by Gary Sharpe.
Over on facebook, my discussion posts have attracted a great deal of contributions over the years which include extremely useful insights from many other people with Parkinson's Disease, from all over the world. I feel the sum total of these shared experiences, arising from real life, can be more valuable for other people surviving with the condition than a some of the large amounts of clinical data being generated. Indeed, the anecdotal evidence provided by a significant number of people with PD themselves is certainly more applicable than a lot of the more esoteric medical science. The experience based evidence contains clues and patterns about the disease which doctors currently do not even think to ask. For example, the evidence points to developmental trauma, such as Adverse Childhood Experiences, including common patterns of behaviour or "personality types" which are known to arise from these, or of shock trauma/injury/accidents, as looming large in the background history of many people with idiopathic PD. In many cases, on self-reflection, people with PD come to understand these played a role and that they were symptomatic long before actual diagnosis. Yet our background histories are not accounted for at all in our current medical diagnosis or prognosis.
It is frequently suggested to me that I should write a book on my experiences for other people with PD to benefit from. However, I feel that a much more valuable book would be simply to collate all the shared experiences of which have been contributed to my posts, under over-arching common themes, in order to help other people with PD understand themselves and to know they are not alone. A kind of manual written by people with PD for others with PD. This would be a Herculean task given the shear volume of correspondence gathered now. However, in the meantime, I endeavour to publish some of the most insightful and applicable contributions, as articles on the website, and will continue to do so. Here, Stefania Lungu from Romania shares her story.
Not Giving Up
by Stefania Lungu, contributing author and person with Parkinson’s Disease.
“I am 66 years old and this is my story. I strongly believe that almost all major illnesses have deep roots in some traumas/shocks we have at certain moments of our lives, which we were not able to “digest”. All my emotional traumas are related to members of my family. My first shock was back in 1994, when I was alone with a little child to raise. Knock-knock, depression installed itself immediately and I was not able to recognize it and give it a proper treatment. I was very angry, and afraid that I would not be able to cope with all my problems. Yet, in all the critical moments of my life, I received from seemingly nowhere some help from ”above”, and somehow I managed to solve step by step the problems which arose, even when I remained jobless in 2000, and by miracle an old tennis friend helped me to find a new job in a bank, that help restore confidence in myself. At a certain point, problems started with my child, which grew bigger and bigger, until 2004 when something very serious happened and I felt completely crushed. One year later, I found out by accident that I have breast cancer and went alone through an operation and all the pending treatments (chemotherapy and radiotherapy). Again, as if by a miracle, I received help from “nowhere” and managed to get through it all. After six month I was able to start over my job again in the bank and worked as hard as any other colleague until my retirement in 2012.
At this point, I have to stress that I received constant help from my father in staying with my child, so that I could earn the necessary money to live from the job. In 2009, my right hand and leg were slightly shaking and more vigorously when I was cold or emotional. I started to visit a neurologist, an old friend of my father who was also a medical doctor, who refused to pronounce the word Parkinson’s, even if I asked specifically, but prescribed some mild medicine. At a certain point, in 2011, I went to the neurologist from the medical institution I was paying my taxes to and the doctor told me from the very first moment that I had PD. It was a great shock for me and started to have panic attacks. I went for a second opinion and the answer was the same, so I started to take agonists: Mirapexin, Ropinerol, even Rigotine patches (which do not attach properly to the skin) + Azilect. As all of them are more or less the same, I stayed with Ropinerol. From the very beginning, I started to study information on internet regarding PD and I had a strong feeling against levodopa, because of side effects. Therefore I refused to take it until this year, when I realized that I had to.
In spite of the PD I have been very active, or better said, obsessed, with sports starting with my retirement and played tennis three times a week, and on Sundays I used to go to Qi Gong classes until 2016. The doses of Ropinerol increased and of course also the problems with different organs: poor sleep, dry eyes, digestion problems, constipation, bloating and peripheral venous circulation. I got alerted in spring 2016 (remember that I had also cancer and still have all kinds of checks annually) and went to several gastroenterology doctors, who gave me different medicines, without taking into consideration my other medical problems. Anyhow, in November 2016 my father had a major head stroke, remaining paralyzed and I was again under a terrible shock, trying to cope with the whole situation without bringing him in a hospital, because he refused to go. Again the helping hand from above came into picture and I managed to put him in a caring home with very decent conditions and not far from home (with his half consent) , where he lived for another 10 month, until his death, God bless him.
The new shock made me incapable of anything: had no strength, no will, did not want to move, had belly pain, terrible shaking and I did not want to be seen like this by friends. I barely got out for shopping and to the doctor. Somehow, all along, I did not give up the foolish hope that everything is reversible and I have to find an alternative treatment to my PD, as I saw what were the side effects of the medical PD treatment. I tried all kind of treatments: Ayurveda massage, normal massage, acupuncture, Bowen, detoxes, etc, but these did not help me personally. Being obsessed about not remaining completely stiff, I made Qi Gong movements by myself and started to learn and practice, from You Tube, senior line dances in order to maintain a certain exercises for the legs and also brain (some dances have 64 different movements and you have to perform them in the indicated order) and I played a lot of Sudoku. During all this time, I continued to study books related to psychology, articles, information on Internet, found the Out-Thinking Parkinson’s group and others on facebook, and found out that when doing something I like, without thinking of my illness or problems, the shaking is milder.
During the summer 2018 I had an urge to start working with crystals and, without any proper classes, I started to look out for books in this field and to buy crystals for health therapy. Little by little, I became more confident, tried to take a distance from the emotional relations and at Easter, after a phone conversation with a former tennis friend (one of many during the last 3 “silent” years), I decided to try to play tennis again. At the beginning it was awful, because I had muscle pains, could hardly move my legs from the spot and realized that I did not feel the ball in the court as I should. I started at home a tough exercises program for rebuilding all my muscles and my playing went better. I still have a lot to catch up in muscular strength, tennis techniques, and will power, but I have moments when I am very proud of myself for having the guts to break the obstacle from my mind. The illness is still here, I am still shaking, but somehow I have moments when I do not care so much about it.
What currently bothers me now is:
insomnia (when I am lucky I manage to sleep 5-6 hours, but there are nights when I barely sleep 3 hours), although when going to bed I take ½ Rivotril and 1 Melatonine.
digestion and bloating (the food is not properly digested, probably because of lack of enzymes), constipation (got myself diverticulitis) and pain on the right side after eating (probably the liver is tired because of multitude of medicines, I am taking). Based on my previous experience I started to take some medicine for helping the liver and some probiotics. I do not have pains on the right side or bloating anymore, but am still struggling with the constipation. I am taking some Lepicol powder with fibers, but it does not help properly and besides retains water. Have to find something else. I gave up eating meat after the cancer operation, do not drink alcohol, do not smoke, do not eat sugar and during the last year gave up diaries and eggs, because had I some allergy on the skin . As I felt weak, I started to eat again some fresh cheese and eggs, but rarely. Main food remains vegetables, nuts and fruits, cooked in any possible way.
peripheral venous circulation (got blue spider veins) when remaining seated for a long time or when I am walking for 1-2 hours, even when playing tennis. Started to use horse chestnut gel. Will also try to find something else.
For the time being I am taking ¼ levodopa (try not to increase the dose), 8mg Ropinerol, Azilect, Q10 Coenzyme, Vitamin D3, Manganese, Rivotril and started to take also Jarrow probiotic and some support for the liver. I am convinced that all the problems with the other organs, were caused by the PD medication, which should be prescribed for each individual and not prescribed for just based on the disease label.
I am forcing myself to walk, to practice exercises, play tennis and even to be social again, because I saw what larger damage can represent for the lack of energy for both body and mind. I am also convinced that meditation (trying to identify what suits me best), relaxation, and autosuggestion, and any form of alternative treatments (in my case the crystals therapy) are more helpful than the medication. My dream is to be able to give up all medicines and only live healthy. I still do not dare to do that now. In the heart of my hearts, I still hope that if we are able to reach the complete relaxation = Zen = Nirvana, we will also reach the complete health. It is still some way to go, but I do not want to give up.
Wish you all to find the necessary peace of mind and complete health!”