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Monday, January 30, 2012

Not happy (in) Jan

I and am very aware of the 2 different audiences who may read his blog; 1. People Living with Parkinson's, many who are considering DBS, and 2. My fabulous and concerned friends, and so I try my best to keep a positive outlook. However, I feel that I would not be doing either groups justice if I only painted the good, whilst experiencing bad.
This blog reflects my feelings at this moment; of course I expect it to be temporary, and to be fixed.
I have been feeling like s**t for the past 2 months.
Now don't think that I regret DBS, or anything like that; no freezing, toe curling or involuntary movements is great.
My walking has been an issue for a while. I slide around on polished floors, shuffle on carpeted ones, and find that walking Molly around the block is an effort.
Yon, (my ever patient husband) drags we around Princess Park with Molly about 3 times a week but I am relying more and more on his arm.
Not having my 'dyskenesic daily workout' any more, has resulted in me putting on weight.
Whilst pilates and water aerobics are in the pipeline, the thought of exercise is daunting.
And my confidence is down.
Bike riding is shortened or halted, and things like 'chuking a U turn', leave me in a state of panic.
My mood for the past 2 months has been 'flat'. If someone else tells me thats normal, I'll flatten THEM!
The temperature has reached about mid 30sC or high 90sF for 5 consecutive days.
Last night things came to a head whilst I attended Yoni and Lauren's wedding.
Yoni was the 1st child in our crowd to be born. His mother, Lynda has been a close friend since we met in grade 1. Lynda was just 22 when she had Yoni; the eldest of 4 gorgeous children, and I was most excited to attend his wedding.
THe first dance bracket I managed; dancing with women only, a slow shuffle with so many on dance floor. By the 2nd dance bracket, I just couldn't do it, and sat it out with Yon.
The third was mixed dancing, and it was then that I lost it. I really wanted to dance, but couldn't. As everyone gyrated enthusiastically around me, I clung to Yon and couldn't move my feet. They were glued to the floor, and I could only manage a small step here or there, without moving my feet much.
I sat down and the tears flowed.
The wedding was beautiful in all ways except for the way I felt, and hopefully no-one noticed my predicament. Except of course Anita, another very 'old' and dear school friend, always perceptive and supportive.
I really hate to sound so negative.
I go to see my neurologist tomorrow, and hopefully we will be able to resolve this, and my next blog will be a positive one.
Lynda's Aunt & I wore the same dress!

Sunday, January 1, 2012

A different type of "off"

I haven't blogged lately, because I have not been feeling great, and I don't like to complain.
For the last 2 weeks or longer, I have been struggling.
I have been dragging my feet, finding it difficult to walk, getting tired from walking, and not wanting to do everyday tasks such as cooking and cleaning and accounts...OK, Ok, more so than usual!
In that period of time, I have tried to soldier on as best as I can. A trip to Chadstone (Melbourne's largest shopping Mall) on my own, saw me sliding across the floors, and taking my car from one end to another. I drove, but made sure I was home by 3pm.
I have ridden my bike with an ever patient Ingrid, but it has been a struggle, and we have only gone 1/3 as far as we used to. Our short break to Halls Gap resulted in my husband hiking up the mountain with out  me; I had no confidence.
I attributed all this to being either 'undermedicated' or 'underzapped'.
As my appointments with my neurologist are now 2 monthly, instead of fortnightly, I decided to wait for my early January appointment, and nut it out then.
Friday night I felt absolutely flat.
I discovered that my monitor read my device as flat, and watched the complete season of Downton Abbey Season 2 while I recharged it.
When it finally got to 100% recharge, I felt no better.
Looking at the monitor, I noticed the word "off" flashing...
Yep, the device was off, and has been for at least 2 weeks, maybe longer.
I turned it on and immediately felt a rush of electricity go through me.
Suddenly I felt great; completely different.
The prospect of going to a New Years Eve BBQ turned from an attitude of apathy to one of looking forward. I was back to my normal self. (whatever that is...)
A lesson is to be learnt here. The manual clearly states that one should check the device daily with the monitor. As I couldn't change my settings, (I presumed that the neuorlogist had set the perimeters so I couldn't), I didn't bother checking.
I must have pushed the gray 'Off" button, instead of the orange one next to it which displays information. This is easy to do as it is placed against the device, and I can't see what I am doing.
Anyway, all is good now...think I'll go sort out that linen cupboard that has been bugging me..
Happy New Year to all, may 2012 be a great one!