Parkinson’s UK

As you can see from the picture, the chosen charity for my challenge is Parkinson’s UK.

What is Parkinson’s

Parkinson’s is a progressive neurological condition affecting movements such as walking, talking, and writing.

It occurs as result of a loss of nerve cells in the part of the brain known as the substantia nigra. These cells are responsible for producing a chemical known as dopamine, which allows messages to be sent to the parts of the brain that co-ordinate movement. With the depletion of dopamine-producing cells, these parts of the brain are unable to function normally.

The risk of developing Parkinson’s increases with age, and symptoms often appear after the age of 50. Some people may not be diagnosed until they are in their 70s or 80s.

However, in some cases Parkinson’s is diagnosed before the age of 40, and this is known as young onset Parkinson’s disease.

I could keep copying and pasting from the Parkinson’s UK website (http://www.parkinsons.org.uk/default.aspx) or I can let someone else tell you about Parkinson’s from a first hand point of view.

Hugh (or Ben as I know him) is my uncle.  He was diagnosed with Parkinson’s at an age that I am not too far away from.  Almost every Saturday from September through to May/June, Ben, some of his friends and I would follow the Aberavon rugby team to the most glamorous corners of South Wales – Cross Keys, Newbridge, Treorchy to name just a few.

He has bought me burgers and tea at almost every rugby ground that we have been to and even bought me my first season ticket when I was too old for the cheap as chips child season ticket.  We have experienced the joys of victories over more successful neighbours and the pain of hammerings and shock defeats.

I (and quite a few others) received this on Facebook the other day and it sums up everything that Parkinson’s Disease means to someone having to live with it.

Just me

Lots of you both my friends & family are asking how i am lately, and just not “how are you?” but ” how are you, really & honestly??” to which i reply “im ok alive & kicking , thanks for asking” lol……….so here it is, a bit longer than what I thought but a true answer.

Parkinson’s is starting to sound somewhat thin for me as a diagnosis. I was diagnosed at the age of 32, same age as Michael J. Fox , im 48 now, I have a number of symptoms and a great deal of diversity in the various medical issues caused by my condition. I have what is known as Parkinsonism, which includes: slowness of movement (bradykinesia), tremors, balance troubles and rigidity/stiffness. These are all very persistent and getting worse gradually over time. In addition, there are other physical, autonomic, emotional and cognitive changes.

I noticed more than ever that I lack the ability at times to speak very well. My ideas get muddled in a sea of slow thought processes, combined with lip and tongue mechanisms that are hampered by tremors and slowness of muscle movement. Yes, you heard me right, a tremor in my tongue! It is hard to stay on my feet for very long due to a lack of control over my legs and trunk, let alone the balance issues and tremors all through my body, including the movement in my legs and feet. Our new downstairs bedroom and shower room extension built with a disability grant is a real help and a god send.

I am not complaining, I am just weary of this process. I am tired of being less than interesting or a person who is outright strange with whom to carry on a conversation. Before you say, “You aren’t any different and I enjoy talking with you,” consider what it would be like to be a family member – those closest to me or, particularly, my wonderful wife. I have great concern for her and the way she has to endure not having the same companion in me that I once was, though I am still “in here!” It is just that she can’t rely on me for physical strength or emotional support, as much as I try to give it to her. Though she does not complain, but shows me patience and a cheerful attitude, I know it is painful for her within herself. I would do anything to support, help, encourage and reassure her, but alas, I fall short, not because of my intelligence or character, but because a Parkinsonian Disorder has taken over my forward motion in life. I am a victim of a great coincidence of circumstances– who will ever tell me the name of my disease or how I got it? I do not have a sense of hope for these two expectations.

There is a silver lining in all this– I have the great pleasure of being able to spend my days with my wife of 24 years. She brings a special inspiration and motivation to me that causes me to press on and keep going. Her smile lifts my heart when things seem hopeless.

When I think about it, I am not alone, because many are in this same quandary. More than anything, I honestly admit I wish I could turn back the clock and be the person I once was, at least in the way I affect others. I am still Hugh, I know it and I feel the real me in here!

It just happens that I have a disease that manifests itself in a visual and auditory way so demonstratively that I am not always understood. I am learning a kind of humility that I could never have grown to understand like I do today.

I return to my common theme as I close: I am so fortunate to be married to such a wonderful and committed lady. I have three of the most considerate and good-hearted people in my 2 fine sons and daughter, now all adults.

I don’t say these things to say that I possess something others do not have or to say that my way is better. If I have learned anything from disability, it is that all people have something beautiful to share and the sooner we learn that the better our lives will benefit others and ourselves. I know that time is precious and we can’t waste it being bitter and self-righteous.

Thanks for letting me vent and explain.

take care everyone & be safe ((hugs))

Hugh