Resources for Living with Ataxia

Traveling with Ataxia:
Ablethrive

Lifestyle site for people with disabilities blends in-depth destination reviews and community-sourced travel recommendations.

Handiscover

This is one of the most thorough sites for accessible accommodations, this booking engine has more than 23,000 listings in 50 countries. Users can narrow results by mobility level, plus variables like city size, price and number of guests.

Accessiblego

A one-stop shop for travelers with disabilities who are looking to book hotels, cruises, transportation and more.

Planet Abled Podcast

This podcast spotlights the travel company, Planet Abled.

Exercise:
National Ataxia Foundation

This can serve as a tool to help design home exercise programs

Lisa Kanne of Karma Yoga

In the Omaha area, there are resources available for private yoga instruction.  is very versed in ataxia and how to incorporate yoga poses to your level of ability.

Wheelchair Yoga for Beginners 

Yoga can be useful for helping balance. Yoga can be done with a chair or even in a wheelchair.

Speech Therapy:

A speech and language therapist will be able to help with the two most common symptoms of ataxia – slurred speech and swallowing problems. The therapist will be able to advise you about how to make your voice sound clearer. Your clinician can refer you to a speech therapist at your local hospital.

There are resources online to help with difficulty swallowing and speaking

Tongue Exercises for Dysphagia Therapy
Tongue Exercises for Speech and Swallowing
Voice Acting and Enunciation Exercises 
Assistive Technology:

Durable medical equipment is equipment that helps you complete your daily activities. It includes a variety of items, such as walkers, wheelchairs, lift chairs, grab bars or wheelchair ramps.

There are many companies that will sell durable medical equipment  (DME) and at times DME is covered by insurance.

Nebraska Ataxia has a partnership with Mobilis Home Health & Wellness Store. They are familiar with ataxia and can assist you in choosing equipment helpful to you. In addition, they help with insurance coverage.

Mobilis Home Medical Equipment

Universal Design is designing an environment so that it can be accessed and used to the greatest extent possible by all people regardless of their age, size, ability or disability. Meaghan Walls at Assistology Omaha can provide consultation services to help i individuals reach their goals by incorporating inclusive spaces, services, products and practices.

Assistology of Omaha 
Daily Living Aids:

Any piece of equipment used to help an individual accomplish everyday tasks to improve their quality of life. Devices are available to assist with dressing, grooming, bathing, cooking, toileting and eating. There are many companies and catalogs that carry such devices. This list is only a small portion of what is available.

RehabMart- Tools for the Job of Living
Adaptive Specialties
Enabling Devices
Model Talker:

ModelTalker is a speech synthese software package designed to benefit people who are losing or who have already lost their ability to speak. It allows people who use a Speech Generating Device (SGD) to communicate with a unique personal synthetic voice that is representative of their own voice. If your voice is still strong you can also record your own voice for use in the future with a speech generating device.

Model Talker
Weighted Vest:

BalanceWear is a non-invasive, wearable balance-stabilizing garment for individuals with balance and mobility issues. A certified, trained physical therapist needs to complete an assessment first to identify people the BalanceWear would benefit. They are also custom made and fit. Not all brands are created equal either. Based on research and experience, we recommend Motion Therapeutics. At this time, the only certified physical therapists in the Omaha area are at Methodist Hospital. In Columbus, Nebraska Pam Perault at Premier Physical Therapy.

 Balance Wear – Motion Therapeutics, Inc.
Columbus Community Hospital- Rehab Services 
Physical, Occupational & Speech Therapy at Methodist Hospital
Adaptive Sports – Outdoors:

Many with ataxia give up hobbies and activities they loved because they are unaware of the adaptive adventure travel or sporting equipment that is available. If there is a hobby or outdoor activity you enjoy please research the available means to accomplish these.

Wilderness Inquiry 

This company offers adventures around the world for all ages, backgrounds and abilities to enjoy hiking, canoeing, camping, rock climbing and more. They are well versed in offering these activities while in a wheelchair.

Adaptive Outdoorsman 

Adaptive Outdoorsman is a website dedicated to offering outdoor equipment designed for hunting, fishing and camping

Genetic Testing:

Genetic testing is available for many hereditary types of ataxia. Genetic testing can play an important role in determining options that are available for you. Some research opportunities and clinical trials might require a confirmed diagnosis of ataxia to participate. Please consult with your physician to see if genetic testing is right for you.

Companies that offer genetic tests for ataxia can be researched on the National Ataxia Foundation page

Ataxia Genetic Test Options
CoRDS Registry:

Based at Sanford Research, Coordination of Rare Diseases at Sanford is a nonprofit research institution that functions as a centralized international patient registry for all rare diseases.  They coordinate the advancement of research by working with advocacy groups, individuals and researchers. They capture health information from individuals with a rare diagnosis, undiagnosed patients and unaffected carriers or at-risk patients. They connect researchers and patients and notify participants of emerging clinical trials. Participants enroll for free and researchers can access it for free.

Coordination of Rare Diseases at Sanford (CoRDS)

 

Clinical Research and Trials:

Participating in a clinical trial is one way to take an active role in furthering understanding and treatment of Ataxia. It is also a way to get access to new treatment options before they are widely available. However, participating in a clinical trial is a deeply personal choice to make. Look into risks and benefits of each trial before enrolling. The following link is a great resource for finding research studies that are looking for volunteer participants.

Ataxia Patient Registry 

 

Brain Tissue Donation:

Scientists use donated brain tissue after death to better understand ataxia. It can be very satisfying to know that you played a vital role in advancing research and that your gift can make the difference and lead to the next scientific breakthrough. If brain tissue donation interests you please refer to this link for additional information.

Brain Tissue Donation for Ataxia Research