Cordination physiotherapy

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DIAGNOSIS OF ATAXIA

DIAGNOSIS OF ATAXIA

Being diagnosed with Ataxia can be overwhelming. Below are a few frequently asked questions that can help you to understand ataxia better.

What is Ataxia?

The word “ataxia”, comes from the Greek word, ” a taxis” meaning “without order or incoordination”. The word ataxia means without coordination. People with ataxia have problems with coordination because parts of the nervous system that control movement and balance are affected. Ataxia may affect the fingers, hands, arms, legs, body, speech, and eye movements. The word ataxia is often used to describe a symptom of incoordination which can be associated with infections, injuries, other diseases, or degenerative changes in the central nervous system. Ataxia is also used to denote a group of specific degenerative diseases of the nervous system called the hereditary and sporadic ataxias which are the National Ataxia Foundation’s primary emphases.

How is Ataxia Diagnosed?

Diagnosis is based on a person’s medical history, family history, and a complete neurological evaluation including an MRI scan of the brain. Various blood tests may be performed to rule out other possible disorders which may present similar symptoms. Genetic blood tests are now available for some types of hereditary ataxia to confirm a diagnosis or as a predictive test to determine if someone has inherited an ataxia gene known to affect other family members.

What are Common Symptoms?

Symptoms and time of onset vary according to the type of ataxia. In fact there are often variations even within the same family with the same type of ataxia. Recessive disorders commonly cause symptoms to begin in childhood rather than adulthood. However, in recent years since genetic testing became available, it is now known the Friedreich’s ataxia has an adult onset on some occasions. Dominant ataxia often begins in the 20s or 30s or even later in life. Sometimes individuals may not show symptoms until they are in their 60s.

Typically balance and coordination are affected first. In coordination of hands, arms, and legs, and slurring of speech are other common symptoms. Walking becomes difficult and is characterized by walking with feet placed further apart to compensate for poor balance. Impaired coordination of the arms and hands affect a person’s ability to perform tasks requiring fine motor control such as writing and eating. Slow eye movements can be seen in some form of ataxia. As time goes on, ataxia can affect speech and swallowing.

The hereditary ataxias are degenerative disorders that progress over a number of years. How severe the disability will become and whether the disease will lead to death depends on type of ataxia, the age of onset of symptoms and other factors that are poorly understood at this time. Respiratory complications can be fatal in a person who is bed bound or who has severe swallowing problems. Some persons with Friedreich’s ataxia develop serious cardiac problems.

What is Sporadic Ataxia?

There is a large group of people who have symptoms of ataxia that usually begin in adulthood and who have no known family history of this disease. This is called sporadic ataxia and it can be difficult to diagnose. There are many acquired and hereditary causes of ataxia which must be ruled out before a diagnosis of sporadic ataxia can be made. Sporadic ataxia can be either “pure cerebellar” if only the cerebellum is affected or cerebellar plus, if the ataxia is accompanied by additional symptoms such a neuropathy (dysfunction of the peripheral nerves); dementia (impaired intellectual function); or weakness, rigidity, or spasticity of the muscles. Disability may be greater and progress more quickly with the cerebellar plus form of sporadic ataxia. The cerebellar plus form of sporadic ataxia is also known as sporadic olivopontocerebellar ataxia ( sporadic OPCA) or multiple system atrophy, cerebellar type (MSA-C).

Ataxia as a Symptom

For people who have ataxia as a symptom of other medical conditions such as head injury, stroke, MS, alcoholism, etc., we recommend that you contact the organization related to your specific condition for the most up-to-date and accurate information.

How do I Get More Information?

The hereditary and sporadic ataxias are a complex group of diseases and this information is but a brief overview. You are welcome to download the ataxia information sheets from this website or contact the National Ataxia Foundation for additional information on hereditary and sporadic ataxias as well as more information on the genetics involved. This information is not intended in any way to replace information you have received from your doctor(s). Please note that we cannot answer specific questions concerning your situation, recommend drugs or suggest diagnosis. Please discuss these concerns with your doctor.

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what is Friedreich’s-Ataxia

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#Slide 1. Friedreich’s ataxia is an inherited neuro-degenerative disease, affecting the body gradually after its onset. The patient may experience a slurred speech, blurred vision, imbalanced body movements, drunken gait, poor co-ordination  and other related problems including diabetes, heart ailments etc. which often gets worse over time and may also cause early death in certain cases.

#slide 2. Talking about FA in India – the concentration of the sufferers of this disease is very low when compared to other big countries like USA and UK. And may be because of this the awareness as well as the research on the disease is almost low.

#Slide 3. SAMAG(seek a miracle ataxia group) is a private organization that was started by Chandu, an FAer from Hyderabad India with its branches in various Indian cities like Indore, Pune. The main motive of this organization is to raise awareness of FA among people and help the FAers along with rare disease patients and their families. The group members participate and also help in organizing medical camps like the DNA camp in Indore that was recently organized by AIIMS.

#Slide 6. Although there is no cure for FA yet, but the researchers and scientists have been working for years to find a cure for FA very soon.

#Slide 7. Trials are now being conducted on patients, many of which are showing a positive result. This has increased the expectancy of patients of living a better life.

#Slide 8. Here we see the research pipeline of FARA (Freidreich’s Ataxia Research Alliance). Out of all the drugs,  I would like to emphasize mainly on the EPO and EPI743 by Edison pharmaceuticals as these two have successfully crossed the phase I and Are about to step into the phase III of drug trials

#Slide 9.  The abnormality in the frataxin protein levels is the main cause of this disease. The EPO (Erythropoietin)  drug has been found to increase the activity of frataxin gene in FA patients, and hence the effects of the is great. On the other hand EPI 743 improves  the mitochondrial dysfunction that is again one of the causes of FA. Both of these drugs are well tolerated by patients.

#Slide 10.  I would also like to highlight the stem cell therapy, which is carried out around various private hospitals and clinics and have shown positive results in many ailments including FA. But, as all of the patients cannot afford the big fees of this therapy, I would also like to request the doctors of the govt hospitals to make arrangements of the same at a lower cost.

#Slide 11. We want these drug trials to be initiated by the doctors and researchers in India, but the rules and regulations of the Indian Government on the clinical trials on patients is a big hindrance on the hopes of patients

#Slide 12. On behalf  of all the ataxia patients, I wrote a letter to the president of India, Dr. Pranab Mukherjee last year and requested him to remove the ban imposed on drug trials in India, but got no positive response.

#Slide 13. The views of the guardians and patients suffering with ataxia were also sent to the president along with the letter where all of them have appealed the govt officials to relax the restrictions on clinical trials.

#Slide 14. We patients expect firstly from the Indian govt. to remove the restrictions  on clinical trials. Secondly, we request the researchers and doctors of India and abroad to collaborate and start with clinical trials, especially the trials which are on the phase 3. Thirdly, almost everyone of us would like to volunteer for the stem cell therapy and drug trials. We have waited for long and now expect them to be started as soon as possible.

Abstract:-

Friedreich’s ataxia is an autosomal recessive inherited disease that progressively damages the nervous system of the sufferer. As a result, the FAer experiences slurred speech, blurred vision, imbalanced gait and body movements, poor muscle co-ordination, diabetes, heart ailments and many other problems that worsen over time. An early death can also be an outcome of FA.

When talking about FA in India, the concentration of people with this disease is comparatively lower than that in the USA and UK. Moreover, the awareness about this neuro-degenerative disease is pretty low among people. However, back in 2006, Mr. Chandu Prasad George (FA sufferer) founded SAMAG- Seek A Miracle Ataxia Group, with an ambition of spreading awareness about FRDA and also support the sufferers and their families.

As far as a cure for this disease is concerned, then sadly there is no sure shot treatment available yet. However, the scientists and researchers from all over the globe have begun to work for the development of an effective treatment to fight and prevent this progressive ailment. Clinical trials of various drugs and therapies are being conducted on patients with many showing positive results.

But, no kind of drug or therapy trials are even started in India, which is demoralizing for every sufferer. Although the doctors and researchers are willing to carry out clinical trials on the patients, but they are obstructed by the restrictions imposed on clinical trials on humans by the government of India.

Last year, on behalf of all FAer’s,  a letter was written to the president of India, with a request to remove the ban and allow the clinical trials to be conducted on the volunteer patients in India. But, this effort hardly accomplished any positive result.

Today again, all we patients would like to  make a request from the Indian government to grant the necessary permissions to the authorized doctors and researchers who are willing to carry out the drug and therapy trials, as all of us are seeking for a miraculous treatment.

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ataxia awareness camps @ indore

 

Seek A Miracle Ataxia Group
Help us to share help
“SAMAG – Indore Chapter,M.P”
WELCOMES
YOU ALL
http://www.samataxiagroup.org

 

 Awareness & Psychological

Aspects of Rare Neurological

Disorder Camp

In Association with
National Brain Research Centre

(NBRC)

http://www.samataxiagroup.org

 

How to get Involved
SAMAG offers you the

option to join as………

Volunteer,
Sponsor a Ataxian,
Fund raising events &
Make a donation.
http://www.samataxiagroup.org

 

Work done by Indore Chapter
International Ataxia Awareness Day at Indore in 2007

 

Work done by Indore Chapter
Meeting at Bharat Vikas Parishad Sewa Nyas, Indore

 

Work done by Indore Chapter
Ataxia Awareness Meeting at Indore 2010

 

Work done by Indore Chapter
Handicap Certificate & Railway Concession Certificate Distribution

Programme in association with Bharat Vikas Parishad Sewa Nyas,

Indore

 

Work done by Indore Chapter
   Medical Checkup & DNA Blood Sample Collection Camp in

association with AIMS Delhi & Bharat Vikas Parishad Sewa Nyas,

Indore

 

Work done by Indore Chapter
Physiotherapy Camp & DNA Test Report Distribution in Association

with Bharat Vikas Parishad Sewa Nyas, Indore

 

Work done by Indore Chapter
Participated in 27th Annual Meeting of SNCI & International

Conference on Recent Advances in Molecular Mechanisms of

Neurological Disorders at AIIMS, New Delhi

 

Work done by Indore Chapter

 

HELP US TO SHARE HELP
http://www.ataxia.in
Thank you
http://www.samataxiagroup.org
http://www.samataxiagroup.org

 

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AACT- indore chapter

AACT-Indore Chapter Work

AACT-Indore Chapter Work

Report of Ataxia Awareness meeting held on Sept 23,2007 –

 

For raising  Ataxia awareness a meeting was organized by SAMAG , Indore chapter on 23rd Sept 2007 at neurology department of M.Y. Hospital, Indore. Neurologist,Physiotheraist,Doctors,Social Groups and Ataxia patients attended the meeting.

Eminent neurologist Dr.Apoorva Pauraik addressed the meeting. In hi talk he explained about ataxia.He said that there are different types of ataxia and noe a das diagnostic tests are available to detact many types of ataxia. He emphasized that although there is no cure of ataxia till now, the patients should be encouraged for DNA testing to confirm type  of ataxia because categorization and classification is the basic requirement for further research .He added that because the disease is progressive and makes the patient completely dependent in  course of time , there is urgent need of researches to find cure of ataxia.

Expert Neuro-Physiotherapist , Dr.Deepak Nair , from Arbindo medical college demonstrated physiotherapy exercises useful for ataxia patient.  He said that if cerebellum is not properly functioning through practice it is possible to transfer its function to some other part of brain. His speech was a hope to ataxia patients loosing co-ordination and balance .

In the end Ms, Swasti wagh ,President of SAMAG-Indore Chapter , spoke about self help group SAMAG(Seek A Miracle-Ataxia Group) which is registered in Hyderabad by an Ataxia patient Mr.Chandu George. She appealed society to come  forward to support the activities of SAMAG for the welfare of ataxia patients.

 

 

 

 

Report ot Ataxia Awareness seminar by (SEEK A MIRACLE ATAXIA GROUP) Indore Chapter,  on 21/02/2010  :

 

 

SAMAG ; Seek A Miracle-Ataxia Group , organized a seminar on Ataxia on 21st feb 2010 at Naath Mandir , Indore , India .

Eminent Neuro-physician ,Physiotherapist , Speech therapist , clinical optometrist and around 20 Ataxia patients from Indore and around participated in the seminar . The seminar began with the recitation of the poem written by Sunder , an ataxia patient

Neuro-physician Dr. Apoorva Pauranik emphasized the need of preparing a database of the patients to facilitate research activities on Ataxia .Physiotherapist Dr.Deepak Nair (Arvin do Hosp. , Indore) informed about the physiotherapy equipment designed byhis students under his guidance , which will activate spinal cord centers to improve co-ordination . The equipment is under fabrication and soon will be ready for experimentation. Speech therapist Dr. Siddheshwar Pandey (Arvindo Hosp , Indore) adviced patients about their speech problems . Clinical optometrist Shri  Mukul Gadewadikar (Bombay Hosp , Indore) talked about the eye problems associated with Ataxia and how to take care of it . Physiotherapist Dr. Sudhir Kothari (Chouthram Hosp , Indore) demonstrated a number of simple physiotherapy exercises using the common things available at every house .Ms. Swasti Wagh , president Indore Chapter of SAMAG spoke about aims and objectives of SAMAG .

 

REPORT OF MEDICAL CHECK-UP CAMP ON  18/09/2010 :

 

SAMAG – Indore chapter organized a free medical checkup camp for Ataxia patients on 18 th sept 2010 at Sampurna Diagnostic Clinic .Dr. Kiran Jekab and Dr. Abhishek rathore of M.Y. Hospital examined all Ataxia patients under guidance of Dr. Apoorva Pauranik (M.D.,D.M. ,Neurophysician , M.Y. Hospital , Indore , M.P.) .A team of Ph.D.student of Dr.M.R. Rajeshwari (M.Sc., M.Phil., Ph.D., Department of Biochemistry, AIIMS,Dehli), Mr.Vishnu Prasad and Mr. Deepak Kumar , from AIIMS , Dehli came to collect blood samples of Ataxia patients in camp .The D.N.A. Test for confirmation of Ataxia will be performed at AIIMS ,Dehli . The D.N.A. investigation benefits the research in Ataxia and will help in finding the possible cure of Ataxia .

SAMAG-Indore chapter expresses heartiest thanx to Dr.Rajeshwari and her Ph.D. student Mr.Vishnu Swarup and Mr. Deepak Kumar from AIIMS , Delhi and Dr.Apoorva Pauranik and his collegue Dr.Kiran and Dr.Abhishek of Neurology Deptt. Of M.Y. Hospital , Indore for clinical examination of Ataxia patients.We are very much thankful to Dr.Sodhani of Sampurna Diagnostic Clinic for accommodating the cap activity in their campus  We are also thankful to CHL Apollo , Indore for permitting the use of their Centrifuge and cold storage .

Lastly SAMAG is greatful to SEVA branch of Bharat Vikas Parishad for extending help and co-opration in arranging this camp.

Report of Physiotherapy Camp on 9/04/2014:

SAMAG-Indore Chapter organized physiotherapy camp with the help of Bharat Vikas Parishad , Indore at Sputnik Bhavan,Press Complex,Indore on 9th April 2014.

In the camp Dr.Apoorva Pauranik distributed DNA test reports from AIIMS,Delhi to ataxia patients.

Dr.Pankaj Jain , neuro-physiotherapist from Rajasthan advised physiotherapy exercises suitable to ataxia patients.

Report of Brain Awareness Camp on Rare Diseases And Key Psychological Issues of Caregivers  on 1/03/2015:

An awareness camp on rare diseases was organised by Seek a Miracle Ataxia Group
(S.A.M.A.G) in association with National Brain Research Centre (N.B.R.C) in Indore on 1st March 2015. The camp was attended by over 100 people and arranged at Nath Mandir,Indore. The participants included patients of MS, MD, Ataxia and spinal injury, caretakers and general public.

Ms. Swasti Wagh,President – SAMAG,Indore Chapter,inaugurated the camp by addressing the audience.

Speakers
Dr. Apoorva Puranik
One of the key speakers of the event, Dr. Apurv Puranik is a well known neurologist
based in Indore. He emphasised on the need of awareness and education of rare
diseases among the population . his speech also stressed the need of skill development of the especially abled. He also encouraged public to think about starting and helping sheltered workshops  in India to help the patients of rare diseases .

Mrs. Tapati RoyYadav
A psychologist by profession, Ms.Tapati’s speech focussed on the nature of psychology and what basically goes through the minds of patients and caretakers specially.

Mr. Prathmesh Desai
National Secretary, Viklanga Sahayata Seva of Bharat Vikas Parishad, Mr. Desai gave an insight to the programs they have conducted and upcoming for specially abled patients.
Mrs. Kirti Dike
Mrs. Kirti heads the women’s division of Lions Club Indore. She shared the problems
and issues she faced with her daughter who is suffering from spinal bipedia . She motivated all the care givers and family of patients by giving examples from her experiences .

A quiz competition was organised for all the participants. The questionnare and answer sheet were distributed along with the registration kit. Top three scorers were given prizes.

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struggle to become independent

PaperBag_01Dear sir/ma’am,

 

I am  Vilas Shinde. Who is suffering from an ATAXIA from last Ten plus year. As the subject tells this email is regarding the purchase of Paper bags made by Vilas to sustain his lively hood (would saymore than to earning few hundred here is a struggle to live dignified life in this challenging period of ours).

Attached are the few images of paper bags, its dimensions are ~23.5 cm X 25 cm (width x length) the last two pictures have the sticker saying this paper bag is made from ATAXIA patient.

Till last month Vilas used to earn 1000 rupees by selling 500 bags, costing 2 rupees per bag but the lone customer said they are having difficult time selling these bags and hence cannot purchase from this month onwards. Vilas is writing with utmost humbleness that your organization will fill this void left by lone customer by marketing the handmade paper bags.

Hoping to hear you positively from you on his earnest appeal.

I am also attaching the article appeared on sept month ‘Golden sparrow’ weekly magazine dated 22 Sept’14, page 11 on Vilas story and fight with ATAXIA. Please do read this and reach him at the earliest.

 

Yours sincerely,

Vilas shinde

942 073 1096

 

vilas article

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Ataxian awarded for spirit to help

IMG-20150728-WA0039IMG-20150728-WA0040IMG-20150728-WA0041IMG-20150728-WA0042IMG-20150728-WA00431888928_966325133408437_2201824269749541976_o 1891501_966329083408042_3516017601840973688_o 10497223_966330316741252_357363189252857859_o (1) 10497223_966330316741252_357363189252857859_o 10668667_966330150074602_378841140486658631_o 10993971_966329283408022_7291666053051565020_o 11035628_966332546741029_7636145618664353464_o 11037504_999051683469115_5073512484454690881_o 11038265_999052570135693_7526042710087299328_o 11050190_966332113407739_2796533919473018496_o 11102920_999054703468813_5428720319286979203_o 11129910_999056210135329_2345793134767067848_o 11140213_999050183469265_4659577613040892946_o (1) 11140213_999050183469265_4659577613040892946_o 11149788_999053810135569_9111886394543918691_oFor last 15 years of ataxia awareness and support to patients of ataxia swasti  wagh  was awarded by Indian government speaker swasti  being an fa ataxia ptnt she n her parents from indore are very active and  voluntarily doing this noble work

their families have ever coordinated and organized several çamp ffor years  medical care of atzxàns n blood test dna check  diagnosed ataxia also gave moral n mental strength to ataxians  gui dedicated  how to fight ataxia n still planning to oorrganize nayional level campaign on dna research n drug  trials on different type of ataxia for future or   nxt  new generation so dey dont suffer  ss we did

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Ataxia awareness Walkathon

  • 11159904_860932843986049_7997185042596217337_o11393023_10152527158824229_6511253217188112702_nDear friends hi last weekend on june 13 2015 along with 300 puneiites we walked for stopping child labor we 3 ataxians on wheelchairs supported  by   hope for children foundation
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Cake Cutting for International Awareness Ataxia Day 2013

This gallery contains 33 photos.

Youngest members of Ataxia Awareness Group, 6 year old Riya and 9 year old Sanjay, flanked by their mothers cut the cake on occasion of International Ataxia Awareness Day…. God bless them… It is an incurable, degenerative, neurological condition which … Continue reading

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Researchers close to finding cure for neuromuscular disease

https://www.youtube.com/watch?feature=player_embedded&v=NVOj6kUyYQc

 September 25th a new day with new hopes and a day dedicated to raising awareness on ataxia, Here’s wishing all a happy (International Ataxia Awareness Day) 2013, please join hands and raise awareness on ataxia by observing IAAD .

IAAD :  The  “International  Ataxia  Awareness  Day”   is an international effort from ataxia organizations around the world to dedicate September 25th as International Ataxia Awareness Day. The goal of IAAD is for any individual to create awareness about ataxia through educating a group of people by speaking at a Medical community or its related conference group, or raise financial support for this cause.

Ataxia’s : The  ATAXIA’s  are  rare,  progressive  disorders  of  the  nervous  system  affecting balance and coordination. People of all ages and races are affected, males and females are affected equally.

Ataxia’s can be Inherited or sudden(Recessive) due to faulty genes, There are many different types of identified ataxia’s,  In India the most common are Spino cerebral ataxia’s (SCA Type 1 to 19) and the other common identified is Friedreichs ataxia.

Scenario in India, Ataxians / Patients perspective :     Due to Lack of Patient care / Information / Effective management / Counseling,  Many Ataxia Patients suffer silently.

Questions from  Ataxians to medical community :

Ø  Are there any New medical Trial treatments available here in india for ataxians?

Ø  A chennai based pharmaceutical company by name ORCHID PHARMA is taking up research studies on Friedreichs ataxia(FA) similarly Are there any Research studies being carried out here in India by any Medical Institute ya Pharmaceutical  company to cure ataxia’s?

Ø  A new Trial medicine for treating Friedreich’s ataxia (Clinical Phase Trial-2) is underway in Europe and USA but not yet available in India, as the concerned California, US based pharmaceutical company Has asked us to approach through a process by Respective  medical  Institute/doctors /pharmacy companies based here in India and then this clinical Trial phase-2 medicines will become available here for Indian ataxians,       The name of the drug is HDAC Inhibitors, the name of the drug is RG2833 and the pharmaceutical company name is REPLIGEN.

Ø  Lastly an sincere appeal by SAMAG(An Indian Ataxia Patient Support group) request  on behalf of Indian ataxians, we appeal to respected Medical community/Institutes and Pharmaceutical companies to encourage and prefer research studies to be carried out here in India in curing ataxia’s a which are a rare set of neuro muscular degenerative disorders  so we can be recruited in this studies and get benefited.

Best wishes,

SAMAG.

www.ataxia.in

wishing all happy IAAD 2013

 

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