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We are very pleased the way the LDN Research Trust is growing. When we sent out email notification of the Sept. newsletter we had on that day 702 visitors to the website, 20 new people contacting us for further information on LDN per day.
It is great news that LDN is getting known better. This month alone I have been told of two more Neurologists in the UK who are telling GP’s to prescribe LDN on the NHS. The media are also taking note, which creates further interest and more enquires.
While all this is terrific news there is one down side, the bigger we get the more it costs to run the charity. No one gets paid and our hosting people very kindly froze the price since we started but do to the high bandwidth usage it is set to go up by £200 a year.
Do you believe in LDN? Do you believe in the work we do? If the answer is yes we would appreciate your financial help in enabling us to carry on, allowing us to help even more people. Could you spare £1, $1 or 1 Euro a month?
Even small donations in high volume amount to hundreds of pounds.
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Italian LDN Trial results
The trial results are now out and you can check them out by clicking the link below:
Link
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My Incredible journey back to Life (a cancer sufferer) Eileen Mathie 22/7/08
I had been feeling ill for over a year and had been diagnosed with irritable bowel syndrome. However in the middle of June 2007 I was so ill I had to be taken to the doctor and was sent as an emergency to hospital ,with a suspected blocked bowel.I was seen and sent for a scan. Later that evening as I was sitting talking to my eldest daughter, two doctors approached my bed. They told me I had tumours of the ovary and that they thought it very likely they were cancerous.
This was confirmed by further scans which found the cancer had also spread to my ommentum and to my gallbladder. I spoke with the surgeon who said it was stage 3.He said I needed an operation to remove as much tumour as possible and that then I would have chemotherapy.
I said to him that I intended to fight the cancer.
My operation was not as successful as they wanted, as apparently my insides were very stuck together with tumour. The surgeon was still hopeful and made an appointment for me to be seen by an oncologist from the University College Hospital London.
I went home to recuperate.
The appointment was set for 10 days after I left hospital.
However 5 days later I found that when I went to the toilet I had food coming out with my urine. We sent for the GP and I was diagnosed with a leak from the bowel into the bladder.
It was now the beginning of July. I went to the appointment with the oncologist feeling very very ill and sick. I had been unable to eat or drink much for months and had lost 2 stone. I eventually lost 5.5 stone in total by the end August.
I explained that I had developed a leak and she immediately sent for another oncologist . I was now in another local hospital as that was where she did the appointments for my area. The other specialist arrived and said I would need a second operation to try to repair the problem .It was explained I could not have chemotherapy until my bladder was repaired as the kidney function had to be good before chemotherapy could happen.
I was beginning to wonder what else could go wrong.
I had my second operation about the middle of July and was still feeling very optimistic although scared. I was told they may have to do a colostomy /ileostomy which I did not want. However when I woke up from anaesthetic it was with a colostomy. Okay I thought now we can get on with preparing for chemo. However, after about a week the stitches burst and I found that I had faecal matter coming through the wound.
I asked to see the consultant and asked him what my prognosis was. He said I had a few weeks to live and that they could not operate again as my insides were in such a mess. I asked to go home as I wanted to be with my family for my last few weeks. I got home to a new house as we had been in the middle of moving. My daughters had done everything for us as my husband had been at my bed side for most of everyday. My eldest daughter moved in to help and my other daughter came around every day with my granddaughter and my new grandson whose birth I had witnessed before my diagnosis.
I was brave at times but very desperate at others. My family and friends were wonderful. One of my daughter’s friends put me in touch with the cancer clinic in Bristol and I ordered some diet books and the cancer battle plan. Another young friend brought me an article on exercise and cancer so I got the family to get me some dumbbells and tried pushing weights. I was trying to eat but finding it difficult. Nurses were in twice a day to change my dressings. Drugs were moved in to help me through what we thought were my last days. My husband never gave up and bought me a motorised chair so I could get out and go around the shops.
One day in September when I was feeling like a change we went to have lunch out. The leak form my bladder had healed and Gus decided to ring the oncology nurse at the hospital and tell her I was out and about. She went to the consultant form UCH who was the one who could say yes or no to chemo.I was given an appointment with her the next week. She said I could have chemo with the hope it might prolong my life and give me a better quality of life .It was to start two weeks later after kidney function tests and a scan. I was to be seen every week for small doses as she felt I was to weak to cope with normal doses. The chemo went well and I was less sick with it than I had been before and was able to eat more and began to put on weight. It was a harsh regime and I was seen on the Wednesday by the consultant to check I was strong enough to go to London for Chemo on the Friday. Just before Christmas I was told about LDN and began to explore the internet to find out more. I went to London and got my first prescription just before Christmas. I was also changing my life style radically having read the cancer battle plan, I was eating no meat or milk products, taking vast amounts of vitamin C .garlic capsules ,vitamin A. vitamin B,no sugar ,no chocolate, no tea ,no coffee, no alcohol. I did this in consultation with a nutritionist. I was also taking an African cancer drug called Sutherlandia which I paid for myself and a powder recommended by the nutritionist and developed by a German Oncologist. All this was designed to boost my immune system.
At the beginning of my diagnosis my CA count was 1700, by January it was 400 and by the end of chemotherapy 35.
I was feeling so well we decided to go to our house in turkey for 3 weeks. I was able to do a lot of walking and also have a lot of peace. I came back for my next scan and my appointment with the chemo consultant. When I saw her she was delighted she told me my CA count was down to 7 and that my tumours had gone. I was to live a long time and get on with my life.
PHEW.
At my last appointment my CA count was still 7 and the consultant called me Lazarus, I feel very well and I am off in 2 days to Turkey and we are driving there.
I now go to the gym 3 times a week
I do not know what has helped me the love of family and friends
Dedicated doctors and nurses
Chemo –this definitely helped
LDN
My new diet regime
Sutherlandia
My stubbornness. My old boss (I retired last year said I never do what I am told)
It may be a combination of all these things.
My consultant has said to continue whatever it is I am doing as it works. I do not know what the future holds but I intend to enjoy every day and live life to the full. I feel very lucky.
LDN for MS - Alexandra McClanahan
I am 55 years old. I was born and grew up in Nebraska and have been living in Alaska since 1982. I was diagnosed with Multiple Sclerosis in November 2006. I had had a number of falls, and in 2005, I broke both of my wrists in a fall. Unlike some people I’ve read about who were frustrated that they couldn’t get a diagnosis, I avoided trying to find out what was wrong with me. I believe I knew it was something serious and simply didn’t want to find out. But the falls, dragging of my right foot and limp and slight numbness in my fingers had been ongoing for several years. I also was experiencing fatigue.
At my family doctor’s suggestion, I went to the Virginia Mason Center in Seattle, and that’s where I was diagnosed. At the time of my diagnosis I was 54 years old. My diagnosis was definite MS, most likely “primary progressive.” I have never had a “relapse,” and the symptoms I have do not go away, so this makes sense to me. The neurologist suggested I try Copaxone, and when I questioned her about this given my PPMS diagnosis, she said, well, the categories are somewhat arbitrary, and it might help you. I work full time and do have excellent insurance coverage, but I still wasn’t comfortable with the cost, nor was I very interested in self-injections. I did try it, but after a lot of research on the internet I discovered people talking about LDN.
So-called autoimmune diseases seem to run in my family. My father, who is now 90, was diagnosed with RRMS when he was in his 40s. My brother was diagnosed with rheumatoid arthritis, and my younger sister myaesthenia gravis. There also have been problems with depression.
At the time of my diagnosis I was experiencing a fair amount of fatigue. I was also feeling very stressed and “down” as a result of the diagnosis. I noticed that I was beginning to have bladder urgency, and also I had to get up several times in the night to urinate. Not long after my diagnosis I had a lot of numbness in my right foot, and it seemed that the tightness (MS hug) was increasing in my arms. (The dexterity in my right hand is compromised, and I have general weakness on my right side.) At the time, to put it bluntly, I was terrified. I felt that I was headed downhill.
I asked my GP if he would prescribe LDN, and I took information from the internet with me. He said he would have no problem doing so, and I began taking it in early January 2007. Almost immediately, my bladder problems improved. I did initially notice increased stiffness in some of my muscles, but I had read this happened to people, so I decided to ride it out. My mood improved a lot right away. Was it because of the LDN, or because I felt I was on the right track? I don’t know, but the emotional improvement was significant.
For about 22 years now I have had daily exercise – seven days a week – that began with 20 minutes of brisk walking, then went to 30 minutes and is now 40 minutes. In the last few months, I have sought to add to the walking by doing other exercise for other parts of my body. It seems that I am able to do much more now and have more energy. Is it from the LDN or because I’m trying harder and doing more exercise?
When I first started taking LDN I did have very vivid dreams. I think my dreaming is still somewhat affected, but I never remember exactly what I dreamed! All I know is that there is a feeling that was vivid. I also noticed some sleep disturbance at first, but that has passed.
My intuitive sense is that LDN had SAVED me. I thank God for Dr. Bihari and all the other pioneers, and I thank all those who tell their stories on the internet so that people like me have a guiding light. I am SO GRATEFUL that this drug exists. I will keep taking it. . .I am not cured. But I am happy. And I feel that my condition is as good as possible under the circumstances.
I would very much like to be in touch with people on LDN, and I would like to do whatever I can to get the word out to others.
My MS/LDN Story - Jonathan Davies
From the mid nineties onwards there seemed to be something wrong. Being sheep farmers we suspected organophosphate poisoning, as we knew of several cases in our area. I was without any rational explanation-running out of energy with periods of very low spirits, from time to time feeling suicidal.
I lost my father in 96 and just didn't seem to pick up from point on. There were various visits to the doctor none of which did much good, but I do thank God that I binned the seroxat after a few days. Things finally came to a head in the Autumn of 1999, with a strange tingling on my right side and several unexplained falls, one of them on flat tarmac, I went to the doctor, demanded to see a specialist and was referred to a neurologist.
I paid to go private and saw him in December. After a lengthy examination he said there was definitely something wrong but he could not say what. In mid January I was admitted to the neurology ward at The University of Wales Hospital, Cardiff. After around a week of tests, I was diagnosed with syringomyelia and was introduced to a neurosurgeon, who sent me home wanting to operate as soon as possible with instructions to ring in if anything changed.
After a very hectic weekend (with my children running us ragged), by Sunday evening I was unable to speak. I was admitted to hospital on Monday and underwent a Foramen Magnum decompression operation. My symptoms improved greatly for a couple of months but then started to worsen again, I was in a state of collapse and was carried into the UHW. By the end of September 2000, I had been diagnosed with Multiple Sclerosis.
From the outset I was astonished by the attitude of the Neurologists who just seemed to want me to go away and get on with it. I had acupuncture and used essential oils for healing, I knew there were options out there to help with the MS so I went about finding things that helped me feel better and slowly make progress against the MS.
I won't detail all of things that have helped, but jump to December 06 when somebody (Andy Mason) phoned me out of the blue to tell me about Low Dose Naltrexone and how it had worked for him. I was determined to try it, found Dr Bob Lawrence on the internet and got in touch. I started LDN on the 4th January 2007. For a couple of days I was a little groggy but almost immediately found my head was clearing, the brain fog of jumbled thoughts was disappearing.
I didn't notice much more for a few weeks but then found my legs (which had been very wooden) were coming back to life, and all of a sudden sexual function returned. By Easter of that year I led some French friends on a country walk in to the waterfalls country, which is something I thought I would never do again.
I remain fit although the MS will come back and give kick now and again, especially if I forget to take LDN as does occasionally happens, or if I overdo things. I still have a problem with hot weather, so I avoid it.
This description was longer than planned, but I hope it helps to describe the most wonderful thing in my life- Low Dose Naltrexone
4th LDN Conference Report – Dr Tom Gilhooly
This year the LDN conference was finally able to report new research, which has either been completed, presented or published. Four studies with LDN and MS have been completed this year, all with promising results. Dr David Gluck opened the conference with a run-through of the recent studies, which he commented that he has never been able to do before. There is a feeling of the drug beginning to come of age albeit with a long way to go.
One landmark is the granting of funds by the National MS Society of America for the preclinical studies carried out by Dr Zagon of Penn State University. The princely sum of $42,000 was enough to fund two very interesting animal studies using LDN. In one study the animal model of MS, Experimental Allergic Encephalitis (EAE) was induced in mice who were then treated with either LDN or placebo. The LDN-treated group had a much less severe version of the illness and were found to have fewer activated T cells against the myelin antigen. In the second study the mice were pre-treated with LDN or placebo and when the disease was induced, EAE was much less severe in the LDN-treated group. These studies lend support to the anecdotal tales of clinical improvement in MS patients, which we have all become familiar with. If LDN had emerged by the usual route then this type of study would have predated any clinical human work, but as this drug has emerged by a novel route we have animal and human studies occurring simultaneously.
Dr Gluck also mentioned the work of Dr Bruce Cree and his team at the University of California in San Francisco who have completed a two month evaluation of LDN compared with placebo, which showed a marked improvement in the MS quality of life questionnaire. It is remarkable that this was a positive study given the short duration of the study-many patients do not notice any benefit until after much longer on treatment.
The final study completed this year was on Primary Progressive patients in Italy by Maria Gironi et al. This longer study showed marked improvements across a wide variety of MS symptoms although bladder dysfunction was not measured which is unfortunate as this is one area which often changes markedly with LDN. This study did address drug safety and concluded that there were no areas of concern in this regard.
Dr Gluck briefly mentioned other studies which have either been completed or are in progress, including a study into LDN and Fibromyalgia which has been completed but not yet reported. Apparently the results were positive, and we anxiously await the details.
Dr Jacqui McCandliss gave an interesting overview of the challenges of carrying out research in Mali where the efficacy of LDN in preventing progression of HIV to AIDS is being assessed. No results are yet available but the trial is progressing, albeit with a pressure on the budget as ever. She also mentioned some of her very positive experiences in treating autism with LDN, an area that surely requires greater attention.
Dr Skip Lenz outlined the wealth of information his team have gathered interviewing patients on LDN who either attend the pharmacy or order by telephone. The satisfaction with treatment is very high at over 90% and interestingly many patients are taking LDN in addition to disease modifying drugs against the general recommendations. This practice does not appear to be causing a problem and is an example of common sense triumphing over medical logic. The immune boosting/ immune suppressing view of treatments for MS is a bit of a flat earth argument. LDN is an immune modulator and seems to be able to be taken with other immune modulators such as copaxone and beta interferons.
Dr Burt Berkson outlined his use of LDN with alpha-lipoic acid in treatment of cancer, presenting several cases where this treatment was successful. He has published some of these cases as case studies but he informed me later that they have been “pruned “ from the medical online database PubMed, presumably by the drug companies as they do not fit their agenda.
I presented our work on the Tyscore assay and our preparatory work for our LDN trial in MS. We had some very good feedback from the delegates who were especially interested in work on peroxynitrites as a possible mechanism of action for LDN. I informed the delegates of our intention to hold a European LDN conference in Glasgow on the 25th April 2009 and several of the speakers volunteered to come over and speak at our conference.
The final contribution was unscheduled but in my view stole the show. Mr Henry Wouk is an MS patient as well as an author and performer. He has had virtually complete resolution of his symptoms on LDN and is writing a book about his experience. He had reached the desperate stage with his condition and was planning to go to Peru for a shamanic treatment. He was given LDN by his consultant in such an off hand way that he did not expect anything from it. He is so impressed with his experience has now put it down in a book called “Google LDN” which should be available before the end of the year. Henry is the son of the famous author Herman Wouk and he is obviously a very talented writer and performer who could substantially advance the cause of LDN. We hope to persuade him to come to the UK at some point to help promote his book and in doing so LDN in general.
This has been a landmark year for LDN and the increasing number of positive studies make it inevitable that the wider medical world will at last take notice. At Glasgow Health Solutions we are involved in a number of areas of research related to LDN which we hope will add to this body of evidence. The next year will be equally exciting and with the first European Conference to look forward to we can be very optimistic for the future of LDN and the autoimmune conditions that it can serve.
Multiple Sclerosis
Optimizing Function with The Multidisciplinary Team
by © 2008 Lucille Leader Dip ION MBANT
Nutritional Therapist
The London Pain Relief and Nutritional Support Clinic
The Highgate Hospital, London, UK
The person with Multiple Sclerosis (MS) deserves to function as best as he or she is able!
As such, together with the pharmaceutical support offered by the neurologist and general practitioner (GP), an additional multidisciplinary team of healthcare professionals is essential to assist with optimizing general function and the day to day management of various problems.
The team “core” includes nutritional therapy, speech therapy, physiotherapy, remedial movement and massage, osteopathy, psychotherapy and stress management, sexual therapy in addition to neurology and primary care. Other medical specialists should be approached if necessary.
Professor Leslie Findley, Consultant Neurologist with whom I associate, has written that chronic illness cannot be adequately supported and managed only with a simple doctor-pill formula. There are many different problematic aspects for a MS sufferer that need addressing.
Dr Geoffrey Leader who is the medical director of our multidisciplinary team, has over many years pioneered the system of “multidisciplinary” care for the person with chronic illness.
Patients are recommended to the therapists who could best fulfill their individual needs.
In MS, there may be may be diverse aspects requiring support. These may include:
- medical and neurological problems
- movement disorder and postural instability
- stress and depression
- problems with intimacy and sexuality
- bowel function
- speech and swallowing problems
- malabsorption and weight problems
- nutritional deficiencies or excesses
- visual problems
- pain
These issues should be assessed by the appropriate therapist and “individualized” management solutions offered (neurologists, GPs, nutritional therapists, physiotherapists, osteopaths, psychologists, speech therapists, ophthalmic specialists, pain specialists (anaesthetists) and others - as indicated).
Aspects of Nutritional Therapy
The neuro-degenerative diseases, including Multiple Sclerosis, appear to be characterised by the following cellular aspects, which are of special interest in Nutritional Therapy.
- Inflammation on a cellular level
- Free Radical damage - destabilizing of cell membranes
- Mitochondrial insufficiency – compromised energy production
- Nutritional deficiencies
- Detoxification problems
All of these aspects can be checked by contemporary biochemical tests, which the Nutritional Therapist is obliged to use in order to devise a “personalized”, scientifically-based nutritional support program for the person with MS. “One size does not fit all!”
If a person were to be “analyzed” in a laboratory, all that would emerge would be a bag of salty soup – for we are “made” from purely nutritional factors! These are proteins, carbohydrates, fats, vitamins, minerals and water! Excesses or deficiencies of these factors in our cells can contribute to lack of wellbeing and disease states. Each nutrient plays a role in the function of cells and organs.
In MS, the condition of the myelin sheath is affected and the levels of the specific nutrients which support it need to be assessed and any deficiencies addressed.
However, nutrients which are important in other metabolic functions within the body also need to be assessed. General health (as well as that of the myelin sheath) needs support so as to optimize functional health.
I routinely assess each patient’s cellular status individually – using state of the art medical laboratories for biochemical tests. The results provide guidelines for recommendations of vitamins, minerals, essential fatty acids, digestive enzymes and diet. I also assess the permeability of the intestinal membrane (digested food molecules enter the bloodstream through this membrane), the absorption potential of each person, food allergy as well as food and environmental sensitivities.
I try to prescribe as many sublinguals as possible (special formulae which are easier absorbed into the bloodstream from under the tongue rather than from the gut). When patients are suffering from malabsorption and have low energy, a course of intravenously administered nutritional supplements may be indicated. People often feel more energetic and have a greater sense of well-being when having intravenous nutritional support.
If swallowing or chewing is a problem, tube feeding is recommended during a difficult period so that weight, energy and wellbeing may be maintained.
Generally, typical nutritional supplements needed (according to biochemical testing) include:
- specific nutrients necessary for the energy cycle of cells (the Krebs Cycle)
- minerals, vitamins, antioxidants
- essential fatty acids and other lipids
- digestive enzymes
- probiotics
- cell membrane stabilizing nutrients
The diet I recommend is focused on:
- stimulation of cell (and general) energy
- regulation of blood sugar levels
- promoting optimum bowel function
- avoiding foods which are contraindicated in MS as they may act as “molecular mimics” and trigger symptoms. The “Best Bet Diet” does omit these foods (dairy, gluten and lectins).
- Saturated fats should be “regulated” but the Essential Fatty Acids are a must.
Tests indicate the appropriate prescription for fat intake.
If gut permeability is undesirably increase (“leaky-gut” syndrome), a dietary regime is introduced to restore and normalize the permeability status. This includes butyric acid, specific vitamins and minerals and diet. I do not use glutamine as, in therapeutic doses, this may act as an excitotoxin.
However, it is vitally important to eat sufficient calories from nutritious and delicious food so as to maintain a good weight, a sense of well-being and energy. Any food type which has been dropped from the usual diet needs to be replaced with another. There are so many lovely choices as regards food that no-one should ever feel that he or she is missing out on the pleasures of life!
As regards dietary changes – my policy is one of gradual change rather than to change all at one time. As detoxification processes may be compromised in some people, it is safer to introduce one change each week or two (together with one exchange with a new and appropriate food).
Alcohol, (contraindicated with some drugs, needing detoxification and certainly not conducive to good balance), needs to be replaced with something else refreshing and relaxing! However, alcohol must be reduced extremely slowly.
People with MS may also have compromised digestive enzymes. This needs checking out and appropriate support with digestive enzymes given should the need be demonstrated.
Bowel function with or without incontinence is often a problem and is of primary importance in my management program. Causes and solutions are sought for constipation, diarrhoea and incontinence.
Psychotherapy
The stress management team is usually a MUST because most MS patients tell us that stress can make their symptoms worse. Alongside psychological support to patient and partner/caregiver, Autogenic Training for deep mind-body relaxation as well as Hypnotherapy offer help. Acquiring these deep mind-body relaxation techniques from therapists facilitates relaxation, a feeling of calm and helps with sleep problems – for both patient and family.
David Uri, psychotherapist and hypnotherapist (Member of the Royal Society of Medicine) has produced a beautiful and helpful CD recording to promote relaxation and reduce stress.
Played before sleep or during the day before rest, it has provided comfort and relaxation to many neurological patients as well as their partners. If readers are interested in acquiring a copy, the details are:
Multiple Sclerosis Relaxation by David Uri
Tel: Leading Note Productions: 020 8343 7891 or email www.info@leadingnoteproductions.com
Sexual Therapy
Sexual Therapy may sometimes be indicated and can be reassuring to couples. This aspect
should not be neglected. Affection between people can be demonstrated in different simple and endearing ways - suited to the potential of each individual.
Physiotherapy, Osteopathy, Remedial Massage and Movement
I also always marvel at the contribution of the Physiotherapist/Movement Therapist and Osteopath – balance, walking, turning, getting up and down and turning in bed are much helped. In some cases if indicated, the symptoms of stiffness and tingling extremities may be reduced by osteopathic treatment.
Partners and Caregivers
Caregivers and partners play a vital role within the management team.
I always ask chronically ill patients to bring someone with them to a consultation as it is so reassuring for them to have support. The accompanying person does need to understand the reasons for the recommended regime and can therefore assist at home with motivation, the diet and supplements, as well as any drugs and exercises that may be prescribed.
Optimizing function and wellbeing through the educated use of drugs, nutrition, sexual, emotional, movement-related and other strategies, helps to reduce the feeling of helplessness experienced by lack of knowledge.
Strain may well be experienced by family members who care for a loved-one who is not well. Their emotional and physical needs must equally be recognized and addressed for the maintenance of their health and well-being.
I recommend that supporters (partners and caregivers) acquire relaxation techniques and both they as well as MS sufferers often enjoy autogenic training sessions and also benefit from the relaxation CD by David Uri (see detail above).
Other Medical and Paramedical Disciplines
Of course, there are the other aspects of health management for people with MS which deserve description. However, due to the limitation of this publication, on this occasion, the author has chosen those above for presentation. GPs remain the coordinators of all facets of care and ideally neurologists and other healthcare professionals should work together in the best interests of their patients in order to optimize function.
Biography
Lucille Leader Dip ION MBANT Link
Nutritional Therapist, Lucille Leader, is the Nutrition Director of the pioneering, multi-disciplinary London Pain Relief and Nutritional Support Clinic at The Highgate Hospital in Highgate, London. She is dedicated to the biochemically-based nutritional support and functional health of patients with chronic illness.
Her special interests are Multiple Sclerosis and Parkinson’s Disease.
Lucille lectures in specialized biochemically-based nutritional management of degenerative neurological conditions at The University of Westminster in London and gives workshops and scientific presentations at international congresses. She has co-authored five successful books on Parkinson’s Disease with her husband Dr Geoffrey Leader, who is the Medical Director of the clinic. They jointly received the “Quality of Life Award for Parkinson’s” in the USA in 2004 and this year Lucille received the CAM Highly Commended Outstanding Practice Award for the UK. Her guidebook for MS sufferers and their caregivers will be published shortly by Denor Press Link.
The Bambach Saddle Seat
The Bambach Saddle Seat was designed in Australia by occupational therapist Mary Gale. During several years working with riding for the disabled, she was amazed at the profound effect that sitting on horseback had on the seated posture and trunk control of individuals with neurological symptoms.
The benefits of horse riding as therapy are now well-documented. However, Mary identified the need for a seat which replicated the saddle-sitting position, to enable individuals to enjoy improved posture easily and cost-effectively.
Sitting on the Bambach Saddle Seat encourages a healthy posture; together with an increased sitting height and slight abduction of the hips, its shape and its tilt mechanism allow the pelvis to be positioned and supported in its neutral position. This allows the spine to maintain an upright and symmetrical posture, ensuring the postural control muscles are active and work in a balanced manner.
Good posture is, of course, crucial to individuals with MS and can significantly:
- Reduce the effects of fatigue
- Address abnormal muscle tone such as spasm, stiffness and spasticity
- Reduce
The Bambach Saddle Seat can play a crucial role both in the workplace or as a functional seat in the home (during kitchen tasks, hobbies, when using a computer and so on).
The improvement in sitting posture when using the seat not only reduces the risk of musculoskeletal problems common to those with neurological symptoms, but also has dramatic effects on function, independence and quality of life.
Some testimonials from Bambach users!
Sharon Shepperdson, Scarborough:
'I find it a great help with cooking, baking, washing up and ironing. Baking is actually my hobby so it has enabled me to carry on doing what I enjoy! I previously found that standing for long periods in the kitchen was giving me back pain, dizziness and making me very tired. The Bambach gives me immediate relief and I can carry on as I long as I want without any of these symptoms and minimal fatigue. I really feel that this seat enables the person to participate in activities and life in the kitchen, which nowadays is often the heart or hub of the home. The Bambach allows me to manage my MS and allows me to do what I enjoy doing. I don't know how I ever managed without it!'
Lynda Fulcher, Shrewsbury:
'I mainly use my Bambach in the study for reading and writing but I also use it in the kitchen. My sitting posture is much better using the Bambach and I feel that I can sit with good posture without any effort. The seat puts a stretch on my inner thighs as I find that they tend to get tight as the day goes on. It also lengthens and works my trunk, which my riding instructor has advised is weak and needs work. I also find that my digestion improves which means that everything improves. It is positive to know that you are helping yourself'
Alison Verco, Retford:
‘I have used my Bambach in the kitchen but I have been mainly using it at the dining table with my laptop computer. I had previously been using a dining chair but found that I was getting considerable neck and shoulder problems; however using the Bambach I have no such problems. I initially used the Bambach for short periods as instructed as I did find it more tiring-however now I can continue to use it for as long as I need to. I love the fact the seat rotates and moves which gives me more mobility. Although I was originally unsure about the price I now see it as a great investment as I see it helping me for many years to come’
I test “drove” the saddle seat for a few weeks and was very disappointed that it took me quite awhile to get used to sitting in what was to me a foreign position.
My husband Marcus found the seat great from the first time he sat on it but then he used to be a “biker” and he was used to that position.
My daughter Laura also loved it straight away but then she is a horse rider.
I also came to love the saddle seat but it wasn’t love at first sight. Like many good relationships I had to work at it.
Once you get used to making your body work whilst sitting down, it is a great way or strengthening your core muscles without any effort.
Oh Mr Porter - John Mahoney
A few days ago my wife was readmitted to a leading London teaching hospital. She'd only been home a day before the recall. I drove her to the hospital in the early evening and stopped at the official pick up/set down point immediately outside the entrance.
She waited in the car while I went to ask for a porter. She wasn't exactly in Olympic condition, and I was tottering around on my 2 sticks as usual feeling pretty useless, unable to push, pull or carry.
I spoke to the only receptionist on duty:
"Could you kindly ask a porter to bring a chair just outside the main door to give my wife a hand please? "
Sorry but they won't/can't go outside the hospital!"
"But my wife is in no condition to help herself, and - waving my 2 sticks - nor am I".
"Where is your car?".
"At the pick up point, 5 metres from the door."
"Do you think your wife could walk into the hospital by herself and then I'll call a porter?"
"She's just been in hospital for 2 weeks and hasn't regained her sea legs yet".
There was a note of desperation in both our voices.
"Look I'm not supposed to do this. I could get into trouble...but I'll do it myself for you".
With that she abandoned her reception post, brought a wheelchair to the car, carefully helped my wife with her 2 small bags and wheeled her into the hospital. She then summoned a porter and all went smoothly. It was a gesture very much appreciated and clearly in the best NHS traditions.
The whole situation with porters - or the lack of them - set me thinking back to when I was a temporary hospital porter during student holidays. I worked at the London Temperance Hospital, a relatively small institution, which did not quite live up to its well-intentioned name. I did all the usual things: pushing patients around for treatment, fetching and carrying and so on. One day however came a task which proved to be a step too far.
I was called up to a ward and on arrival, Sister thrust an old chipped enamel kidney bowl, soap and an ancient safety razor into my hands.
"Give the fellow behind the screens a pre-op surgical shave!".
Now I was famous as a spotty youth for being totally unable to shave myself without drawing blood! Was I about to inflict the same on this poor unfortunate? I took a look. There was this old boy lying there with his pyjamas round his ankles, private parts on display with a look of total fear and trembling in his eyes. I thought about all the bits of the News of the World that had adorned my facial cuts through the years in efforts to staunch blood flow, and decided that rather than risk being a modern day surgeon-barber, I'd call it a day and look for alternative employment to supplement my student grant.
Fund Raising News
Mount Kilimanjaro Trek – Summit Success!
Trevor McIlhatton
You may recall the recent article on my impending trip to climb Mount Kilimanjaro (Africa’s highest peak at 19,340 ft) in which I promised to provide you with an update when I returned home. Well I am delighted to say that I successfully made it to Uhuru summit at 07:45 on Friday 19th September. My partner and I climbed in a group of six (there was the two of us from Scotland, 2 girls from the US, an older guy from Cork and a girl from Bristol - and we all got on very well together!). The ascent itself via the Machame route took six days in total (4½ up and 1½ down) and although a fair amount of effort and energy was expended, thankfully no altitude sickness was experienced. The highlight of the trip (apart from reaching the summit of course) was the beautiful sunrise on the final ascent, which was a welcome relief after the sub-zero temperatures and extreme wind experienced on the last leg of the climb. Indeed it was so cold that the drinking tube from my water container was frozen solid! One thing that amazed me was the speed, agility and balance of the porters carrying our tents and equipment who ascended at speed over very rocky terrain carrying tremendous loads (I don’t know how they do it!). As enjoyable as the experience was; after spending 5 nights in a tent, it was nice to get back to civilisation and a hot bath before sharing a few beers with the porters, guides and fellow trekkers and then falling exhausted into bed.
After our exertions we spent a week relaxing in Zanzibar; although it was primarily a beach holiday we did take time out to visit Stone Town and a colony of Red Colobus monkeys in Jozani Forest. I would like to take the opportunity to thank all the work colleagues and friends who sponsored me so generously - the final amount raised for LDN Research Trust (including gift aid) was just short of £900.
On behalf of the LDN Research Trust and all our members, I would like to congratulate Trevor for making it to the top of Mount Kilimanjaro and for choosing our charity. Also thank you to everyone that helped and supported him in raising £900 for LDN clinical trials.
Wishing you every success in the future Trevor.
Linda
Help fundraise with Everyclick, search engine.
Membership is free & easy and every search helps raise funds. Link
Potions & Possibilities
Welcome to the Potions & Possibilities collection, a superb collection of premium quality aromatherapy and natural health products; all developed and produced in England by trained and qualified aromatherapist, Julie Foster.
All of the range, whether essential oils, therapeutic bath & beauty products or exquisitely hand-packaged gift collections are a reflection of the energy Julie brings to her business.
By click the Link we get a commission on the goods you buy. Make sure to add it to your favourites.
LDN Research Trust Polo Shirts
These unisex loose fitting polo shirts are of a high quality and will stay in shape wash after wash, the colour will not run, smudge or fade.
Colour: White
Made from 100% polyester
Chest Sizes:
Small 38"
Medium 40"
Large 42"
XL 44"
XXL 48"
Price £10
Buy 2 and get Free P&P in the UK only, reduced price elsewhere
Postage and Packing:
UK £1.50 P&P Free if you buy 2
EU: £3
Non EU: £4.75
Link
LDN Research Hypnosis CD’s
We have 2 hypnosis CD’s for people with MS.
They cost £10 each.
For full Details Link
Win a iPod shuffle Winner
Sylvia Squirrell
Help Raise Funds by Recycling your Old Mobile Phones
LDN Research trust has joined forces with Weee Recycle Mobiles to offer a new fund raising scheme. For every phone donated Weee Recycle Mobiles will pay us between £2 and £30, depending on the make and model.
Post your old mobile phones (no chargers please) to:
Freepost Weee Recycle Mobiles
Make sure you add LDN Research Trust on the envelope.
By recycling we will be helping the environment. The number of phones being dumped on landfill sites is becoming a huge problem in the UK and requires our immediate attention. The phones donated will be reused or recycled and then resold. Many will be shipped to developing countries where the price for mobile phones is still high. There are nearly 60 million unwanted phones in the UK alone, and we are hoping everyone can take part so that this will be a successful partnership.
Before you send your phone please ensure you remove your sim card, as you will not be able to get it back (sim cards are recycled too!)
Cash for cartridges
Recycle your old ink cartridges
Please send your cartridges to:
Freepost, RLZL-EUJG-ZYEL
13 Main Street, Keyworth, Nottingham NG12 5AA
Putting our code: R01174, on the envelope.
Or you can print off the freepost address from:
Link
Or email and we will send you pre printed envelope.
Shop online and we get a commission
If you use our link we get a commission from many of the high street shops and more retailers.
LinkSales now on, get a bargain!
For information how to obtain LDN in the UK or for general LDN information call:
0871 989 9666
Calls costs 10p per minute at all
times, mobile costs may vary.
Outside of the UK please email, we have managed to help people worldwide obtain LDN
LDN Research Trust
PO BOX 1083, Buxton, NORWICH , NR10 5WY UK
Email:
Link
Trustees: Linda Elsegood, Alex Parker & Neil Lucas
Medical Advisers: Dr Bob Lawrence MRCS; LRCP
Dr Tom Gilhooly MBChB; MRCGP
Fund Raising Director: Steven Blaikie
Newsletter Editor Linda Elsegood
Sub Editor Sophie Marrion
Facebook Administrator Laura Elsegood
Web Masters Tom Műller, Lee Reynolds & Mark Lane
Graphic Designer Graham Parker
The LDN Research Trust is a non-profit-making Registered Charity, and all helpers are volunteers.
However, we are no different from other charities, in that there are unfunded elements which do ultimately cost us money to maintain and operate.
To help us continue our work with people who have Multiple Sclerosis and other conditions that LDN helps with, we would appreciate help with fund-raising, either in cash or in kind. You can be sure that all contributions are greatly appreciated, however small.
We would like to offer our thanks to all those that have made donations, we couldn’t do it without you!
How to make a Donation
PayPal
To make a PayPal Donation from anywhere in the world, click the link below……..web page and then the PayPal Button Link
To Make a Donation using MyCharitypage.com
Link
To Make a Donation Direct into our Bank Account
Or
To setup a regular monthly payment
Sort Code: 20-03-26
Bank Account No: 60515213
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