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Wednesday, July 25, 2012

Do I burn the candle at both ends or try and stay healthy?

It's hard to know whether to party, party, party or stay healthy and try and maintain good health and supposedly a better quality of life. By this I mean stop drinking, eat grits and grains, go to bed early etc etc. The Parkinson's seems to advance no matter what one does to slow down the degeneration.

Some days I am full of that wonderful positivity and I am sure that I will be able to maintain my health for a long time but other days that cloud of grief for my lost future hangs ominously over my head.

Unfortunately today is one of those days.

The body is stiff and sore from the moment you wake up and you just want somebody to make it all go away or just care for you. Instead daughter must go to school, dog fed, start working or if it is too much just go back to bed and try and pretend it is all not happening.

So back to my original statement of whether to party or not.

If I mention my moods to my neurologist he immediately wants to send me to a shrink to go on anti-depressants but I am already on a shitload of drugs and couldn't really face any more - the L-Dopa, dopamine agonists, vitamins and a couple of others for a couple of other health issues. Some days you just want to throw the drug basket into the bin.

Anyway I have yoga in an hour so my mood will go from black to a more calming colour and I will be OK.

I have learnt to keep this all in (but today I am sharing it with the world!!). If any mention is made to my neuro he immediately wants to send me to a shrink and be put on anti-depressants. More drugs NO THANKS. Yes we all know that Parkinson's physically can cause depression but usually it is just that one feels down because you have a degenerative neurological condition and are aching all over. (In all honesty, who doesn't in their late fifties!!)

So I play the Pollyanna Glad Game and say "Gee aren't I lucky to have a slowly degenerating strain of Parkinson's".




Friday, July 6, 2012

Working and Parkinson's

We all want to remain as participating members of the community but on the other hand do you work or retire young thus enabling you to do these things that you always wanted to do before it's too late.

If you can arrange it, part-time work is the answer and even better, part-time working from home. When I was diagnosed with Parkinson's I took a medical retirement from my governmet job which fortunately gave me enough to pay off my mortgage and set up  asmall consultancy where I could work part time and at my own pace. It was probably the most sensible thing I have done in my whole life!!!

If i have a lot of energy i can do more work and if my energy wanes I can do less.

I can go to yoga, the gym and have rest breaks which are vitally important if you want to be able to sustain your working life for a bit longer.

I find that when that dreadful sudden hit of tiredness descends you simply must lie down and rest because working or even thinking is impossible.

This brings me to the main message of this post and that is planning. When I was initially diagnosed I started my 5 year plans - things like retirement, sell the house etc. When my husband died my plans were derailed but I have taken the idea back on.

So planning is my number one message (after exercise).

I did, however, want to explore a little the issues around working and Parkinson's. It has traditionally been thought of as an old people's disease so working was never an issue. Now with many more people being diagnosed with Young Onset Parkinsons's , dealing with it in a physical and burearucratic way has become vey real. Fortunately when I was working full time I was working in a very supportive environment and again true to my 'milking it for all it's worth' philosophy used it if I needed to move to a centre close to home and not travel as far. I'm sure it's different for many others who may feel the need to hide their Parkinson's from work mates and bosses in case they will be discriminated against or told to leave work.

In this day and age of OH&S requirements surely there is a type of light duties for an employee with Parkinson's.

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.