Sunday, January 30, 2011

The saddest story. . .

Greeting Friends and fellow crafters,

As you will have noticed I have not posted since the 22nd November 2010 - which is, roughly when my world started falling apart.  My mom had been not too well since about September but we were assured that with time and some regular physio that she would soon be as right as rain.   This didn't happen tho and her physio even suggested that she may have parkinsons, but we scort of scoffed at the idea - this healthy wonderful mom have a debilitating disease NO WAY!!

As the days went on she got worse, lost more use in her left arm and started having moments when the left side of her face would just have no control, and then the scariest - she started falling.  This was very scary because it happened at very random times, her legs would just give in. If she was in bed or even sitting it was ok but if she was standing or walking it could be so dangerous.  So I called our GP under the advice of the physio and due to the obvious need (and to be honest out of sheer desparation) and he saw mom that afternoon, it was a Friday early in December,  he did the usual ears, throat etc checking and then asked about her recent symptoms and said it sounded like MS so we both said oh, ok.  He recomended that mom go straight for an MRI which is not that easy when you have no medical aid, however I made a plan as I didn't like the urgency in the doctors tone.  

So off we went to the Flora clinic to get the MRI - took the results and the scans back to the doctor who had waited for us (even after hours) we decided that this MS must be serious if he had waited for us.  Oh well, what ever it was the doctor could fix it  . . . so we thort!  He took a brief look at the scans and with a very solemn face confirmed "my mom had MS" - which stood for????  
He then pointed out the little gray-white patches, the scaring on her brain and it started to become very real and very very scary!  But still at this point we no clue just how scary things would become.

Mom's symptoms progressed so fast, that by Christmas eve we had to cut her food into tiny bits for her because she couldn't use a knife and fork, the shaking had gotten so much worse and in what seemed like no time at all she was having episodes of violent muscle spasms and by the end of December she couldn't even use a pen or a pair of scissors.  The doc had also referred her to a Neurologist at the JHB hospital as he said the medication for MS was so very expensive, we had no idea just HOW expensive. 

So we went off to the JHB gen at night  as we agreed that there may not be that many cues at that time, we were correct and the only wait was for the doctor to actually get there.  He looked at mom for all of about 3 seconds - scribbled on a piece of paper and mumbled next  . . . so we asked what we should do now and he again mumbled that we should come back tomorrow and pointed to the ward number on the piece of paper he had just scribbled on - so bright and very very early the next morning (mug n bean muffins and cappuccinos) off we went to the JHB gen again, found parking . . . found the ward . . . and found the note on the door that stated CLOSED!! will re-open on 3rd January 2011.  OK thanks guys!! 

So we left - had a good cry in the car and started counting down the days till the 3rd of Jan!  In the mean time (over Christmas and new year) I tried to fond a neurologist who would be able to see mom and get her started on the medication from the JHB gen - I also called my pharmacist to see just how expensive this medication was, if we all clubbed together maybe we could afford it for a couple of month, I was told that one dose of this medication would cost in the region of about R12500.00 this was for ONE dose - and as the pharmacist pointed out, what if she needed a double dose ie R25000.00 OH MY GOSH!!!!! ok so not an option - we might be able to swing it for one month but thats all!  So the only choice we have is to sit and wait  - hands tied till the 3rd Jan 2011.  

On the 3rd we went of bright and early again to the JHB gen and after waiting and then filling in a form and then waiting and then filling in a form and then waiting and waiting we were finally given a date to come back and see a neurologist! YAY YAY YAY we were finally going to see someone and get some help for my very special mom!!! until . . . i opened the little booklet and saw that the date to come back was the 23rd of Feb!?!?!? Thats like 2 months away I thort!  So once again we play the waiting game, i did do lots of researh and investigating and reading up on MS and found some really helpful tips and tricks like just how useful an elastic band can be to an MS sufferer, to help them grip so many things like a glass or a fork or a pen so many things.  So we got mom a whole BIG box :)  

I also found a sight that had such a lovely post written by an MS sufferer - "Things you might want to avoid saying to someone with MS" I love it it is so apt and anyone wondering what they should or shouldn't say, should RTFM :)
Another BRILLIANT find was this summary of the day to day life of an MS sufferer called MS SUX it is written with such truth and raw fact that it can really help someone understand what an MS sufferer is or could go through at times it is funny at other times it is very sad, but over all it is a very good read, if you have never heard of MS or are even not to sure what it is give it a read it will give you a whole new understanding of this ugly wicked disease that just creeps in and steals lives from such special people. MS SUXS
Thank you for taking the time to read my very sad story, it has a little bit of a happier ending tho - today my mom has been staying with me for one week and has been on anti-depressants for about 3 weeks and the improvement has been amazing, I cant believe its the same mom of two weeks ago.  Thank you God and please stay near to my mom and continue shining your healing love on her.  

I can only hope she gets better and better and its not long now till the 23rd of Feb :)



  1. Colleen... what a lot of waiting... I'm so sorry you'd had to endure this. I sure hope everything gets sorted out soon and that your mom starts feeling much better. Thinking of you both
    Hugs Mel

  2. Hi my friend,
    So sorry for everything that you and your mom and family must be feeling !! Waiting can be so scary , will do that with you !!
    Hugs, prayers and love to you and YOUR SPECIAL MOM !!
    Left you something on my blog ...........:))
    Really lotsa luv

  3. Hi Colleen

    Thank you for sharing your story, I do hope that all is going well. Please keep us updated. i will keep you in my prayers.

    Good luck!!!