ATAXIA AWARENESS DAY 2013 ON SEPTEMBER 25TH

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ATAXIA AWARENESS CHARITABLE TRUST ®

                               Registration No:E-5748

Office address: Kate Residency, Flat no 116 A, A wing, 4th floor, S.T Road, Dapodi, Pune .41101212

 Maharashtra. INDIA. Contact – 020 27143184; +91 9730895840

Dear Sir/Madam

It is with great humility and happiness that we announce the establishment of Pune’s first support group for Ataxia. Registered under the Charity Commissioner on 9th of September 2011 the Ataxia Awareness Charitable Trust (AACT) aims to promote awareness about Ataxia and to promote and encourage the support and participation of benevolent citizens towards the improvement of the life of Ataxians.

Ataxia is a progressive condition that causes loss of coordination of body parts and mal-functioning of motor nerves. The main cause of Ataxia is mal-functioning of the Cerebellum. As of now, this condition has no known cure and patients, due to loss of mobility, are compelled to remain confined to their homes. In our country there is also stigma attached to the condition due to the genetic nature of some forms of the disease.

To help Ataxia sufferers, the AACT will focus on:

  • Help and assistance to poor ataxia students for education by way of cash or in kind
  • Scholarships as well as loan scholarships to deserving Ataxia students
  • Distribute prizes to deserving, outstanding and meritorious Ataxia students
  • Spreading awareness about Ataxia disorders and to provide information and counseling in coping to live with Ataxia to sufferers, their family members as well as medical community and general people and to create a forum for Ataxians
  • Organize meetings and seminars to generate knowledge on Ataxia disorders and also to share information about medical, educational grants and other benefits to which they are entitled
  • Helping needy AACT members in obtaining support like wheel chairs, walkers, medicines, etc., according to our financial resources and gather volunteers to help our cause
    To help AACT fulfill its objectives we request you to contribute generously to the organization. Help one Ataxian live his life with dignity and with a hope for tomorrow.

    NOTE :  CROSSED CHEQUES or (RTGS/NEFT)  CAN BE DRAWN IN FAVOUR OF ATAXIA AWARENESS CHARITABLE TRUST

NAME OF BANK – CORPORATION BANK
A/C NO – 212200101006693 IFSC CODE – CORP0002122 SWIFT CODE – CORPINBB

Visit us at our blog : https://puneataxiasupport.wordpress.com/

              Thanking You

                                                                                                         Sincerely,

                                                                                                  K Hanumantha Rao

                                                                                          Managing Trustee for -AACT

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ATAXIA SUPPORT GROUP now in PAKISTAN

dear ataxian’s hello every 1 we r very glad n proud to inform being inspired with indians ataxia groups  AACT( ataxia awareness charitable trust)  & SAMAG (seek a miracle ataxia group) now pakistan too have started providing support & care,sharing views dealing with how to tackle with ataxia few guys & gals  suffering from different types of ataxia are giving help to others by conducting Ataxia awareness camps in various cities of pakistan also they have started small  elementary or montessory  school for kids & children who r facing all types of neurological disorders so now many kids having ataxia can educate them selfs with help of BINADAMFOUNDATION www.binadam.net

bin adam

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plz donate your eyes to enable blind c our world

dear friends , we should certainly or definitely donate eyes to the blind b coz we can enable someone see dis beautiful world it’s human right or obligation to help d blind community even we disabled can donate eyes & organs after us  or any human life he owes a lot 2 d society so friends it’s an appeal from bottom of our heart dat our eyes / organs should be passed on to d eye bank.my brother guruprasad is ready 2 donate his eyes who is a ataxia patient.

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gr8 awesome response for blood donation gud event hosted by ataxians

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AACT could organize ataxia awareness camp via blood donation only bcoz of                                    LEO SURFACE COATINGS pvt ltd hats off to entire staff of lsc right frm all the owners , managers every employee in all dptmnts helped ataxians frm start to end even the boys liftmen understood us & helped us in even bathrooms pushing chairs and most important entire team gave their valuable blood also they heard what is ataxia  undrstood d need & sponsored the event providing snacks tea coffe juices to every member of AACT  all the guys & gals were extremly co-oprative so only we could think of conducting the blood donation camp which was only possible b coz ritu goyal mam & rajesh nair sir spared their working day hours 4 our ngo finally due 2 courtesy of leo surface coatings pvt ltd & shayadri blood bank we could host an splendid show today of course mainly due 2 our coordinators ritu goyal & rajesh nair without their selfless voluntary service aact cant manage or think of any event, by god’s grace 42 blood donors did come frm offices and gave their valuable time/blood for an noble cause of ataxia awareness we all 4 ataxians r really excited & happy our target got accomplished even sanjay/ vilas joined us all were smiling during full event bcoz ataxia cannot defeat us our dis never say die attitude & gud spirit of fight against life made everyone happy

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BLOOD DONATION CAMP FOR ATAXIA AWARENESS

@ M/S. LEO SURFACE COATINGS PVT. PTD., # 301 & 317, “VINAYAK ARCADE” OPP. BAJAJ AUTO LTD., AKURDI, MUMBAI-PUNE ROAD, PUNE – 411035.

DEAR readers netizens pune ataxia group as we promised we r arranging 2nd event of our NGO – AACT ( blood donation camp) at LEO SURFACE COATINGS pimpri – pune  on 30th October frm 10 am to 1 pm  .finally a gud company understood our views & r giving us a chance to hold an awareness camp in their premises thankx 2 them the team mngmnt our volunteers ritu goyal & rajesh nair & mainly blood bank & all d doctors who r helping us to organise such a big herculean task b coz gud learned people corporates & gud hearted team members , supporting our ngo , so we r very happy that still now humanity prevails @ pune, so plz dear friends rltvs society every one do cum and donate ur blood its gud for you only when we ataxians can give blood without fear all can give without any harm as d blood banks r very well known & trustworthy so dont hesitate 4 safety do cum in large numbers and support us which was my dream 2 organise a blood donation camp during school & college days , inspite of disability we both brothers have donated blood quite often for gud causes now its ur turn 4 society to donate blood & be cum part of ataxia awareness drive at leo surface coatings on 30th oct frm 10am to 1 pm address of venue is M/S. LEO SURFACE COATINGS PVT. PTD., # 301 & 317, “VINAYAK ARCADE” OPP. BAJAJ AUTO LTD., AKURDI, MUMBAI-PUNE ROAD, PUNE – 411035. blood is life so plz share help to help yourself u may be beniffetd of free blood when u need in future during emergency so its like invsmnt of blooad for own sake or genral public any one can get the benifts during the hour of need

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ataxians need oppurtunity & not symphthay

hello pune & all net users as u all know raising awareness about ataxia is d main goal of AACT  ataxia awareness charitable trust so we ataxians frm pune are planning or willing to try & organise an blood donation camp for which we all r trying very hard but few society members of dapodi nearby our colony kate residency r unwilling to give permissions of helping us start dis noble event blood is life when we can donate blood inspite of our rare nuero disorder why cant all humans be positive & help each others all we need is bit of support b coz managing everything on wheel chairs is not easy but we still fight out ataxia we feel ATAXIA CAN NOT DEFEAT US , so why do society public mock at diabled people & cause aggrevating their pains instead of easing out & lending their helping hands by any means if you cant help atleast dont create hurdles for few stupid orthodox pyschology grow up guys we r in 21st century which may soon end due 2 global warming or any other reasons

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aact pune celebrates iaad 2012

Sorry i am 5 days late…….. On 25th Sept’ 2012 we Celebrated International Ataxia Awarness Day at home on low profile by ATAXIA AWARNESS CHARITABLE TRUST, Low Profile because v invited all ataxia’s but nobody can make it due to in-mobility problem expect we both. Movements is the main problem for the ataxians patients. After 25th i fall down and twisted my leg that’s why i m late in this blog. Only Ritu Goyal Madam and Mr.Rajesh Nair Uncle turned up and v all had a delicious cake cut by Vivek & Guruprasad which was brought  by Ritu madam…… they have suggested to orangise Blood Donation Camp for the Noble Cause on the Name of Trust, which we all trustee felt good and decided to conduct in our society premises only but the secretary of club house in our society rejected the offer for organising the camp because of silly reason’s bcoz the commitee is very narrow minded and non supportive. We all are disappointed by the decision of Managing Commitee – Kate Residency Society.

But we will try hard and arrange the Blood Donation Camp.

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Ataxia Awareness Charitable Trust established in Pune

“It wasn’t easy – it never is – to climb up a hill when your energy is depleted and your stock of hope and enthusiasm at its lowest. But no mountain is high enough if we remain focussed and committed to scaling its peak.
We have managed to do just that. We finally managed to register our charitable trust, a non-governmental organisation called the Ataxia Awareness Charitable Trust (AACT) in Pune recently. All due to the efforts, focus, commitment and diligence of our ageing father who egged on despite the hurdles….today we can proudly announce the establishment of this organisation.
Through AACT we want to reach out to as many Ataxia patients as we can and spread awareness, garner support and spread cheer….
Please wish us luck and God speed.”
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exercises for ataxia

Chris’s Exercise suggestions

STRAIGHT LEG RAISES

Sitting on the floor leaning back against the wall and your hands on the floor either side of you, Raise
your right foot 6″ off the floor keeping your legs as straight as possible. Slowly and gently lower back to
the floor. Repeat with left foot.

Lay down on your right side with your right leg bent at the knee and your left leg straight. Raise your left
leg as high as it will go, keeping it straight. Slowly and gently lower back to the floor. Repeat laying on
your left side with your right leg being raised.

Lay face down in the begin push up position. Raise your right foot 6″ off the floor keeping your legs as
straight as possible. Slowly and gently lower back to the floor. Repeat with left foot.

To begin with, you should do no more than what you can without pain!! Try to work up to 20 repeats of
each exercise for each leg.

CALF STRETCH

Holding on to the back of a chair or a wallbar for support, standing upright with the balls of your feet on
a block of wood or something sturdy 2 – 4 inches high, lower your heels to the ground, streching your
calf muscles and achilies tendons. Contracting your calf muscles, raise up on to your tip toes. Try to
remain upright the whole time as the tendancy will be to stick your bum out and lean forward.

Many people with FA are well advised to begin and maintain this one as soon as possible after diagnosis.
As many cases of FA progress, there is a tendancy to have toes pointing all the time as musle and
tendons on the back of the legs contract. Just 5 minutes a day doing this will perhaps eliminate, but
definitely delay the need for corrective surgery later on. When I first started with this one,my physio
would massasge my calfs and ankles between sets of 10.

LOW TO HIGH KNEELING

If you can, kneel down, siting on your feet with your upper body upright. You may need to hold onto
something in front of you to keep your ballance (I use a wall bar) Slowly raise to a kneeling -up position
bringing your pelvis forward into a locked upright position (DO NOT PULL YOURSELF UP WITH YOUR
ARMS – THEY ARE FOR BALLANCE ONLY!) slowly lower back to a kneeling down position. As you improve
with this one you can :-

1 Try to let go with your hands (If they were needed to begin with)

2 Try it with your hands on your head (raising your C of G)

3 Try it holding weights. ( I wear a small rucksack with sandbags in)

4 When you lower, try it to the left and to the right alternately

BRIDGING

Lay on your back with your knees up and your feet flat on the floor. Your toes should be up against a
wall or something solid. Your feet should be 9″ apart, your hands palm down flat on the floor on either
side of your body.

1 Pull your tummy in as flat as you can

2 Clench your buttocks, and by tilting your pelvic floor, raise your bum (6″ will do) as your knees move
toward the wall.

3 Hold for 10 secs

4 SLOWLY lower keeping your tummy pulled flat

5 Repeat.

MORE LEG WORK

Standing with your back against a wall or solid door with your feet about 12″ from the wall, bend at the
knee so your back slides down the wall. If you can go down till your thighs are parallel with the floor do
so, if not, just go down as far as you can comfortably. Then back up again. Do it slowly, and if you can
hold in the lower position for 10 secs or so then do that too.

I do fully realise that these exercises are not possible for everyone, but there are some exercises
EVERYONE can and should do. Keeping in good shape for as long as possible is so important, especially
now as some form of FA therapy is no longer considered a fantasy.

I will gladly advise on specific cases if I know your limitations, you can post to Internaf or contact me
privately.

Frenkel’s Exercises for Ataxic Conditions

These exercises prepared by Curative Services — Courage Center

This program consists of a planned series of exercises designed to help you compensate for the inability
to tell where your arms and legs are in space without looking.

The exercise routine takes about 1/2 hour and should be done 2 times daily.

1. Exercises are designed primarily for coordination; they are not intended for strengthening.

2. Commands should be given in an even, slow voice; the exercises should be done to counting.

3. It is important that the area is well lit and that you are positioned so that you can watch the
movement of your legs.

4. Avoid fatigue. Perform each exercise not more than four times. Rest between each exercise.

5. Exercises should be done within normal range of motion to avoid over-stretching of muscles.

6. The first simple exercise should be adequately performed before progressing to more difficult
patterns.

Exercises While Lying:

Starting position: Lie on bed or couch with a smooth surface along which the feet may be moved easily.
Your head should be raised on a pillow so that you can watch every movement.

1. Bend one leg at the hip and knee sliding your heel along the bed. Straighten the hip and knee to
return to the starting position. Repeat with the other leg.

2. Bend one leg at the hip and knee as in #1. Then slide your leg out to the side leaving your heel on the
bed. Slide your leg back to the center and straighten your hip and knee to return to the starting position.
Repeat with the other leg.

3. Bend one leg at the hip and knee with the heel raised from the bed. Straighten your leg to return to
the starting position. Repeat with the other leg.

4. Bend and straighten one leg at the hip and knee sliding your heel along the bed stopping at any point
of command. Repeat with the other leg.

5. Bend the hip and knee of one leg and place the heel on the opposite knee. Then slide your heel down
the shin to the ankle and back up to the knee. Return to starting position and repeat with the other leg.

6. Bend both hips and knees sliding heels on the bed keeping your ankles together. Straighten both legs
to return to starting position.

7. Bend one leg at the hip and knee while straightening the other in a bicycling motion.

Exercises While Sitting:

Starting position: Sit on a chair with feet flat on the floor.

1. Mark tine, raising just the heel. Then progress to alternately lifting the entire foot and placing the foot
firmly on the floor upon a traced foot print.

2. Make two cross marks on the floor with chalk. Alternately glide the foot over the marked cross:
forward, backward, left and right.

3. Learn to rise from the chair and sit again to a counted cadence. At one, bend knees and draw feet
under the chair; at two, bend trunk forward; at three, rise by straightening the hips and knees and then
the trunk. Reverse the process to sit down.

Exercises While Standing:

Starting position: Stand erect with feet 4 to 6 inches apart.

1. Walk sideways beginning with half steps to the right. Perform this exercise in a counted cadence: At
one, shift the weight to the left foot; at two, place the right foot 12 inches to the right; at three, shift the
weight to the right foot; at four, bring the left foot over to the right foot. Repeat exercise with half steps
to the left. The size of the step taken to right or left my be varied.

2. Walk forward between two parallel lines 14 inches apart placing the right foot just inside the right line
and the left foot just inside the left line. Emphasize correct placement. Rest after 10 steps.

3. Walk forward placing each foot on a footprint traced on the floor. Footprints should be parallel and 2
inches from a center line. Practice with quarter steps, half steps, three-quarter steps and full steps.

4. Turn to the right. At one, raise the right toe and rotate the right foot outward, pivoting on the heel; at
two, raise the left heel and pivot the left leg inward on the toes; at three, completing the full turn, and
then repeat to the left.

5. Walk up and down the stairs one step at a time. Place the right foot on one step and bring the left up
beside it. Later practice walking up the stairs placing one foot on each step. At first use the railing, then
as balance improves dispense with the railing.

Upper Extremity Exercises:

When the arms are affected use a blackboard and chalk. Change a minus sign to a plus sign; copy simple
diagrams (straight lines, circles, zig-zag lines, etc.) Various coordination boards may be used to improve
eye-hand coordination.

Julia Dube’s Yoga suggestions

Hi there! “Richard Hittleman’s yoga 28 day exercise plan” is a wonderful instruction book with pictures
and explanations. Many of the other books are too advanced and will scare you off. You will have to
build up to some of the basic foundation positions. I note the half lotus positions left leg on top of
crossed legs then switch and sit with right leg on top of your calf, make sure your back is completely
straight while holding these positions.

There are hand movements and deep breathing that will need to go along with these positions, Always
note for every single Yoga position EMPHASIZE KEEPING YOUR SPINE STRAIGHT AND BREATH DEEPLY.
Then another and more miraculous feeling position is to sit with your legs under you. Your butt will
be sitting on the heels of your feet. This one is EXTREMELY painful when I sit with straight spine but it
wakes up your legs and improves the circulation in them like nothing else! See when you constrict the
blood flow like these positions do the blood vessels open and rush blood through with multiple force
when you release the position. After weeks of repetition, this will strengthen your vessels and blood
flow.

Two other tricks I do in bed help. Lay on your stomach then sit up on your elbows while your belly is on
the bed. Keep your knees and your feet together, heels and big toes touching. This arches your back in
the proper direction and generates proper conduction of the nerves in your spinal cord. I can notice
when I don’t do this I fall onto the toilet when I get up and go potty. When I do this arch for twenty
minutes before I get up I can smoothly control my conversion to the toilet seat.

The other trick I do is. Sit with legs in front and grab my feet from the outer edge and pull them straight
(ATAXIA CURVES THEM INWARD) Note – keep your legs straight. This should hurt but hold it at least ten
seconds even in dire pain. You need to stretch those tendons.

You need pictures. 45 minutes a day of these basics will show results that blow your mind!!

5. Exercises should be done within normal range of motion to avoid over-stretching of muscles.

6. The first simple exercise should be adequately performed before progressing to more difficult
patterns.

Exercises While Lying:

Starting position: Lie on bed or couch with a smooth surface along which the feet may be moved easily.
Your head should be raised on a pillow so that you can watch every movement.

1. Bend one leg at the hip and knee sliding your heel along the bed. Straighten the hip and knee to
return to the starting position. Repeat with the other leg.

2. Bend one leg at the hip and knee as in #1. Then slide your leg out to the side leaving your heel on the
bed. Slide your leg back to the center and straighten your hip and knee to return to the starting position.
Repeat with the other leg.

3. Bend one leg at the hip and knee with the heel raised from the bed. Straighten your leg to return to
the starting position. Repeat with the other leg.

4. Bend and straighten one leg at the hip and knee sliding your heel along the bed stopping at any point
of command. Repeat with the other leg.

5. Bend the hip and knee of one leg and place the heel on the opposite knee. Then slide your heel down
the shin to the ankle and back up to the knee. Return to starting position and repeat with the other leg.

6. Bend both hips and knees sliding heels on the bed keeping your ankles together. Straighten both legs
to return to starting position.

7. Bend one leg at the hip and knee while straightening the other in a bicycling motion.

Exercises While Sitting:

Starting position: Sit on a chair with feet flat on the floor.

1. Mark tine, raising just the heel. Then progress to alternately lifting the entire foot and placing the foot
firmly on the floor upon a traced foot print.

2. Make two cross marks on the floor with chalk. Alternately glide the foot over the marked cross:
forward, backward, left and right.

3. Learn to rise from the chair and sit again to a counted cadence. At one, bend knees and draw feet
under the chair; at two, bend trunk forward; at three, rise by straightening the hips and knees and then
the trunk. Reverse the process to sit down.

Exercises While Standing:

Starting position: Stand erect with feet 4 to 6 inches apart.

1. Walk sideways beginning with half steps to the right. Perform this exercise in a counted cadence: At
one, shift the weight to the left foot; at two, place the right foot 12 inches to the right; at three, shift the
weight to the right foot; at four, bring the left foot over to the right foot. Repeat exercise with half steps
to the left. The size of the step taken to right or left my be varied.

2. Walk forward between two parallel lines 14 inches apart placing the right foot just inside the right line
and the left foot just inside the left line. Emphasize correct placement. Rest after 10 steps.

3. Walk forward placing each foot on a footprint traced on the floor. Footprints should be parallel and 2
inches from a center line. Practice with quarter steps, half steps, three-quarter steps and full steps.

4. Turn to the right. At one, raise the right toe and rotate the right foot outward, pivoting on the heel; at
two, raise the left heel and pivot the left leg inward on the toes; at three, completing the full turn, and
then repeat to the left.

5. Walk up and down the stairs one step at a time. Place the right foot on one step and bring the left up
beside it. Later practice walking up the stairs placing one foot on each step. At first use the railing, then
as balance improves dispense with the railing.

Upper Extremity Exercises:

When the arms are affected use a blackboard and chalk. Change a minus sign to a plus sign; copy simple
diagrams (straight lines, circles, zig-zag lines, etc.) Various coordination boards may be used to improve
eye-hand coordination.

Julia Dube’s Yoga suggestions

Hi there! “Richard Hittleman’s yoga 28 day exercise plan” is a wonderful instruction book with pictures
and explanations. Many of the other books are too advanced and will scare you off. You will have to
build up to some of the basic foundation positions. I note the half lotus positions left leg on top of
crossed legs then switch and sit with right leg on top of your calf, make sure your back is completely
straight while holding these positions.

There are hand movements and deep breathing that will need to go along with these positions, Always
note for every single Yoga position EMPHASIZE KEEPING YOUR SPINE STRAIGHT AND BREATH DEEPLY.
Then another and more miraculous feeling position is to sit with your legs under you. Your butt will
be sitting on the heels of your feet. This one is EXTREMELY painful when I sit with straight spine but it
wakes up your legs and improves the circulation in them like nothing else! See when you constrict the
blood flow like these positions do the blood vessels open and rush blood through with multiple force
when you release the position. After weeks of repetition, this will strengthen your vessels and blood
flow.

Two other tricks I do in bed help. Lay on your stomach then sit up on your elbows while your belly is on
the bed. Keep your knees and your feet together, heels and big toes touching. This arches your back in
the proper direction and generates proper conduction of the nerves in your spinal cord. I can notice
when I don’t do this I fall onto the toilet when I get up and go potty. When I do this arch for twenty
minutes before I get up I can smoothly control my conversion to the toilet seat.

The other trick I do is. Sit with legs in front and grab my feet from the outer edge and pull them straight
(ATAXIA CURVES THEM INWARD) Note – keep your legs straight. This should hurt but hold it at least ten
seconds even in dire pain. You need to stretch those tendons.

You need pictures. 45 minutes a day of these basics will show results that blow your mind!!

Posted in Guru, Hope, Support Group, Vivek | Leave a comment

ATAXIA MEDICAL CONFERENCE

Dear friend, this is here to inform you that we, on behalf of all ataxians are trying to arrange a medical conference on ataxia, in which all the Indian doctors who are researching on ataxia will be called forth to participate. We want all of you to co-operate with us and do your share in organising this conference, which will benefit us if we succeeded. All we want from u is to collect and make a list of doctors who are researching on ataxia. To be more precise consider the following table:

Name of doctor
Place
Hospital
Phone no./email address

We want this information as soon as possible so that we can carry out further. We request you to please forward this message to your fellow friends and ataxians who can help us regarding this issue. You can mail this information to swastiwagh@gmail.com or gauri0g@gmail.com
We will be highly obliged with this gesture of yours,
Thank you,
Swasti and garima

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