About Muscular
                  Dystrophy Logo, Downriver Michigan



There are many reasons for this page. While there is much information on Muscular Dystrophy on the Internet and various other places. I wanted to provide a place where much of that information could be located easily.

Let me make it perfectly clear that I am neither a doctor or any other type of health care professional. My only knowledge comes from the fact that I have a form of MD called Friedrich's Ataxia. I have spent some time looking for information and possible treatments which I will share with anyone here.

I invite anyone to share any knowledge they may have with visitors to this site. Simply email me

If you read as much as I have from the conventional medical field you tend to lose hope of a treatment or cure.

My feelings are do as much as you can. I never accept what the doctors tell me and I do things they say I can't do. My younger brother never let his condition stop him as long as he could keep going he did and attempted things even I didn't consider.

Do you have a poem or story? Send it here

I'm afraid there was no way to make this short as there is lots of information here. Some may apply to many people and some only to me. I have to make another point here...I use homeopathic remedies, some people have a very difficult time accepting that and if you are one of the people are unwilling to consider them I would suggest that you not even read any further.
I asked the homeopath one day who is helping me what advice I could give people with one of the forms of MD? His answer was "Get to a good homeopath as soon as possible"


Alternatives

Personally I have tried a few other types of treatment. This page will deal with some of those possibilities. If any of these links go off of this domain they open in a new window. Close that window to return here. These are unconventional or alternative sources
News Have you ever heard of LDN (Low Dose Naltrexone)?  Info here I am conducting my own trial here





AyurvedicHolisticHealing I joined this group and have found very good information and help from the founder. I urge everyone to join. I found this website about the Edgar Cayce treatment

More about Edgar Cayce

Another good site about Edgar Cayce

Homeopathy I have seen some benefits. This is a link to David Little's website. David Little is very well known and respected.
Chiropractic Many chiropractors use other methods along with vitamins. This is the website of my Chiropractor. Why You May Not Want to Vaccinate - Making An Informed Choice

I encourage everyone to learn the truth about vaccines and the information and links are here. There is evidence that many of the health problems we have could be linked to vaccinations. Who knows maybe even MD?

A very good article about Discovering Homeopathy by Dale C. Moss. Check out the rest of the site too. 
Muscular Dystrophy and Nutritional Therapy Some interesting ideas here. Find a homeopath This is a list of recommended Classical homeopaths and would be where I would start my search Health Information and more A good directory containing links to conventional as well as alternative information.
Vitamin Treatment For Hereditary Ataxia Brings Dramatic Improvements Source:    American Academy Of Neurology
Date:    April 11, 2001
Friedreich's ataxia: disease mechanisms, antioxidant and coenzyme Q10 therapy
Cooper JM, Schapira AH, Biofactors 2003;18:163-171.
Found this on Google Books about Friedrichs Ataxia Treatment.
By Pierre Jousset - 1901 - Homeopathy - 1109 pages

A couple of studies I just became aware of thanks to PubMed a service of the U.S. National Library of Medicine. I was told about them by Andreas M. Papas PhD, President YASOO Health Inc.
Yasoo is where I buy vitamins since they answer questions.
Fredreichs Ataxia
Fredreichs Ataxia
Hart PE, Lodi R, Rajagopalan B, Bradley JL, Crilley JG, Turner C, Blamire
AM, Manners D, Styles P, Schapira AH, Cooper JM. Antioxidant treatment of
patients with Friedreich ataxia: four-year follow-up. Arch Neurol. 2005
Apr;62(4):621-6.

BACKGROUND: Decreased mitochondrial respiratory chain function and increased oxidative stress have been implicated in the pathogenesis of Friedreich ataxia (FRDA), raising the possibility that energy enhancement and antioxidant therapies may be an effective treatment.

OBJECTIVE: To evaluate the long-term efficacy of a combined antioxidant and mitochondrial enhancement therapy on the bioenergetics and clinical course of FRDA.

DESIGN: Open-labeled pilot trial over 47 months.Patients Seventy-seven patients with clinical and genetically defined FRDA.Intervention A combined coenzyme Q(10) (400 mg/d) and vitamin E (2100 IU/d) therapy of 10 patients with FRDA over 47 months.

MAIN OUTCOME MEASURES: Clinical assessment using
echocardiography and the International Cooperative Ataxia Rating Scale and cardiac and skeletal muscle bioenergetics as assessed using phosphorus P 31 magnetic resonance spectroscopy.

RESULTS: There was a significant improvement in cardiac and skeletal muscle bioenergetics that was maintained throughout the 47 months of therapy. Echocardiographic data revealed
significantly increased fractional shortening at the 35- and 47-month time points. Comparison with cross-sectional data from 77 patients with FRDA indicated the changes in total International Cooperative Ataxia Rating Scale and kinetic scores over the trial period were better than predicted for 7
patients, but the posture and gait and hand dexterity scores progressed as predicted.

CONCLUSION: This therapy resulted in sustained improvement in mitochondrial energy synthesis that was associated with a slowing of the progression of certain clinical features and a significant improvement in cardiac function.
Cooper JM, Schapira AH. Friedreich's Ataxia: disease mechanisms, antioxidant
and Coenzyme Q10 therapy. Biofactors. 2003;18(1-4):163-71. Review.

Mitochondria clearly play a central role in the pathogenesis of Friedreich's Ataxia. The most common genetic abnormality results in the deficiency of the protein frataxin, which is targeted to the mitochondrion. Research since this discovery has indicated that mitochondrial respiratory chain dysfunction, mitochondrial iron accumulation and oxidative damage are
important components of the disease mechanism. While the role of frataxin is not known, evidence is currently pointing to a role in either mitochondrial iron handling or iron sulphur centre synthesis. These advances in our understanding of the disease mechanisms are enabling therapeutic avenues to be explored, in particular the use of established drugs such as antioxidants and enhancers of respiratory chain function. Vitamin E therapy has been shown to be beneficial in patients with ataxia with vitamin E deficiency, and CoQ10 therapy was effective in some patients with ataxia associated with CoQ10 deficiency. A combined therapy involving long term treatment with high
doses of vitamin E and coenzyme Q10 has jointly targeted two of the major features of Friedreich's Ataxia; decreased mitochondrial respiratory chain function and increased oxidative stress. This therapy clearly showed a rapid and sustained increase in the energy generated by the FRDA heart muscle,
nearly returning to normal levels. The improvements in skeletal muscle energy generation parallel those of the heart but to a lower level. While this therapy appeared to slow the predicted progression of some clinical symptoms a larger placebo controlled study is required to confirm these observations. Other antioxidant strategies have involved the use of
Idebenone, selenium and N acetyl cysteine but only the use of Idebenone has involved structured trials with relatively large patient numbers. Idebenone clearly had an impact upon the cardiac hypertrophy in the majority of patients, although there have not been any other significant benefits reported to date.
MS
MS
Nordvik I, Myhr KM, Nyland H, Bjerve KS.  Effect of dietary advice and n-3
supplementation in newly diagnosed MS patients. Acta Neurol Scand. 2000
Sep;102(3):143-9.

OBJECTIVE: To investigate whether supplementation with fish oil given together with dietary advice and vitamin supplementation influenced the clinical outcome in newly diagnosed multiple sclerosis (MS) patients.

MATERIAL AND METHODS: Sixteen consecutive, newly diagnosed patients with multiple sclerosis were recruited to an open intervention study. They were given dietary advice and supplemented with 0.9 g/day of long-chain marine fatty acids and vitamins. The patients were followed for 2 years with
respect to dietary habits, blood parameters and neurological assessment including exacerbation rate.

RESULTS: There was a significant reduction in the mean annual exacerbation rate and the mean Expanded Disability Status
Scale (EDSS) as compared to pre-study values. The plasma total phospholipid n-3 fatty acids increased and n-6 fatty acids decreased significantly.

CONCLUSIONS: The results suggest that fish oil supplementation given together with vitamins and dietary advice can improve clinical outcome in patients with newly diagnosed MS.
Stewart TM, Bowling AC. Polyunsaturated fatty acid supplementation in MS.
Int MS J. 2005 Nov;12(3):88-93.

This article focuses on polyunsaturated fatty acid (PUFA) supplementation, which is a popular form of complementary and alternative therapy among people with MS. Owing to their popularity, clinicians should be knowledgeable about the PUFA supplements that are widely available, and the efficacy and safety data from clinical studies. Small-scale studies have
demonstrated trends towards some beneficial effects. PUFA supplementation is generally well tolerated, although some specific supplements are best avoided and some clinical situations warrant caution. A review of the efficacy and safety data suggests that PUFA supplementation may be a promising approach. Large-scale trials are required to confirm the benefits.

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