Mom’s Story – (as dubbed by my daughters)
In retrospect and with all the knowledge I have today, MS most probably for me, started with optical neuritis.
July/August 1995 in bright sunlight on the banks of the Bergriver in Paarl, Western Cape, I noticed that I could not see/focus so well, later that evening I could not see the TV images so well..wrote this off to a coming Migraine headache..within a week my sight was still not normal,,I had my eyes tested and got new specs.
at this stage I had a 2yr old toddler and visited my GP often..on one such visit I asked him to check out this numb/burning sensation in my right armpit..nothing obviously wrong..maybe a nerve I pinched from sleeping on my side /shoulder too much. Two weeks later I was back at the GP with my toddler..I mentioned as a matter of fact that I noticed when bathing with her in warmish water that she stuck a toothpick into my right upper tight..hey presto! Did’nt feel it!
My GP was young, brilliantly qualified and up-to-date...he immediately caught on/suspected. Putting eyesight problems and funny sensations and no feelings together! He immediately referred me to a Neurologist..within a few days (with my overnight bag packed) I saw an equally fantastic Neuro @ Panorama MC. Long and short of story..thorough examination, geleidings toetse, admission to hospital, a lumbar punch later that same afternoon and stil later (same day) a MRI scan! (In those days things happened fast and no need to wait for weeks/months to see a Neuro!)
Next morning early my love affair with my Neuro started..I was given the diagnoses of RR MS.....Dr Henk Badenhorst is the angel with who I started my journey..he gave as much info as I could and wanted to absorb. The first and one thing he told me was..”the uncertainty of MS and all that is going to happen to you is the worst. Please try stay calm and positive .and yell fire whenever you suspect a relapse and come see me..I will know when to call the fire brigade!’
The following three yrs I was in and out of Panorama MC often with relapses ..Solumedrol IV’s and all the side effects that goes with it became my lifestyle! I had my own private room in the hospital at that stage and I just moved my office from Stellenbosch to the hospital as required..(at that stage I was working for the hospital group) I even received my 5yrs Service Award in the hospital!! J
The worst MS scare I ever experienced was when I lost my eyesight for 3 weeks! After being in hospital AGAIN for Solumedrol.,I just dolled up with eyepatches to match my outfits and carried on.
During the following 2yrs I battled ,with my Neuro, to get the medical aid to approve Rebif. Yes we did encounter a ‘silly’ Medical Adviser who decided I was better off to go into hospital 3 or 4 times a year than to pay for the interferon! I am sure if the decision to pay was taken earlier I would have still been walking and working.
My employer really over all these years have been wonderful to me....first I stopped training office staff and travelling, Was moved to a local regional office and only did web design and later back to the Paarl hospital where I started so many years ago (11yrs service)..This is exactly 3 minutes from home ! BUT it was also 3 minutes away, comings from church where I was involved in a motor vehicle accident in 2005.
In 2006 it was discovered that my NON MS leg was injured in the accident..after an operation to repair I still carried on working bur increasingly battled more with two buggered legs! I was eventually declared medical unfit later in 2006.
This is where I met this sweet female dr who taught me to use a wheelchair as an energy saving device and thus I and ‘Wieliekies” are great friends..shopping with my grandson on my lap in the chair is great fun! Later I got a scooter and this is even greater fun..at my local shop I am known as the scooter lady and boy what a ‘pick up’ it is! Though mostly I only pick up the ‘old omies’ J
Just recently I went for my annual check up with my Neuro (now Dr Lombaert @ Durbanville MC), nearly fainted when I was informed Medical Aids are putting pressure on Neuro’s to stop prescribing Rebif where MS are border case progressive! Once again I have an excellent dr and after examining my case with insight he decide to carry on with Rebif.
Now is this really a MS story? I don’t know? But all I can tell is roll with the flow..stay positive..scream when you have to..do not keep count of the ‘bad times’..bat the curve balls as they are delivered to you one by one!
I regularly have ‘ feeling sorry for Amanda days’..but this keeps me going and I know the sun will again shine tomorrow! and always remember GOD’S PRFECT TIME AND PLACE for all that happens in your life!
My gratitude to all in my life that has walked the walk with me - My daughters Tanya, Claire and mostly Danielle (only 2 yrs old when I was diagnosed). My dearest hubby Alexander (I love you , just don’t always like you,( he will understand) Recently ,Salomie, my carer the music in my life.
Amanda sadly passed away in 2019