Greetings from down under


#1

I have recently been diagnosed with Parkinson’s.
My story so far.
66 years old and up until a few years ago, reasonably healthy.
I have been a lifetime sufferer of Asthma and a few years ago developed AF.
About 12 months ago I noticed a tremor in my left hand. Not too bad and only occasionally. I put it down to side effects of medication. A lifetime of steroids for Asthma catching up with me. Shortly after that, I changed most of my existing medications but the tremor only got worse. Now it is the whole arm and much more often.

6 months ago I discussed it with my GP and he diagnosed Essential Tremor and referred me to a Neurologist to confirm. The first neurologist I tried had a 9 month waiting list but I found one with 5 months wait. It did mean a 700km round trip to see her. The other neurologist would only be a 350km round trip.

The neurologist diagnosed Parkinson’s and when she told me why, I tend to agree.
The tremor is less when the arm is being used.
I don’t swing the arms much when walking. Normally, I have a dog on a lead or carrying groceries etc so no one noticed.
My face is expressionless. My wife doesn’t think so but she has asked me if I am OK a few times lately due to my demeanor so I think there could be something in it.
With hindsight, my left arm is slow to respond when holding a fork at mealtimes.
I have a MRI scheduled for 2 weeks time. Fortunately, that can be done at the local hospital.

The next step will probably be trying some PD meds to see if they work

We don’t seem to have a Parkinson’s forum based in Australia so here is the next best place to hangout.
There is a support group that meets monthly not too far away so I won’t be alone.

Jim


#2

Hi Jim and welcome to the forum.
It’s not uncommon for it to take a while to diagnose Parkinson’s. An experienced neurologist specialising in Parkinson’s can often tell just by looking at you and if you respond to Parkinson’s meds that will be pretty good confirmation.
There are a few members of this forum from down under.
Elegant Fowl


#3

Hi Jim, i join elegant fowl in welcoming you to the forum.
Im a little surprised you have not received more posts to introduction maybe more later.
On reflection it may have been better to rabbit on about my trip to Oz here, never mind! Not wanting too much detail but where are you living now or are you still in Tasmania ?
On the subject in hand, i was started on Co Beneldopa and my tremor was under control very quickly (about two weeks from memory)
As well as AF the other symptoms we share are the gormless , empty head expression on my face and you can add sometimes with an open mouth. Not a pretty sight. unfortunately my friend the list gets longer, but hey hoe, one thing at a time.
If i can help you in any way, please just let me know and if it was a private matter its best to message it.
Best wishes
Mal.


#4

Hi Mal,
Still living in Tasmania.
I spent 9 years in the trout country working for the Hydo-Electric Commission before moving to the north coast.
I have lived in my current house overlooking the Burnie Whisky plant for 30 years and don’t want to move. I realise that I will have to move into town eventually if only for the wife’s sake but I hope to delay it as long as possible while still being fit enough to do the move.

I will see what my MRI shows up next week then discuss the options with my GP. I would like to stay off meds for now. The first med I went on for AF turned me into a zombie and I don’t want a repeat. Luckly, there are a few alternatives to try if needed.

Jim


#5

Hi Jim, I understand the move and the meds.
The only medication I take for AF is Rivaroxaban which is to thin the blood,
in fact, im just doing my weekly pharmacy task of filling my pill box so i remember to take them all on time. im up to stupid numbers now (wish i hadnt started on some).
I can hear my wife sturring upstairs thats my prompt to sighn off and start our day together.
Chat again L8r
Mal.


#6

Hi Jim,
Sorry I h

  1. List item

ad to rush away this morning , but when duty calls.
I am parti

to a dram of single malt whiskey must look for a bottle from Burnie Distillery, all though that Indefatigable at £5359.00 is just a tad outside my budget !!
.i have so much I want to talk to you about, could I ask you to please share some more about your Porche, what was it doing on the Ghan know what they say about grass is always greener, but having visited Oz im very envious of the lifestyle.
Jim, you will probably get an avalanche of posts now your theme is back on the forum, board sorry , LOL
Mal.


#7

Hi Jim
Not sure what happened there I was still editing, it looks like all the words are there
Ignore 1 itemthen join the h to the ad
The word partial is missing
Just pretend its a jigsaw
And no I have not touched a drop all day :rofl:
Mal


#8

Important things first
The Burnie Distillery goes by the name “Hellyers Road Distillery”.
I do like their ‘peated’ variety.
Tasmania has a number of new distilleries so if you did visit, there is plenty of tasting to do…

Re the Porsche.
In 1979 I bought the then 21 year old 356 Porsche. It was in bits.
I put it back together and drove it around Tasmania for a few years. I also went on a trip to the “Big Island” (the name we give the mainland of Australia). The trip took me up the east cost and across to Darwin then down the middle. At Alice Springs, I put the Porsche on the Ghan and headed to Adelaide.

It was a wonderful trip.

Some time later, I hit a kangaroo heading home after night shift and put the Porsche in the shed until I had time to fix it.
35 years later, it was still in the shed.
I decided that I would never fix it so it was sent to the auctions.
It was a sad day when it went down my drive on the back of a truck.
However.
The proceeds gave me and the wife a nice holiday in the Baltic and enough left over for another one.
I also shouted myself a bottle of the local drop to celebrate.

I have found a use for PD!
I had to take the dog to the Vets today to get his anal glands attended to. This is usually a smelly exercise and the vet said “Can you smell that?”
“No”
My sense of smell must be on the way out.
Jim


#9

Hi Jim

Well first welcome onto the forum. I also
Have experienced the long wait of diagnoses of Parkisons, lost count of trips to see the neurologist and other specialist. What I was told that like of illness Parkinson’s shows different signs in different people and this is the thing, everyone hear the word parkison and they just thing of the tremors and shaking hands and body , but there are so many more which show in some years months before. My first sign was slowness of movement . I have suffered for over 7 years or really bad constipation, which now I know is a early sign too. So yes it may take some time for them to tell. But one thing they will do first is start you on the parkison medicine and if you react positively to this the will them a result they are looking for to confirm
You do have the illness. So hang in they and I must say everyone one this forum are really helpful,
Keep us posted and all the best

Kind regards Raz


#10

Hi Jim,
Sorry for the crap posts
I spilt tea on my laptop, then tried my wife’s notepad (big fingers, little keys)
Ended up buying a new laptop.
Expensive cuppa !!

I loved the story about the Porsche and its sad demise, you obviously had a passion for it. The nearest thing I got to a sports car was a little two-seater Toyota MR2, not the latest model, but the one before that (with the frog-eyed pop up headlights) It was fun.
I have come to our little hideaway in the Dales, a few days on my own, trying to maintain a bit of independence as well as giving my wife a break and had some good news for a change. The Surgeon has confirmed he will do my second knee replacement on 3rd August. :grinning::disappointed_relieved::open_mouth:


#11

Hi Mal,
Sorry to hear about the keyboard. You can blame it on PD.
I hope your knee does better!
Jim


#12

Hi Jim

Sorry for this late response. I thought it might help your tremors if you spent some time, each day, rubbing sandpaper on the surface of a cricket ball … :wink:
Just trying to show some humour, hope things are gong well for you, take care.

Hippy


#13

Hippy,
Maybe if your lot had done the sandpaper trick with that bigger ball they were kicking around lately, things would have turned out differently.

Was that too soon?
They did do bloody well after all. (Yours not ours).

Jim


#14

Im not an umpire nor a referee
The Forum gives you a chance to see
with whom you are dealing with, its free

Now having done some homework and taken my medication
I conclude you are both Gentlemen and more than capable on this occasion
to debate the subject at hand without the sight of blood
no biting or scratching or pulling of hair
we only want the outcome to be one thats fair

I see from your backgrounds you have both had a lot to contend with
and can only guess at your stature
like me could well do without PD. However, you both have maintained something we all need is your sense of humour

I am sure when its all said and done
we will come away friends without any broken bone s


#15

Well said Mal.
Fortunately the Australian sense of humor is very similar to the English.
Jim


#16

Morning all

Firstly nicely put MacT, and yes look we all are on that boat and there is no right and wrong, ww have so much happening to us the we find it hard to understand or to take on. But we all should be able to take a joke. This forum is here for people to talk and air their concerns and get the mat much needed surport, which they are unable to get from the people surrounding them on a daily basis.please don’t fall out
Have a nice day all
Raz


#17

Jimbo

Good banter, I love it, :slightly_smiling_face:

Let’s call it a 1-1 draw (that’s an excellent Ashes result for us… haha)

Hippy


#18

Hi Hippy

Nice call !!


#19

Morning Mal,
I managed to help the wife in the kitchen today.
She was making a batch of steak and kidney pies and the recipe called for half a bottle of Guinness.
I had to work out what to do with the leftover half bottle.

It’s good to feel useful.

Jim


#20

Hi Jim;

My wife promoted me from general male skivvy {the English version, not the Australian) to KP but I still get no perks, nice one.
We are having a bit of a heatwave just now, whats it like down under?

Mal.