapping ninja’ ….no cellophane , sticky tape or sealed scissors can beat me! Luckily I remember another pair of scissors are in my painting supplies and they do the trick (on the sticky tape not the sealed scissors…those suckers are still in my box waiting to be freed.)
What could possibly go wrong now?
Cellophane pulled back over the basket, sticky tape end found and a piece is cut off ready to hold the cellophane. WHAT THE……? I didn’t want the tape there! It’s not doing any good on just one piece..it needs to hold the TWO pieces together.
Meters of tape later, basket is covered in cellophane, the messy masses of tape are almost disguised by ribbon and a bow and my finger has stopped bleeding. Then I realised that I had three more baskets to wrap.
Luckily my sisters are on speed dial!
ahh the fun that can be had living with PD. Who needs a circus?
When I called in to Bodyworks shop/small gym in November 2016, something fantastic was put into motion and I’m very grateful for whatever it was that made me decide to chose THAT gym at THAT time to enquire about “Boxing for Parkinson’s”.
As Person with Parkinson’s, I was acutely aware of the need to ‘use it or lose it’ when it came to keeping mobile and free of the stiffness, pain and cognitive degeneration that comes with PD. I’d been looking at a lot of articles on line that were sprouting the fantastic benefits of 2 special exercise programs for PWP. One was called called Rock, Steady Boxing and the other one was PD Warrior. There’s was one place to do PD Warrior in Western Australia and that was 90 kms away and nowhere in all of Australia was Rock, Steady Boxing available….the closest class was over 18,000 kms away!! Both were out of the question. 😫
I read as much as I could about these programs and started searching to see if I could find someone willing to help me get a program up and running. Armed with my file of articles I decided to ask every gym in town ( there are a surprising amount.) if they offered a programme like these.
I’d just picked up some coasters that I’d had made and happened to see a shop front with a sign saying BODYWORKS . I asked the girl behind the counter but she said they didn’t do anything like that. But then the most enthusiastic and driven person I’ve ever known popped his head around the corner and asked what I was talking about. And THAT was the start of something very special. Antony was so interested in what was happening in America and spent months doing his own research on the matter …then he opened his gym and his heart further and now provides a safe, non-judgemental place for us to work out in.
We’ve been having classes for 5 weeks now and I can honestly say I’m feeling a definite difference. The brain has to work overtime and so it’s not just a physical difference , but also a mental one.
One of the participants has shown an amazing improvement in his balance and walking. In the class he doesn’t need his walking device (!you know, the one that is like a frame on wheels with a seat on it ). It sits in the corner as he needs it to walk any distance, but it’s never touched during the session. In five weeks, he has progressed enough to walk forwards and backwards while sparring …and not falling over. At times, he even skips and bounces. It brings goosebumps to me when I think of last week when, as he was waking out at the end of the session, Antony called out “you forget something mate”? …… He’d gone out the door and forgotten his walker!
And yet, despite me speaking to groups of PWP about the availability of this , old man apathy is stronger and we have had trouble getting willing participants. In America, there are over 600 gyms offering the boxing program and many classes are attended by 30+ people, some of whom go five times a week! Here in my town we have 7 committed participants. But luckily for us, Antony is soooo enthusiastic about the benefits for us that he gives up his time and room and is intending to offer us two sessions a week next year. Costs are not being covered, but he says that the reward for him is seeing us progressing week by week. Growing in confidence, strength, mobility and more ….
And I thank whatever forces that were aligned that day in November 2016, for enabling me to meet the most enthusiastic, generous man you could ever wish for to be on your side when you’re fighting an incurable, degenerative disease like PD.
This quote from Michael J. Fox popped up on my Facebook memories page two days ago….I had posted it 3 years ago …. and it’s still necessary to remind myself of it every now and then.
For the past couple of weeks I have been fighting two separate infections and it seems that my body has been so busy fighting them that it has forgotten to keep on top of my PD symptoms. The ‘off’s have been sudden and brutal and quite uncomfortable for those who have had to witness them. I’m sure my family are sick of me saying ” I’ll do it/come/ring/…as soon as my meds kick in.” As I seem to be saying it with monotonous regularity. The sudden cessation of ability to do even the simplest of tasks, the irritatingly slow movement and the unnecessary appearance of eyes filling up for no apparent reason has meant that it has been a lot harder to hide my ‘offs’ from my friends and family. And this has led to a couple of ‘curl up in a ball and have a good cry moments.’ One such moment was at stupid o’clock yesterday. I was in bed, making a mental list of what life was going to be like next time…..I’d have successful relationships, I’d save some money ‘for a rainy day’, I’d travel more, I’d be healthy….when the sledgehammer dropped smack on my head! There won’t be a next time! Life is not a dress rehearsal! There will not even be a PD free future. This is it! I’m not stupid, I know these things, but to have your dreams and musings interrupted by such a big jolt of reality, sucks big time.
I unloaded to an overseas friend and felt better ..as you do, and then checked my fb and there popped up the MJF quote. It’s as if the Facebook fairies knew that I needed to read it again, pick myself up and get on with it. After all, hadn’t I just been on the radio with Antony, telling PWP to “get up, get moving or give in” and come on down to the Bodyworks gym and join the mob in ‘boxing for Parkinson’s sessions.? So I must practice what I preach and just get up, dust myself off and get on with living the best life I can.
Out came the iPad and I listed the positives. This is a very important thing to do every night…regardless of whether or not you have PD, a life threatening condition, financial problems or any other of the millions of things that people are upset by. Every night think of, photograph, draw or write lists of things that are positive in your life. Things that you are grateful for. Things that are special. Funny things that happened that day. And read them over and smile and think how lucky you are and how much worse it could be.
So what does this mean? It means that I have to stop procrastinating and get letters from professionals to aid my NDIS application. ( and not roll my eyes on exasperation when one of the questions is ‘when do you anticipate recovering and not need the services anymore.’). It means I have to commit to the gym sessions at least three times a week to keep me from seizing up completely. It means I have to keep fighting with every fibre. It means that I have to buck up and go back to looking for the humour in everyday situations. It means that I have to be grateful that I can still paint and function independently.
I have a wonderful support group of both family and friends who are always there when I need them and who treat me like a ‘normal’ person. And for this group of people I am extremely grateful.
Now I’ve probably lost a good portion of readers as I have been a bit philosophical and a bit self indulgent…. so I’ll change the subject and tell you of some wonderful things that have happened in the past few weeks….so you see….it wasn’t all bad!
I had a fundraising morning tea at my old work place and it was amazing! My lovely friends Sally, Carl and Jenny went above and beyond to organise it and to date, I have banked just over $600 into my ‘Walk in the Park’ fundraising for Parkinson’s WA. Massive hugs and accolades to those amazing people.
Another big positive was the starting of ‘Boxing to beat PD’ sessions at the Bodyworks Gym run by the amazing and enthusiastic Antony Romeo. After mentioning it last November when I happened across his gym, he has done a lot of research and preparation and now we’re ready to rock! We start tomorrow and hopefully we’ll build a big group of people who will send the message….Parkinson’s picked the wrong mob to mess with! Anyone in this area who would like to come along is more than welcome to join us. Just email me at noosemum@gmail.com.
I hope everyone reading this is feeling great and if not, can still find things to be grateful For and things to make you laugh.
It’s been a while…I’ve been wrestling with a new medication that’s been added to my daily pile…and while I’m not catching up to my friend Heidi (34 and counting) I’m having 10 PD meds and a PD patch daily plus 2 vit D, 2 vit C, 2 vit B and Powdered Magnesium. I’m beginning to rattle!
I was trying to think of something interesting to write … and failing ….when I hooked in to a running post on Facebook written by my son Josh. Seems he was having a bit of car trouble (again). The comments from him and his friends made me laugh and I realised that I was feeling a lot better. I had forgotten my golden rules for a few days… POSITIVE, MOTIVATED, HAPPY. I had been concentrating on the bad side effects I was experiencing and forgetting to do my Gratitude Journal and positive things at night. So…this post is a bit different from my usual posts about living with PD. I’ve condensed Josh’s post to the most relevant things and summarised where necessary….so you don’t fall asleep! I thought it might make you smile and have a laugh at the silly predicaments we (and our kids) get into. And anything that makes you smile can only be a good addition to the day.
Read and enjoy: NOTE: names have been disguised to protect the innocent…except Josh because he’s not! 🙂
POST:
Ahhh… Little Red. Pulled her into the servo to fill up. Guy behind me honked because I was blocking the front lane, but I was blocking it because I needed the Premium Fuel pump. Meanwhile, the Bentley to the side of me has a flat and is stuck blocking the other lane. I fill up, stride into the petrol station, realise my wallet is back at the office. Call Raf to get credit card details over the phone. It’s the petrol station attendant’s first day, she’s freaking out. We sort that out over the phone, I walk out, jump in the car, Battery is dead. Thankfully I have a starter in the car that requires a wall socket. It’s the attendant’s first day so she doesn’t know where the external sockets are. I go hunting in the dark. Meanwhile nobody can get to any pumps and people are cranky. The Bentley people are asking every car if they have a Bentley-sized wheel jack. Surprisingly, nobody does. I dig around for the tools to remove the battery and find $2, which pays for a bag of Cheezels to eat while I sit across the bay, getting honked at and waiting for my battery to slowly charge from the wall socket next to the Eskimo Nell ice machine. Life is good
Comments:
Josh: C.B (Tagging the person who initially gave him said ‘Little Red’…. A Maxwell Smart type car that is still, after all those years, a work in progress)
But I digress (as usual) so back to the story…..
Josh: P.S. still sitting here. Attendant is having absolute kittens with all these strange broken down cars in her bays and has locked the main doors.
Josh: * sends photo of car joined to wall plug via an extension chord.* ( But I can’t copy the picture here for some reason!)
C.B is amused by photo of car joined to wall plug via long chord
Josh: Phone’s at 4%
C.B reminds him he has a charger….forgetting that it’s Josh – who never has his charger.
Josh: Dad of Bentley family has wandered off ‘to buy pizza’.
###Various people express concern at his predicament …..Wife chips in with unhelpful suggestion to share cost of pizza…this is Josh who never as any money on him.###
M.B: Solution1. Push car out of way. Solution 2. Fill up other cars from plastic fuel containers in shop. Solution 3. Fill up inside of car with fuel. Ignite.
Solution 4. Film said scene, post on you tube, make money, call tow truck.
Solution 5. Sell car to guy behind for massive amounts of money so he can carry out solution 1 or 3. .Solution 6. Run away…
E,L: OMG how does it end ???
###Here, Josh’s Wife sends message to friend who lives nearby to perhaps take drink and food to poor Josh while he waits for the battery to charge. Friend declines offer as she is busy watching Project Runway.
Concerned Aunty sends many Laughing faces, but soften the laughter with comment: Poor Josh###
C.B wants: Pictures or the Bentley didn’t happen….
Josh: I COULDN’T TAKE PICTURES OF THE BENTLEY BECAUSE MY PHONE’S RUNNING OUT OF CHARGE.
###Mother – in – law expresses concern.
Aunty gives Solution 8. You should have brought a FORD ”
Aunty and cousin engage in a side argument over which is better….Holden or Ford.###
Josh: UPDATE: Phone ran out of charge shortly after last update. I pushed the car around the corner closer to the battery, which meant I was now in the dark. Didn’t stop a whole bunch of randoms come around and chat to me about my ‘cute little car’ and what was I doing there. I got sick of pointing at the battery plugged into the wall and instead propped the bonnet up so people could see I was broken don. Which then led to a bunch of people giving me old car advice,
Josh: UPDATE 2: Went into station and got the attendant to give me Phone to call Raf so that she could call RAC. 90 minute wait. Sat back in cold car and waited for battery.
Josh: UPDATE 3: Bowser refuel tanker pulls up. Guy watches me sitting near the trailers suspiciously and walks into station. Attendant later tells me that he accused me of trying to steal her trailers.
Josh: UPDATE 4: Bentley people push their car around the opposite corner and get friends to arrive and help them. Now it’s just me and my flat Phone. I left my laptop at work so literally have no light. Read a book that I found in the bottom of the car. MERCIFULLY FIND $2 ON FLOOR OF CAR and walk back into the station to buy an Oak Malt. Scare the shit out of attendant who thought I left hours ago. Ask her if she has an iPhone charger. She spends 5 minutes trying to plug an obviously Samsung charger into my phone.
Josh: UPDATE 5: After two previous failed attempts, I wire battery back up and give her a crank. SHE STARTS, slowly and choking but we’re rocking. Alternator isn’t charging so I have headlights but no indicators. I call success. Leave car running, pull keys out (car runs without keys) and un into petrol station to use their phone to call Raf to cancel RAC. Attendant tells me that I’m lucky because she had already shut down the till and was about to switch everything off as the place was shutting down. I would’ve been left in the pitch black with no external power to charge my battery. God is good.
Josh: UPDATE 6: Got home safe and sound about 5 minutes ago. Battery will go on drip charge. Bed feels warm.
###Various unhelpful comments from well meaning friends ensue…. Capped off by a comment from grandmother “You’re a Dag Josh”###
And that comment from Nanna just about sums up my son!
Well, I’m off to do my bike riding thingy….something else that I’ve been neglecting for the past couple of days…. remember …..POSITIVE…MOTIVATED…HAPPY!
BobbleHead Nanna 