Many organizations and federation’s contribute to the advancement of our awareness, events and information with a mutual desire to find a cure for our diseases and ways to cope with the affects of their disease with daily Tips for Coping.

Baby Monitors

Baby Monitors really work! No fumbling or tinkering necessary ! Just scream if you need help !

Virtual Reality Rehabilitation

There are ways that people can get rehabilitated in the world of Ataxia and Spinocerebellar in a fun non isolation environment. It might be that using esports and virtual reality games can lend a hand at improving balance, mobility, motor skills and more. People can help themselves!

Aids for people with Ataxia

The Ataxia Foundation Ireland (AFI), is a Voluntary National Support Group for people affected by Friedreich’s Ataxia (The most common Genetic Ataxia).

Our aim …

Ataxia Diet – Eliminate ALL red meat!

SCA all types

add Magnesium to your diet. It will help your muscles cramps !
Eliminate milk products and use only Greek yogurt !

Keep as positive as possible!

Ataxia diet

Ataxia Healing

Disability Equipment & Aids for Independent Living at Home | REMAP

This is a UK disability company. Even disability due to Ataxia can find a solution for Your problem regarding disability – for anything!

Compression legwear for Ataxia

Compression legwear for ataxia can help people who are sedentary, have diabetes and nighttime leg cramps. Beside adding magnesium to your vitamin supplements, it is known that cramping can be a nasty side effect of an Ataxia lifestyle. Doctors can address the problem with a variety of medications.

Treating Ataxia disability fairly!

In the USA and most other countries in the world have a disability act written into law. Ataxia has the same rights as any other disability regarding mobility and fine motor skills. Most countries provide easy accessibility entrance to their venues and to the public toilets.

Some companies, like cruises, provide access to any part of their ships for people who have a wheelchair or mobility scooter. They bend over backwards to help the disabled . Airports, restaurants, and hotels all have disability accessibility for Ataxia mobility disabilities. Zoos, theaters and sporting facilities have handicapped access and disabled toilets in their venues.

If a venue is not equipped with disabled needs, they usually say they are unable to provide adequate services. Take their advice before trying to get satisfaction and ask them for assistance or another venue. Keep a medical note about your condition on you and present it along with your disability need !

If you can’t get proper access to a facility, you can report it and request proper treatment of the disabled needs. The local authority is responsible for providing a disabled need. By LAW !

Tips for living with Ataxia

Have a positive attitude!

So much of our time is focused as a victim of a terrible neurological disease like Ataxia and the incurable position it has put ourselves and our families in, who care for us. This needs to be managed. We all have to deal with the situation and the depression it brings upon us all. Don’t let ATAXIA define you !

But we are not the only ones befallen such a miserable fate. There can always be someone out there who is dealing with a worse situation than our own right now! In the meantime until a cure is found and the progression of the disease challenges us, we can add a positive attitude to our daily lives. Research and technology have made wonderful progress , the last 10 years, on finding a solution to many daily issues surrounding Ataxia management.

Depression and hopelessness can be managed! Put yourself in a social media bubble of positive things you read and do. Don’t let your communication devices control you! Some suggestions are to find a cause to put your energies in to. Start a fundraising page or event for Ataxia and research. Produce An Ataxia Challenge! Start an online POSITIVE ATAXIA CHAT with others or write things down for others to read . Start to put an uplifting spin on yourself. Tell inspiring stories on your own website and put positive people around you ! It can’t be doom and gloom all of the time!

Be a source for positive change! Resist a depressing influence on yourself and others around you. Join the wheelchair army and conquer this tendency to become negative !

Your ATTITUDE can make your daily life more bearable and more doable for others around you. Eliminate isolation and live every day with a positive attitude towards Ataxia.

The wider Ataxia and rare disease community are supporters of our Ataxia efforts on behalf of the Ataxia Care Project and Ataxia research. They are all tirelessly putting the spotlight on Ataxia and making the world aware just how rare this disease is . We are all raising awareness about Ataxia and looking for a cure.

Ataxia Care Project has supporters all over the world and targets the 1.7 million people living with Ataxia.

Ataxia Tips for Daily Living  –  Exercise – use it or loose it !

Diabetes – medications, insulin checks, only 0% sugar products
* Avoid using Metoforim diabetes pills. ( diarrhea side affects )

Obesity – nutrition / 0 carbohydrates / vitamin E supplement / fitness / exercise of any kind . * Use a sitting foot pedal rotation device. YouTube exercises for disability!

Wound care – nivea and sudo creams , open wounds covered – ( avoid scratching )

Foot & Leg care – Dry & Clean is our motto . * Use only your towels

Clothing- loosely fitted clothes with rubber bands  comfortable shoes / orthopedic  socks.      No buttons, zippers, belts or clasps

Chocking / Swallowing- use a towel or bibs ( to protect clothing ) / use straws

Urinating – stay away from carbonate or fizzy drinks . ( try orthopedic socks ).

A Japanese study has determined that orthopedic socks can relieve water retention in your lower leg caves.

25 years Ataxia diet – UCLA Dr Perlman Neurology Department ( YouTube webinar )

Ataxia associated with glucose or vitamin E deficiency should be monitored by a nutritional specialist or your Neurologist

Ataxia and Bladder Control?

Try as we may , Ataxia affects our muscles. Our bladder and the ability to stay dry and not having to change out of wet pants is severely affected. There might just be an answer to the problem!

A CATHETER!

But it must be a silicon catheter. We are not going to change the situation. So we can work around the disease ! Ask a Urologist to work with your neurologist. It’s just another aid we need to cope with the Ataxia.

Living with Ataxia during the Pandemic

We have all been living and coping with the variants of Covid, vaccines, booster shots etc. for nearly a year. We people living with Ataxia have deeper issues associated with the virus. Things like mental health issues, isolation and immune compromised bodies are all issues that affect the Ataxia community. For most people who have Ataxia the degree of mobility and age factors make the severity of the virus situation that more fragile.

But with it all we have to keep a positive attitude. Give it time and even our Ataxian lives will get back to a sense of normalcy. Things you can do to lessen the chance of going to the hospital ICU are the following :

Wear your mask
Distance yourself from other people
Avoid crowded gatherings
Boost your immune system with a healthy diet

Keep busy – Read, listen to music, watch t.v. and exercise ( if you can ), enjoy your hobbies! Look at the National Ataxia Foundation suggestions for living with Ataxia during the Covid pandemic. We have given you a link !