11/11/11

11/11/11 is Remembrance Day here in Australia. And whilst I stood for a minute's silence at 11am this morning in respect for our fallen soldiers who gave their lives to our freedom, I could not help but think of how today was to be a significant day in my life.
11/11/11was my original day for my DBS. Fortunately I was moved forward 3 months, and had it done on 5/8/11 instead.
Whilst I am happy that it is all behind me, my wig is no longer necessary as summer approaches, etc, my thoughts are with Leonie from my Y@P group who took my spot. Leonie, you are in good hands with the same team as I had. I wish you luck.
People Living with Parkinson's (PLWP) all know that no two people are the same; everyone has different symptoms, no 2 people I ever met took the same drugs.
I am writing this because I just read a comment from another Y@P member.
Ric wrote"This post has really made my day/week/year. I'm quite encouraged by the results you've seen, and I'm happy that you have found real healing - FINALLY. If my surgery goes as well as yours I'm going to run my wife Jennifer into the ground with outdoor activities. Here's to a new life and that it sticks around."
Ric, I really hope that your experience is as positive as mine. I am looking forward to hearing how both you and Leonie went when we meet next year at a Y@P meeting, and you are both 3 months plus down the road.
I am glad that you have enjoyed following this blog, and that you and others have gained something from my posts. I admire your optimism, but keep in mind that DBS is not a miracle cure. If it goes well, it can make a huge difference to a person's quality of life.
When I asked Professor Williams how good can I hope to be, he answered, "As good as you are when your meds are functioning at their best".
And that in itself varies from person to person.

Nice to be Appreciated

Today at The Parkinson's Victoria AGM, I was awarded with a 5 Year Certificate of Service, "In Recognition of Outstanding Service Supporting the Mission of Parkinson's Victoria." Always nice to be appreciated.
I received a certificate and a Parkinson's Rose bush.
An added surprise was that my 'old' neuro, Professor Mal Horne was guest speaker, so I was able to thank him personally for setting me on the DBS path.
Thanks for the pic, Moira.

Back on the Bike

The Story So Far....
For those who don't know my biking history... I had not been on a bike for some years, when I was approached by Parkinson's Victoria to take part in The Vietnam Challenge; a fundraiser that took place in Vietnam. Details can be viewed at http://parkinsonschallenge.blogspot.com/.

With Brendan and Fred; we were the only riders with PD in the group.

Anyway, my friend Ingrid took on the role of training me, and we have been riding for 3 years, right through the year, every Wednesday, summer, winter. Until this year. I started to lose my confidence, slowing down, turning back, and then Ingrid injured her groin, making riding impossible for her. So I had not been on a bike since before Easter. (7 months).
The Story Now...
So, post DBS, with Spring weather tempting me, I have been wanting to ride again. But not sure how I'd go.... and with my mentor still out of action, have been asking various past riding partners to come with me. Though I have had several offers, nothing has eventuated. 2 weeks ago, Yon (hubby) accompanied me, but weather forced us to abandon and have brunch instead.
Sick and tired of excuses (I know people are busy), I decided to go out alone for the first time. The day was perfect, and I'd missed too many of them already.
I was apprehensive; not sure how I'd be, so decided to go to St Kilda Beach,where there is a straight stretch of about 3 km to Port Melbourne.
I hitched the bike to the car, was ready to go, when my son Ronnie emerged also decked out in riding gear. Ronnie has become a serious rider, and is training for marathons. His intention was to ride to Franston and back; an 80km round trip on the road along the beach in the opposite direction.
When he heard that I was going out alone, Ronnie insisted on abandoning his plan and accompanying me.
We rode to Port Melbourne and back. (about 6km total).
How was it? Like getting back on a bike! i was fine. Need to fitten up, but fine.
I now look forward to my 35km round trips to The City from Brighton.
Anyone want to join me?

Three Months On

So.... how am I doing 3 months on?
Pretty well.
I have cut down my meds to practically nothing....
From Stalvo                           4 times a day
         Medapar (Sinnemet) 1/4 4 times a day
         Sifrol  (Mirapex)            1ce a day
         Symmeryl                      1ce a day
         Serrequel                  1/2 at night

To    1/2 strengh Stalevo         3 times a day.  

That's it.

I just gave up the Serrequel a few nights ago.
I took it for sleeping, but though I got my 8 hours, it gave me horrible vivid dreams and made me grind my teeth really badly.
So though I am writing this at 5am, I am happier having given it up.

I have decreased my visits to my neurologist from 2 weekly to 2 monthly; we feel we are almost there with the fine tuning.

I have no freezing any more, no toe curling and no dyskenesias, (involuntary movements.)

My hair is growing back.
So overall, all is good.

The weather is hotting up. STILL not on my bike yet; mainly because I have noone to ride with, but I hope to be on soon, and will blog then.