The Knowledge Board:
Motor Neurone disease
Hi I'm Belinda I'm your community manager at The Patients Voice.
If you would like to leave a comment please click on link at the bottom of the page.
You can reach me at belinda.shale@healthcarelandscape.com.
If you have not done so why not join The Patients Voice by clicked on the Join TPV tab on the navigation bar above.
It is being run, in fact, on behalf of one of our staff members. In April 2007 one of us found out that his mother-in-law was diagnosed as a motor neurone disease.
MND is the British name for the condition. This can cover the following condition amyotrophic lateral sclerosis (ALS) or Lou Gehrig's disease, progressive muscular atrophy (PMA), spinal muscular atrophy (SMA), progressive bulbar palsy, pseudobulbar palsy, and primary lateral sclerosis. So please contribute if you, friend or family member suffers from any of the above.
For her and all her family this came as a tremendous shock. Firstly they looked for more information as to what to expect over the course of the next few months and years. Secondly she wanted to make contact with other people who were living with motor neurone diseases – to share and learn as well as get support.
To help her and all Motor Neurone Disease suffers we have decided to open this blog. This is an opportunity to gain an understanding of how patients with Motor Neurone disease are supported around the world and how this could be improved.
This is an opportunity for you to tell your story. About the symptoms and diagnostic process
But most particularly we are interested in the following kinds of question:-
• Where did you seek support and information? How useful were healthcare professionals in this process?
• If you went online which resources did you find and would recommend? How valuable was the information you found?
• What advice would you give to a fellow patient or one of their family members?
• How could healthcare professionals improve the service they provide to you and others?
Please feel free to contribute your thoughts and share your experiences. All you need to do is type a nickname of your choice and the put your comments into the box. Your comments are anonymous of course!
I look forward to reading your comments and if you know of any other carers who might like to contribute their thoughts please feel free to send them either this email or the link to the blog.
Best wishes
Belinda
Moderator | 23/04/2007 14:35:00
Thanks very much for dropping by. Sharing useful web links also very useful but any comments are much appreciated Thanks
Tim Lester | 23/04/2007 15:33:00
I was diagnosed with MND on 29th November 2006. To say the bottom dropped out of my world would be an understatement. We sort of expected the worst and had even done lots of reading up before the fateful interview with the Consultant. Both my wife and I have a lot of experience working with Health Professionals and are not afraid to ask questions. Something that not everybody is comfortable with. My Father is being investigated for Prostate cancer and possible secondaries. Neither he nor my Mother have asked the Medics what they are testing for. So don't be afraid to ask, they're only human after all. Back to my situation. It must be very difficult for Medics and Allied professions dealing with people with a diagnosis of MND. All that training and what can they offer us? A drug that may prolong your life by 12 weeks. The first and most important thing you must do is keep positive. One of the main reasons for doing the sponsored walk (www.myspace.com/timsspeywaychallenge) was to keep myself focused and give me a goal to aim for. Secondly trawl the 'net. There are lots of stories of people out there who are surviving with MND and I dare say some are actually true.
Vic Valentic | 23/04/2007 23:02:00
When I was fourteen months old I developed Reyes Syndrome, which soon caused me to have Cerebral Palsy. Switching schools became a problem for me because the Board of Education didn’t appreciate my abilities and wanted to put me into a program for children with disabilities. My fear was that if I wasn’t accepted into the normal stream at school I would one day graduate and stop my educational dreams, like other friends I knew of that had Cerebral Palsy. Nevertheless, my mother knew what I was capable of and insisted to have me registered in the normal program. Apart from myself, there are four other people with disabilities in my family. My cousin is deaf and has a Cochlear implant. Two of my aunts suffer from Multiple Sclerosis, one of which recently went blind. To add to this unfortunate situation, five years ago a car hit my mother leaving her disabled for life. Now, she too is a person with disabilities within the family and can no longer drive, take care of herself or myself. Despite my disabled situation and unfortunate family history, I still have this inner drive and motivation to succeed in life. I want to help other disabled people ... by making the Internet more accessible to people with disabilities. And so this is the purpose of this website. My vision is that one day every website will be easily accessible by all people. Here you can submit websites and rank websites in terms of accessibility. Please navigate the "Categories" menu to explore currently reviewed websites. If you would like to submit a website for ranking, please click on "Submit a Website" link at the top of the page. http://www.wlu.ca/next/opendoor/wordpress/
RascalRuss | 25/04/2007 16:44:00
WOW ~ Gang! Looks Like we are off and running...er hobbeling anyway...LOL I have written numerous ezine articles about the disabeling effects of ~ and cures for ~ MS (Multiple Sclerosis). God willing ~ and I know that HE is ~ I will continue to complete my journey to complete recovery. To date ~ I have been cured "Instantainously" of "Total Incontinence" ( 20-30 disposable briefs a day) ~ and now God has directed me to use more "Conventional" ~ if not well accepted by "Traditional Medicine" ~ methods to complete my full recovery from the disabling effects of this "Dread Disease". Some helps products ~ that I use ~ are found on my "Wee Little Website" ~ Jesus4You.ws. Others are explained in my ezine articles themselves. Copy and paste the following "Addie" into your browser to see a partial list of my published articles under the name Russ Miles: http://ezinearticles.com/?expert=Russ_Miles one last comment for now ~ A friend just sent me this info on a simple cure for many "Incurable" health problems. LOL I intend to use it too very soon :) ---------- Forwarded message ---------- From: Desinie To: mscured@yahoogroups.com Date: Tue, 24 Apr 2007 14:15:04 -0700 (PDT) Subject: [mscured] Oil Pulling My mother in law sent me this info. Have any of you ever tried oil pulling and if so, did you notice any benefits? from www.oilpulling.com Dr. (med.) Karach said the OP heals totally "head-aches, bronchitis, tooth pain, thrombosis, eczema, ulcers and diseases of stomach, intestines, heart, blood, kidney, liver, lungs and women's diseases. It heals diseases of nerves, paralysis, and encephalitis. It prevents the growth of malignant tumors, cuts and heals them. Chronic sleeplessness is cured." Send your questions and concerns to info@oilpulling.com Back Ground Dr. F. Karach, M.D., presented a paper before the All-Ukrainian Association. The meeting was attended by oncologists and bacteriologists belonging to the Academy of Science of the USSR. Dr. Karach explained an unusual simple healing process using cold-pressed oils. The results of this therapy invoked astonishment and doubt concerning the contents of his report. However, after further examining the workings of the oil therapy, one has but to then test it on oneself to prove its validity and effectiveness. It is most astonishing that such results can be achieved with this absolutely harmless biological healing method. This simple method makes it possible to effectively treat the most varied diseases, in some cases enabling one to avoid surgical intervention and the taking of medications that can have harmful side effects.The exciting factor of this healing method is its simplicity. It consists of swishing cold-pressed oil in the mouth( Sunflower or Seasme, Pl. note you don't need to go for organic oils only, A normal refined sunflower oil bought from any supermarket proven to be effective in many people). The healing process is accomplished by the human organism on its own. In this way it is possible to heal cells, tissue and all organs simultaneously; the body itself gets rid of toxic waste without disturbing the healthy microflora. Dr. Karach says human beings are living only half their life span. They could potentially live healthy to be 140 to 150 years old. The method In the morning before breakfast on an empty stomach you take one tablespoon in the mouth but do not swallow it. Move Oil Slowly in the mouth as rinsing or swishing and Dr Karach puts it as ' sip, suck and pull through the teeth' for fifteen to twenty minutes. This process makes oil thoroughly mixed with saliva. Swishing activates the enzymes and the enzymes draw toxins out of the blood. The oil must not be swallowed, for it has become toxic. As the process continues, the oil gets thinner and white. If the oil is still yellow, it has not been pulled long enough. It is then spit from the mouth , the oral cavity must be thoroughly rinsed and mouth must be washed thoroughly. Just use normal tap water and good old fingers to clean. Clean the sink properly, you can use some antibacterial soap to clean the sink. Because the spittle contains harmful bacteria and toxic bodily waste. If one were to see one drop of this liquid magnified 600 times under a microscope, one would see microbes in their first stage of development. It is important to understand that during the oil-pulling/swishing process one's metabolism is intensified. This leads to improved health. One of the most striking results of this process is the fastening of loose teeth, the elimination of bleeding gums and the visible whitening of the teeth. The oil pulling /swishing is done best before breakfast. To accelerate the healing process, it can be repeated three times a day, but always before meals on an empty stomach. Precautions (a) Do not swallow. The oil should be spat out. But inadvertently if you swallow there is nothing to worry. It will go out through faeces. Nothing is to be done. (b) If you are allergic to a particular brand of oil, change the brand of oil or oil itself to different oil. (c) Sunflower and Sesame oil have been found to be equally effective in curing diseases. Other oils were not found to be as good. Do not blame oil pulling by practicing with other oils. Use refined oils. Results of Oil Pulling The result of this healing research has attracted amazement and resulted in further research. This additional research concerning Oil Therapy has now been thoroughly documented, especially with regard to physiological similarities between individuals. It is surprising that through this biological healing method a wide variety of symptoms have unquestionably disappeared without any side-effects. This simple method makes it possible completely heal such a wide variety of diseases which would normally be treated by an operation or by powerful or potent Drugs, usually with significant side-effects. The simplicity of this healing system in which Oil is swirled backwards and forwards in the mouth, is due to the stimulating effect which it has on the body's eliminatory system. Through this method it is possible to heal individual cells, cell conglomerates such as lymph nodes and more complex tissues such as internal organs simultaneously. This occurs because the beneficial microflora throughout the body are provided with a healthy continuum. Without this natural bodily intrusive element evinced by the microflora the usual pattern of human health tends to lean towards illness rather than wellness. Dr. Karach anticipates that regular application of this treatment by reversing this process so that wellness is the dominant state of the human body is likely to increase the average human lifespan to approximately 150 years, double the present life expectancy. Dr. Karach is supported in this view by other colleagues in the world. By means of this treatment {Oil } it is invariably the result that diseases like migraine headaches, bronchitis, diseased teeth, arterio thrombosis, chronic blood disorders such as leukemia, arthritis and related illnesses, neuro physiological paralysis, eczema, gastro enteritis, peritonitis, heart disease, kidney disease, meningitis, and women's hormonal disorders are completely eliminated from the organism. The benefit of Dr. Karach's method is that the oil therapy heals the whole body in perpetuity. In terminal diseases such as cancer, Aids and chronic infections this treatment method has been shown to successfully replace all others. Dr. Karach has successfully healed a chronic leukemia patient with 15 years of harsh treatment methods behind him. Acute arthritis in 1 patient who was totally bedridden was removed from his body in 3 days with no inflammation apparent. NOTE: The recommended oils to use are Sunflower Oil, Seasme Oil. We are receiving many emails about which oil to use. Our experience with thousands of people across the globe says USE COLD PRESSED OIL as first choice, if it is not available use REFINED OIL ( which seems to be effective in the process too). We have observed that any oil other than SUNFLOWER or SEASME may not be effective. more info here.. http://www.earthclinic.com/Remedies/oil_pulling.html and here... http://www.thehindubusinessline.com/life/2003/02/10/stories/2003021000160400.htm
Dana | 26/04/2007 04:58:00
I just joined today and not really sure what this site is all about. I thought is was mainly anout ALS. I have a very strong run of it in my famy family and wonder who will strike next. Joe R. Meridith (my Dad) Died 4-14-1983 of ALS. Patricia Gaskins (Dad's Sister) Died 1-2007 of ALS. Vernadean Hughes (Dads Cousin) Died 1-26-1998 of ALS. Roger Pickett (Dad's Cousin) Died in 2000 of ALS. Thomas Meridith (Dad's Uncle) Died in 1979 of ALS. Betty Coleman (Dad's Cousin) Died in 1998 of ALS. All 6 of these people are blood realitives, all brothers, sistes, cousins and one uncle. Can anyone tell me why ALS has taken so many in my family and how many more will suffer?
SHYREL WILLETT | 04/06/2007 17:45:00
I have als-I had (2) brothers that have already died from this disease. I also have a girl cousin with als-she has had als since 1998-both of my brothers lasted around 10 years with als.We grew up on a farm.We grew cotton and tobacco-we think it the chemicals we used on the crops. I am the youngest of 7 kids-so I didn't work in the fields like my brothers did. My ALS is the nonfamilial type-I trying the medical way and the alterative mecidine. Because nothing out there is working for us.
Nithya Sambasivan | 07/06/2007 16:57:00
Hello everyone, I am a graduate student in Human-computer Interaction at Georgia Tech, advised by Dr.Melody Moore Jackson(who, as you may know, conducts research on Brain-computer Interfaces). For my master's project, I am conducting research on designing environmental and home appliance control devices for PALS. I was wondering if you would be able to help us out with the research by filling the attached questionnaire. If you are interested, kindly peruse through the attached Consent Form and then please fill out the Questionnaire. There is no need to fill the consent form; it is for your reference only. I would also like to follow this up by interviewing you over the phone, if it is possible. Please find the attachment at the following web address: http://www-static.cc.gatech.edu/~nithya/Q1.doc http://www-static.cc.gatech.edu/~nithya/C1.doc Your help is really valuable to us. Thanks in advance. Regards, Nithya -- Human Computer Interaction candidate Graphics, Visualization and Usability Center Georgia Tech
Sue Burstein | 23/04/2008 22:04:00
My dad had ALS - bulbar onset - in 1986. A few years later I became the Exec. Director for ALS of Michigan www.alsofmichigan.org.I am very proud of what we do for our pALS in Michigan, and am happy to share our online info with all of you. In fact, we have a Resource Guide that is continually updated online in PDF format so please feel free to visit the link above. There is a ton of great information in there for anyone who cares to read it. It is currently broken down into 8 different sections and can be read online or printed off. So feel free to do so.If I can answer any questions for anyone I will be happy to do so also.To those with familial ALS - or what appears to be familial ALS (where many people in your family have or have had the disease) they are continually discovering new genes that may be implicated in the disease. For many years the only gene we were sure of was the SOD-1. Researchers have discovered others that cause ALS. There is also considerable attention being paid to environmental factors and how they trigger people who may have a predisposition to the disease.I hope our website is of help and all of you are constantly in my thoughts and prayers.
Enys Evans | 20/07/2008 17:23:00
My friend who is 48 has Motor Neurone and I was wondering if anyone has used Neuratax (supplement) at all? On the website www.neuratax.com it claims to heal ALS. It's made from herbs and natural things and it's one pill a day. Thank you.
Please leave a comment below.
The Patients Voice The Patients Voice is one of the many patient-focused services from Healthcare Landscape. Healthcare Landscape is a medical and healthcare research company, which conducts interviews with all the different kinds of people involved in the healthcare process. They range from patients and their carers, to medical professionals like nurses, pharmacists, physicians and academics. Our mission is to find out what they think and what their experiences have been.
We can interview over the web, at home or at a special research facility; depending on what type of study it is, the choice is often yours. We also run patient diaries and blogs, so you can air your views as honestly and informally as you like. We want to ensure that you have access to the best research experience, and in turn, our clients will learn from your story. Our clients are quite diverse. They range from pharmaceutical or medical device companies, to charities and government bodies. The Patients Voice is open to anyone in the world who wants to give an opinion and would like to try to make a difference. This forum gives you power by allowing you to get YOUR VOICE HEARD.
You should always consult your physician regarding any medical issues. While we attempt to make sure the information on this site is as accurate as possible consulting a medical professional is always to be advised.
Membership of the Patients Voice is Free and open to anyone.
To become a member of the Patients Voice please enter your email below and click Submit.
