Friday, September 21, 2012

My Dad, The Dude


Dapper Dad

I love this photo of dad... I had not seen it until I was editing all our stuff in preparation for the move overseas last year.  Oh to have lived in that era of fabulous cars and clothes!

Not sure there is much news to add since last time.  When I visited on Tuesday, dad was still sitting in a water chair to reduce the stress on his pelvic fracture while it recovers. I asked him how he was doing.  He went to say something, then cleared his throat like he often does and then said, 'Pretty well thanks.' At least that's what I think he said. With each fall, he seems to lose more communication. I can't hardly understand him any more.

My dear sweet dad, who was once so big and strong; now too weak and frail to do anything for himself and that was his comment. "Pretty well, thanks".  I have been trying not to think about it, but writing this now brings it all back.  I feel so helpless and useless in the face of this disease, as he would as well.

A week or so ago, I posted about following The Tanaka Trimmer as he walks down from Brisbane to Sydney to raise money for Parkinson's and dementia. His nan has Parkinson's and told him she was not sure she wanted to reach her next birthday. This wretched disease steals all dignity, cognition, ability. He felt at loose ends as to what to do for her, so he is doing this walk to raise awareness. I feel at a loss as to what to do for dad, so I write out my frustration and sadness at this nasty disease.

The Tanaka Trimmer will be doing the final leg of his walk over the Harbour Bridge and into Martin Place at the end of next week. I plan to join the group on dad's behalf.  I feel helpless in light of the whole situation. Walking for awareness makes me feel like I can do something in some small way.  The final walk starts at 7am on the other side of town.  If you know me at all, you know I am usually counting sheep at this time of day.  Nevertheless... I considered all that dad puts up with in a day, and the least I can do is get up early one day... wish me luck!

Donate to the cause: http://www.mycause.com.au/mycause/raise_money/fundraise.php?id=53994
Facebook event: https://www.facebook.com/events/391951254206091/

Friday, September 14, 2012

RUOK? Day

Yesterday was a national day of action, R U OK? day.  (I did not get around to posting yesterday... "Are you ok?" "No, I'm nursing anobber code, <sniiiff>.")  I have not heard of RUOK Day before; "The Foundation aims to prevent isolation by empowering people to support each other through life’s ups and downs." 

It made me think again of everyone that asked me that question when I was (am) going through this experience with dad.  Checking to see if I was ok; making meals for me, dropping off little gifts, bringing flowers, sending support emails, taking me out for coffee, dinners out, providing comic relief!  I do not think I would have survived the experience if it had not been for the fabulous support group of some amazing people. 

I like what Hugh Jackman has to say in the clip below.  (Haha... he could be speaking Greek and I would still be nodding my head!)



Also... here is a shot of a large group of people on Bondi Beach forming the letters RUOK?

In other queries... is dad ok!?  Since you asked; I was away last weekend, and then came back to a a couple of funny little bugs.  I have not wanted to pass that around the nursing home!  I did a sneaky stop in Wednesday afternoon to say 'Hi'.  He is still in recovery mode... certainly not as spry as he was three weeks ago before he fell.
He did ask me if I had brought anything. 
"Chocolates?" I asked.
"No... something from you."
"Ah... you want me to make you something?"
Head nod.
Haha... he doesn't miss a beat, that one!  Seems like he is recovering quite nicely.

Thursday, September 6, 2012

Trent's Tanaka Trim

Back to raising awareness for Parkinson's... still on Twitter the other day, I randomly searched "Parkinson's Australia" to see what I could find - as you do!  That is how I came across the "Trent's Tanaka Trim".  He just started his trek from Brisbane to Sydney armed with a brush cutter! His beloved nan is struggling with Parkinson's Disease.  Rather than sit back and feel helpless (which is how you feel when Parkinson's is slowly but surely tightening it's grip on a loved one), he is putting his energy into action and walking to raise awareness and funds for Parkinson's Disease and depression.  Reading through his letter, I was a little emotional.   You can see why when you read his email to family and friends as to why he is walking ... link to the letter here.  His nan described her symptoms to him; how she can't sleep, how she can't eat, how she aches, how she has no independance, how she feels that everyone is looking at her.  Life has lost it's pleasure.  It was a reminder to me of how dad would feel.  He doesn't say as much to me, so I don't put myself in his shoes very often... but really... this disease is horrid!

I have been following the journey on Twitter and Facebook... and it was interesting to see the signposts as he walks down the coast.  Byron Bay, Lismore, Ballina... those are all places of dad's childhood.  I just thought it was neat that the Tanaka Walker is walking to raise money for Parkinson's and is walking through dad's childhood haunts!

Anyway.

If you wish to donate to his fund - Shake it Up Foundation (Parkinson's) and Beyond Blue (depression), you can do so on his Cause page here.  He is looking to raise $50,000 and has a long way to go.

Google link to the journey: https://docs.google.com/spreadsheet/ccc?key=0AqVb3f2i63WRdEM4eUtKYXZsbFhYSUVKUFBmV2hIcFE#gid=0

Twitter feed: https://twitter.com/TheTanakaWalker
Facebook page: http://www.facebook.com/thetanakawalk

Up the Incline

Back up the incline of the emotional roller coaster we go!  Dad is on the mend... sitting up and alert, though still having problems with his motor skills.  The chair he is sitting in doesn't help matters... he is kind of sunk back, which makes getting to the table impossible.  Dinner was an awkward procedure, but I was not allowed to help!  Nope... he was doing this one on his own.  Fine by me.  (Ah... those teenage mome

nts come rushing back... "Fine then.  Be like that.  See if I care!")  He's nothing if not determined.  There goes the roller coaster of emotion again.  After worrying, fretting and analyzing for the past week and a half, I was almost giddy with relief when walking away from the home.  You would think I would be used to these up and downs of dads recovery, having gone through it how many times?!  But nope... each time is like the first time.  Dare I say it... here's hoping there are smooth roads ahead for a while.

Wednesday, September 5, 2012

Recovery Mode

My parents came from a generation where you didn't discuss your feelings in public.  Or in private, come to think of it.  You kept your mouth closed and suffered in silence.  Then came our generation with a thirst for knowledge and questioned everything.  I often think of how different my childhood was from my parents.  My parents were born in two different countries, but both from small rural communities.  My mom could never understand the trend for all things vintage and retro.  She grew up with a well in the yard and often said there was nothing romantic about pumping your own water!  While she was painting the toenails of chickens in her Canadian backyard, dad was sending ferrets down rabbit holes in his Australian backyard.  Dad didn't finish high school, but rather, went off to trade school.  Mom graduated with one other person.  I graduated with 350 other people.  I don't even know if either mom or dad had a telephone in their house in the 40s!?  We had the Internet and access to information around the world.  Needless to say, a lot of change happened between the generations.

Often heard at the dinner table was dad asking me, "Do you have to talk all the time?  Can't we have a bit of peace and quiet!?"  Well, yes, I do have to talk all the time.  I have things to say!  And not only myself, but my brothers as well.  I do recall the dinner table becoming quite boisterous as we all tried to talk over one another, mom chiming in when he could and dad eating in silence!

The above train of thoughts came to me as I think of dad sitting in his care home, living daily with the pain and angst of Parkinson's Disease.  Still, he suffers in silence.  His nurses told me the other day they reckon he's still in a lot of pain with the broken bone... they ask him how he's feeling and he says he's ok, but when they go to move him, they can tell by the look on his face he is in pain.  So here I am... making my voice heard for my dad who cannot make himself be heard.

I have not written an update until I had a better idea as to what was going on.  Following the great visit on Sunday, I stopped in on Monday to pick dad up for the Father's Day surprise.  To my surprise, he was konked out in a water chair.  I was informed by the staff that they suspected dad had had a mini stroke and that they were waiting for the doctor to visit that afternoon.  Say WHAAAAT!?  More worry!?

Needless to say, I have been up and down the emotional roller coaster since then.  Here is what I can deduce, based on previous falls/recoveries and in speaking with dad's nurses.  (I really need to tally how many bones dad has broken on my watch... are we up to 10!?)  Dad fell, was in pain, was X-rayed by mobile X-ray unit, found a broken bone in the pelvic region, sent to ER for more X-rays, sent home again as they couldn't do anything for him there.  They have given medication for the pain and it has knocked him out.  He fell asleep in his chair, off to the side, as he does... this presented stroke-like symptoms... body pulling to the right.  His speech is slurred because of the Parkinson's/medication/drowsiness.  He can still swallow, speak (when alert and sitting up), which makes me think that all these things combined have presented with TIA symptoms.  I am not a doctor, so this is only my educated guess! 

I visited him this afternoon and he is still very much out of it.  Though he knows who I am and was attempting a joke or two and another attempt at conversation.  However, when he is lying back, it is almost impossible to understand what he is saying.  It was a gorgeous spring day here in Sydney, so I opened up his patio door and turned his chair to overlook the view of the garden and feel the spring breeze.

Ah yes, the joys of Parkinson's/dementia/osteoporosis.  We are coming up on a year since the first big fall that landed him in hospital right before we were to move.  His recovery now is very similar to then: bright and sparky for the first bit, then drops right off the map while his body takes up all his energy to heal.  As usual, I will continue to post updates as I can.  I hope to possibly take some work there tomorrow and sit with him in the garden for a longer period of time than today.  Will update more after that time.

From Wikipedia on osteoporosis...
Falls risk
The increased risk of falling associated with aging leads to fractures of the wrist, spine, and hip. The risk of falling, in turn, is increased by impaired eyesight due to any cause (e.g. glaucoma, macular degeneration), balance disorder, movement disorders (e.g. Parkinson's disease), dementia, and sarcopenia (age-related loss of skeletal muscle). Collapse (transient loss of postural tone with or without loss of consciousness) leads to a significant risk of falls; causes of syncope are manifold, but may include cardiac arrhythmias (irregular heart beat), vasovagal syncope, orthostatic hypotension (abnormal drop in blood pressure on standing up), and seizures. Removal of obstacles and loose carpets in the living environment may substantially reduce falls. Those with previous falls, as well as those with gait or balance disorders, are most at risk.

Parkinson's Humor

Continuing on with Parkinson's Awareness; today I am introducing a funny lady who goes by the name of Yuma Bev.  I 'met' Yuma Bev through Twitter, where she was tweeting about her own journey with Parkinson's Disease with a sense of humor. I envied her her laughter, as at the time, I was having a difficult time seeing any humor in our own situation. Yuma Bev was diagnosed with Young Onset Parkinson's Disease at 47, finally being diagnosed with the disease after struggling with it since her late 30s.

She has recently guest blogged for the Michael J Fox Foundation, writing a piece on Deep Brain Stimulation and another piece on Music Therapy.

Yuma Bev recently published her book, Parkinson's Humor on living and laughing with Parkinson's Disease. It is available on ebook through Amazon, Barnes and Noble, and Smash Words.  For a print copy, you can request through Yuma Bev directly at yumabev@gmail.com. All profits will be donated to Parkinson's. (Books are also available for fundraising efforts.)

You can follow Yuma Bev on Twitter: @YumaBev and/or her website: Parkinson's Humor.

Monday, September 3, 2012

Shake It Up


It's not just the shakes - "We're in the business to go out of business." Short video clip from the Shake It Up Parkinson's Foundation to give a small idea of what it is like to have Parkinson's Disease.

Sunday, September 2, 2012

Update # 54,459

Some days it feels like I am a bit "dad-obsessed"... but bear with me!  Following the afternoon/evening at ER on Friday, I spend Saturday assisting on a wedding.  By Saturday night, you pretty much had to scrape me off the floor, I was that useless!  Fast forward to Sunday afternoon and I stopped in to see dad for Father's Day.  If he wasn't... you guessed it... trying to escape from his bed again!  I did not know what I would find, given his confused and agitated state when I left him on Friday.  When the nurses came in to help him out of bed, they told me he'd been chatty that day.  And if he wasn't bright eyed and bushy-tailed!  The best I have seen him in quite a while.  The change of scenery must have agreed with him!  I had better conversation and comprehension with him than I have had in a while.  I had told him I couldn't stay long, but that I would be back tomorrow for the Father's Day surprise.  A little while later he said, "Well, I guess it's time you got going then."  Wow... he remembered and had a comprehension of time.  I was a bit loathe to leave with him in such good spirits.  I just hope he is having a good day tomorrow as well, so he can enjoy his surprise...

The start of Parkinson's Awareness Week, 2-9 September, coincides nicely with Father's Day.  Now, I am having second doubts that it is Parkinson's Awareness week, but I read it on the Government of Australia website, so I am going with that.  I was so angry with the disease last week, and dad voiced his disappointment in the disease today.  Anger solves nothing, so I am going to redirect that energy and use this platform this week to bring awareness to the disease. 

The following is an exerpt from Michael J Fox Foundation on what Parkinson's Disease is.  The original link can be found here.

Parkinson's disease is a chronic, degenerative neurological disorder that affects one in 100 people over age 60. While the average age at onset is 60, people have been diagnosed as young as 18.
Parkinson's disease was first characterized extensively by an English doctor, James Parkinson, in 1817. Today, we understand Parkinson's disease to be a disorder of the central nervous system that results from the loss of cells in various parts of the brain, including a region called the substantia nigra. The substantia nigra cells produce dopamine, a chemical messenger responsible for transmitting signals within the brain that allow for coordination of movement. Loss of dopamine causes neurons to fire without normal control, leaving patients less able to direct or control their movement. Parkinson's disease is one of several diseases categorized by clinicians as movement disorders.