On Thursday 3rd November 2016, I was diagnosed with the symptoms of Parkinson's Disease. After not responding to any treatment for a frozen shoulder the neurologist gave me the very unexpected and
totally devastating news.
After the initial shock it has taken me over a year to come to terms with the diagnosis and what it means to me and my loved ones, I am learning to adapt to the condition and changes in my body and my mind.
My mum encouraged me with her description of my condition, so to bring some humor and lightness to our lives I now refer to my Parkinsons diagnosis as my "disruption".
The past 17 months I have ridden the very bumpy roller coaster of fear, anxiety and depression: fear of the future, despair over the possibility of being disabled or worse still of losing my mind, how this will impact those I love and whether in fact I could even continue working, in truth I have had moments of not wanting to face another day of uncertainty. The uncertainty as to how my body is going to show up for me on any given day, will the fatigue, slowness of movement and tremor steal my once vibrant and abundant vitality and energy or will I have a good day.
But I do know one thing, I AM greater than the conditions of my body! and my mind for that matter.
So What's Parkinsons Disease?
Parkinson's Disease is a neurological condition described by the medical profession as being progressive and degenerative, there is currently no cure and the best that conventional medicine can offer is drugs with an array of side affects or invasive brain surgery to manage the debilitating symptoms.
Parkinsons is not genetic and it is not known what causes it.
It generally effects older people , only 20% of people with the condition are known as Young onset...that's me, I'm in my early 50's.
Understandably over the past 17 months researching conventional and alternative interventions for my disruption has become a major priority as I learn to navigate my life in a completely new way.
What I'm experiencing?
No two people who have been diagnosed with the symptoms of Parkinson's Disease are the same.
My symptoms are a daily struggle with debilitating fatigue, tremor in my left arm, slowness on my left side, impaired movement, trouble with fine motor skills, I limp if I'm particularly fatigued, loss of balance, unsteady on my feet, emotional and mental overwhelm, limited capacity for stimulation, particularly noisy, busy places, depression, anxiety, my speech can be affected, sometimes what I think and what I say are a mismatch, my experience of who I am is very different, my sense of joy, happiness and my energetic, vibrant self has been diminished....I think you get the picture! All very confronting symptoms for me as I am a Yoga Teacher.....life sure does have a sense of humour!
The Treatment Path I have chosen? Amino Acid Therapy.
I have made a number of lifestyle changes with diet, exercise as well as reducing stress which help me to understand this disruption and what improves or worsens symptoms.
Outside of these lifestyle changes and conventional medicine the most promising and effective treatment that I have researched is Amino Acid Therapy, which has been developed by Dr. Marty Hinz in the U.S.
I don't need to travel to the U.S for treatment however it the treatment is expensive. It is a 7 month program where I have weekly appointments with the Doctor over the phone and take prescribed supplements and L- Dopa, which is the precursor to Dopamine which is the neurotransmitter that is affected in Parkinsons Disease. The treatment is a natural form rather than the chemically produced medication which is renowned for its side effects.
In addition to viewing many testimonials I have spoken with the first person in Australia who is on this Amino Acid Therapy program, he is the same age as me, diagnosed a year earlier than me; his last text to me read like this:
"Hi Lizzie, I'm very well. Thank you. How about yourself? I just graduated from the program as I finally hit the sweet spot and I'm feeling great. Ready to take on the world. Just on an event making coffee and at the same time listening and moving to great music. Loving life again"
I have experienced a great deal of grief, isolation, loneliness and sense of loss over the past year....all I want is to be happy, feel joy and to dance again...it's one of my favourite things to do!
Because I have not taken the conventional medication and am young in terms of the condition I have been accepted to undergo this line of treatment.
I am a brave, strong and inspiring person who wants to continue to work and live a full happy life. My work as a Yoga teacher is to inspire and encourage all those that I come in contact with...to cultivate hope, joy and possibility in everything they do and I want to keep doing this for as long as my health supports me.
And here's you come in.
In addition to my diagnosis last year in April I lost our beautiful Yoga studio to fire which I had run for 7 years, we were blessed enough to be offered a temporary location to operate from but the fallout and impact of my diagnosis and the loss of business due to the fire have created quite a financial strain. My husband and I have had to make hard decisions and in order to keep our livelihood, we have put what money we had saved into a new Yoga studio so that we continue to have an income and I can continue to do what makes my heart sing.
We are now needing your support so I can undergo the Amino Acid Therapy, please rally around me to crowdfund this therapy so I regain the quality of life I was once blessed with.
So what are the costs.
Doctors appointments x 30 (over 7 months)
Full program of supplements per month
$744.00 USD or $5208USD (for the full 7 months)
Total $8608.00 USD
I will probably need to be on supplements for the rest of my life but this program is about finding the right combination and dosage for me. Raising these funds will get me on my way!
Of course there is always a risk that this therapy may not give me the results I hope for BUT if it does, my pledge and promise is to share my journey with as many people who experience the same disruption, giving them hope. I also want to bring more awareness and understanding about Parkinsons Disease to people who don't know much about it. By sharing my journey my intention is create more demand for this therapy, hopefully making the therapy more widely available, affordable and accessible. Perhaps then Dr. Hinz will have more resources to train more doctors in his protocol, currently there are only 3 in the U.S.
Come on this journey with me!
I will be posting updates on this page on how the treatment is going for me, I hope you will follow my journey and share this with anybody you know who may experience this same disruption, my hope is together we can pay "hope" forward and provide some inspiration.
- Deborah Paidoussi
- Daniela Grech
- Lisa Mayne
- Gail Richards
- Karen Mew
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