- Sam Davies
- Born 1969 England. Arrived in Australia 1972. Single. No children. Partially disabled from severe osteoporosis, pituitary gland tumor (benign), myopathy and Ehlers-Danlos Syndrome (hypermobile in every joint). 18 yrs caring for my quadriplegic cerebral palsy friend, Rob. Ceramic artist www.sam-davies.blogspot.com
Friday, May 31, 2013
CROCHET PRESSURE CUSHION
During the age of 9-11 I lived in England with my beautiful grandparents on my mother's side while a serious domestic situation was happening between my parents in Australia. Best two years of my life apart from the time travelling Australia from 1972-74 when my parents and me - their only child - first arrived in Australia. But anyway, I had a cousin who knitted fantastic cardigans to sell. She also crocheted. My Nannie showed me how to knit and then Maureen showed me how to crochet. So some many years later at the age of 44 the skills have come in handy.
Recently I've noticed the polestyrene beads used to fill bean bags and which I use to fill Robbie's cushions with are collapsing within a few weeks instead of many weeks. Special pressure cushions out of foam have a limited life due to Robbie spending 24/7 in his wheelchair and have not sat him comfortably since 2009. Other systems also failed, thus resorting to the very successful bean bag filler. But now that the quality of the bean has gone - I explored my brain cells and dragged out a large crochet needle I'd used some years ago to make some twine netting for a piece of my art work.
And with a worsening twist in his hips that we hope to have improve with a partial tendon release on the 4th of June he needs a cushion that will help keep the constant pressure area stable.
About 42 balls of yarn later I've managed to come up with a crochet pressure cushion comprising of 12 layers of large double crochet stitch to allow for the material to breath. Designed to fluff up like a pillow and repositon. Also can add, subtract or rearrange the layers. Put the layers together with more yarn so no slipping ocurrs and then wrapped it in a cloth towel. Today's the first day of its use and so far Robbie says it is the most comfortable cushion he's had in years. So time will tell how successful the material.
Now to measure for a back cushion as the foam one bought only a few weeks ago is already collapsing under the nighly pressure.
But first he wants me to make him some special pink mittins and a colorful hat. It's Autumn.
iPad art app
Couple of days ago I opened an app game where the user draws something and others have to guess what it its. Here below is my first effort.
About to get a jab.
Presently I'm looking through some of the thousands of art apps out there to find one that will suit my limited fine motor abilities. Fortunately many of them only cost a dollar or so. Sam said to down load a few after the try before buy. Then I told him I've only 40 cents left in my account. Drat!! He only topped it up a couple weeks ago.
Saturday, May 25, 2013
BLACK BOARD TRY-OUT
Trying out a black board and chalks
First drawing with chalk. Man with bow tie.
Video of trying to write the lower case 'a' and lots of rubbing out with a cotton sock.
Note that I have a bad cold during this. Now I'm off to sleep though early in the day (3.30 pm) and will miss my karaoke night for a second week in a row.
Will put aside the black board till I'm more efficient with writing on paper or a white board due to the fragility of the chalk.
Monday, May 13, 2013
(I'll update this page regularly, so anyone interested in Robbie's writing and drawing progress, please visit this page again)
(I'll update this page regularly, so anyone interested in Robbie's writing and drawing progress, please visit this page again)
Robbie's full of surprises. When I first encouraged him to draw nearly 20 years ago he said he couldn't so I just left him to his key board. And he didn't want to draw as he didn't want his drawings looking like a three year old's and making him feel less confident than he already was. He also had a terrible time battling with his left hand trying to stop what his right was doing and needed the left hand to grasp the edge of his tray which was very tiring and a barrier to activities such as eating easily so drawing was not going to be relaxing. So I left him alone. But these past few months I've suggested he try to write with a pen due to his "X" signature improving. Told him it would be handy and might help his fine motor skills and perhaps give him a feeling of accomplishment. But he didn't give it a go till today.
So I drag out the paper and a marker pen all geared up to do the "trace the A" thing and basics. Robbie didn't want to trace as he said he knew what letters looked like. So left him to do freehand. After doing four A's he was pleased with his attempt. Having got that out of his system I encouraged him to trace over the A's I'd pencilled before hand. He did a brilliant tracing job as seen in the video above. The last A became a bit crooked as he was no longer central.
He wanted to trace some more A's so I drew three more.
Having done an excellent job tracing the extra three A's and at a rapid pace he decided to do some more freehand A's.
After the freehand neatness his confidence blossomed and he said he was going to write his name. I couldn't believe it. I'm pleased I videoed all this. The only writing tried while with me came to nothing or he scribed with great difficulty the X signature he's required by law to do sometimes on forms. He said he could write his name at the age of six but it was decided by the school teachers at his special school that he'd be better off with a key board as he was too slow (and they were obviously too impatient). He thinks he was about thirteen the last time he wrote his name by hand. So the above video captures the first time in 27 years that he's written his name.
Yes, we're going to frame this and hang it up. I was so impressed with the B's!
Robbie was so accurate with his tracing.
Pictures taken from the videos. Note that Robbie only did this writing exercise for about half an hour. So he started with the four freehand A's then traced my pencilled A's below them.
He then wanted to trace more A's. After the tracing he again did five free hand A's. I am astounded at the difference between the first freehand A's and the second attempt within half an hour. There's obviously a good activation of the right side of Robbie's brain. Now he's keen to do some drawing. I can't wait!! I'm so proud of him. I'll have to introduce him to, "Drawing on the right side of the brain" by Betty Edwards. AND his left hand behaved and was relaxed!!!
As with the A's, Robbie first freehands the B's.
Followed by tracing over pencilled B's.
Finally, doing freehand B's. Again the improvement within 15 minutes is remarkable.
After doing the B's he now draws his first Bee. He didn't want to look at photos of bees first. Nor does he for is next attempt. He so far is only wanting to draw what is in his head and not be influenced by pictures.
First freehand of B's as shown in videos.
Then the second attempt at freehand B's after tracing.
Robbie's first Bee drawing.
Saturday, May 18th, 2013
Video 1 (2:24 minutes) Robbie using lined white board sheet.
Video 2 (2:12 minutes) Attempting the alphabet on blank white board sheet.
Video 3 (50 seconds) Writing his name. It wasn't till a couple hours later that we both realized why he was having such a problem with this session of writing. He'd never written on a white board before so he was slipping all over the place. On top of that he was getting a bit nervous about me standing too long with my bad back while filming. Thus he also ended up with a severe attack of nervous giggles. So I put the camera away and left him to do what he wanted.
So, although still scribbling on the slippery surface, but free of the giggles, ended up with the smiley bee above.
Picture from video 1
Picture from video 2
Picture from video 3
Using paper as a medium is preferable to the white board surface but Robbie enjoyed being able to erase anything he didn't like by himself and he hates wasting paper. But he also realizes that getting familiar with different materials while writing and drawing will make him more versatile and give him more options and open doors to his creativity.
Over the past couple of days Robbie has been determined to conquer writing 'a's. So this moring he with great enthusiasm took marker to paper. Not having much success he tried to trace over some 'a's I'd pencilled. He just could not do it. Probably because it was rather cold this morning making his hands stiff. And also getting over the tail end of a bad cold didn't help his concentration. So I suggested he not worry about the 'a's and just see how he'd go writing his name a few times to warm up.
Warmed up the 'Robbies' looked rather good and similar.
Sunday, May 12, 2013
Wednesday, May 8, 2013
Went to one of our local eateries yesterday. After one mouthful given me by Sam I realised the texture of the potato might be user friendly and said I'd try and feed myself. Been sometime since I did it myself due to fatigue battling my left hand that has a life of it's own when I eat and tries to push my right hand away. In the video my left hand is seen grasping the edge of my tray to keep it under control.
The potato didn't break up when stabbed with the fork and I co-ordinated well. All that iPad playing and having to lift it for repositioning - depending on the game being played along with turning pages of many paper-back novels I've been reading the past few weeks seems to have helped with some of my fine motor skills. Sam couldn't believe how fast I'd polished it off and hardly got any food on my clothes. Looking forward to another dish of the same in a few days time.
Most foods won't pick up easy with a fork or spoon or fall off as I can't help twist any eating utensil when bringing food to my mouth. Another reason Sam generally feeds me. He likes me to enjoy my food like everyone else which also allows me to access a lot more variety. He's use to feeding both of us at the same time and generally serves up food on the same plate. Seeing how skilled I've become with the fork he's reviewing food textures and hopefully I'll be back to feeding myself some of the time.
Video 2 (10th May, 2013)
Only several days after video 1 was taken I've improved more. I was able to eat the entire portion of potato without needing to grip my tray to control my left hand. And my driving to the shops has improved as I'm more central and drive a little faster. Still no sense of direction and must follow Sam closely and listen for instructions and wait for hand signals.
Monday, May 6, 2013
ANOTHER HELL WEEK
On the 1st of May I came home from an out-patient appointment that I'd been told would be an appointment to set a surgery date but left very depressed and even more pissed off as Sam made sure I'd not run out in front of the first bus I saw. But I reassured him I wouldn't as it would traumatise some innocent bus driver and passengers.
And why was I such a happy chappy. Well, the surgeon who many months ago wanted to do a minor tendon release has now decided he needs to consult further with a particular doctor who already is in full agreement with the operation. He fears making my condition worse. So he is making me wait for another six weeks or so then we might get an appointment. I've lost all faith and confidence that I will be free of my legs that have ruined my life.
Concerns over making my condition worse!! My spine has started calcifying and thus fusing due to being stuck in a wheelchair 24/7. It feels like my twist is worsening weekly. I'm now with a constant pressure area needing padding with a special plaster and Sam tearing his hair out with making sure my cushion is correctly placed. It's harder and harder to clean me due to inaccessibility. My penis is getting crushed and causing pressure sores and areas that require me to be without urodomes occasionally as my penis also swells up. So more work for Sam as he has to keep changing nappies and bags that he attaches to my penis. And it's getting more and more painful to sit back in my wheelchair to sleep due to the stiffening of my spine. And the doctor's worried about worsening my condition!! I don't want to live so really do I care about risking more pain. NO. NO. NO. I'm 40 years of age. I'm not a child and it is my business. The fact that some with cerebral palsy have had failed or inappropriate operations is no reason or excuse not to give me a chance. I'm not the 15 year old cerebral palsy boy whose spine was surgically fused recently by some 'professional' and ruined further the child's life. How can I be compared to this unfortunate boy and some doctor's stuff up!! Just a convenient cop out not to deal with me and my situation, I feel.
Permanent pressure area.
Told I can't force doctors to treat me if they don't want to. But since there are a couple of surgeons wanting to help me that those that don't are aware of and are preventing them is just down right malpractice and abuse of their power and position as far as I am concerned. The appropriate Federal Government health representative knows about the situation but her hands are tied. All because of a couple of very powerful public doctors. But since I'm at the mercy of Australia's public health system they have the last say to whether I live or die. Other doctors did the same to Sam when the Federal Governments over the years left him at the mercy of public doctors though fully aware of his plight and cries for help and now they are determined the same happens to me it seems. THANKS.
My electric wheelchair still is not working properly. Same problems. I was bed ridden for eight weeks waiting for the return of my wheelchair. So I am not impressed. How long will I have to wait this time. I can't even get fitted for my new electric wheelchair till I have had the appropriate operations on my legs!! I'm just being lead around in circles.
A couple of days after the 1st of May operation let down my face breaks out with severe psoriasis again. Then I come down with a cold. This is probably all stress related. I want Sam to put me out of my misery. But he says 'No bleep bleeping way' as he's the one that will be faced with up to 14 years in prison for helping me suicide when it's the doctors' inaction to help me that has brought me to this lowest of lowest miseries. We are both very unhappy he was stupid enough to interfere with my suicide attempt back in 2009. Now I'm trapped and he's trapped seeing me in more pain and misery.
Above: Bandage holding a flannel in place last night for my runny nose due to my cold and my left eye is runny, swollen and itchy that I left hospital with during my last stay having laid on it for several days. Sam's giving it salt baths. And psoriasis that is easing slowly with emu oil. Applying bicarb's stinging too much at the moment.
Then to cap off a crappy week my penis swelled up this morning and looks like I'll be without urodomes for a few days peeing into a bloody plastic bag filled with nappies. My penis guard isn't comfortable anymore as the legs crush it into my groin.
And Sam's having to take sedatives with all that is happening with the doctor run-a-round. And more pain killers. Which is making me feel even worse and weighed down with guilt seeing him have to take more drugs. He tried a touch of alcohol the other night. Very, very small amount and it still made him feel ill for two days. He says not to feel guilty as it's he who's at fault for interfering with my 2009 suicide attempt. At least he agrees with me that trying to start a new life in NSW was a waste of time. Australia's treatment of many carers and too many handicapped is deplorable and Australia wide.