The Caretaker

In the battle to cope with the situation, a caretaker is someone who will really need to be by your side. In the later stages of the disease , the progressive nature of this disease makes you dependent upon helpers. A caretaker does all the things that you find are slipping away from you !

Here are just some of the things a caretaker winds up doing:

  • Housekeeping / cleaning
  • Shopping / cooking
  • Bathing /. Bed making
  • Medication administration
  • Driving to doctors / pharmacies
  • Telephone calls / all written correspondence
  • Urinating / bowel movement ( toilet mobility control)
  • Mobility aids control

The engagement of the caretaker in a progressive ataxia situation is often underestimated. For an update of your present caretaker needs it might be necessary to see your primary physician and neurologist to assess your situation. This assessment could lead to care and a disability financial adjustment.

Respect and be kind to your caretaker. They are your last defense against Ataxia !

National Family Caregivers Month

I’m still standing!

Many ( 70 ) years of progression and advancement in the research area of my Ataxia have given me the chance to enjoy my life in spite of the difficulties associated with its disabilities. My balance, speech and bathroom functions have all progressed negatively for the 40 years- but I’m still standing!

Many people , life goals and organizations have contributed to my story. Mostly in a positive way. But the person who has supported me and contributed the most to my motto of “ keep going “ is my caregiver and partner- Barbara !

I’m still standing !

Ataxia Information

Ataxia Information


Blog – Story

A Cure?

A Cure?

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