My Story.....

Update on Gordon Reynolds as of 23 February 2006

Thank you

Gordon is doing well; his walking has improved but still not talking. We had a slight setback on 13th January 2006, Gordon had a seizure at home. He was admitted to hospital, brain scan done, blood tests done, nothing could be detected as to why he had the seizure. It was put down to an epileptic fit and he is now on Epilim. We think it was the heat that day. Gordon walked outside and when he returned into the house, he had the fit. But all has been fine since and we hope it does not happen again.

Gordon was tested at the University of Pretoria - CAAC - Communication and Augmentation Centre on 7th February 2006. The results of the tests: Gordon needs pictures to communicate and Boardmaker Plus was recommended, pictures which speak. I was referred to Celeste from Inclusive Computer Solutions for the software. They were surprised that an adult would use this as normally it is for children. But it works for Gordon.

I put out an email to all of our good friends for sponsorship to buy the software and a notebook/laptop for Gordon so that he could at least be mobile instead of sitting in front of a pc at a desk. Our friends, Simon Bowden, Glen, Kirsty Walker, Thea Marx, Derek Palmer, Tinus Rautenbach, and Berto Perreira sponsored Gordon and with a final contribution from me, we have enough money to get what is needed. Lauren Canavan who works for a computer company, arranged for a very good cost price for the laptop. The software has been paid for and the notebook is on order.

Gordon is very excited and motivated to start using his new communication aid. A lot of people seem to think that communicating with pictures will make the person lazy to speak. That is not so, in fact it makes the person more motivated to talk. Gordon is already saying "I want" when he looks at the picture which indicates I want. We trust and have faith that this is the beginning of something good...Gordon being able to talk.

The thank you letter is to our friends which was done with Boardmaker Plus.

Please email me if you have anything you would like to let me know: lreynolds@klear.co.za

Update on Gordon Reynolds as of 7 December 2005

Linda, Gordon and Nikki

Our story went up on the website 10 months after Gordon's stroke on 4 November 2004.

It is now 13 months later and Gordon has made absolutely wonderful progress. From being in such a dark place we have found that there is light at the end of the tunnel.

In August 2005 we moved him from the Netcare Rehabilitation Physiotherapy Centre to Biokinetics. We felt that he had been rehabilitated as far as physio would take him and he needed stretching and strength exercises to take him forward. Also the Rehab environment was getting him down.

Gordon also indicated that he did not want to go to speech therapy any longer because he was not getting anything out of it. He is still to date, unable to speak, and still uses his favourite made up words "tent" "hortent". My name is still "Tent" as he cannot say Linda. He can also say "yes", so it gets kind of confusing when he shakes his head "no" but says "yes". But we are managing. We don't know when he will talk again, but will start speech therapy again in the New Year and give it another try. Gordon cannot write, he cannot remember the alphabet, he cannot spell, but strangely enough he can read. He watches TV, travel and cooking channels.

So off to Biokinetics we went, 5 days per week for an hour per day. 3 days stretching and 2 days swimming. In November we slowed down to 3 days per week, 2 days stretching and 1 day swimming as the 5 days was tiring him out.

Gordon can now walk, still with his tripod, and slowly, and he still uses his wheelchair outside. I have put handgrips on the doorframes so that he can go up and down the steps in the house. But what a difference the stretch and strength exercises have made. He can now move his right leg and do leg raises. From 0% movement in the knee and quad muscles, we now have 10% movement. From 10 October his leg strength in the hamstring of the right leg went from 33 kilograms to 44 kilograms on 17 November. From below the knee seems to be the problem, as if the nerves are not talking to the muscles. But we are positive in time it will come right.

At Biokinetics Gordon does balancing on a small trampoline, he cycles for 20 minutes, he gets stretched so we don't have a lot of stiffness, he does weights, he swims and does balancing in the water as well as exercises. His trainer puts him on the gym equipment for weight exercises. He does floor exercises and many more.

At home, Gordon can do most things for himself now.

The hypersensitivity on his right side that was paralysed seems to have got better with time; he indicates out of 10 the sensitivity is now about 3 out of 10. He indicates that he has feeling in his leg and can feel when I touch his leg or tickle under his foot.

Our goal is to not use the wheelchair in the house at all by end December 2005. Then work our way to mobility outside and getting rid of the wheelchair totally by mid 2006.

I am so very proud of Gordon; he is always happy and positive and is handling the whole situation so very well. I will do my best to help him with this journey. I know if it were me he would have done the same.

To all of you out there, it does get better, so stay positive and have faith.
Linda and Gordon Reynolds 7 December 2005.

Linda Reynolds, wife and soulmate of Gordon, this is our story:

Linda and Gordon

Up until 30th October 2004, Gordon was a very fit, strong, man. Never had a days illness in his life. Yes, he did smoke and drank a beer, moderately. We built our own home together, rock by rock, he ran his own business, selling diesel generators and UPS's. A man who lived and enjoyed each God given day to the fullest, always believing what can be done today must be done and not put off for tomorrow.

On 30 October 2004 Gordon started getting pains in his stomach. I rushed him to the doctor and he was admitted to Flora Clinic hospital, Florida SA, immediately with gallstones. The scan showed a gall bladder with so many stones, we could hardly believe what we saw. He was operated on 1 November 2004, approximately 45 gall stones and the whole gall bladder was removed. The surgeon waited two days before he operated because the gall bladder was so inflamed. Gordon was put on a drip on 30 October 2004, with nil per mouth until the day of the operation, little did we realise at the time he would not eat another meal until January 2005.

The operation was successful, and Gordon was admitted to Intensive Care overnight for observation. On 2 November he was moved from ICU as he was well and the surgeon was happy that he be sent to the general ward. This is where things went horribly wrong.

The drip had come out of the vein and was leaking into his flesh. I had called the nurse a few times to come and fix it; it was finally done an hour later. In the afternoon I had seen that Gordon could have tea and water. Nothing was brought to him. I got him a jug of water and saw to it that he had sips throughout the afternoon. He did not really eat the lunch that was brought to him. When I left Gordon that Tuesday afternoon he was sleeping and doing fine. Overnight, Gordon perspired due to the ward being very hot, his drip has stopped and no one had came to check on him. As a result he dehydrated to the extent that he was put back in the Intensive Care Unit on Wednesday morning, 3 November 2004. Once in ICU he told me it was much cooler in there and he was getting the attention he needed. I left him on that Wednesday afternoon, not knowing that this would be our last conversation, exchange of words, we would have.

On the morning of Thursday, 4 November 2004, after a walk down the passage with the Physiotherapist, Gordon got back to his bed in ICU and suffered a massive stroke, at the age of 56. He was immediately intubated and put on Dormican and Heparin. It was a left arterial artery clot with several pulmonary emboli. I was in my car, driving on my way to the hospital when I got the call. I was devastated. When I saw him lying in that bed, unconscious and unable to speak, I thought my world had ended. The tears rolled down my face, I sobbed, I could not believe what I was seeing. A simple operation had turned into a nightmare.

From that day on I virtually lived at the hospital, watching him like a hawk, making sure that I knew the name of every drip, medication, he was given, at one stage he had 12 drips hooked up into his veins. In-line artery drip. I made sure I knew what the readings on the monitor he was hooked up to meant. But in spite of all this and my being there, things just went from bad to worse.

Over the next two months, the following events took place:

Directly after the stroke, the drug Dormican was given and he slept for a week, when his lungs collapsed, he was ventilated again and Dormican, Morphine, and a paralysing agent was given and he slept for another week and he stayed on the ventilator up until the last week in December 2004 when he was moved to rehab.

The fact that he made it out of there after 2 months is a miracle in itself. Someone was watching over him, it was definitely not his time even though the specialists told me to be prepared because they did not think he would make it.

As a result of the stroke, still today, 10 months later, he is paralysed on the right side, arm and leg, and cannot talk, has expressive aphasia and apraxia. The right side of his body, the skin is super hypersensitive which makes it difficult touching him that side.

In the last few weeks, the date now being September 2005, Gordon has started to walk between parallel bars on his own, still unsteady but we are getting there. He goes to Barney Hurwitz Rehabilitation Hospital for physio and speech therapies. His speech therapist is making good progress with him, one on one. But at home he does not say the words at all, but uses his own words, "tent" "hortent". Its as if his mouth muscles have forgotten how to say words. If you mouth the word and he watches you he can say it, sometimes he will say "bye" or call my name, or say "no", these words sometimes just fall out automatically. For now, my name is TENT, which he often says ever so lovingly. But, no talking as yet on the whole.

Fortunately Gordon can read and understand everything that is going on. His eyesight was affected but seems to have come right. He can't seem to spell though. He can copy articles and write them with his left hand.

He plays dominos and beats us all the time. So his mind is fully alert. Being right handed, he is now managing to write with his left hand and the handwriting is getting better, but only copying articles or words, no writing down of his own thoughts. At home he is very independent, the only thing I do for him is help him in the shower. He is doing extremely well; it will take time, which I have to force myself to accept.

I pray so very hard everyday, for guidance, for strength, and to make the right decisions. I pray he will talk and walk again, I ask myself what is more important, talking or walking, what do I pray for first. I used to pray that he walks because I was sure the talking would follow. But now realise, talking is more important than walking so I pray for another miracle because that is what they are, and we have had many of them along the way.

I can only write about the events just before and after this tragedy, I still have all the trauma of what happened in the ICU in my head and keep asking why this happened to us. Gordon on the other hand cannot remember November, December, January and part of February due to the drugs (Dormican) that he was given. He cannot understand why I cry. He remembers everything of his life before the operation. My frustration is I cannot understand how he feels and what he is thinking, because he cannot talk to me. I can see his hurt and frustration in his eyes, but he cannot express it in words. I look forward to the day we can sit and have a conversation again, I tease him and tell him when he can talk its going to take weeks of talking to get all he wants to say out and I will just sit and listen.

This experience has made me more understanding and compassionate of people with disabilities no matter what kind of disability. Who ever thought I would have the words "stroke" and "rehab" in my vocabulary. I had never seen the inside of an ICU or rehab centre in my life until now and was absolutely stunned and blown away by it all.

The other things getting used to, I am now responsible for everything. Managing all of the money, payment of all accounts, running the household, buying the groceries, the garden, taking the dogs to the vet, fixing things that go wrong or break, the swimming pool, the fish pond, feeding the geese, painting, the generator, building a room for it, everything that Gordon did is now also my responsibility. I never knew his Internet banking passwords, it was a nightmare. Information we should share with our partners, we don't. And at a time like this you are so devastated you cannot think. His cell phone, he has no use for it, he cannot talk. I tried to get the contract cancelled and Supercall said "no". A contract is a legal binding document, they showed no empathy whatsoever. So I pay for a cell phone that we don't use for the next year. I, fortunately, managed to get Gordon to sign a power of attorney so I can deal with all his personal things on his behalf. Just trying to get information on his behalf, can be a nightmare, especially from any insurance company. All these things that are never discussed when we are in the prime of health. I tell everyone I know, let this be a lesson, share your information with your partner, write it down and lock it in a safe place. One never knows, your life can change in the blink of an eye.

The positives in this life changing experience, we have come to realise that life is so short, all our short term plans for this year and next have been cut short, but are positive what we had planned we will eventually get around to. This year and next is a year of rest for Gordon. I, for one, now live in the moment and do not think about what is going to happen tomorrow. I get to spend quality time with Gordon, we have become so close, and I very protective of him. It has taken such an event in our lives to make us realise how very much we love and care for each other. No matter what happens we will always be there for each other, in sickness and in health.

January 2007 -Update on Gordon

Linda and Gordon At the beginning of 2006 we got Gordon the laptop and the software with talking pictures. I printed over 1000 pictures and laminated them for Gordon. All I wanted him to do, was at the end of the day, when I came home from work, to put the pictures together in a storyboard for me so he could tell me how his day was. Gordon did 7 storyboards and that was it. It took him the better part of 3 hours just to put a storyboard together. But we will keep trying. Two very good friends of ours Daryl and Carol referred us to Dr Annemie Peche, a Clinical Psychologist who specializes in Neurofeedback Therapy. Daryl had his stroke 2 and half years ago and with a year of neurotherapy he has come along in leaps and bounds. His talking is steady and strong and fluid compared to the first time when I met Daryl, he kept searching for the word and Carol did most of the talking for him. I was so amazed by what the Neurofeedback Therapy had done for Daryl. He is also starting to get movement in his right arm again and his speech has improved tremendously. Visit the website: http://www.neurofeedback-therapy.co.za to get more information on this therapy. Before Gordon started the Neurofeedback Therapy we were referred by Dr Peche to the Brain Research Centre at the Sunninghill Hospital in Johannesburg. Gordon underwent a full EEG and 4 hours of various tests on the computer. The report we got back from the Brain Research Centre in Australia, this was where Gordon's results were analyzed, showed that Gordon had extensive damage to the left side of his brain as a result of his stroke. From this report Dr Peche knew exactly which hot spots on the brain had to be worked on with the therapy. Gordon started Neurofeedback Therapy in August of 2006. We have one session per week and if time permits a double session. Since the therapy started we have noticed a marked difference in Gordon's pronunciation of words. He still cannot speak, and uses his own, TENT TENT PORTENT, and he still calls me TENT. When I sit with him and help him to say words, he says them much clearer and now for the first time when I point to NOSE, he can say NOSE out of his own, when I point to eyes and ears, he can say them out of his own. He has never been able to do this. He still cannot use the words out of his own, but when I prompt him he can say them. Dr Peche has started working on the communication and speech initiation part of the brain. Gordon also now tries to say words when he talks, and he WANTS to talk. Gordon has also indicated that since the therapy started he has full feeling on the right side of his face again. Gordon will continue with this therapy for as long as it takes. It has been 2 years and 2 months now that Gordon has not been able to speak or use his right arm, but we have faith and will continue to do all we can to improve our situation. He is walking with much effort and we hope it will improve. Our dear friends in Perth Australia, Pat and John, John had his stroke in June 2004 and also cannot speak. John attends Neurotherapy as well in Perth and he has indicated that the sensitivity he has on his skin has decreased from a 9 out of 10 to 1 out of 10 since he started his neurotherapy.

Support

I have had the most amazing support at work from my General Managers, Bertus and David. I have had support from my closest friends and my closest family. Thank You, without your support Gordon and I would not have been able to accomplish what we have.


Gordon and Linda Reynolds 12 January 2007

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Thanks to Linda for sending in her husband, Gordon's profile. Anyone else who would like to share their story can send it along with a photograph (if you're not shy!)



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