You Raise Me Up – THANK YOU!

 

The purpose of my blog site is to raise awareness of corticalbasal degeneration (CBD) – a relentless, progressive, degenerative neurological illness that leads to complete paralysis. There is no cure and there is no treatment. A person with CBD becomes unable to walk, talk and to use their hands. Within a relatively short period, that person dies from pneumonia.

Three years eight months ago, when I became ill, I had never heard of the illness. No one I knew had heard of the illness. Not even my GP had heard of the illness!

Then, three years two months ago, on 8 February 2007, I was diagnosed with that illness.

Why me?

Because, through the talents that God has given me, I am now able to make a difference in other people’s lives. I am still able to talk and type, I am able to use my radio programme and I am able to write my blogs. I am able to raise awareness of not only CBD, but of all kinds of illnesses, disabilities and challenges with which people have to live.

I am so excited that as of today, 29 April 2010, my blog site, within two months, has been visited more than 1000 times! That means there are now so many more people worldwide who have become aware of corticalbasal degeneration.

May I be as bold as to ask you to help me celebrate this milestone by

  • Thanking your Creator for giving you Life

 

  • Thanking Him for giving you good health (if you are fortunate to be in this position)

 

  • Thinking about and praying for someone who has ill-health and for their loved ones and care-givers

 

  • Taking yourself out to visit that person or taking that person out to do something different

 

Thank you for your prayers, your support, your interest, your caring, your concern and your love. You raise me up.

Died and Gone to Heaven?

29 April 2010: 3 years 7 months on . . .

 Having CBD does not mean that you are immune to other illnesses. You also get those mundane, everyday, ordinary sort of things that everyone else around you gets. It makes you ill but, after a visit to the doctor and a script from the pharmacist, it disappears miraculously. And so, in addition to the CBD, it would now seem that my uric acid level has become raised, and this leads, from time to time, to a dreaded gout attack.

So, on Thursday last week, I found myself at the casualty department of St George’s Hospital. No, not for the gout, but this time with Phillip! He had injured his pinkie playing rugby in Grahamstown on Wednesday afternoon. Despite an anti-inflammatory and a strapping, the swelling did not subside. So off we went to the hospital – by the amount of money that I have invested in this private establishment, I may be forgiven if I considered myself a shareholder by now?

An x-ray revealed a broken bone, and that means he will remain strapped and rugby-free for four to six weeks. But, it was while I was sitting there waiting for him, that I could feel that dreaded pain starting up in my left big toe. I had no intention of riding it out again using the standard medication that I have used in the past! I immediately phoned the miracle doctor and made an appointment to see him later, anticipating the dreaded cortisone jab into my bum that would bring instant relief from the pain.

After Phillip had been put to bed, literally and figuratively, I headed off to Dr Rod Butters. It was just the previous week that he had made a home visit at ten in the evening – now when last did you have a doctor make a home visit? It had reminded me of Doris, my late mother, who always insisted that the kitchen be spotless and that all dinner dishes be washed, dried and packed away at night before bedtime, just in case the doctor needed to make an emergency night call. Imagine the disgrace if he had to see an untidy kitchen!

Back to Rod Butters: Out came the syringe and in went the needle…just a slight burning sensation as the Celestone Soluspan Voltaren cocktail went straight into the right cheek. Out came the needle and away went the pain. Isn’t it amazing? If only these clever guys could find something to put in that syringe that would take away the CBD!

But wait . . .

If you have read my blogs, you will know by now that my condition varies considerably during the day and that mornings are the worst part of my day. My body seizes up during the night and, when waking, it takes me a while to get up and get going. My body goes into the foetal position and my arms creep up over my chest. They feel as if they have turned into bags of cement over night. Thank God, it’s not painful – but all very uncomfortable.

It’s also not a pretty sight, and one that only my family and a few others have seen. This is always the most difficult part of the day for me, and the time when I have to fight the tears and the temptation just to pull the blanket over my head and stay in bed. For the rest of the day, most people would not even know that I am ill – the outward appearance belies what is happening underneath the surface. Hence the statements that I often hear “But you look so good!” I look so good only because the panel-beating is so good!

Once I have “defrosted” in the morning, I am ready to face yet another beautiful day that I have been given. That is my reward for getting through the initial discomfort! What I do with the day, with every additional moment that I have, that is my choice.

But …on Friday morning things were different.  For the first time in three years and eight months, I woke up and my arms were not tingling and that heavy cement feeling was gone.

I thought I had died and gone to Heaven! I just lay in bed and it felt so good to be normal again. I WAS able to pinch myself because my fingers were working.

And then I got out of bed and walked normally, without the slowness and the difficulty in moving. This time the happy tears flowed freely, just because it felt so good. How long would it last? Well, the respite was short-lived and by Saturday morning things were back to normal – well, CBD normal for me – anyhow, what is normal anymore?

The question of course is, can’t I get a daily dop of that gout cocktail to ease the CBD symptoms? Will a cocktail a day keep the symptoms at bay? That would put a whole new meaning to having a daily shot! I guess this calls for yet another visit to the neurologist . . . is there any money left in the medical aid?