I can see clearly now


Thursday, June 28, 2012

Do you reveal Parkinson's on your online dating profile.

Believe it or not, when I decided to hit RSVP, EHarmony, Oasis and yes I confess Adult Match Maker I initially put that I had Parkinson's on my profile. I'm not going to hide anything I thought. Didn't take me long to say f%$# that - what they don't know won't hurt them. THAT'S when the young men started contacting me. If you weren't a cougar before you dipped your toe into the online dating world, you certainly emerge as one. I did, however give some of them a 'talking to' saying "Listen , young man, don't waste my time and go and find someone your own age to play with? Seriously what would you say 'apres sex' to a 25 year old?

This rambling does bring me to an issue that I'm sure is not often discussed in Parkinson's forums and that is the effect of Parkinson's and other neurological diseases on sexual function.

It is quite common knowledge that one of the Parkinson's drugs, a dopamine agonist or a drug that stimulates the dopamine receptors to produce what little dopamine there is left in a Parky brain ( as opposed to other types of drugs that simply replace the dopamine), can turn you into a sex addict. Honestly , when you have gone through menopause, that doesn't seem such a bad thing!! (Not to belittle the terrible affect this drug can have on people's lives)

Needless to say I think this drug has helped keep my post menopausal sex drive alive. Too much information - I'm sorry but this is what this blog is about - the social and never talked about affects of Parkinson's. With more and more people being diagnosed at a much younger age these issues need to be brought to the surface. There is much discussion on the use of drugs, the research , how hard it is for the carers (if you are lucky enough to have one!), deep brain stimulation etc but not about how to work with Parkinson's, how to date with Parkinson's, starting a new relationship with the weight of further degeneration looming.

All this is heavy shit man and is always at the back of your mind and things like exercise, living life to the full, is still at the front but there are those moments when the dark side comes through and we must talk about these things.

Sunday, June 24, 2012

Milking it for all its worth

As I was leaving a disabled parking spot in Coogee, Sydney one afternoon a jealous older woman yelled at me asking if I had my Granny's disabled sticker. I was so incensed that I drove around the block and was going to give her a serve but fortunately for her she had left.

I HAVE A DISABLED PARKING STICKER and I never want to give it up. When I was trawling the dating sites my big joke was to put it on my profile as an attractive quality. I don't hesitate to use it. Hey I'VE GOT PARKINSON'S. I'm enitled to a disabled parking sticker although I'm not really disabled in the sense of the word that most of you imagine (Yet).

Different people have different reactions to having a chronic or degenerative condition. They either hide it from everyone so as not to invite sympathy or special behaviour. Not me. I milk it for everything that I can. This is not to say that I whinge and whine about having Parkinson's. It means that I get every benefit I'm entitled to without embarrassment. One thing I must add here is that I have a very slow degenerating strain of Parkinson's. Every body has a very personal Parkinson's. No two people have exactly the same symptoms. Effectively I can still  do most things I have always done albeit a little slower.

Recently I had a music night at my house where everyone had to perform something. My contribution was a dance called "The Parkinson" which of course involved shaking all body parts to the wonderful music Bombora. It was a hit as the whole room was up shaking to the music. It was hilarous anda very irreverent attitude which in my opinion is essential.

Parkinson's vaccine

TEN people with Parkinson's disease this week received injections of the first vaccine
 aimed at combating the condition called 

PD01A, the drug primes the body's immune system to destroy alpha-synuclein, a protein thought to trigger the disease by
accumulating in the brain and disrupting dopamine production.Affiris, the company in Vienna, Austria, that developed 
the vaccine, says it is the first treatment to target the cause of the disease. "When it forms clumps in cells, alpha-synuclein
 disrupts normal levels of dopamine by locking it inside cells that produce it. It is also toxic, killing neurons and their connections,"
 says Mandler Markus, head of preclinical development at the company.Most existing treatments only ease symptoms by
 boosting dopamine levels.In all, 32 people will receive the vaccine in the first trial on humans. The objective is to ensure the vaccine
 is safe, but researchers will also monitor for signs of improvement in symptoms.

Friday, June 22, 2012

Coping with Parkinson's as an eternal teenager

Welcome all to my nth blog. I think I have become a serial blogger. This one is very personal and will reveal a lot me. I don't want to do this because I am such a narcissist that I want everyone to see how fabulously interesting I am. Nor do I want to gaze at myself in the mirror and wonder at the marvel of my existence. I merely want to explore the social side of living with Parkinson's as a 'young' person.
I was diagnosed about 8 or so yeas ago and am now 56. During that time I have cared for a sick husband, grieved when my husband died, kept a small business going, raised a daughter who is currently 16 and  recently started a new relationship with a younger man.

My years of caring for a sick husband, then coping with his death may have delayed  my 'mid-life' crisis which is possibly what I am experiencing now. My daughter is becoming independent and revving up to leave home, my Parkinson's is advancing (albeit very slowly), I am in love with a man who forces me to question everything but I am scared about the future while at the same time realising that it is today I must enjoy.

All sound familiar. I'm sure that there a millions of you feeling the same, especially the baby boomers and their philosophy of eternal youth. (How many still play "Talking about my Generation'?!!!!

So as my hand tremors over the keys and my right hand takes a long time to 'right click' I would like this blog to be a venue for sharing how to keep partying well into your 50's and cope with Parkinson's.

Ther are questions of dealing with work and work colleagues, communicating with children, having a fulfilling sex life and having the confidence to do the things you want to do.

There are also questions of organising your life, finances, living arangements to be prepared for the eventuality that the condition will get worrse. Of course there is the drugs and medications issue and the most important one for me is exercise and preventing further degeneration.

I'll be posting links to chat groups, support groups, the latest research, where to get help and most importantly stories on how to ermain a good time, living, breathing funster with Parkinson's.