SAY WHAT YOU WILL

Saturday 23 April 2011:  4 years 7 months on … ADVANTAGE CBD

In HOME AFFAIRS, written last year in March, I discussed how difficult it was for me to manage my “normal” responsibilities as a husband and father against the background of ever-deteriorating physical and mental abilities (and ever-deteriorating service levels in our country!).

A year on, this is becoming my biggest challenge. My physical abilities have deteriorated further, my mind and my short-term memory are playing all sorts of tricks, my emotions are running riot, my temper is explosive and my well-being is at an all-time low.

There are problems at the bank that need to be sorted out, and their standards have gone from bad to worse. The municipality appears to be non-functional and the work on the sewerage pipes that has gone on in our garden (and the accompanying damage to our garden) over the last few months does not appear to get finalised. The car has to go back five times to the garage to have the air-conditioner repaired properly.  The school ignores requests of more than a year, refuses meetings and does not answer correspondence. The home maintenance never stops! The family demands become more.

I have often said that it is easier for me to handle my illness than it is to handle the daily strain of living.

We live in a tense home environment and even the noise from the vacuum cleaner, a strong wind or a wrong word sets me off. I feel as if I am no longer in control of anything – not my environment and definitely not my body.

And all this comes to a head this week just before the Easter Weekend. I decided I needed time out, so when the family left for St Francis Bay on Thursday afternoon, I opted to stay home alone.

SOMETIMES WE NEED TO FALL APART …

We don’t always have to be strong. Sometimes our strength is expressed in being vulnerable. Sometimes we need to fall apart to regroup and stay on track. We all have days when we cannot push any harder, cannot hold back self-doubt, cannot stop focussing on fear, and cannot be strong.

There are days when we cannot focus on being responsible. Sometimes we cry in front of people. We expose our tiredness, irritability, or anger.

THOSE DAYS ARE OKAY!

Part of taking care of ourselves means we give ourselves permission to” fall apart” when we need to. We do not need to be perpetual towers of strength.

WE ARE STRONG. We have proven that.

Our strength will continue if we allow us the courage to feel scared, weak, and vulnerable when we need to experience those feelings.

Today, help me to know that it is okay to allow myself to be human. Help me to not feel guilty or punish myself when I need to “fall apart”.

Mike Lacey-Smith says:

“We live in a noisy world. It is noisy physically, emotionally and spiritually. Often there seems to be no escape from the barrage of sounds that invade our space and our minds. How often have you heard yourself and other people saying they need some “peace and quiet”?

Blocking out the din from the outside can be hard, but what is harder is dealing with the noise inside our own heads. Irrespective of external clatter, unhealthy and unwarranted noise in our minds can be disturbing and terribly unsettling. We need to find a way of dealing with it by creating some silence in our minds and learning to manage it.

“Learn to get in touch with the silence within yourself and know that everything in this life has a purpose”. Elisabeth Kubler-Ross

Creating the space for quiet is nothing special as Elisabeth Kubler-Ross again says, “There is no need to go to India or anywhere else to find peace. You will find that deep place of silence right in your room, your garden or even your bathtub.”

Once we find that quiet space, we need to use it and manage the things going on in our heads. Noise and silence both are part of our life journey and getting in touch with the stillness and silence within us is a blessing.

So today, find the silence inside yourself and enjoy the peace and resolution it brings.”

 

So being alone allows me to do just that, some private time for myself and for some introspection. It also allows me more time to sleep and to rejuvenate what is becoming an increasingly weary body. It is no longer just my arms that feel like heavy cement bags – my left leg is also becoming increasingly heavier and I think, for the first time, my right leg is starting to show signs of weakness.

(There’s always going to be another mountain, another uphill battle … is playing on the radio! Miley Cyrus – The Climb)

But, being alone also allows me time to attend a meeting this morning with Justin Hines.

Justin is a young Canadian singer whose song, Say what you will, is currently in the No 1 position on the AlgoaFM hit parade.

He is no ordinary singer! Confined to a wheelchair as a result of Larsen syndrome (a condition that affects the joints of the body), he has been instrumental in initiating an upliftment project in twenty disadvantaged schools in the Uitenhage/Despatch area. It is known as the JustInspired campaign.

He has come to South Africa to see the work that is being done, and also sang this afternoon at Hobie Beach as a part of the 21st annual Port Elizabeth Splash Festival.

His address this morning, and the subsequent responses from school principals, teachers, learners, helpers and the project co-ordinators did not leave a dry eye in the house.

The message is simple: despite our problems (and we all have them – whatever they may be!), we can still make a difference in our world. The Power of One is just incredible if we harness it and channel it into the right direction. I have seen that recently in this school project, and also in the Karoo anti-fracking campaign that I have previously written about.

(The good news there is that the Government, on Thursday, has decided to bow to public pressure and to stop any fracking in the Karoo until proper and comprehensive tests and studies have been completed!)

“Get InvolvED” has been my message on ED is in wED on AlgoaFM. Each one of us CAN make a difference. And it is by giving of yourself to your community and to your fellow human-being that you come to realize just how blessed you are.

Say what you will before it’s too late!

That was Justin’s final song this afternoon that bellowed out over Shark Rock Pier and the Indian Ocean to the thousands who had come to Hobie Beach to listen to him sing.Port Elizabeth again provided one of its best autumn days.

To see the change that Justin has affected in those schools and to see him “rocking” in his electric wheelchair, leading up the young Afro singers and the Despatch School Choir, is truly an inspiration and a wake-up call to those of us who so easily bemoan our lot in life!

In Luke 23:49 we read “All those who knew Jesus personally … stood at a distance to watch”.

All through your life keep watching Jesus. Stay close to his side. Stay within reach. Stay within sight. Hang in and hang on. (Faith for Daily Living)

This is an Easter with a difference. A Happy Easter to you all. And I hope you CAN find your Easter eggs …

SAY WHAT YOU WILL

If I were to die today my life would be more then okay
For the time that I spent with you
Its like a dream come true
If this was a last goodbye
No more tears to dry
I would say it one more time
Its been more then fine
How could’ve known
How could’ve shown

Say what you will before it’s to late
Say what you will mmhmm
Say what you will before it’s to late
Say what you will mmhmm
If you were to walk away
Know you couldn’t stay
Think of all the times we’ve had
All the good and bad

How could’ve known
How could’ve shown

Say what you will before it’s to late
Say what you will mmhmm
Say what you will before it’s to late
Say what you will mmhmm

All the time that I was holding back
Just trying to protect myself
I want you to know
I loved you more then that

Say what you will before it’s to late
Say what you will mmhmm
Say what you will before it’s to late
Say what you will mmhmm (x2)

If I were to die today my life would be more then okay

 

FRACKING UP THE KAROO: TV2 7:30 TONIGHT

Do something you haven’t done in a long while tonight … get some value for your SABC TV licence … tune to SABC 2 and watch 50/50 at 19h30 … Mike Vincent, a renowned environmental journalist has produced a documentary on FRACKING .. hear what the farmers, community leaders, Dutch Princess Irene, Johann Rupert, Shell, geohydrologists have to say.

GET INVOLVED! 

CONDOLENCES

Sunday 17 April 2011: 4 years 7 months on …

For the last year, since March 2010, I have been interviewed by Lance du Plessis on AlgoaFM.

I first met him when I was a teacher and he a pupil at Grey.

He has been the inspiration for our programme and the wind beneath my wings this past year – believing in me and making the programme possible.

It is, therefore, with great sadness that I learnt of the passing of his father on Friday.

Lance, my thoughts are with you and your family at this time. I pray that you will be comforted by the Great Comforter, that you will gain strength from Him and from the memories of your Dad that you will always keep with you.

Our love and prayers are with you.

Yes, indeed, “heaven laughs when we say goodbye – it ain’t so far to the other side …”

Diamond Iron Gold Silver Bronze Black Diamond Green Emerald

Monday 11 April 4 years 7 months on … ADVANTAGE CBD

A month ago today, Friday 11 March 2011, Japan was hit by its strongest earthquake ever, followed by a devastating tsunami and then a nuclear disaster. Thousands of people were killed and many more missing – also presumed to have died.

 Today, it was struck by yet another large earthquake and a tsunami. In the interim there have been numerous other after-shocks.

And all this time, I have not written anything.

 The reason for this is quite simple: My hands are becoming more difficult to hold up, my fingers becoming more rigid, sitting for periods of time becoming very uncomfortable (my left bum is numb most of the time!) and my mind becoming cloudier and overcast. It’s not exactly the best recipe for writing!

Added to this, are the ongoing normal daily domestic, home and family issues that have to be attended to, and are sometimes more taxing than dealing with the CBD.

The fact that Japan has had one major disaster does not preclude it from being subjected to many more. The fact that I have CBD does not preclude me from having to face many other of life’s challenges as well.

And so, the last few weeks have been particularly taxing and draining. I grow tireder and wearier – some I guess from the life issues and some from the disease itself.

Yesterday, Sean and I went down to the beachfront to watch the Iron Man contest. I recall being one of a small group of people watching from Hobie Pier the swim commence in the very first Nelson Mandela Spec-Savers Iron Man contest seven years ago. The contest has subsequently grown tremendously and improved significantly.  

Thousands of people now line the route and get involved in the festivities of the day. As in life, there are those who make use of the opportunities that come their way, those who do not get involved at all and those who find fault in every prospect. Despite the economic benefits for our City and the plain and simple entertainment value of the occasion, there are those who will complain about the road closures and the traffic jams!

For the 1745 athletes themselves, there is the challenge of their personal triumph over time, distance and their own bodies as they take on a 3,8km swim, a 180km cycle and then a full marathon of 42,2 km!  

We watched as local athletes Tissink took the gold (8 hours 5 minutes) and Cunnama the bronze, with German Bocherer taking the silver – all three breaking the previous record time of 8 hours and 17 minutes!

The athletes looked tired and weary as they crossed the winning line one after the other – from 15h00 onwards until the cut-off time at midnight, 17 hours after the start at 07h00!

For a moment, I thought of my own race that I run – my body becoming wearier with each additional step that I take. How many more laps do I have to run? How much more time do I have? When will that finishing line appear in front of me and what will be the numerals on that overhead digital clock that constantly counts the time.  Some days, I look so forward to seeing that finishing line.

But then there are the times when you feel like you can and want to do yet another marathon and a few more laps!  Times like Friday night’s Neil Diamond show at the Nelson Mandela Stadium.

Way back in October last year, it was announced that 70 year old Mr Diamond would be singing in Port Elizabeth. Never in my wildest dreams did I ever expect to hear the person that I used to listen to on Springbok Radio singing live in “PE” (as he announced his welcome to the 22 000 strong audience!)

It brought back memories of Friday night’s Springbok Radio Top 20 and my little brown leather-cased transistor radio with earphone that I used to listen to in bed in darkened bedroom between 10h30 and midnight. There were all those other radio programmes too – Squad Cars, Pick a Box, Mark Saxon – No Place to Hide, Consider Your Verdict, Creaking Door. The list is endless.

Those were the pre-TV days and besides my brown Hitachi transistor radio there was the “wireless” in the lounge – the radiogramme with a few orange-lit valves in the back and a green eye in the front that had to light up before it was warm enough to make any sounds!

Besides the radio and Springbok’s Top 20, there was the record player that played those heavy black His Master’s Voice records at 70rpm, the 7-singles at 45rpm and the LP’s at 33 and a third RPM – that included my LP of Neil Diamond Hot August Night!

You put the record on the silver centre spindle (spindle through hole in centre of record), moved the swing arm to steady the record on top of it, and then pressed the start button. The LP dropped onto the turntable, the arm with the stylus moved over the edge of the record, then descended onto the outer grooves and – voila! – Mr Diamond would start singing in mono sound out of the speaker at the bottom of the ‘gram! 

When it was announced that Neil Diamond would be singing here in PE, I invited AlgoaFM listeners to apply for two tickets that I sponsored. Their stories are blogged previously.

I awarded the tickets to sixteen year old George Marriott of Queenstown, a pupil at Queens’ College. He has an illness called spino cerebellar degeneration and is largely confined to a wheelchair. His parents and sister joined him for the concert, and it was an absolute pleasure meeting them at the concert and getting to know them better at breakfast.

One of the slogans of the Iron Man contest is “ANYTHING IS POSSIBLE”. This is so true when one sees the hardships that so many people have to face on a daily basis. It gives me strength to face yet another lap!

And for the two hours that Neil Diamond entertained us, there was not a care in the world. The audience was soaked up into the pleasure of his music and the memories of all his old favourites.

Music transports me into another world – it’s almost as if one leaves your own body and enters a realm where the pain and discomfort of the body is felt no more. Those two hours of bliss were no different.

It was a hot April night! PE laid on its best autumn evening with no wind, the stars shone overhead, the music played and the crowd sang, clapped and danced the night away. What a privilege to have such a stadium, what a privilege to have Mr Diamond in the Friendly City, what a pleasure to hear his music first hand – not through the small 2 inch speaker of the transistor radio or the 10 inch radiogramme speaker, but through the most sophisticated of modern-day electronic equipment.

(If I may be realistic for one moment and put my feet back on the ground, then I must voice my concern about the lack of upkeep in the area around the NMB stadium. Less than a year after the euphoria of the FIFA World Cup 2010, the pavements are already broken, the weeds are taking over, the potholes have appeared and many of the lights have gone out. The North End area is looking more tired than many of the Iron Man contestants! What, one wonders, is the future of this magnificent structure in a City fraught with fraud, corruption and non-delivery?)

Neil Lesley Diamond finished off his main programme with a song with which I was not familiar, but, thanks to Briony Sparg and an AlgoaFM listener, I was able to source it the following day. The words of Hell Yeah! Form the album 12 Songs, says it all:

If you’re thinkin’ that my life
Is a hoot and a holler
From the start of the day
To the dark of the night
THAT it’s ringing like a bell
That you only wanna follow
And trust me when I say
I’m just trying to get it right

Still I think about myself
As a lucky old dreamer
If you’re asking me to tell
Is it worth what I paid?
You’re gonna hear me say
Hell yeah it is

And I say it loud
I loved it all
And I’m not too proud
I freed my soul
Just let it fly
Hell yeah this crazy life around me
It confuses and confounds me
But its all the life I’ve got
Until I die
Hell yeah it is

If you’re asking for my time
Isn’t much left to give you
Been around a good long while
So I gotta say it fast
Time is all we’ll ever need
But its gotta have a meaning
Be careful how it’s spent
Because it isn’t gonna last
I hear you wonderin’ out loud
Are you ever gonna make it
Will you ever work it out?
Will you ever take a chance?
Just believe you can
Hell yeah you will

Gonna be okay
You might get lost
But then you’ll find a way
Don’t go alone
Can’t be afraid
Hell yeah this life is here
And it’s made for livin’
And loves a gift that’s made for GIVING
Give it all away and have it still
And hell yeah you will

I’ve been livin’ in a bowl
With a lot of people starin’
With my feet on shaky ground
And my head up in the sky
But it’s where I wanna be
It’s a life that’s made for carin’
Got a song to pass the day
And a girl to share the night

So if they ask you when I’m gone
Was it everything he wanted?
When he had to travel on
Did he know he’d be missed?
You can tell them this
Hell yeah he did

He saw it all
He walked the line
Never had to crawl
He cried a bit
But not for long
Hell yeah he found the life that he was after
Filled it up with love and laughter
Finally got it right and made it fit
Hell yeah he did
Hell yeah he did
Hell yeah he did

To finish off a wonderful weekend, our very own modest 26-year old South African Black Diamond, Charl Schwartzel, put it all together to perfection on Sunday evening. He moved up among the leaders after a long chip-in for birdie at the first and a wedge shot from the fairway that dropped in for an eagle on the third hole. He then clinched his triumph with birdies on the last four holes for the thrill of slipping on the green emerald jacket, after winning the 2011 Masters Golf Tournament at the Augusta National Golf Club in Georgia, USA.

“It’s a dream for me,” said Schwartzel. Indeed, it was a dream weekend for many!  Hell Yeah it was!

Health-Meter

  Excellent             Ave                 Poor
Cognitive  
Memory-Short term * * * * * * * * * * * * * *                      
Executive function * * * * * * * * * * * * * * *                    
Spelling * * * * * * * * * * * * *                        
Figures * * * * * * * * * * * * * * *                    
Physical  
Left hand/  arm * * * * * * * * * * * * * * * * * * * * * * *    
Left leg/ foot * * * * * * * * * * * * * * * * *                
Right hand / arm * * * * * * * * * * * *                          
Right leg / foot * *                                              
Lungs *                                                
Swallow *                                                
Spasms –left * * * * * * * * * * * * * *                      
Spasms –right *                                                

Red stars = Deterioration / Green stars = Improvement from previous week

CBD Symptoms:Weariness/Weakness

My Mother (dx 2007) has been suffering from generalized weakness for several months now. Her progression of the CBD thus far has been very slow and mostly contained to one affected limb and gait instability. However in the last few months she has been suffering from severe weakness. Even to walk across the room wears her out. She has been to her GP and had blood work which showed nothing.

My question is whether others have experienced this as a symptom of CBD?

from A**

RESPONSES

A**

Your description describes my mom’s situation. She was like that
exactly. Each day she got a tab bit weaker and stopped doing most things,
stating she was too weak. She went from walking about a mile, to walking
down the street, to walking in her house from room to room and then having
someone walk with her room to room. One day about 6 months later, she tried
to get up from a chair. I was prepared to walk next to her, but she fell in
my arms and then said, “J** my life is in a chair”. Over the next week,
she was able to walk in the morning but not by midday. By the end of the
week, she started using her wheelchair full time. It has been 6 months
since that experience. For the first 3 months she was in daily PT and they
got her walking with a walker or holding someone’s hand for short distances.
That success was short lived as now she can’t stand up straight or help with
a transfer from the wheelchair to her bed or the bathroom. Her body has
become rigid and her other hand, the one until now largely unaffected, is
affected. A month ago she could pick up finger food and put it in her mouth
with that hand. She can’t use either hand now to put food in her mouth.
She is unable to push a button to call for help.

I hope your mom is able to experience as much as possible in each day. I
think if my mom could go back to those days, compared to now.she would in a
heartbeat.

God bless.

J**

Hi J**,
Thanks for your reply. This disease is so confounding. For a while, she will do great, and other than the lifeless left arm, and her gait becoming more wobbly, the degeneration has been very slow. I get my hopes up that the worst is not going to come. And then she will just feel awful for weeks. And the frustration for her is not knowing whether to go to the Doctor, is there something else wrong, or is it the CBD? And I don’t know what to tell her. And she is also 84, so are some things just regular aging? (Sorry for venting.)

So, do I understand correctly your Mom’s progression you described has been over the last year? I remember not that long ago, you sent me the picture of her walking with the walker. This is all just so terribly sad.
Thanks again,
A**

Yes A** it has been a year. You just made me realize that. Last April I
spent the whole month in Arizona with my mom and her husband because she had
gotten so weak suddenly and he needed help with her. They had a wonderful
young student live with them for the summer who helped dress, bath and feed
my mom. I went again in September and that was when she stopped walking on
her own. We moved them to California in October.

Sadly we can’t get a photo of her standing again. Like your Mom, CBD
progressed slowly at first. My mom was very persistent with exercises for
her hands and legs. She rode a stationary bike every day for 30 minutes. I
use to kid her and ask her where she was riding to. Earlier this week she
was unable to make the pedals turn on a device that we got her in January.
It sits under her wheelchair and you can use your legs to make the pedals go
around. I strapped her feet in and pushed the pedals with my hands so that
her legs could get some movement. My mom just turned 76.

We are learning to move her arms and legs for her because she can’t. It is
more difficult than it looks to do it without causing her pain. I’d start a
routine doing that now if you can. It would be better to learn when you
won’t hurt her trying.

I am sorry your Mom is growing weaker and the condition is consuming more of
her body. I keep telling my mom that even if she can’t use her arms or
legs, she has the same spirit and soul that she always has. Your mom is
lucky to have you caring for her. Stay in touch.

J**

Fatigue is common in CBD. Muscle atrophy starts to occur as well, as muscles don’t get the exercise they used to. Plus further degeneration is occurring in the brain so the signals aren’t getting through to the muscles.

Many people do become bed-bound or chair-bound because they are no longer able to support their own weight.

Have you considered using a wheelchair in her home?

R**

Hi R**,
I get blasted everytime I even bring up the words walker or wheelchair. She has an excuse why every single one of them wont work. I think sadly, she is nearing a point where she’ll have to reconsider. She’s convinced that if she quits trying to walk and move, she will quickly lose all ability. And she’s probably right.
I have read enough on this site to know what can be ahead for her. And I know I have only just begun the caregiving journey. It’s like a freight train is headed straight for us, and we cannot get out of the way.
Thanks for listening.
A**