Showing posts with label diagnosis. Show all posts
Showing posts with label diagnosis. Show all posts

Friday, 1 May 2020

What the Dickens! I am back.....

What the Dickens! I am back.....

But for how long you are thinking?! Do enjoy it for what it is. 

It is, what it is.

Down an internet rabbit hole and  happened to stumble across my blog and thought why not crank it up again? 
Let me state to begin with, it still seems weird to say 'my blog' even in my head, it's a little like saying my Maserati or my Gucci handbag. It sounds so ostentatious!  The practice of writing thoughts and ideas helps to make sense of this crazy world we live in.  
How often will I write my blog? 
Perhaps a little more often than recently, which has been sporadic to say the least and piss poor to say it straight.

This July 12th will be 8 years, since I was diagnosed at 46 with Idiopathic Young Onset Parkinson's disease, let me break it down. Idiopathic - no known cause. Young Onset - diagnosed under 50. This will be three years after the cure was supposed to be found.
People said, "It's just around the corner", "it's in the labs now, in 5 years it will be on the market". 
Are drug companies interested in a cure, it seems too much money is made from the 10 million people worldwide living with Parkinson's (PLwP).

It is often said to me that the medication is so much better now. This is only uttered by people who have no idea.  The Gold Standard is a 50 year old drug, the more recent medications, agonists, were and still are akin to poison for some people, leading to impulsive behaviour that has wrecked many lives due to gambling, shopping, gaming, sex. 
"Agonists are like your best friend acting nice, but in the bigger picture they have an ulterior motive far more sinister than any benefit that the friendship could ever provide" - the words of someone who has been to hell and back and still climbing out of it.
"For some it works but in my opinion, structured social supports are required that extend way beyond what the medical profession can offer to monitor the participant. These supports need to look for the hidden signals as the participant can very easily deliberately hide the obvious signs. And there is a moral duty of care that isn’t being acknowledged, and those affected are too proud to publicly admit that they fell prey to the fiery forks of the devil disguised. This could never happen to me, I won’t be judged by my friends so I’ll keep it to myself"

The worldwide shortage of all forms of Sinemet has been going on for some time, it will continue to be in short supply until further notice. Sinemet is a widely used Parkinson's medication, marketed by Merck, Sharp & Dohme (Australia) who are keeping doctors informed. The shortage is due to a problem at the manufacturer's level. The patients prescribed this medication are advised to find a substitute. 

This will not be explained away with a nice ending. 

It is what it is. 


My current work in progress, The Cornflower Quilt it is made in the English Paper Piecing method and designed by Jodi Godfrey.  A long term project perfect for the Covid19 lockdown, getting close to one quarter way there.

Friday, 5 August 2016

Expect the unexpected


Sometimes, life throws you a curve ball, and what can you do? Depending on what the situation is, and the magnitude of the shock at the time of revelation, was it totally unexpected?

I refer to my diagnosis of Young Onset Parkinsons disease 12-7-2012, for me this was an immense shock. I knew nothing about Parkinsons. Thinking back, the signs were there a long time before the diagnosis.... as long as six years before I had pins hand needles in my left hand, I remember this because I was making craft for a school fete with a wonderful group of women at the time. Too busy to think more of a tiny thing like pins and needles. The next thing was a sore, stiff left shoulder and restricted movement, twas not a big deal just a minor inconvenience. In 2011, I realised my walking was a little different but didn't analyse it too much, the big thing was yet to come. My sister and I went to a play, I cant remember the name of it, the night we went there was a large group of hearing impaired people in the audience and AUSLAN signing. Clapping was not the way to show appreciation, it was both hands being waved in a fast fashion. I tried this, but only my right hand could move, the left wouldn't, I looked at it and willed it to move. Nothing! Very soon after I went to the doctor and asked for a referral to a good physiotherapist and a scan for my shoulder. The scan showed only a minor issue, the Physio put me through strength tests and walking and asked,  "How long have you had a limp?" and said she was pretty sure the problem was either a slight stroke or Parkinsons and I must go back to the GP and get a referral for a Nuerologist. Oh how I cried that night. The GP read the letter from the Physio and got me to walk around a bit, and said "no I don't see it, no not Parkinsons". I insisted on a referral to a Nuerologist. After a wait of three months for an appointment with a Nuerologist, the diagnosis of Idiopathic Young Onset Parkinsons was given, a prescription and the news that if the medication worked it was the only way of confirming diagnosis. No other information, no promised book. So much crying ensued, but not till I got outside the office. The story is similar for many for my friends living with Parkinsons. That's why I talk about it and write about it.
In 1969, Elizabeth Kubler-Ross outlined in her book, "On Death and Dying" the five stages of grief: Denial, anger, bargaining, depression and acceptance. I believe I have come through all that and onto acceptance.

Wednesday Radioparkies show: Whistle Songs Part 2
https://www.mixcloud.com/radioparkieswebradio/radioshow-dj-madonna-on-03-08-2016/

Fabulous playlist on Whistle Songs Part 2, why so fabulous? It's the input from my friends that makes such a diverse and fun list. Special guest, 60 year old Mick Bourke from Central Coast, New South Wales. I call him 'strongman' because he can hold a plank for 40 minutes. What's his secret? Amazing core strength and mental fortitude. Do you remember the old Ab Roller or Ab Wheel? Was it was a K-Tel product? Mick has Parkinsons, has done a lot of body rebuilding and is training for a World Record attempt for a Weighted Plank at the upcoming NSW Unity Walk. Below is a link to his fundraising page. Good luck Mick.
https://www.facebook.com/l.php?u=https%3A%2F%2Fparkinsonsnsw.gofundraise.com.au%2Fpage%2FMickBourke&h=VAQG45oQD
Friday Radioparkies show: The N List - Never give up
https://www.mixcloud.com/radioparkieswebradio/radioshow-dj-madonna-on-05-08-2016/

Let your voice be heard!! Share your PD story, it really is helpful to hear others perspectives.

Friday, 24 June 2016

Alphabet Songs



The I List

https://www.mixcloud.com/radioparkieswebradio/radioshow-dj-madonna-on-24-06-2016/

On the playlist, 'I List', songs and artists beginning with I.....I believe I can fly, Imagine, I need you tonight, I still haven't found what I'm looking for.

New segment - Joke of the week as told by Matt Brady

Talk by Janice Rowan, optimist, children's storyteller, parky poet.


Apps to try.

Medicine X Parkinson's explained - information for newly diagnosed

Charity Miles - exercise tracker

Medisafe - medication reminder


Be a guest on my show, everyone has a story to share, it's a great experience. Send an email to parkies@live.be

Let Your Voice Be Heard

www.radioparkies.com

Friday, 17 June 2016

The 'H List'







Recording of the Friday morning show.

Friday morning 8am - 9am, Australia Eastern Standard Time. There is a cluster of radioparkies DJs bringing fabulous shows. This week five DJs in a row starting with DJSpilly Belgium at 5am, DJDavid UK at 6am, DJJimmy USA at 7am, DJMadonna AUSTRALIA at 8am, DJLaura USA at 9am.

https://www.mixcloud.com/radioparkieswebradio/radioshow-dj-madonna-on-17-06-2016/

Playlist

Hanson, Harlem Globetrotters, Hallelujah, Happy, Heart of Glass, Help is on the Way, Hey Ya!, Here Comes Your Man, etc.

Talk by Dave Morse - shipwright, Photographer, legend

Let Your Voice Be Heard!

Enjoy your weekend.

 P.S. What's the collective noun for a group of DJs? A deck? A studio? A collections?