Daily Living

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.

PATRONS

Rare diseases Magazine UK
Eurodis , Paris France
Cambridge rare diseases network UK
Genetic Alliance UK
SAC 3 – Spino Cerebellar Ataxia
Find A Cure UK
Ataxia UK
National Ataxia Foundation – USA
EuroAtaxia / UK and Europe
FARA USA / FEDES Spain Europe

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 !

Read More

Ataxia – a tale of survival and hope

A Member of the Solution Project

“The doctors stood around my bed as they gave their diagnosis of the neurological tests. They were all unanimous in their decision. They all said I would need to give up my singing contracts and start to retrain for a new profession. But what that should be, they didn’t say. This was a scary pivotal moment in my life. “

A Member of the Solution Project