She Really Did It!

Just as I was writing the follow-up to my friend Naomi Allen’s headshave event, the news announced that raging bushfires had reached the little town where she and her family lives! I nearly died with shock. I knew she hadn’t been well that morning.

‘The boys were very scared’ was a bit of an understatement when I was able to contact her later.

I have known Naomi since she was six, and her Mother is one of my best friends.

I had already been worried about her Mum’s safety the day before when yet another fierce bushfire was being fought in her area along the coast.

Now her daughter had to flee and drive for safety from the encroaching bushfire with three children aged five years and under!

25 fire trucks arrived in the little country town on the New England Highway while the inferno was being watched live on television.

Meanwhile Naomi was driving her precious boys to safety in the opposite direction.

Naomi and four-year old Braxton recently featured in the Newcastle Herald story here after she had promised Braxton she would cut off her hair to make him feel better about his baldness condition, alopecia areata universealis details of alopecia which occurred following a severe virus. Currently the diagnosis is life-long hair loss.

A situation at pre-school had broken Braxton’s heart, and told him he was different. Now Mum was going to shave off her hair so he would not feel alone. “Goodonyer Mum”!

The haircut on 30th October not only made the little boy so happy, “He keeps touching it”

Naomi says, but it also helped raise awareness about Alopecia Areata.

Big brother, Lincoln, helped hairdresser, Stacy, with the head shave – with relish!

Lincoln turns Barber!

Nay had decided to make the head shave into a fundraiser to help a charity that makes wigs for children with Braxton’s condition. They were thrilled by one of the largest single financial donations (nearly $,800) they had ever received.

They will also put Naomi’s former long hair to good use.

So much love

(You can still donate here)



https://myparkinsonsdiary.blog/2019/09/28/hair-raising-tale/

https://www.newcastleherald.com.au/story/6445452/a-mothers-selfless-love-for-four-year-old-son/?src=rss&utm_email=9980537b30

Musical Bathroom Chairs

I’m hating this old person thing, buying all these aids, such as a deep sided dinner plate, but I do love my new bathroom chair in the shower.

Simple but effective
Adjustable hand- held or fixed hose works well with he shower seat
Add a clear acrylic long-handled back brush (hanging from tap). Plus a strong double-length grab rail on the wall for safety

Quite expensive through my Occupational Therapist, but there now case of those split- second blackouts I have now and then. My bathroom is tiny but easy-clean low maintenance. No room to swing a cat (pets not allowed). This is the second bathroom chair. The first nearly shot me on to the floor like a slippery dip when wet! Extremely dangerous. The company dont usually accept the return of used goods (I had only tried it once), but they decided the risk of accident and repercussions was not worth it and rang to offer an alternative.

Actually the tall and burly youngish man and I ended up having a good laugh as we tried squeezing nto spaces while we passed each other several times trying to adjust the seat height. I hope the neighbours weren’t listening, now I recall our dialogue relating to the chair, ending with “Yes that feels great. Thank you.”

So I can really recommend a shower chair. It is just lovely to take the weight off and let lovely warm water cascade gently over to ease the muscles while washing with lovely scented shower gel. How I miss no longer being able to use a bath, but this comes close.

A Helpful Medical Fund NIB


I dont know about you, but dealing with these robot pretend chat customer relations people online “does me ‘ead in” but once you get past it can be marginally better than hanging on the phone forever.

Having said that, my medical fund staff and service at NIB Medical Fund are always great, but it was after hours by the time Ihought about the information I needed from them.

The chat robot gave in immediately on the typed chat site, it could not ollow my simple query, and offered to ‘put me through to a human’ (sic). ‘ok hurry up’ I typed teresly, not holding out much hope. I am used to dealing with Telstra.

And voila, there was Nicholas. Now Nicholas was cool. He was right on it. He put me at ease, had obviously read the file in that few seconds, and even worked outside the script.

Nicholas is World Leader in online problem sorting. Fortunarely he didnt have to understand my Scottish accent, since I type in Australian English (apparently there is a difference).

I even asked him a trick question, “since my quote for my 2 teeth on a denture is $1400, I have $760 left with you, you pay $60%, so what will you actually give me?”

This is where Telstra on the phone would have hung abrutly, pretending a line break from Indonesia. Not NIB, not Nicholas.

Without even starting with ‘Duh!’ back he came in a flash. No not a real flash, my tablet is working fine.

This was great news. I felt so relieved. Only $640 to pay. So while I had my new best friend there I asked him why they had rejected my refund for my blood pressure machine, in the faint hope Nicholas could work miracles.

Other customer relations personnel would have sneeringly pointed out that if I had bothered to read their email (I read as far as ‘rejected’), there was light at the end of the tunnel. I had it in writing. Instead he swiftly inserted the relevant print, in clear-to-see print. Impressive.

So he checked the name of my provider. They were approved. Told me how to go about resolving the issue.

I was getting euphoric! I had paid $90 at the chemist for a blood pressure machine. I could claim 60% after all. You do the maths. I was ready to go and lie down, mentally and physically, but Nicholas was firing on all cylinders.

While I was slow-typing he was checking my file and mentioned that I didnt have a third party to deal with things in an emergency on file. So we promptly dealt with that as my long-suffering and highly trustworthy elder son has reluctantly accepted power of attorney.

It was time to wrap things up, and not only had I been treated with dignity, which believe me at our age is rare, I was about to get a refund I wasnt expecting, once I ring the chemist to ask for an official receipt. We will see how that goes. Time to say goodbye. But the elation was going to my head:

Nicholas replied that he liked my sense of humour. What a lovely person. He asked if there was anything else he could help me with. ‘No thank you, I love you, Bye for now’, and I disconnected before he could type ‘DAFT OLD BAT! I had such a good evening after that.

I confess to getting anxious these days when dealing with things that before would not have phased me. I used to organise festivals and functions for Heaven’s sake!

It is partly a Parkinsons thing, but young servers in shops can give that shoulder lift as if gearing for trouble that instantly sends my mind blank and I do end up meeting their expectations, to my inner annoyance.

So hats off to Nicholas and NIB for great customer relations.


Update: Heard from NIB today. The receipt my chemist emailed me for the blood pressure machine was promptly uploaded and today I heard back that $60 is on its way into my bank account. I also copied this item into the NIB facebook page and had a message back to say they would follow up with Nick to let him know his work was appreciated.

An Unfurry Bear

I have this special teddy Its not a furry teddy, its specially made in the Shetland Isles as a collectable and is made of special machine-nitted knitted lace. Cost about $130.

I got my grandaughters little matching ones made out of recycled knitted Fair Isle jumpers to go with mine, but they are too old for teddies now.

Anyway I was sitting looking at it yesterday and thought: Actually, that bear has no hair,

it is a bare bear,

with no hair, and it is

beautiful’!

Then I wondered how Baxton, my four-year old friend with alopecia areata, who got boken-hearted recently when a little girl at preschool told him to go home because he didnt belong, would relate to a bare bear with no hair.

Braxton has a different take on life. Would it mean anything?Would it empower him to have this bear onside?

Busta isnt soft and cuddly. He isnt even particularly friendly!

He is just Busta, the bare bear,

who sits on his own,

by the side of my chair.

He doesnt need friends,

cos he just doesnt care,

but when the toys need him,

they know he’ll be there.

Busta, the knitted bear from Fair Isle in. Scotland, home of my ancestors.

So I am expecting a visit from Braxton and his two brothers soon. If Busta resonates with Braxton, then Busta will be much happier with him, as long as he is kept well away from two sticky brothers lol.


Have you made your donation to the wigs for Alopecia charity yet? We only have till 30th October when Braxton’s Mum, Naomi, has her head shaved for this charity. Please go now, no matter here in the world you are,

to the donate page by clicking on this photo.

Many thanks

Really Helpful and Positive PD Video

https://www.davisphinneyfoundation.org/video/the-pd-you-dont-see/I have found these the least daunting and most helpful sources of information regarding Parkinsons and living with it. Families and caregivers may recognise some concerns they may have, and be able to accept that is why we are behaving this way. Perhaps then the family doctor or specialist can be consulted.Some PD vids scare the hell out of me. I can only hope for breakthroughs before I get to those stages. These videos by Joanne Hamilton, PhD, ABPP-CN of Advanced Neurobehavioral Health of Southern California in Poway, CA, however are really good and available on Youtube. They have make a big difference to my outlook.

The Nicest Thing You Can Say

“I forget you have Parkinsons” my helper said as I was struggling to get out of tthe car after our two hour outing. For a professional to say that was praise indeed, for I try hard to stay on top of it.

We had set off for the little shopping centre at Jewells with the great bargain shop that is chokkers with things you forgot you needed, like another $2.50 long-handled grabber and 4 old- fashioned ce cream dishes,

AAA batteries, 3 cans of turqoise spray paint for the outdoor metal bench, some craft clay for kneading to strengthen my weak left arm, plus set of wooden tools to work it (spent a happy hour on Youtube later while horizontal learning how to make things with it. Will take it up to the big table in the community hall during the week and have a go. Should be good for hand brain workout.)

Back to what I call The Treasure Cavern: I have a shopping list app on my phone that works really well, and kept me mainly on track, if you dont count the sundae dishes…and the windmills in the photos. Another weird item I was looking for was a shopping list pad that consists of money- sized colour prints of banknotes from $100 down. Had a bit of fun writing notes on the backs of $100 and handing those over! Used ones decorate my old bookcase as a reminder to keep writing. Yes it may be weird, but it works. My life. I am giving everyone a handfull of banknotes with their Xmas present – in the form of a notepad. Its the thought that counts.

I had left my helper talking to another client we ran into – at my request – and enjoyed looking at the myriad items with the improved focus of my last eye injection. $70 later at the checkout and my usual cheery chat with JJ, who never tries to rip you off like some dollar shops do.

Remembered powdered cinnamon and avocado garlic dressing from the organic veg shop, and we headed into what I call ‘The Geriatric Cafe’ because it is always full of pensioners. We had a laugh at the notice on the counter

but decided to barge in anyway!

I got halfway through my tasty bacon and egg roll when I hit the wall. What they call ‘off time’, when the levadopamine has worn off and the next dose is due…speaking of which…Made the mistake of deciding to wait the 20 mins till I got home – paid later in pain.

I am not conscious that I slow down like the Energiser bunny on the wrong batteries until it is pointed out, because my thinking slows as well, even my speech apparently.

So that was when my helper remarked, in a complimentary way, ‘Sometimes forget you have Parkinsons’, as I was just slowly getting hold of my walker (called Harley) for the longest walk home (the same few short metres I did easily earlier, got in the door, took my tablets, lay down leaving shopping iin bags, moaned and groaned while my muscles protested at the change of gravity, and fell asleep.

But it was a good fun day. Today is Saturday, my horizontal recharging day. I am writing this lying down. My mind says eagerly ‘lets go out and drag the bench over to the grass and give it 3 cans of turquoise spray paint, c’mon!’ My body says, abruptly. ‘Shutup!’

One of the items I didnt realise I needed till I saw it! Got two.


Note: compulsive behaviour is a side-effect of Parkinsons. I consider mine impulsive behaviour, but I have always been that way. Other recognised side effects are gambling (does the occasional $2 lottery ticket count), and increased sex drive. Still waiting.

Need Peace and Soothing?

“I will give you rest.” https://pray-as-you-go.org/p/o/2520

A really nice, gentle app with lovely music, a daily word from the Scrptures, short prayer and gentle love. No shouting, accusing or upsetting. My counselling friend, Kim, plays the daily message in her car on the way yo work. I find it gently soothes me before I go to sleep. It is above all gentle, in the way I see Jesus as gentle. I am not preaching, just saying it works for me. The app is free. T

here are actually 2 ‘Pray As You Go’ apps for download from Google Play or whatever. The other takes you directly to prayers for your particular need – good for young people. The one in the link above provides a quiet moment.

Peace and love.