Written by Martha Harlam

My journey with Ataxia has been a life full of ups and downs. Ataxia has defined most of my life since it was first diagnosed in 1988. I was 38 years old, and I am now 69. My mobility, balance, speech, swallowing, and motor skills have been adversely affected by this hereditary disorder that has run through my family for four generations.

The greatest loss of all was having to give up my singing career in Europe as an aspiring opera singer. The greatest advantage of this miserable situation was letting my partner enter my life. To have and live through something like Ataxia and the negative aspects of life this disease brings with it is debilitating. You have to have someone by your side. You can’t go it alone.

By accepting my disability, I was able to move forward and make something of my life. Both Germany and Spain played a pivotal role in my ability to help myself. Germany gave me management and organizational skills, and Spain allowed me to live out a dream for four years to supply the Costa Blanca with hospice care and palliative services.

Ataxia is what you call a creepy crawly disease. You don’t necessarily die directly from the situation, but you can die from its medical complications. The slow progressive nature of this neurological disorder impairs your ability to function normally and in a dignified manner. The power of Positivity got me through it. Here are some suggestions to help others as well:

• Have a positive attitude about your disability.
• See white and not black in life situations.
• Invite some people into my sphere and isolate others.
• Find joy in life instead of looking for condemnation.
• “Do unto others as they would do unto you” – do good!
• Live without guilt and have peace of mind – accept being disabled.
• Ask for the aids and equipment you need to cope.

Who is there to judge you? Can we control fate? Do we have the power to forgive? Forgive what? Ourselves? Being born? I have the responsibility to learn, educate myself, and have enough information to make an informed decision. All this helps me and others. Before I was old enough to make these choices, I was put onto the path of true positivity. Listening to and truly feeling music is my way of maintaining this disease and turning it all into a positive situation.

I understand and live by a Judeo-Christian ideology, the Ten Commandments, judicial law, and the joy of feeling what music gives to us. I am not a perfect person, but I do strive for perfection and try to avoid egotistical ways.

Ataxia brings many challenges with it. It affects the patient and their caretakers in the end stages. In the late, acute stages of the disease, many complications are associated with the disorder. Pain can be determined by doctors and psychologists. The pain associated with Ataxia is more on an emotional level than physical. The complications of everyday dignity are magnified as the disability progresses.

Physically there are cardiologic problems associated with Ataxia. You also lose control of the muscle coordination that regulates the urinating and bowel process. Things like depression, anxiety, burden of guilt, insomnia are just a few of the emotional complications that affect yourself and your personal family caretaker. But you do have options!

Your choice may have legal consequences for your caretaker. Only certain countries allow Euthanasia legally. It is necessary to be informed about the legal aspects of such a decision. The final decision should be one of personal choice and legally prepared for, with a clear mind, in the form of a personal legal testament.

On the website, my story until now has been centered around most of the events before my 70th birthday. But my story and the effects of Ataxia at 70, in its late stages, have not been documented until now. As my life goes on, so does the progression of the disease.

The loss of my active musical activities stopped in 1988. Since then, I have been watching the progressive nature of Ataxia consume my faculties. Ataxia has totally affected my daily life. The lack of independence is the issue that bothers me the most. My coordination regarding driving, my eyesight (diplopia), and my constant need to empty my bladder due to urgency has all affected my life. The incontinence – that disturbs my sleeping to visit the toilet – has directly affected my daily and nightly activities. Getting older with Ataxia is no fun!

But somehow I have managed to maintain a positive attitude and a sense of humor. Accepting my disability by using the medication and aids that help me to cope with the disease and its progression are available to me. It allows me and my caregiver to cope with the disease. Scientific and technological developments provide us with the necessary tools to cope. This allows me to still travel with cruise ships.

See the original blog post here.