Tuesday 22 February 2011: 4 years 5 months on …
When I read the original blogs that I wrote about a year ago, they were so much more positive. Things were going well and I was very upbeat. The tone of those blogs was very bubbly, and this seems now to have disappeared.
I have a choice to make – to continue writing about the champagne and the “bubbly” things and pretend that all is well. Or else, if these blogs are to be an accurate record of my current journey, then I have to be truthful in my writing and also document the occasions when the champagne loses the bubbles and becomes a bit “flat”!
My apologies, therefore, if everything is not always upbeat. If you find it difficult to read, then you can imagine how difficult I find the actual experience. It is so easy to allow yourself to be sucked into self-pity and so the trick is always not to be drawn into it, but to find an appropriate way out of the cesspool.
So, about a month ago, on 17 January, I went to see the GP. I had a chest infection and the spasms down my left side were becoming unbearable. By now, the antibiotics and the syrup have helped clear the infection and my breathing has improved considerably. (You may recall that as the CBD progresses, the diaphragm and the lungs also become a problem for the brain to control, and that pneumonia becomes an ever-increasing threat.)
The spasms have been more difficult to control. I have written before that most of the medication that I get is often on a trial-and-error basis to control various symptoms. From discussions in the CBD chat group that I found on the Internet, and from the emails that I have received from fellow CBD “friend”, Alison Bevon in South Australia, it would appear that trial-and-error is the norm. It is also a favourite topic discussed at meetings of the Parkinson’s Support Group that I have attended.” Take what the doctor gives you and play around with it” appears to be a common thread through the experiences of neurologically-impaired people.
Furthermore, with symptoms varying so much between “patients” and medication having varying success rates, it becomes quite a difficult situation to manage. The patients really require patience! There certainly appears not to be a “one size fits all” solution!
I was prescribed Bacloffen for the spasms – 2 daily for 10 days – and let’s see what happens! Well, by Monday 24th, nothing really had happened in terms of spasm improvement. However, I was starting to feel like I was constantly experiencing a hang-over! And the 24th was my date for my annual “check-up” (read “report back”) with the neurologist.
This annual get-together is required from my insurance company in order to provide them with a written report that a miracle has not yet happened and the CBD has suddenly disappeared by Divine Intervention!
So, for R500, I get to do all the talking and “report back” on what has happened over the last 12 months. He listens attentively (and yawns a few times) – I guess when you are one of two neurologists in a city of 1,5 million people, then all this is hard work, long hours, and possibly, a tad boring.
He gets me to do the walking, the finger and hand exercises and then taps the knees and elbows with that little hammer. Not much is said from the other side of the table. I asked whether the slowness of the deterioration could suddenly change into a sudden over-night regression, and I was relieved to hear that this was highly unlikely. It would appear that “in medicine, if things happen fast, they happen fast – if they happen slowly, then they continue slowly!”
He is interested in the Bacloffen, and suggests that I stop that, and rather take Rivotril, (0,5mg) 3 x day. Let’s see what that does! And collect the report later in the week …
Well, the next few weeks become a haze of confusion. My body appeared to melt down: I was weary, my arms and legs weren’t working, and my mood was terrible, the tears rolled freely, the brain was confused and the memory was …..well, what memory? I seemed to waft through the mists of time. Now where did I hide the Easter eggs – sorry, the Valentine’s chocolates?
My family say I had the devil in me!
We contacted the Hospice to make the arrangements for that dreaded wheelchair, and they also sent a nurse and a doctor to come and see me at home. (Funnily enough, when Sr Le Roux returned the following week Thursday for our then-arranged weekly meetings and apologised for being early, I had to enquire who she was and what meetings she was talking about! I simply could not remember anything of the previous meeting that we had!)
Was this the beginning of the end?
No, it wasn’t! And when I consulted with the GP and Specialist some ten days later, they agreed that possibly the symptoms I was experiencing were but the side-effects of the Rivotril. So now wean yourself off those tablets and then stay off for a few days to clear the system. And then we’ll try again!
Strangely, I normally read the insert in the pill-box before I take any medication. This time there was no insert to read. But when I came off them and started feeling better, I googled the tiny little yellow buggers, lo and behold, I was warned by the intelligent internet of all the wonderful side-effects that could be expected from the Rivotril – exactly all that was happening to me!
The lesson I have learnt is to ASK the doctor what side-effects to possibly expect and definitely to read the pamphlet or google the internet – to be forewarned is to be forearmed!
Within a few days, I started feeling better, but as the devil receded, the spasms returned. So now, we are trying (instead of 3x day) a half tablet once a day for a week and then a half twice a day for another week. I have also altered my Carbolev (dopamine) intake from 2x every eight hours to 1x every four hours. For someone with dementia to remember all this is becoming a nightmare – thank goodness for cell phones and regular recurring reminders to take my pills!
But, so far so good, the devil is still at bay and the spasms have almost completely disappeared – just one or two every now and then. If only I could work out what causes these now intermittent short circuits! And the on-going hangover!
Coincidentally, a discussion commenced in the chat group about the use of Baclofen. It has made interesting reading in the group to see the differences between people with the “same” illness: what tablets are helping some people and not others, the timing, the dosage, the side-effects, the efficacy … no wonder it’s just all trial-and-error!
And in amongst this all, my eyesight has been deteriorating – so the reading on the screen has not always been the best. And if I didn’t greet you, it’s most probably because I didn’t see you! But I have been delaying an eye test because I have been aware that new specs will blow my medical savings account that has to last the family for the rest of the year.
However, I am extremely grateful to Bryan Dowley (MD), Tim Seaman and Spec-Savers – The Bridge, Port Elizabeth for sponsoring my new spectacles. It has re-opened a new world.
Once again, I can see the world around me. More importantly, I can see the kindness of people who support me. I can see the numerous difficulties that so many people face every day. I can see that there is still so much to see and do. I can see clearly now!
I am just disappointed that, because I was not feeling well, I had to cancel two appointments: one to the Concert in the Park and the other to Brett Parker’s birthday party. There’s still next year!
On a lighter note: I can see that there is still much to be grateful for:
Subject: The absolute best Little Johnnie joke
Little Johnnie’s neighbour had a baby. Unfortunately, the baby was born without ears.
When mother and new baby came home from the hospital, Johnnie’s family was invited over to see the baby. Before they left their house, Little Johnnie’s dad had a talk with him and explained that the baby had no ears.
His dad also told him that if he so much mentioned anything about the baby’s missing ears or even said the word ears, he would get the smacking of his life when they came back home. Little Johnnie told his dad he understood completely. When Johnnie looked in the crib he said, ‘What a beautiful baby.’
The mother said, ‘Why, thank you, Johnnie. Johnnie said, ‘He has beautiful little feet and beautiful little hands, a cute little nose and really beautiful eyes. Can he see all right?’
‘Yes’, the mother replied, ‘we are so thankful; the Doctor said he will have 20/20 vision.’
‘That’s great’, said Little Johnnie,’coz he’d be stuffed if he needed glasses!
PS At this time of yet another devestating earthquake, my thoughts and prayers are with my sister, sister-in-law, cousin and their families and our many friends who live in New Zealand.
Health-Meter
| Cognitive |
Excellent===================Average============================Poor |
| Memory (Short) |
************************************** |
| Executive function |
************************************* |
| Spelling |
***************************** |
| Figures |
**************************************** |
| Physical |
|
| Left hand/arm |
******************************************************* |
| Left leg/foot |
******************************************* |
| Right hand/arm |
********************************** |
| Right leg/foot |
* |
| Lungs |
******* |
| Swallowing |
* |
| Spasms –left side |
************************************* |
| Spasms – right side |
* |
Red stars = Deterioration / Green stars= Improvement (from previous week)
BrainStorms - Ed Lunnon's Blog 