25 years without a diagnosis: The story of Pilar and Parkinson's disease
Published Aug 15, 2019 • By Lee Ruiz
Pilar, a member of Carenity in Spain, has lived with Parkinson's disease for more than 40 years and was not ultimately diagnosed until 25 years after she experienced her initial symptoms. Pilar has agreed to share with us her story with Parkinson's disease, its treatments, and how Parkinson's disease has impacted her life.
Hi Pilar, could you please briefly introduce yourself?
Hello, my name is Pilar and I am Valencian. I am 56 years old, I have a 27 year old daughter. I love to draw and paint in watercolors, in a self-taught way, because I never took any actual classes on how to draw or paint. I also enjoy listening to music and sing. I suffer from Parkinson's disease and try not to only see the negative. I think everything has a "teaching" side to it... I've done everything I could to help others understand that you shouldn't ask "why me?" but rather you should ask "why not me?".
What were the first symptoms you experienced and when did they appear?
I experienced my first symptoms at 15. I was shaking and I felt stiff when I walked, as if I were a robot. It was hard to get to the school and I was dragging my left foot; my balance was very bad and without realizing, I was unstable. I had to use the walls to keep me up... I felt like I was going to fall.
How was the diagnosis? How did you react to this news?
As for the diagnosis, it did not come quickly, because by being so young, Parkinson’s disease never crossed the doctors' minds … that it could be this bad. I went years without knowing what disease I suffered from and that, in itself, is hard to carry. I was unable to connect and speak with anyone who would know what I was going through because I did not even know the name of “what I was going through.” I did not learn the condition I had until when I was in my forties thanks to a more effective diagnostic test, PET exam*. I was so glad to finally have a name to put on all of what I was going through. Finally, I was able to meet people who had Parkinson’s disease, who could and did help me and encourage me. Many are still my friends today.
* PET and PET / CT head (positron emission tomography) is a diagnostic test that uses small amounts of radioactive material (called radiosonde) to diagnose and determine the severity of a variety of diseases. A PET / CT scan helps differentiate Alzheimer's disease from other types of dementia. The PET scan shows where the radioactive substance is in your body. A CT scan takes pictures of the inside of the body using x-rays taken from different angles.
How did your loved ones react to the diagnosis? Did you feel support from them?
My mother does not accept the fact that I suffer from this disease and much less that it is of a genetic origin from both my father and mother, because I inherited two mutations. At first, I felt very lonely and misunderstood; my daughter's father spent the day making me believe that I was making everyone's life bitter; that it was not normal and that I was going crazy. However, luckily, I was strong. We separated and six years ago, I remarried, and my current husband is the best thing that has happened to me in life. He helps me, understands me, and listens to me when I need it.
For you, the progression of the disease was very slow until your daughter was born. Could you explain the changes that occurred after your daughter's birth?
Well, when my daughter was born, I suffered a hormonal change that negatively affected me. The tremors worsened, I was not able to walk to the park, and you could say that the disease woke up with its full wrath. My daughter was only 5 months old and I could not even push the stroller. I was 28 years old at that time and it was a very difficut and challenging time. I would look at my daughter and wonder what was going to happen to her. The doctors told me that the birth of my daughter had woken up this neurological disease and that if it continued like it was that I would end up, in a short time, in a wheelchair. I cried … not for what was already written into my life, but for my daughter. I wanted to be sure that I would be able to see her grow up… I gave it all I had and fought against this disease with all my effort.
How has Parkinson's disease impacted your social and professional life?
It has had many impacts on my life, especially since I have barely been able to work because of it. I am a clinic assistant and an administrative assistant and I have never worked as one. I am also an accountant and I have never practiced. As a result of this condition, I lost all my friends because I could not keep up with them. I was very lonely for a long time, but this made me strong and understand that those people were not really my friends... so for that, I am better.
Presently, how do you deal with the disease in your daily life?
I have good streaks and bad streaks. During the good streaks, I take full advantage of them; during the bad streaks, I just remain patient and endure it because there is nothing else I can do. My day starts at 6 in the morning. I get up to take my pills and then again at eight. I sleep very little. I try to be as active as possible, even if I can only mentally distract myself so as not to think. I also listen to music. When I am in a bad streak, I tremble so much that I cannot do anything . Of course, every time I notice that the good streaks last shorter and the bad ones last longer.
What medications are you currently taking? Are they effective?
I take madopar, which is levodopa, every 3 hours; at six in the morning, I take mirapexin slow release, 2.1 and 1.5 mgl. Plus. I take sinemet twice daily. I take akineton for tremors and rivotril to sleep. When none of this seems to have the needed effect, I take apomorphine. Responding to whether they are effective, yes, although sometimes there is nothing that gives me the required effect.
What are the differences between the treatments of 40 years ago and those of today?
There is nothing new that can be said to be innovative since the discovery of the levodopa, which was a huge breakthrough. Since that, nothing big has come out that is not more of the same with another name, and more expensive.
Do you think Parkinson’s disease is getting more attention today and that there are less misconceptions than there were 40 years ago?
The opposite. April 11 is World Parkinson's Day, and this year, on April 11, almost none of the media outlets even mentioned it! It is one day a year. The media could at least make an informative program to raise awareness in society that Parkinson’s disease is not exclusive to the elderly and that it does not just consist of tremors… it is so much more. It is disabling.
More and more young people are diagnosed and it is a serious problem because these people are still of working age and have families and small children to provide for... they end up seeing their lives broken because of this disease. Many of these patients hide the symptoms until it is evident for fear of rejection and fear of being left without help or a way to make a living. Without help, Parkinson's disease is very difficult to carry. I find it very sad, that after such a long time since I started with this disease, people still basically completely ignore its existence.
In your opinion, are there other aspects within Parkinson's disease that have not progressed fast enough in 40 years?
Research has not evolved due to lack of funding (in Spain). Spain is a country where research is so precarious that even scientists have to go to other countries to conduct their own investigations and research because it is basically impossible here.
The sick continue to suffer because of society’s failure to acknowledge the existence and need for Parkinson’s disease research. Society continues to ignore the symptoms and confuse them with alcoholism, drug addiction, etc. Today, Parkinson's disease is the great unknown. With all the audiovisual media that exists today, more should be done to give importance to this rare type of disease because nobody is exempt from it.
How has your perception and acceptance of the disease changed in 40 years?
Well, at first you get a rebellion sense of feeling; you feel like a warrior. In the beginning, you tell yourself that you will defeat it, that you will win. However, as the years go by and nothing changes, you continue to get worse and see that the only explanation the medical experts have provided to you about your illness is that they don't know... they don't know why, how, or when. You then begin to give up the fight and say that it is what it is. I now feel tired and disappointed. Before I had thousands of hopes, but now I don't... I will believe it when I see it.
It is like playing with the despair of the sick. Sometimes optimistic and positive news comes out about Parkinson's disease treatments, such as claims that they are close to having the cure for it and then you never hear anything else about it.
What message or advice would you like to give to those who are diagnosed with Parkinson's disease and / or family members of those diagnosed with Parkinson's disease?
To those diagnosed, I would tell them to know that you can have a happy life despite Parkinson’s disease and that nothing ends, it just transforms. The normal course is that you eventually get used to this new life. I recommend you stay informed and in tune with your body and the disease you are fighting against; examine and understand your body and how you feel because nobody can better understand and know how Parkinson’s disease is affecting you more than yourself.
To the family members, I would say to arm themselves with patience and to prepare to give a lot of love because we need it. There are many fears, feelings of doubt, and feelings of helplessness... it is difficult, I know it, but it only takes a little understanding and a lot of support.
And you... how many years have you been living with Parkinson's disease? How was your journey to obtaining the diagnosis?
Do not hesitate to share your experience, ask for advice or give support!