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 !

Solutions for elderly care

The Solution Project is a tax registered project that works only with companies who are registered legally in the Care industry. We focus on the English speaking communities on the coast of eastern Spain – based on the LOTTI system in the UK .

You can turn to us in the later stages of life !

Assisted Elderly Living Services

• Elderly Care Residences
• Home Care Nursing
• Care charities
• Respite Care
• Palliative Care
• Dementia Care homes
• Benefits Counselling Services
• Legal and Probate Services

About INPCS | International Neuropalliative Care Society

Caring for ataxia 2025

Caregivers,  incontinence ,  sustainability

A caregiver, especially if they are family members, go through many areas of care particularly if the person in need of care requires 7/24 caring. There are many products available now being offered in the health-care sector.

The carer has a conscience choice when it comes to providing the best care. But is the product of sustainability and biodegradable quality? Form your own campaign. Both the caregivers and the needy have a “ planet saving “ decision they can make. A sort of living legacy !

People might be frail and sick but real choices can be made along with your caregiver!

Bladder & Bowel UK support bladder and bowel health for adults, for children, and for professionals.

A caregiver that truly understands!

She gave up everything selfishly, to tend to my needs. Being a ballerina, she understood the loss I was experiencing having to leave theatre life. For over 30 years Barbara has been at my side. Year after year She has personally watched how this progressive disease, Spinocerebellar Ataxia, has eaten away at my bodily faculties making me totally dependent.

The level of responsibility has increased as the disease progresses. It’s gone beyond cooking, making the bed, writing, dressing, bathing, trips to the doctor and pharmacy, nightly trips to the toilet and more ! Just about everything! And now at age 72 that is quite a responsibility!

Now taking on all the driving and financial responsibilities has added more aspects of the ever increasing amount of work involved caring for our daily lives. Having to drive has changed her eating and drinking habits forever!

She didn’t ask for these things to affect her life but the situation was thrust upon her. I’m loosing cognitive memory function slowly and am repeating things that were just said to me. Her dedication to the adaptation has profoundly affected my ability to cope with very simple things.

My ability to function in regard to eating and drinking has not been affected yet. But I’m very lucky to have her at my side. We are capable of talking about the future. We are both very much aware that things will worsen before they get better. Recently my mental health was affected by Ataxia. This situation I’m sure was frightening for her.

My guilt feelings are very noticeable. Our lines of communication are still open. She is still able to cope with the situation. But since research can’t help with my needs, Barbara is very aware of my euthanasia request. With this in mind we have begun to plan for the future. Thank God we live in Spain where this is legally allowed.

This is a snapshot of our lives regarding living with a terminal incurable condition like Spinocrebellar Ataxia in the late stages.

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 !