I have Atypical Parkinsonism!

I Am My DNA

Mervelee Myers   Mervelee Myers     I am my DNA?

My Mama

I was touched by the story I read in the Daily Express newspaper http://www.express.org.uk, on Monday 2nd February 2015 – express yourself. Since I am into research, so I am in a better place to handle the important matters in my life. That will impact on the person I will eventually become in my old age, if I am lucky to live as long as my Mother, 90 years old. I am availing myself of all the necessary information to make it easier for my family to better understand me. And therefore, better educated and equipped to deal with me? When anyone ask about the things that are of interests to me, you won’t hear me naming any of the popular programmes on television or social media.

Because frankly I am not interested in most of them and do not have the time to watch them either. Neither will I waste my hard earned cash and valuable money buying those daily gossip magazines. Because I am not that interested in the lives of A-Z list celebrities who don’t have anything to teach me about life. Instead you will find me focussing on researching and documenting my family history for the future generations, if any of them are interested? I am living with my regrets of not knowing much about some of my ancestors, who were the key in making me the person who I am today and will become later on.

After reading Sarah King’s story in the newspaper about her husband Andrew, my Mother is the first person who came to mind. The reason she came to mind is because she is the last of my immediate family to depart this life on 01.06.2014 at the ripe old age of 90. The most significant reason for my Mother coming to mind is the fact that she suffered from DEMENTIA http://www.alzheimers.org.uk/getinvolved, for a number of her twilight years. Believe it or not I am the person who diagnosed her condition from distances, here in the UK. After I had enhanced studies whilst living in this country of opportunity.

In addition to my Early Years Practice 2006 studies, Foundation Degree In Early Years 2008 and Working Together For Children 2010. I had done an Open University http://www.aoug.org.uk/awards, Health and Social Care Level 2 course in 2006. This was paid for by the Trade Union http://unison.org.uk/, at the time. That was when empowering the social care workforce was given top priority back then when I was a student. I could not help but agreed with the conclusions drawn by one of the Presenters Vicky Hutchin – The Progress Check at Two: getting it right for the child and parents at the recently concluded http://www.nurseryworldshow.com/london 2015. About the scaling down of teaching. Because for years I was reprimanded at work in Luton Street http://www.leyf.org.uk that I was not a teacher and no one wanted to hear my voice teaching.

I am an advocate of Continuing Personal Professional Development (CPPD) because I believe that knowledge is power. And I was empowered to apply my enhanced knowledge and expertise from studying about Child Development to diagnosed Mum’s condition. When I started hearing about her strange un-characteristic behaviours, I realised that something was just not right. Diagnosing Mum’s condition http://www.dementiafriends.org.uk, earlier helped put her on the pathways for getting the care and attention needed to make her life experiences better. The diagnosis enabled my family back home in Jamaica to separate the cantankerous, miserable old woman who always spoke her mind from the little old lady who was a shell of her former self.

Although I wasn’t home to play my part as I ought to, as Mum’s only daughter. I was in a better position living in the UK because I was financially secured. Having a job that I am passionate about, http://www.justice.gov.uk/tribunals/employment/claims/responding, at http://www.leyf.org.uk. From which I earned the money to contribute to her upkeep to the very end. meant that I did not have to worry about money. I made it a point of my duty to call home once per week, on a weekend. After her diagnosis to speak to her, trying to keep that bond strong and relevant as I joined groups like http://www.ageuk.org.uk/update, http://www.diabetes.org.uk, http://www.parkinsons.org.uk/research and http://www.Cruk.org as part of my reseach in keeping abreast of breakthrough in medical sciences.

As my Mother’s only girl from a brood of the eight (8) children she raised to adulthood, I was aware of my duties, especially because of the way I was raised. She had in fact buried two (2) of my Brothers before in 1994. ASHTER age 37+ years from complications, which I refused to go into. BYRON aged 56 years old in 2008, from colon cancer. My father, her Husband aged 62 years old from complications with Parkinson’s and other complications, on 9.2.1980. My granny, her Mother from a broken heart after the brutal murder of he son and other complications to do with having strokes on 6.3.1980. The death of her husband and mother a month apart in 1980. And her only Brother Terah aged 50 years old in 1978.

I sort of understand and can empathised with Sarah King about some of the emotions she is experiencing at this time in her life. Even though my Mum could not make head nor tails of what I was saying in the end. I still continued to call to hear her voice. However I had my moments when after calling home I was left to reflect on my own life because of my earlier experiences of helping Mum to care for Dad and Gran. I would end up in pieces and have to be comforted by my then partner, now my husband. Despite my misgivings and feelings of being totally useless, I couldn’t help but continue calling my Mum. I was comforted by just hearing that melodious laugh of hers and the voice by which she was best known.

Updates – 9.2.2018: I think this is where I have to let it be known that when I was affected emotionally and I informed my former employers LEYF about my plight. I have to be proactive in getting the support I needed by adopting my defensive practice. I have to put in writing about how I was unable to cope emotionally with going over to the Penfold Street Residential Home because I was affected by seeing the elderly residents.  No one would do anything until I take matters in my hands, demanding what I know to be my basic rights under the Equality Act 2010. The Race Relations 1976 (Amendment) Act 2000. The Disability Discrimination Act 1995 & 2005. The Safeguarding Vulnerable Group Act 2006. The United Nations Convention on the Rights of the Child Article 14 states that it is a basic entitlement of humans to enjoy their rights and freedoms without discrimination on any grounds. 

I guess all of us – my siblings and I have, and our offspring inherited Mum’s laugh in varying measures. That is why I find it so hard when others chose to ridicule me about some of my family traits and cultural heritage. Now I realise mine is my Atypical Parkinsonism, over which I have no control whatsoever. Like my Mum when I am feeling vulnerable about some of my deficits and insecurities, I try and cover them up. Mama uses her laughter, and the way she done her missing digit from her left thumb by tucking it away. I will hold and hug myself to stop my nervous tics and shakes from becoming visible. I will also try not to speak, as when I become nervous the words failed to come out.

Or I am so intent on getting the words out that that the volume increases or decreases. So when I am trying to protect myself, I am not being rude, aggressive, using body language or any of those things that others have problems with. Updates – 9.2.2018: Attending Dr Kay Mathieson http://www.lindenlearning.org. SEND: Understanding typical and atypical behaviours Seminar at the Nursery World Show 2018 helped me to clear up some of the myths about my disabilities. And the Special Educational Needs and Disability Act 2001. The Equality Act 2010 states that there is no need for me to establish a medically diagnosed cause for the impairment. What is importnat to consider is the effect of the impairment.

But on a different front anyone from Jamaica uses different body languages and cues to express ourselves in one form or another. I will conclude by saying my Mother had a very fulfilling life for almost all of her 90 years with us and not many are as fortunate as she was. It was briefly interrupted with her onset Dementia which lasted until she departed this life. I having inherited much of Mum’s indomitable traits and spirits, primarily of which was her Tender Loving Care (TLC). Which she reserved for the Young, Sick, Old and Vulnerable amongst us. My sons are of the opinion that I will benefit from Mum’s DNA.

I can only hope they are right and I continue to have a productive life as far into my dotage as is reasonably possible. But it is hard to function when others put obstacles in my way. I am positive now that like Mama, GOD put me on this earth for a purpose. After getting counselling at http://www.slam-iapt.nhs.uk/southwark, I know I have been on the road to recovery. Thats why LEYF, the Employment Tribunal and the establishments and systems will not be getting away with ruining my life. I am part of history and research. Look no further than than Dr Maria Hudson 2012 Research Paper Ref: 01/12. ACAS: research@acas.org.uk, http://www.acas.org.uk/researchpapers.

My Papa

That is why I believe I owe it to the memory of my Father to dedicate this story to him. For no other reasons than he suffered a similar fate to Andrew, Sarah King’s husband when he was in his late 40’s. Dad was struck down in the prime of his life as far back as I can recall from when I was a little girl. I was in the transitional developmental stages going through puberty. He was eventually made redundant from his job as a Common Labourer when I was still attending Secondary School. Mum had to take on the mantle wearing many hats as chief bread winner, informal carer and much more over the next 10+ years that dad struggled with his illnesses. It was the hardest thing for me to come to terms with Dad’s illness.

I had vivid memories of my Papa who worked hard for his family. In addition to his full time job as a Common Labourer, he cultivated and planted ground provisions and rice anywhere he could find a spot, to supplement his income. He was a bee keeper, and tried his hand at cattle and goat rearing too. Our home was always filled with a wide variety of fresh food products that we eat to our hearts content. What we did not eat was given away to family and friends in the community. As at that time everything was shared out for others to enjoy. I get my generosity of spirits from my parents and can only see the good in people.

Dad was a professional at most things that he put his hands to. And everyone would to this day talk about the way he kept up his yard; with the neat edges and grass cut down to lawn levels with his machete. He volunteered to cut the school yard and cleaned the street that we lived in. I still have vivid memories of Dad balancing the broomstick on the end of his finger tips and the palm of his hand. And his handwriting was just so perfect, especially the way he formed the letter N for his surname, Nembhard. He used his two (2) hands to grater the cassava, rubbing the cassava down the side of the grater at the same time in unison.

Coming from St Elizabeth meant that Dad introduced lots of the culture to Westmoreland where he eventually settled. He had a concertina that he called a flutetina that he played. And he was always playing his mouth organ or whistling along as he was always singing and praising his God in one form or another. With the onset of his inherited illness, Parkinson Disease, Dad slowly began to have the tremors. At first this was put down to him being sick with his Nerves because he overworked himself? He was used as a pioneering Guinea Pig, testing medication because I am of the opinion that not much scientific knowledge was not available at the time about Dad’s condition?

Our home was full to overflowing with all these medications in the forms of these massive tablets, most of which Dad never even take. Over the years the tiny tremors turned into more noticeable shakes. Which exacerbated into thunderous earth shattering rumbles that could be seen and heard from near and far. Dad lost control of his body as every conceivable fibre of his being shook along with the foundation of the bed or chair he was in. Dad’s illness rendered him totally useless in the end to the point where he had to have twenty four (24) hour care.

Before his slow demise into uselessness, dad continued to be the hardworking man to almost the very end as long as he could get out of bed. He’d go pick up the leaves from the yard, bathe himself with the water, Mum placed in the sun to warm. And even held my son; rocked him to sleep singing a lullaby. For me Dad’s illness was like torture as I watched him struggle with his condition getting worse over the ensuing years. Mum was selfless in her duty of care to him and then Grandma also took sick, after the death of her only Son in 1978, close to Dad’s end.

Mum had to go out to work to bring home the bacon and come home to attend to the personal care of both her loved ones; her Mother and Husband. I recalled the last time Dad came out of the house, unto the veranda and stayed for a while. He flung one of his foot over the veranda railing and was being his old self as if he had taken a new lease on life and recovered from his illnesses? I guess it might have been Mum in her infinite wisdom who said that this could have been Dad’s final visit to the veranda? She claimed that from experiences this was the case when people gained strength before their time to depart this world. Mum’s words were spot on because Dad never came back out of his room after that until he died.

Mum’s words were the self-fulfilling prophecy because Dad gained his strength to spend his final time on his veranda before becoming bedbound. His condition deteriorated so much that he was a shell of his former self. Dad was a man of slim built, but by the time he died, he had gone down to pure skeleton/skin and bones because he was bedridden. When they came to collect his body to take to the morgue, they thought he had died days before? In a sense he had died, only waiting for the breath to leave the frail body. His years of sickness had taken tolls on Mum, but she never once complained and no one ever saw her shed a tear. If she ever did, it was in privacy when no one could witness her weaknesses when her defences were down?

I on the other hand was always questioning the wisdom of God in allowing my Papa who lived his life to the Bible’s teaching to suffer so much. I would rant and rave in my heart about this unjust God who could allow my God fearing Papa to go through so much when he didn’t deserve any of it. How could this God whom my Papa worshipped with every fibre of his being allowed him to suffer such indignity in life and then continue to hold him at ransom and not release him to go home and rest? One of my Brother, ASHTER, used to say if he was alone with Dad, he would help him out of his suffering. That was before I knew anything about euthanasia.

Updates – 10.2.2018: That Brother, ASHTER died in 1994 age 37+ years and went to join Dad. He knew he was dying but keep saying he was going to live for ever. I guess that’s what kept him going, in the end he was provoked into committing criminal act and died all alone in prison. Another brother BYRON died in 2008 aged 56 years old. That’s when my problems escalated and got out of hand at the workplace, where I became part of research. My childhood traumas was triggered into Post Traumatic Stress Disorder by the discrimination I faced. And which http://unison.org.uk, Southwark Council: sen@southwark.gov.uk, and Capstick of Wimbledon contributed to ruining my career and my life. Then the Local Educational Authority and Social Services and the Local Safeguarding Board and http://www.ofsted.gov.uk join in to blacklist and networking against me. 

Then imagine how I felt when I realised I inherited Dad’s Parkinson as I started to have signs and symptoms for my efforts. Then I couldn’t help but think that my Papa’s God must have been punishing me for something I might have done that I did not know anything about. I am one (1) girl of eight (8) siblings and I picked the shortest straw by inheriting Dad’s debilitating condition. Parkinson’s disease which caused him to be stuck down in his prime and struggle before he died. But to be frank knowledge is power and via studies, I have empowered myself with the information as I learnt to accept that I cannot change anything about who my parents are.

I have learnt coping mechanisms in dealing with my conditions, however there are times when I feel as if I am swamped with problems to push me over the edge? My one consolation is I was the last person to see Dad before and after he died. I do consider that to be a blessing in disguise as I had gone in the room to greet him before taking my baby son for fresh air. He was trying to talk to me but by this he’d lost his vocals and I am guessing he was saying his final goodbye to me and the new baby? Mum couldn’t believe when I got back and called out to say Dad died after going back in the room.

Maybe one of the factors to cause her disbelief was the fact that Dad died with his eyes wide opened and she closed them. Her first concerns was that Dad did not get a drink of water and was bringing it because she still did not believe he’d died. To be honest Dad’s death was a relief to everyone as we had watched his suffering over the years to the point where we were praying for his release?

Updates – 10.2.2018: That’s why because of my ordeals I am an advocate of inclusion. LEYF have deprived me of my basic Human Rights so now I am becoming active fundraising for worthy causes. The latest of which was https://www.parkinsons.org.uk/get-involved/event. I have done London Bridges Challenge 2017 events.fundraising@diabetes.org.uk. And set up my next http://www.justgiving.com/Mervelee-Myers.

Uncaring World of Today

I grew up seeing my parents sharing everything they had with those who were less fortunate than us. And yes although we were dirt poor, there were others who were worse off financially than us. I can testify to the fact that even when we were short of some of the material things in life, we were not short of food. There was always enough food to stave off hunger as Dad cultivated any and everything. That is why I could never ever think of doing anything to take bread out of the mouth of the hungry. Nor deprive them of a roof over their head and most importantly sabotaging their changes of having a fulfilling lifestyle with all the basics that God provided.

When you know your history and the journeys you have travelled to get yourself out of the poverty into which you were born through no fault of your own. You are better prepared to be sensitive to the needs of others. Have access to the emotional capital, to empathise with them and do all in your power to help them overcome and enjoy fulfilling lifestyles without putting obstacles in their way. Updates – 10.2.2018: That’s why I will be unpicking June O’Sullivan MBE-CEO of http://www.lefy.org.uk Seminar at the Nursery World Show 2018. I identify some of my intellectual properties in her Quality provision – building a skilled and motivational early years team. She will have to explain how come LEYF have the Chef Gloria masquarading and selling out her moral compass to the psychopaths that set her up that she stole food, because she refused to lie.

My family on both sides suffered from a variety of health conditions. Some of which were to render them helpless like my dad, send them to an early grave or to suffer from long lasting neurological conditions. Granddad from Mum died at an early age from Cancer. Granddad from Dad must have been the one with the defective Parkinson’s genes that dad and his sibling inherited? Updates – 10.2.2018: Now my cousin is doing the Family Tree and granddad lived to be in his 70s. So now I will be doing my DNA, because I need answers.  Because Grandma lived to be 96 years old, outliving my Dad by  ten (10) years and burying some of her children.

Grandma’s only deficit was that she was accidentally blinded in one eye by her dressmaker, Mother when the scissors fell on her when a baby. However that did not impact on her life very much because she was still sewing patchwork quilts and stringing needles without the aid of glasses into ripe old age. Grandma Chambers suffered strokes which finally took her home to glory in her 80th years. God rest her soul. Mum had dementia towards the end, but she had a fulfilling life nevertheless.

Researching my family history have empowered me to shake of the shackles and done so much for my self-esteem and self-confidence. I am more at ease about who I am, and who I might turn out to be as I am aging. I know full well what to expect, therefore there are no surprises for me around the corner. Although I believe that as an only girl, I have inherited most of the defective genes and DNA conditions from both sides of my family. My research placed me in a place where I am no longer afraid to face the future.

I am in control of my own destiny as I can do much to keep healthy longer. Until I reach that stage in life like my parents and grandparents before me when my family; children and grandchildren will have to take charge? However it would be great if persons in my situation are supported to make the most of what we have to offer. Instead we are being provoked and pushed over the edge to act out of character. Behaviours that have nothing to do with my DNA for the glorifications of some who don’t give a toss about the vulnerable in the society. I guess my Papa would encourage each and every one to be our brother’s/sister’s KEEPER!

35th Anniversary of Dad’s Death & 38th in 2018.

On the 35th anniversary of the death of my beloved Father Ivan Sandyman NEMBHARD. I take this time out to reclaim those precious memories of the humble man who was my Papa. When the going gets tough as it has been since the start of 2015, all I can do is bring to the fore; the knowledge, values and beliefs he taught me as his one (1) and only daughter. I know challenges there will be. But I know I will have to be strong when confronted by the wiles of Satan in the guises of some of the snakes under grasses who are out to strike. There is a saying from my culture that say “Bush have Ears”, but as my Dad would say. It is not Bush that have Ears, is the Human Being Standing in the Bush Listening.

My Granny would say “The Same Dog that takes out a Bone Will Bring Back One”. I believe it is Standard English to say that “Eaves Droppers never hear anything Good about themselves”. But mark owe I know absolutely nutn bout dis 1 cause I am a Yardie Gal in this instance. I am Loud Mouth, Brash & in Ur Face, Full of Myself with Attitudes to boot and I will always call a spade a spade no matter the consequences! However I know without a doubt I’d never do anything to deprive another Human Being of their Basic Human Rights as I am too much of my Parents Daughter!

They never only think about themselves, but every human beings for whom they could stretch forth a hand of help. If you do your research because my life is an open book and I have decided to place all my skeletons on the outside of my closets so those curious snoopers don’t have to waste their time digging. But I can’t help wishing that the cupboards might tumble dung pon dem and bury dem alive if they chose to go out of dem way to crucify others?

But back to the research, if anyone cares to take up the challenge, they will find that my Papa beats me one time only. The reason was to Cuss Bad Wuds, and I still Cuss Bad Wuds to this day even if I now do so under my breathe? Guess they will find a name for this too in the long run… Body Language, Attitudes, etc, but what happens when one (I) child with hardly any communications skills kiss teeth? Am I to come to the conclusion that that child told me to Kiss her Ass as they would have me believe? Well they say the sins of the Parents visit the 3rd & 4th generations except those who fear the Lord.

My sons have to be very careful as they will have to take on all my transgressions? Since I have inherited my Parents DNA, I am finding it hard to change from the roaring lion into the pussy cat that can hardly purr! Well mek all dem blinking Kettle carry on cussing Pot black and those without blemish can fling dah fus brick enuh hear I! I guess only my Parents would understand my perspectives on life still. Since they made me into the person whom I am. I am a Yardie Gal with the Gift of the Gabs in Chatting Gibberish! Guess is not much I can do about that no matter how hard I try to Change?

Updates – 10.2.2018: For the GOD People of the World

I could not careless what the like of Alfred Taylor and his cronies think about me. However I will give him the credit for inspiring me to get to this stage in my life that on the 38th years of the death of my Father, I have made the final hurdles into sorting out my life. He wormed his way into my heart and I think I have fallen in love with him. But maybe what I have fallen for is the memory of my Father. Thanks Alfred Taylor for been part of the Legacy. One day I will find it in my heart to forgive you and might even come to Sabbath to tell the ladies who to look out for and to be in control of their blessings.  

2 thoughts on “I have Atypical Parkinsonism!

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