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Tuesday, September 25, 2012

New Beginnings

So as today is a new route on my MS journey I needed to just get the right quote for the day and I got this.

“Nobody can go back and start a new beginning, but anyone can start today and make a new ending.” -  Maria Robinson

This was a quote that appealed to me as I did decide some time ago on a new ending but not really knowing what will be the new ending.

So today I started walking with my new legs and I am positive that this will go great towards that new ending.


Saturday, September 22, 2012

Quote by Rose Kennedy

"Birds sing after a storm. Why shouldn't people feel as free to delight in whatever sunlight remains to them?"

This just appealed to me.

Let us enjoy the sunlight that remains.


Thursday, September 20, 2012

This one goes out to.... all the other PwMS..


As I sit after a day of almost just relaxing and focusing on all the great stuff around you all the friends and family, it slowly does sinks in. First you just don’t want to accept it but then you realise that it is the case.

I have been hiding it from myself for months that it cannot be happening to me. I am above this and I will overcome all. As I am really excited about getting my legs sorted I am also nervous as what this really does mean.

I have had my legs tested and there is a rapid loss of the control in my legs, so I have started the process to get external limb support made for my legs. The question is will it help, will it change anything? There is no straight answer but we will try.

It is then that that moment you realise that you in a really dark space in your life, Honestly it has been the first time since I have been diagnosed with MS that I am feeling this way.  It does make me think of that black hole syndrome that you need to fight it as once you on the other side it is a whole new Universe.

I just want to state that these days are special days to us PwMS as it is these days that we fight to get through as we do believe that all these battles we are having will only help the people that come after us.

As music is a very important part of my life the following song “Coolio- Gangster's Paradise
has been playing in my head. This is only as some of the struggle we have relates to this song, we would like to get out of this struggle with MS but we can’t and we have to be at peace with it.

We need to get our own point of EQUILIBRIUM.


Sunday, September 9, 2012

Chemotherapy for MS



As part of my journey I decided to take the alternate route to treatment for my Multiple Sclerosis. This was a decision that was taken between my Neurologist and I. We just had a discussion around 18 months ago that the traditional treatment of MS was not going to help me.

I had faith that there was to be an alternate route to having all the side effects from medication day in and day out. As I wanted to have a normal life as far as is possible with the situation I am in. So we decided that we will start Chemotherapy. The solution was to have Campath treatment once a year for three years. As this is an approved treatment for slowing down the breakdown of the Myelin sleeve in the brain.

But as this is still in the early days of the drug to be used the Medical does not pay, I was blessed as last year the company I work for paid all the expenses. This year I was blessed that I received the funds for this from alternate support.

So the question is always does it help? is there an improvement? Well honestly there are a number of answers to this:
  • No as I still really have crappy days where all is not well. (But that normally shocks the people so not the correct answer).
  • Yes as I do not have the side effects from the other Medication. (But does not answer the question)
  • No as I still have MS. (Also not the correct answer).
  • Well I need to wait and see what the future brings. ( Such a non answer responds)


But maybe the correct answer is:

I have taken this route and I have faith that this is the correct route for the people close to me and me currently. And that I will walk (maybe not that straight or easy) this route. I also have put my trust in the people close to me to support me during this part of the journey. I have also made peace that I will day by day feel different and have different experiences but that is also my journey that I have chosen.


Then the other Question is: How do you feel during the treatment?
  • Cold fever spells during the treatment.
  • Injection soars
  • Rash like reaction all over the body
  • Itching


This is just for the week of treatment and week after then all is back to the normal MS Symptoms like:
  • visual disturbances,
  • limb weakness,
  • muscle spasms,
  • loss of sensation, speech impediment, tremors, or dizziness,
  • depression,
  • paranoia,
  • Uncontrollable urge to laugh and weep.


So in short this is my journey currently with Chemotherapy and MS and I do believe that it is all in the Mind and that we will continue to have the fight to overcome MS with my loved ones by my side.

“My body could stand the crutches but my mind couldn't stand the sideline.”
Michael Jordan


Friday, September 7, 2012

Same Moon and Sun


Same Moon and Sun

As we have had the full moon pass us by in the last nights and sitting on my deck I needed to think, why do us people differ so much? We all live under the same moon and sun but yet we do not want to give each other the light of day.

As a human I am blessed with of the most unbelievable family and friends and really blessed with my two Kids that during the years have always been there for me. 

 But as our universe works there is always a flip side to a coin, or as Einstein said for every action there is an equal but opposite reaction.

So I do believe that we as humans that live in this Universe with all its beauty and Joy can really make it our mission to accommodate each other, respect each other and appreciate what we all bring to each other. It really does only take a moment of your time to relax and look around you and realise that we can live in Harmony with each other.

From my personal experiences this week it is always the saddist moments when people that are out to harm the ones closest to me are brought to a total stop and yet they still do not think about the people around them, they lost it all but then they ask why does this happen to me. Should the question not be what do I need to do different to the people around me, we are all equal and not one of us is better or greater than the next.

So I ask, as we all live under the same Moon and Sun, let us respect each other with our differences.


“In the end we shall have had enough of cynicism, scepticism and humbug, and we shall want to live more musically.” 
 Vincent van Gogh