“British Army Officer”, “Round the World Tall Ships Captain”, “Judo Champion”, “Rugby Player”, “Karaoke King”
Our Dad was born in Doncaster, South Yorkshire, 21st November 1945 – a post war baby. He was the youngest of 4 sons to our Grandma and Grandad and is very well loved by all who know and have met him. When he was a young boy, he was County Champion in Judo – something his parents were always spoke very proudly of. He went on to join the British Army at 16 years old and worked his way up through the ranks to become Captain Ian White of the Royal Electrical and Mechanical Engineers (REME), serving a total of 29 years for his country. As well as being very well liked and very good at his job as a commissioned Army Officer, he also represented the Army in various Rugby and Sailing competitions. He raced for the Army in several major sailing events, including one race where he took his team from Bombay (India) all the way to Singapore, which took around 6 weeks altogether.
Dad met our Mum whilst posted in Germany and went on to have us! Two daughters (Jenni now aged 45 and Melanie now aged 41) and a son (Ian Jnr now aged 32). We were always very active and went on lots of memorable camping holidays, bike rides and days out as a family.
Life after the Army
When Dad left the Army he settled in Germany and eventually remarried, after his relationship with our Mum broke down. Petra has been his rock now for more than 15 years and has given up work to do the job of caring for him full time to help him cope with his physical impediments and his mental well-being. Dad’s condition has been very difficult for him to deal with emotionally, as all of his plans for post-retirement have had to be cancelled now.
Dad is, in our opinion, a great singer and he absolutely loves singing Elvis and Cliff Richard songs at pub Karaokes and parties. He regularly uploads videos to his YouTube channel, here is one of his songs recorded on his laptop in December 2012
Whenever Dad came to England to visit us, we would persuade our local pub to change the dates for the next Karaoke so that he could sing there during his visit. The locals loved him to bits and always looked forward to his visits, because he would be the life and soul of the party, sometimes even wearing fancy dress just to amuse them all. They, like all his friends and family, are also devastated at what is happening to him. Here is a video of him and us, his two daughters, with our rendition of Living Doll at one of the Karaoke events a few years ago:
Living With ALS
We miss Dad’s visits to England, the last time he came over independently was 3 summers ago when he rode all the way from Germany to England on his Honda Shadow motorbike. He caught the Rotterdam to Hull ferry, stayed first of all with our Uncle in Berwick upon Tweed, then our other Uncle in Barrow upon Humber and then our Uncle in Doncaster. Then he made his way down South after a few days and spent some lovely days here with us and then down in West Wittering at the campsite near the beach.
We could already see changes in him during that visit – his arms were skinny and hanging down in an apelike fashion. At one point he accidentally tripped over sideways and wasn’t able to stop himself with his arms – this was a shock to us, but at the time we all just thought it was due to him having retired from work and that his arms weren’t being used as much as they had been previously. When he left us after a few days we simply did not realize that that would be the last time he would have travelled to see us independently.
At the beginning of 2012 Dad’s oldest brother, who lived in Doncaster, died. Without Melanie knowing, our brother (Ian) who also lives in Germany, took my Dad to the airport where he was catching a flight to attend his brother’s funeral. Jenni secretly knew that Dad would be landing at Stansted at a certain time and pretended she had taken the wrong exit as we were driving up North. When Melanie suddenly spotted Dad walking out of the airport, her face was a picture!! We took Dad up to the funeral, which was a nice surprise for the rest of the family – although they also gave him a big telling off for coming over when everyone was so worried about his health. Again we had a nice few days with him and our brother and his girlfriend also joined us from Germany, then accompanied and assisted our Dad on the flight back home.
A few months later our step mum brought Dad over again in the car to go to a family wedding. Unfortunately Melanie was not able to see him then, but Jenni travelled all the way up to Barrow upon Humber just to see him for those few hours. That was the last time he visited England, as he is now much too dependent on others’ assistance and the equipment he uses to get through day-to-day life.
ALS or Amyotrophic Lateral Sclerosis
also referred to as motor neurone disease and as Lou Gehrig’s disease in America
Extracted from Wikipedia Article on ALS
ALS causes muscle weakness and atrophy throughout the body caused by the degeneration of the upper and lower motor neurons.
Unable to function, the muscles weaken and atrophy. Individuals affected by the disorder may ultimately lose the ability to initiate and control all voluntary movement, although bladder and bowel sphincters and the muscles responsible for eye movement are usually, but not always, spared until the terminal stages of the disease.
Cognitive function is generally spared for most patients, although some (about 5%) also have frontotemporal dementia.Sensory nerves and the autonomic nervous system are generally unaffected, meaning the majority of people with ALS will maintain hearing, sight, touch, smell, and taste.
The earliest symptoms of ALS are typically obvious weakness and/or muscle atrophy. Other presenting symptoms include muscle twitching, cramping, or stiffness of affected muscles; muscle weakness affecting an arm or a leg; and/or slurred and nasal speech.
The parts of the body affected by early symptoms of ALS depend on which motor neurons in the body are damaged first. About 75% of people contracting the disease experience “limb onset” ALS, i.e., first symptoms in the arms or legs. Patients with the leg onset form may experience awkwardness when walking or running or notice that they are tripping or stumbling, often with a “dropped foot” which drags gently along the ground.
Arm-onset patients may experience difficulty with tasks requiring manual dexterity such as buttoning a shirt, writing, or turning a key in a lock. Occasionally, the symptoms remain confined to one limb for a long period of time or for the whole length of the illness; this is known as monomelic amyotrophy.
Over time, patients experience increasing difficulty moving, swallowing (dysphagia), and speaking or forming words (dysarthria). Symptoms of upper motor neuron involvement include tight and stiff muscles (spasticity) and exaggerated reflexes (hyperreflexia) including an overactive gag reflex.
To be diagnosed with ALS, patients must have signs and symptoms of both upper and lower motor neuron damage that cannot be attributed to other causes.
Disease progression and spread
Although the order and rate of symptoms varies from person to person, eventually most patients are not able to walk, get out of bed on their own, or use their hands and arms. The rate of progression can be measured using an outcome measure called the “ALS Functional Rating Scale (Revised)”, a 12-item instrument administered as a clinical interview or patient-reported questionnaire that produces a score between 48 (normal function) and 0 (severe disability). Though there is a high degree of variability and a small percentage of patients have much slower disease, on average, patients lose about 1 FRS point per month. Regardless of the part of the body first affected by the disease, muscle weakness and atrophy spread to other parts of the body as the disease progresses.
In limb-onset ALS, symptoms usually spread from the affected limb to the opposite limb before affecting a new body region, whereas in bulbar-onset ALS symptoms typically spread to the arms before the legs.
Late stage disease symptoms
Difficulty swallowing and chewing make eating normally very difficult and increase the risk of choking or aspirating food into the lungs. In later stages of the disease, aspiration pneumonia and maintaining a healthy weight can become a significant problem and may require insertion of a feeding tube. As the diaphragm and intercostal muscles (rib cage) that support breathing weaken, measures of lung function such as forced vital capacity and inspiratory pressure diminish. In respiratory onset ALS, this may occur before significant limb weakness is apparent. External machines such as bilevel positive pressure ventilation (frequently referred to by the tradename BiPAP) are frequently used to support breathing, first at night, and later during the daytime as well. BiPAP is only a temporary remedy, however, and it is recommended that long before BiPAP stops being effective, patients should decide whether to have a tracheotomy and long term mechanical ventilation. At this point, some patients choose palliative hospice care. Most people with ALS die of respiratory failure or pneumonia.
Most people with ALS die from respiratory failure, usually within three to five years from the onset of symptoms. The median survival time from onset to death is around 39 months, and only 4% survive longer than 10 years.
Other terms used in the past to refer to this form of ALS have been flail arm syndrome, amyotrophic brachial diplegia syndrome, dangling arm syndrome, suspended form, orangutan sign, dead arm sign, bibrachial palsy, rizomelic amyotrohy, and “man-in-the-barrel” syndrome.
We are hoping to get a cutting edge Gene treatment for Dad to help slow the disease and give him the retirement he deserves. This involves harvesting stem cells, cultivating them, multiplying them and re-injecting them into his body to help halt the ALS progression and reverse some of the damage done. The quicker we do this the more chance of success we have so it is vital we raise the money quickly.
The cost is £33,000 and we desperately want to raise this before the end of 2013.
Please help and donate today, get a T-Shirt or come to an event.