Dear Fanie, Marleen, Tina and family
Fanie, thank you for your sms to Claudine, I heard about it yesterday, and that you asked that we give you an update on her status. I do so with pleasure.
Claudine now has 2x/week full day therapy sessions. Every day was very expensive, and it tired us both out. The center is an hour's drive from where we live. Henko cannot take us as it would make him at least 2 hours late for work, in the mornings, and he would have to leave the office an hour early every afternoon to fetch us, and this is not possible.
In the mornings we go in, a "patient-taxi" collects us at the house. The trip itself is also no fun. The drivers are very bad, and the one time the driver drove so wild that Claudine was sick, and you can just think...... Another time the driver was again so rough that Claudine fell of the seat!! before I could catch her,( this due to her struggling with her balance), and she cut her foot on something on the taxi floor. Back home, as I helped her out of the car into her wheelchair, I noticed the blood on her foot, and that's when she told me something had cut her when she fell between the cars seats. Henko kicked up a big stink with the owner of the company that runs this taxi service, and the owner repeatedly apologised for the conduct of his drivers. He eventually offered us 5 free trips to the clinic (they charge 30 Euro per day = approx. R300), and now he sends a special driver to collect us, who drives properly!
Rehab, full day was costing us R40,000-00. We had so many expectations and were so disappointed once the first month had passed, with all Claudine's hard work, and she still couldn't walk. In fact, to us it didn't seem as if there was much progress at all. But I know we just have to keep going on and trying. I will explain her situation in detail now, as I continue.
Walking:-
She manages to take small steps, without any assistance. Only in the house though, where the floor is even / level. Otherwise, she walks with the walking frame, indoors. When we leave the house, it's still in the wheelchair. We just have to be close by when she does walk, else she may lose her balance, then it's grab and hold, till she regains her balance. The biggest factor here is the Ataxia. (ED - 'Ataxia' means ‘absence of order’. People with ataxia have problems of co-ordination. This is because parts of the nervous system that normally control co-ordination and balance are affected. Ataxia is the principal symptom of a group of neurological disorders called the cerebellar ataxias. Most are progressive.) It has become a swear word in our lives, as it's the cause for all of her problems. It's what causes the shaking, and jerking. It's due to one of the injuries that she sustained on her brain stem. If you look it up on the internet, you will see that it is said it's irreversable. I belive, and make a statement, that the Good Lord can heal this. When she walks, it's like a person that has a stiff leg. The 'message" from the brain seems to come through very slowly, she takes a step, and then seems to freeze foe a second or two, then the message gets to her other leg, and she takes the next step.
Arms:-
Claudine's right arm, which was "paralysed", is coming along nicely. It moves slowly, but we encourage her to use it more and more to eat with, and take things with. It's interesting that the right arm does not shake / jerk when she puts food into her mouth, where her left arm, which is the one that is most "useable" jerks so much that most of the food falls off of the fork before she can get it into her mouth, and then she messes and bursts into tears! She can't comb her own hair because of the condition of her arm is so jerky, and she can't lift her right arm high enough to comb her hair with it. I still have to help her with brushing her teeth, else the jerking causes her to damage / hurt her gum's..... But, we practice every day. She is trying to be as independent as possible, and we encourage her. Even though it takes her longer, she has to go to the bathroom on her own in the morning, and everything she is capable of doing on her own, she must do. I still have to help her into the bath, and then help her out, and dry her off. Then I help her get dressed, however, she does get dressed "on her own", with much difficulty. And I help her to do the buttons, zips, etc.
Eyes:-
Claudine still has double vision. it's part of the damage to her brain, and I have read that a Dr. Duim says it can come right. It's a problem, because Claudine keeps closing one eye so that she can focus, and it does not look good. What I have noticed in Claudine before the accident, and after... in her eyes - She had the most beautiful eyes, but now it's as if one eye is a bit smaller than the other, and the colour of her eyes is "dimmed" (no sparkle - ED). Almost "heartsore" eyes.
Face:-
The nerves in the left hand side of Claudine's face have been damaged. We make a point of keeping her aware of the fact that she needs to smile, (and she smiles so nice - ED) . She tends to smile on one side of her face (as you may see in some of the photo's), then we need to tell her to smile on the other side as well! and then she does, and she smiles nicely ( I said so!! - ED). Her speech therapist is making a special effort to assist with this and correct the problem.
Memory:-
Her memory is still a big problem. However, it's much better than it was 3 months ago. Where she was blank about events spanning years at a time, or, couldn't even remember what we had done the day before, she now has a good recall of a lot of events. It takes a small thing that she might see, and it's as if a bell rings, and the memories come back. For example, she couldn't remember that she had worked for Foreign Affairs. The other day, an new employee started to work here (an African), and he came over to greet her. He did get a bit of a fright when he realised how much she had changed from the beautiful young Claudine he had worked with, to this young lady in a wheelchair... Back home, Henko asked her if she remembered working with Paul (that's his name), in her department. And she said no, he didn't work with her, but in another department (which she named) and in another building (which she also named!). Henko was surprised, and asked if she can suddenly remember working there, and she said yes. When he asked Claudine who worked with her, she was able to name everyone who was with her in her department! We were ecstatic, as this meant that that specific "file/folder" in her brain was once again open / active! And with it any events around her life at that time. The most of her memory is of you all (The van der Merwe family - ED). It's pretty obvious that you were the most important people in her life at the time. But she has no recollection of the little farm house where she stayed with Johan. She remembers Skollie and Lappies, but she thought that they were our dogs, and not hers in Kimberley.
ED - then a personal part of the letter, addressed to Tina specifically, which I translate more to show the suffering that Claudine has to endure:-
Tina, I did respond to your email request, with telephone number, and I did say that I would let Claudine call you. But, when I said that we should call you so that you two could chat, she just burst into tears. She says you wont be able to hear / understand her, and so even though she really would want to talk to you, she feels it wouldn't work, so she will rather continue to sms you.
Speech:-
Her speech is greatly improved, but still monotone. But you can hear properly what she's saying, even if it is in monotone. On a telephone it would be very unclear, and she still struggles to dictate a full sentence, and breaks the sentence up into pieces. She puts a lot of effort into her speech therapy, because she's now in the habit that instead of talking, because she's shy, to rather "talk" with her hands. When someone greets her, at the clinic, she just waves back. If they ask her how she's doing, she just gives them a thumbs up. I keep telling her to rather talk, instead of "showing".
Cognitive -related knowledge-power, knowing the ability to know regarding the knowledge-related
As Claudine will say when we underestimate he "There is nothing wrong with my brain!" and we just laugh! A lot! But it's true. People tend to underestimate because of the way she speaks, and looks, but there is actually nothing wrong with her thinking. She has retained her sense of humor, and understands 100%. Her mathematical capability is 100%, and the tests she has to do for this are perfect. She may say "childish" things at times, but it's so honest!
Neck:-
I am a bit worried about her neck. After the neck operation, she was still bed ridden in the hospitalised for 3 months, and no therapist ever came to her for neck exersises after she began to sit up again. Now the neck muscles have become stiff. What's worse is that we don't know if this is permanent, because the doctor that did the operation did say that she would lose about 50% of her neck movement. And it's just that. She cannot look sideways, but has to turn her whole body to look to the side. However, the fact that she walk with her head slightly forward makes me wonder if it's her neck muscles that have stiffened, or if that's how the doctor set her neck. At the time he did say that he could not use screws and plates to fix her neck, due to the presence of an artery where the injury was, and he had to "fix" Claudine's neck with wire!?! I wonder if he did a nice / neat job, due to:- After he had finished operating on her, he left the hospital immediately. He didn't come to see us to give us any feedback. ((He was brought in from another facility due to his knowledge of such injuries. Her neck was completely severed (the spine - ED) at the brain.) And when she was transferred to Meulmed hospital, when he saw her again, that he said to me he didn't think that she would live..... She complains about neck pains all the time.
Mood:-
She has her up and down days. But it's me that bears the brunt of it. If I don't respond immediately when she calls, she gets very cross, at me. She's also very worried about her walking. it's probably the one most important thing she wants to be able to do. She prays, and begs daily that her "jerking" should go away. Claudine so desperately wants to be "normal". She desperately wants to get on with her life, and even return to South Africa. She is very, very lonely here. She has no one else to talk to but us. Even the therapist which she sees twice a week, she does not get a chance to talk to, as they begin immediately with the routine, as soon as she goes in. Everything is in German, so she can't even understand the menu's when we go out. It's really very hard for Claudine. Whenever she starts to think about Johan, she starts to cry. Sometimes, whilst driving to the therapists, I'll see her crying.
Weight:-
Claudine is very self conscious about her weight. She has picked up weight, but it's unfortunately due to the sitting in the wheelchair, and the exersises that she does do are not such that it would help with weight loss. But, we now have her on a diet.
There - now I have given you a full overview on the current status. We continue to encourage her, and Claudine does her best. Yesterday she said she wondered if she would ever be able to drive a car again. So I said, let's go - now. Luckily I drive a small Smart, and it's automatic, so we went out with her. I drove out of the property, into the road, and she got in behind the wheel, and we let her drive a few kilometers. At the back of our property is a forest, and there is a road there used mainly by pedestrians for their leasure. In spite of the fact that it's a left hand drive car, and that we drive on the wrong side of the road here, she did very well! Obviously with one eye closed so that she could focus, but her reflexes were very good. I was watching for it because I know that after a brain injury, reflexes can take years to restore. (If ever - ED) She drove very slowly, but perfectly! When we told her to remember to stop upfront, so that we can check if there are any cars coming, she replied "Yes, I know"... and stopped neatly on the correct spot. That little drive did her the world of good. It gave her a lot of confidence, and she wanted to practice some more when we got home.
Fanie, we want to thank you so much for the fact that you are still paying Claudine her salary. (Well done Fanie, we are so proud of you, and to be associated with someone of your caliber - you will be blessed over and over... ED). We really do not expect to get it. We know that times are tough right now for everyone, and that business is not good, anywhere. But thank you very much, again. We are still looking into the Road Accident Fund. Massimo got us a contact with a firm of lawyers that specialise in this, and we are in contact with them. We told them that we had previously been in touch with other lawyers, who had told us that we could not submit a claim as there was no other vehicle involved. (That does not sound right to me - ED). But these guys are willing to submit a claim on our behalf. Being overseas, however, presents a bit of a problem, but we will cross those bridges as and when we get to them. Remember that the road fund have their own panel of doctors who will want to see the patients themselves. Not sure how we manage that. Another fear of ours is that we have to pay for the consultations with these doctors ourselves. You can say that you can recover these costs from a successful claim, if it's successful, but you still need to lay out the money upfront. I know the doctors charge between R2000-00 to R5000-00 per consultation, and report, for the Road Accident Fund. We just not sure what to do. She will have to see a Neurologist, Orthopedic Surgeon, Neurophysiologist, and Surgeon for reports.
Attached are a few recent photos.
Lots of love to you, and all your loved one's.
Alta
ED - Claudine and the Smart car (for a smart girl....!) She does have a damn fine smile! - ED
ED - Doing the tourist thing - Dark shades and all - I must say it looks lovely there.
ED - Working out - you can see the determination on her face! You go girl!!
Ed - And finally, taking those small uneasy steps. Brings to mind a quote - "One small step for man, one giant step for mankind". Claudine - I'm not sure if Mom reads this blog back to you, or if you read it for yourself, but from all of us here in South Africa, we miss you stacks, we are very proud of the effort you are making to get better. We "know" your pain, even if we have not had the misfortune to experience it, but can live it with you through the pictures, and the letters. I believe you are a miracle child, and there is a reason for all of this. We can only wait, and pray that whatever the reason is will be presented to us soon, and that your healing process will be speeded up.God Bless - you, your Mom & Dad
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