Hopes For The Future – Who Is 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 in my last phase! My mobility, balance, speech , swallowing and motor skills have been adversely affected by this hereditary disorder that has run through my family for 4 generations.

The greatest loss of all was having to give up my singing career in Europe as an aspiring opera singer. The greatest advantage to 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 someoneby 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 4 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 on to 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 10 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.

Dignity in Death – Know your Thresholds- Know your Rights

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 psychologist. 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 cardio- logical problems associated with Ataxia. You also loose 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 .

My Story

Patience regarding Research

This is a very personal aspect of Ataxia for me! At 75 years old, I don’t have time on my side. It has been said by the research searching for cures and treatments that help Ataxia may need 10 years before approval by the FDA in the USA and the European Medical Agency is given. These agencies have the power to move the research discovery process forward.

I probably won’t live to see the progress! But that doesn’t mean that we should stop doing research and necessary work on Ataxia. But there is a lot we can do while we wait! The most important thing older people, with neurological movement, diseases like Ataxia.

Move it or loose it! Go to the gym or get a resistance band for your legs. The choice to advance your personal situation is in your hands. Don’t give up !

My Story – Keeps Going – even in Late Stage Ataxia!

Even at late stage of the disease, this 73 year old still has something to say! No, it’s not easy to deal with. But it is even more difficult to deal with when you are a caregiver and you are witness to the rapid decline.

For me the biggest problem is to know there is nothing you can control anymore. Until now I have been able to find ways to deal with the situation.
But now! Not anymore. I imagine it is hard to deal with and watch !

Eating is becoming more difficult. I used to be able to eat with a spoon and fork- but the clumsiness is making my ability to control my movements while eating are very difficult – to the point of helplessness. The situation just isn’t fun anymore.

But there is one thing I can control. Life or death! When I have had enough!
ENOUGH!

Misdiagnosed- FA or Spinocerebellar

At age 72 – it really doesn’t matter ! For the longest time neurologists thought it was Friedrichs Ataxia I was suffering from. Now with further studies it has been confirmed to be a form of SCA #6 or Multiple System Atrophy. Whatever the hell it is – there is no cure or treatment!

Now gene therapy can put a new spin on research. The genetic lab of Stephanie Cherqui at USC San Diego USA and gene therapy researchers in Spain along with biotechnology have had success investigating FA.

It is believed that the success story of Friedrichs Ataxia ( an inherited family disease ) will provide researchers the necessary answers they need to go after the Spinocerebellar Ataxia types. 🤞

Beyond singing and on to Neuroart and Neuroaesthetics

The story surrounding a great portion of my biography centers around how Ataxia took my Opera singer career away from me. But now the full story is focused around the fact that a lot of my time has been devoted to Ataxia advocacy. I am tirelessly working to get others involved in supporting Ataxia and Ataxia research.

With International Ataxia Awareness Day approaching on September 25 the need for people worldwide to join our efforts in supporting Ataxia research and Ataxia Awareness is crucial. Neuroart arts have contributed to my advocacy.

For me it all started with Neuroart arts and supporting Ataxia through workshops and art exhibitions. But the Neuroart platform is so much bigger than that and crosses over into a multicultural society. Now performing arts, writing, architecture, cooking, grafic and media arts , to mention a few, have opened up my eyes to a whole new world of creativity.

Susan Magsamen of the mind + art lab at John Hopkins University has been a huge inspiration to my work on behalf of the advocacy I have regarding NeuroArts and Neuroaesthetics. Let us hope that society sees the benefits of supporting NeuroArts!

My Story – Part 2

On the website my story until now has been centered around most of the events before my 70th birthday. But my story and the affects Ataxia at 70, in its late stages, has 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 ( doplopia ) 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 – have 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 it’s progression are available to me. It allows me and my caregiver 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.

Donation for Ataxia research

The time has come to devise a will regarding my late stage Ataxia. My legacy can go beyond just not having children. It has been brought to my attention that after my death my brain can be donated to Ataxia research.

Along with my membership with the National Ataxia Foundation a letter will be attached to the will and testament created here in Spain. My brain tissue will be donated to the University of Barcelona Ataxia Center for research. The donation of my brain tissue might help to find a cure for the Ataxia disease.

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. “