Funding for Ken
Donativo protegido
Firstly, My name is Tonya and I will be blogging on behalf of Ken Stevens over the next few months.
Now, many of you may already know Ken. Most of you have probably seen him in the gym. But what many of you don't know is what struggles he faces personally everyday.
In this blog I will start by telling you a bit about the man and his achievements, followed by his story and the journey that he now faces.
Ken has been involved in the fitness industry for over 20 years, 3 of them in a professional capacity. He began training in Martial Arts at the age of 8, starting with Judo then going on to trying many different styles from Karate, Kung-Fu, Thai Boxing, Tai-Jutsu, Ju-Jitsu and Aikido. At the age of 27 Ken began teaching Ju-Jitsu and studying Aikido for around 5 years.
Ken began bodybuilding at 15, winning the under 18 Eastern Counties Championship in 1991 and 2nd place the following year.
His own training now is directly aimed at power to weight ratio, working on classic lifts such as dead lift, squat, bench press, chin-ups, and he has made these his speciality.
Ken has complementary therapy experience with Lowestoft college, but unfortunately due to contracting viral meningitis he was unable to take his exams.
He has attended many workshops on sports therapy, held again at Lowestoft College with Gareth Davies, and has worked with the physiotherapy department as a technical instructor, helping main stream clients recover from their conditions. Kens work was primarily in the stroke and neuro rehab department.
Ken became qualified in 2007 with WABBA achieving "TOP GUN" status as a fitness instructor.
He hold’s weight management and nutrition qualifications and firmly believes that good nutrition is the basis for good training and wellbeing.
In 2008 Ken was awarded the North London School of Sports Massage diploma.
Ken has also continued his personal development, with further courses on Strapping and Taping, Anatomy Trains and in depth work on the spine and pelvis. Other courses attended were ultrasound training along with spinal manipulation, neck and shoulder master class and advanced therapies for the injured Athlete 2012 with John gibbons. And finally sports acupuncture 2012 with Bernard Nolan at Oxford.
Kens specialities:
Strength training and fitness ranging from dropping a few pounds to high level competition.
Sports therapy: treating a wide range of muscular/skeletal issues with a wide variety of age ranges and abilities.
Neuro muscular rehab both in clinic and in the gym environment.
On a personal note, I have seen Ken’s work first hand and have witnessed the massive impact he has on changing peoples lives, as he works closely with my uncle who has Friedricks Ataxia and is in a wheelchair, both in his home clinic and at the gym. Without Ken and the work he does, the progression of deterioration in my uncles disease would be much more rapid.
So thats a bit about the achievements side of things, Now for an insight into what made the man, and the massive journey he now faces.
Ken was diagnosed with primary HyperPara Thyroid Disease (PTD) in 2001 after his GP ran bloods as he had been feeling tired and irritable for some time. The condition has a lot of symptoms. These are listed below, I have highlighted Kens as each case is different:
*Don't feel well; don't quite feel normal. Hard to explain but just feel kind of bad.
*Feel old. Don't have the interest in things that you used to.
Can't concentrate, or can't keep your concentration like in the past.
Depression.
Osteoporosis and Osteopenia.
*Bones hurt; typically it's bones in the legs and arms but can be most bones.
*Don't sleep like you used to. Wake up in middle of night. Trouble getting to sleep.
*Tired during the day and frequently feel like you want a nap (but naps don't help).
*Spouse claims you are more irritable and harder to get along with (cranky, bitchy).
*Forget simple things that you used to remember very easily (worsening memory).
*Gastric acid reflux; heartburn; GERD.
Decrease in sex drive.
Thinning hair (predominately in middle aged females on the front part of the scalp).
*Kidney Stones (and eventually kidney failure).
High Blood Pressure (sometimes mild, sometimes quite severe; up and down a lot).
*Recurrent Headaches (usually patients under the age of 40).
*Heart Palpitations (arrhythmias). Typically atrial arrhythmias.
Atrial Fibrillation (rapid heart rate, often requiring blood thinners and pacemakers).
High liver function tests (liver blood tests).
Development of MGUS and abnormal blood protein levels.
Most people with hyperparathyroidism will have 5-6 of these symptoms. Some will have lots of them. A few people will say they don't have any, but after an operation they will often say otherwise. 95% of people with hyperparathyroidism will have 4 or more of these symptoms. In general, the longer you have hyperparathyroidism, the more symptoms you will develop.
Ken's symptoms are unfortunately getting worse. He's falling asleep around 1-2pm for a couple of hours most days and it doesnt help. He cant fight it and even drinking coffee doesnt stop him simply crashing out. His headaches are getting increasingly worse, along with the joint/muscle pain.
All this said, he's still having to keep training or his bones will get brittle. so even though its painful to workout, he's tired all the time and the DOMs after is increased, he has to keep going.
Ken has had this now for 15 years. He had his first surgery at the James Paget Hospital in 2003 which failed, leaving him feeling very let down and somewhat distrusting of the whole process. The recovery was around 6 weeks to get back to training again.
Ken looked into the long term issues of the condition and decided in 2007 to try again with a different Endo team.
Dealing with Endocrinologists in the UK (he has seen 6 now) has been a massive uphill battle being told so many conflicting things, being called a problem case on several occasions, which made him feel like everything was just to much trouble.
Each time Ken asked pertinent questions to these specialists, he would get no answer and be moved onto another, continually passing the buck.
After a lot more reading into his condition, Ken made the decision to have another team try again to remove the tumour on the gland.
In 2009 he had a second operation at the Norfolk and Norwich Hospital, lasting over 6 hours, during which the surgeon removed the right side lobe of his thyroid and NO parathyroid tissue, another unsuccessful operation. Added to that a week after the surgery Ken was taken into A&E at JPH by two of his friends, as he had developed a massive infection in the wound and a haematoma was slowly cutting off his windpipe. The receptionist asked what ward Ken had been on for his surgery. When his friend, Phil Holden, told her that the surgery had taken place at the Norfolk and Norwich Hospital, Phil was told he would have to take Ken there instead as it was their problem! You can imagine Phil’s response! Suffice to say, he strongly insisted a medical team help Ken, and within 15 minutes he was being seen.
The wound was so swollen by this point that Ken was not able to talk above a whisper and was told by the attending nurse that they needed to put him out to reopen the wound and clean out the infection. But the anaesthesiologist was 45 minutes away.
Time was not a luxury he had and Ken’s friends, Andy and Phil, were as shocked as he was, so Ken gave consent to proceed without anaesthetic. They had to reopen his neck with a scalpel, which practically burst open when they cut.
The nursing team spent the next hour filing down the wound edges and pulling all of the infected blood from the cavity left from the operation. Not comfortable at all.
Ken spent the next 6 weeks returning to the nurse at his local GP, having the wound opened, drained and cleaned then packed to to allow the space to heal from the inside outwards. During this time his thyroid function plummeted and he was left shattered, doing even the simplest of tasks like making the bed or walking to the toilet.
Ken was off work from 21st of April 2009 until August with constant pestering from Bannatynes for him to hurry back to work.
By the time Ken started training again in August, he was left weak and sore with the scar tissue around and in his throat. This was causing severe discomfort when he tried to tip his head back to drink or swallow food.
In the gym when Ken tried to press weights on the bench press it felt like it was literally strangling him from the inside.
Ken’s recovery from this was significantly longer, around 4 months. While his body readjusted and his thyroid function returned to normal, he refused the Thyroxine and managed to get through it all.
Ken has had so many scans I have lost count. He say’s the radioactive dye ones are not nice, they leave you feeling like you have fire ants crawling around your body for 2-3 days. He has had 3 separate kidney stones which, thankfully, have passed without surgery but, in Ken’s words “thats like peeing broken glass”. He’s had a Venous Sampling which is a risky procedure and not easy, but they put a keyhole camera into a vein in your groin and push it up through too your neck taking small tissue samples and bloods at places along the way.
Ken is currently under Greg Sadler, Churchhill Hospital, Oxford, who after starting from scratch with scans and bloods is now in consultation with a cardiac surgeon to go through his breast bone. Three times now Ken has had surgeons tell him they need to split his sternum to have a look in there but without any shred of evidence that the tumour could be there.
Ken has now been in correspondence with Dr. Jim Norman, the top specialist in this field from The Norman Parathyroid Centre, Florida, America.
On average, according to Dr Norman, people with this condition will develop major symptoms like a stroke or heart attack after 15-20 years if left untreated. According to Dr. Norman its a less than 10% chance of the tumour being in Ken’s chest.
For reference, his website is http://www.parathyroid.com/
Dr. Norman has offered to help Ken, but total cost for him would be $12500. At todays exchange rate £8008.97
Not including flights and accommodation.
Now, many of you may already know Ken. Most of you have probably seen him in the gym. But what many of you don't know is what struggles he faces personally everyday.
In this blog I will start by telling you a bit about the man and his achievements, followed by his story and the journey that he now faces.
Ken has been involved in the fitness industry for over 20 years, 3 of them in a professional capacity. He began training in Martial Arts at the age of 8, starting with Judo then going on to trying many different styles from Karate, Kung-Fu, Thai Boxing, Tai-Jutsu, Ju-Jitsu and Aikido. At the age of 27 Ken began teaching Ju-Jitsu and studying Aikido for around 5 years.
Ken began bodybuilding at 15, winning the under 18 Eastern Counties Championship in 1991 and 2nd place the following year.
His own training now is directly aimed at power to weight ratio, working on classic lifts such as dead lift, squat, bench press, chin-ups, and he has made these his speciality.
Ken has complementary therapy experience with Lowestoft college, but unfortunately due to contracting viral meningitis he was unable to take his exams.
He has attended many workshops on sports therapy, held again at Lowestoft College with Gareth Davies, and has worked with the physiotherapy department as a technical instructor, helping main stream clients recover from their conditions. Kens work was primarily in the stroke and neuro rehab department.
Ken became qualified in 2007 with WABBA achieving "TOP GUN" status as a fitness instructor.
He hold’s weight management and nutrition qualifications and firmly believes that good nutrition is the basis for good training and wellbeing.
In 2008 Ken was awarded the North London School of Sports Massage diploma.
Ken has also continued his personal development, with further courses on Strapping and Taping, Anatomy Trains and in depth work on the spine and pelvis. Other courses attended were ultrasound training along with spinal manipulation, neck and shoulder master class and advanced therapies for the injured Athlete 2012 with John gibbons. And finally sports acupuncture 2012 with Bernard Nolan at Oxford.
Kens specialities:
Strength training and fitness ranging from dropping a few pounds to high level competition.
Sports therapy: treating a wide range of muscular/skeletal issues with a wide variety of age ranges and abilities.
Neuro muscular rehab both in clinic and in the gym environment.
On a personal note, I have seen Ken’s work first hand and have witnessed the massive impact he has on changing peoples lives, as he works closely with my uncle who has Friedricks Ataxia and is in a wheelchair, both in his home clinic and at the gym. Without Ken and the work he does, the progression of deterioration in my uncles disease would be much more rapid.
So thats a bit about the achievements side of things, Now for an insight into what made the man, and the massive journey he now faces.
Ken was diagnosed with primary HyperPara Thyroid Disease (PTD) in 2001 after his GP ran bloods as he had been feeling tired and irritable for some time. The condition has a lot of symptoms. These are listed below, I have highlighted Kens as each case is different:
*Don't feel well; don't quite feel normal. Hard to explain but just feel kind of bad.
*Feel old. Don't have the interest in things that you used to.
Can't concentrate, or can't keep your concentration like in the past.
Depression.
Osteoporosis and Osteopenia.
*Bones hurt; typically it's bones in the legs and arms but can be most bones.
*Don't sleep like you used to. Wake up in middle of night. Trouble getting to sleep.
*Tired during the day and frequently feel like you want a nap (but naps don't help).
*Spouse claims you are more irritable and harder to get along with (cranky, bitchy).
*Forget simple things that you used to remember very easily (worsening memory).
*Gastric acid reflux; heartburn; GERD.
Decrease in sex drive.
Thinning hair (predominately in middle aged females on the front part of the scalp).
*Kidney Stones (and eventually kidney failure).
High Blood Pressure (sometimes mild, sometimes quite severe; up and down a lot).
*Recurrent Headaches (usually patients under the age of 40).
*Heart Palpitations (arrhythmias). Typically atrial arrhythmias.
Atrial Fibrillation (rapid heart rate, often requiring blood thinners and pacemakers).
High liver function tests (liver blood tests).
Development of MGUS and abnormal blood protein levels.
Most people with hyperparathyroidism will have 5-6 of these symptoms. Some will have lots of them. A few people will say they don't have any, but after an operation they will often say otherwise. 95% of people with hyperparathyroidism will have 4 or more of these symptoms. In general, the longer you have hyperparathyroidism, the more symptoms you will develop.
Ken's symptoms are unfortunately getting worse. He's falling asleep around 1-2pm for a couple of hours most days and it doesnt help. He cant fight it and even drinking coffee doesnt stop him simply crashing out. His headaches are getting increasingly worse, along with the joint/muscle pain.
All this said, he's still having to keep training or his bones will get brittle. so even though its painful to workout, he's tired all the time and the DOMs after is increased, he has to keep going.
Ken has had this now for 15 years. He had his first surgery at the James Paget Hospital in 2003 which failed, leaving him feeling very let down and somewhat distrusting of the whole process. The recovery was around 6 weeks to get back to training again.
Ken looked into the long term issues of the condition and decided in 2007 to try again with a different Endo team.
Dealing with Endocrinologists in the UK (he has seen 6 now) has been a massive uphill battle being told so many conflicting things, being called a problem case on several occasions, which made him feel like everything was just to much trouble.
Each time Ken asked pertinent questions to these specialists, he would get no answer and be moved onto another, continually passing the buck.
After a lot more reading into his condition, Ken made the decision to have another team try again to remove the tumour on the gland.
In 2009 he had a second operation at the Norfolk and Norwich Hospital, lasting over 6 hours, during which the surgeon removed the right side lobe of his thyroid and NO parathyroid tissue, another unsuccessful operation. Added to that a week after the surgery Ken was taken into A&E at JPH by two of his friends, as he had developed a massive infection in the wound and a haematoma was slowly cutting off his windpipe. The receptionist asked what ward Ken had been on for his surgery. When his friend, Phil Holden, told her that the surgery had taken place at the Norfolk and Norwich Hospital, Phil was told he would have to take Ken there instead as it was their problem! You can imagine Phil’s response! Suffice to say, he strongly insisted a medical team help Ken, and within 15 minutes he was being seen.
The wound was so swollen by this point that Ken was not able to talk above a whisper and was told by the attending nurse that they needed to put him out to reopen the wound and clean out the infection. But the anaesthesiologist was 45 minutes away.
Time was not a luxury he had and Ken’s friends, Andy and Phil, were as shocked as he was, so Ken gave consent to proceed without anaesthetic. They had to reopen his neck with a scalpel, which practically burst open when they cut.
The nursing team spent the next hour filing down the wound edges and pulling all of the infected blood from the cavity left from the operation. Not comfortable at all.
Ken spent the next 6 weeks returning to the nurse at his local GP, having the wound opened, drained and cleaned then packed to to allow the space to heal from the inside outwards. During this time his thyroid function plummeted and he was left shattered, doing even the simplest of tasks like making the bed or walking to the toilet.
Ken was off work from 21st of April 2009 until August with constant pestering from Bannatynes for him to hurry back to work.
By the time Ken started training again in August, he was left weak and sore with the scar tissue around and in his throat. This was causing severe discomfort when he tried to tip his head back to drink or swallow food.
In the gym when Ken tried to press weights on the bench press it felt like it was literally strangling him from the inside.
Ken’s recovery from this was significantly longer, around 4 months. While his body readjusted and his thyroid function returned to normal, he refused the Thyroxine and managed to get through it all.
Ken has had so many scans I have lost count. He say’s the radioactive dye ones are not nice, they leave you feeling like you have fire ants crawling around your body for 2-3 days. He has had 3 separate kidney stones which, thankfully, have passed without surgery but, in Ken’s words “thats like peeing broken glass”. He’s had a Venous Sampling which is a risky procedure and not easy, but they put a keyhole camera into a vein in your groin and push it up through too your neck taking small tissue samples and bloods at places along the way.
Ken is currently under Greg Sadler, Churchhill Hospital, Oxford, who after starting from scratch with scans and bloods is now in consultation with a cardiac surgeon to go through his breast bone. Three times now Ken has had surgeons tell him they need to split his sternum to have a look in there but without any shred of evidence that the tumour could be there.
Ken has now been in correspondence with Dr. Jim Norman, the top specialist in this field from The Norman Parathyroid Centre, Florida, America.
On average, according to Dr Norman, people with this condition will develop major symptoms like a stroke or heart attack after 15-20 years if left untreated. According to Dr. Norman its a less than 10% chance of the tumour being in Ken’s chest.
For reference, his website is http://www.parathyroid.com/
Dr. Norman has offered to help Ken, but total cost for him would be $12500. At todays exchange rate £8008.97
Not including flights and accommodation.
Organizador
Tonya Doughty
Organizador
