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.

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.

Does Retail Therapy Kill Pain?

Well that got your attention! I did find the most wonderful bag today which has been made locally in Belmont and was so nice and well done with lots of inside pockets and the smell of leather that it simply had to come home with me.

At the time I felt no pain apart from a little twinge of guilt that it was too expensive, but then it was 30% off so that made it a bargain, right? Retail logic beats financial restraint every time.

silk and leather bag by Which Bag?

Ive been looking for a bag that will fit upright into the basket of my Harley – rollator with a flap that comes down over the front to prevent pilfering. Tick. It slides into the front basket easily. Tick. Wont keep tumbling off like my silver leather backpack did. Tick. The strap reaches round the handlebar to hold on to. Double tick. Bright enough to find easily, and it makes me feel good. Lots of ticks.

Funny how a new handbag can make a girl feel special.

And it is perfect to take on my Xmas in July lake cruise on Tuesday.

Well Merry Christmas to me!

Sheryl Keating and Brooke Galea are the designers and makers of each individual bag. Here is some detail from their Facebook sales site.


The Social Effects of Parkinsons

Something disconcerting happened in the cafe yesterday that is the first time I had experienced.

Due to arthritis and degenerating vertebrae, scoliosis etc and the slowness of signals from my brain to reach my muscles I will often think “Let’s go!” and my body goes “Whaaaaat?” before it reacts.

My friend first noticed it about 6 years ago. We would get to church and it would take a few beats for me first to open the car door then to swing round and stand up. So we had a running joke where, as we turned the corner she would say, “Getting out of car now”, and by the time she had pulled up I had undone the seatbelt, reached for and pulled the car door open. Then I swivelled round and started to heave myself out. A complex set of signals and movements we take for granted.

Now I focus on getting out of vehicles before we stop as a natural thing and just accept it is an effort.

Walking stiffly was the next thing. Sometimes I walked normally, other times my legs were not bendy but would loosen a bit as I kept moving. I bought a fancy folding walking stick to help my balance, but found I couldnt use it with my left arm. It wouldnt co-ordinate with my right leg and was out of sync. No prob in my right hand. I didnt think to tell my doctor, but he noticed my usually smiley face seemed frozen when I was talking to him about my jerking legs in bed. He put me on meds for severe abdominal muscle spasms, plus nightime jerking, mentioned possible Parkinsons but no diagnosis.

My social life was spent mainly within a lovely church, Poplars in Worksop, UK where they just accepted me as I was.

Suddenly I was back in Australia, and going out with my son and family. In a restaurant, sitting next to my teenage grandaughter I couln’t cut my meat, then my left hand would jerk and my food fell off my fork. I felt she was horrified.

When they were walking anywhere I was shuffling stiffly behind. We put it down to old age, but I stopped going out with them and preferred to go to their home. Now it hurts too much to sit long they come to me for short visits. That is all I need. Or my son and I collect a coffee and sit by the water in his comfy car, or on the park bench followed by a walk by the water. This makes me happy and I always take photos so can look at them on my big screen anytime. This year’s calendar coming up!

Two Xmases ago when both sons and families visited on separate occasions I was so excited but found it really hard to speak, and move my face. My younger son, who was only used to seeing me animated was so shocked. Now he has questioned me about Parkinsons, was I sure I had it and so on. I rarely see him. A friend said she thought he couldnt cope. He already has two children with cystic fibrosis.

My long-term closest friends here are all dealing with their own debilitating health issues. We are quite a distance apart and none of us able to just hop in the car and drive any more but we are there for each other.

My current social life has been mainly within the security of Parkinsons classes including dance and art, but my Plus issues; vision,spine, fibromyalgia are adding extra challenges.

I am looking at options for mental stimulation or relaxation and have committed myself to a yoga style meditaion class for people who dont want to do yoga. The lovely coach has assured me she will help get me up from the floor after.

I rarely go out without a friend or carer, but when I am with them, and my trusty rollater called Harley, I am too busy to look for people’s reactions. At the shop counter I will grab a handful of coins from my purse, say “I have Parkinsons”, or “I cant see”, open my hand and let them choose the coins “or we will be here all day”. It is the most comfortable option. I am in control. Sort of.

My meds held the jerking and shakes pretty much in check and when I eat out I order finger food or something that can be eaten with a spoon or chopsticks. On the whole I have got it pretty much covered.

I find if I say up front I have Parkinsons people then accept any odd thing without judgement.

So yesterday came as a shock in the cafe when I grabbed the back of my chair and the corner of the table to lever myself up and this old dame gave me such a look of disgust. Then she glanced down at my (rather fancy) white rollater, and I think the penny dropped. Next time I will just punch her and claim diminished responsibility. There always has to be an upside.

As for the old lady on the next table, as I said to Angela, ‘ She obviously doesn’t know Im famous.”

“”Obviously”, said Ang pragmatically.

ps Remind me to tell you about my Letter From the Queen.

Flying Not So High But Thrilled

Photo courtesy Airborne Flight Training

Going up tandem in a motorised hanglider, or microlight (we used to call the ultralights) is one of the best experiences of my life, and I highly recommend going up for a bird’s eye view of the world while the wind rushes past. Coming down to land is such an adrenalin rush.

My flights were with friends over Singleton during late afternoon, then over the wheat stubble of Parkes in what felt like a kitchen chair with a seatbelt suspended from a triangular sail!

Ultralights then were under development, and I remember Airborne as manufacturers and developers of the best. Im assuming this company that also does flight training is a continuation from the 1980’s? I will correct if wrong.

My friend, Denis Cummings, was very involved with regular hangliding, being at that time a world record holder in the Guiness Book of records. He was also great mates with the Duncans who were totally ìnvolved in producing and flying those latest motorised craft. I often saw them flying over Newcastle towards late afternoon. Bit like ET in tandem against the sky!

It was a very cool and exciting world to be part of at that time. There was always serious risk involved. Nature can be fickle to fliers.

My two flights have never been forgotten, and I loved every minute.

Today’s microlights comply with stringent safety conditions.

The Newcastle Herald carried a feature today, (link in blue below), and having just looked at the amazing photos taken over Lake Maquarie I am sorely tempted to book a flight from Belmont, now renamed Lake Macquarie Airport.

But first I must lose a few stone!

Click here: Go on a flight through Youtube. Just how it feels!

Read about fun flights available from Belmont (Lake Macquarie Airport)

Not me, but this is modern version was how I flew! Photo courtesy Airborne site