Hello everyone. I wanted to take a moment to wish you all a peaceful and happy Christmas and, if you do not celebrate Christmas, to nonetheless extend that wish for peace and happiness to you.
Thank you to all of my readers and to those who follow me on various social media sites:
I would particularly like to thank everyone who interacts with me, and with other of my social media page followers, with comments, anecdotes, picture, photographs, e-mails and messages. You support means a great deal to me and your friendship is accepted with gratitude.
This has been an incredibly challenging, but also exciting year. While I sadly brought to a close after eighteen years, eleven of which were in Suffolk, my career as a psychotherapist, I have gained a Diploma in Creative Writing and I have published a paperback book, three ebooks and submitted two of my own plays for competition. I am blown away by the interest and uptake of my publications in this first year.
It was an honour to be asked to write an article for Parkinson’s Life magazine and later to find that Parkinson’s Life had listed my paperback about my life with Parkinson’s as within the top eight Parkinson’s related books in Europe this year!! Such an accolade was a dream, from a writing perspective but also a great joy, more importantly, to learn that my work had touched many people with Parkinson’s in such a positive way.
As if that was not all, my gratitude goes to lovely ‘DJ Johnny Parky’ at Radio Parkies, who invited me to have a stint as guest speaker in a spot on his show over summer. That fun and wonderful opportunity has led me to now have my own show at Shaky Radio, every Saturday at 6pm. My thanks to both Johnny of Radio Parkies and now also to John Scotter and Susan Pennels at Shaky Radio. These amazing opportunities have given me a wonderful chance to reach people in the Parkinson’s community in new ways and, as my Dilpoma in Creative Writing included writing for radio, to have the space to grow as a broadcaster and to develop this skill is just beyond my hopes.
To my friends at Parkinson’s Road; in the Admin Team and the members themselves, I thank you all for letting me express myself; enabling me to share my art with you, my random videos and my lengthy or cheeky posts. It is a beautifully expressive environment and culture and I am so often overwhelmed by the friendship and affection that I have received from you all.
To those people who came to see me in my role as a therapist over the past couple of decades. Many of you then followed me on this site and at various social media sites, following therapy. Many of you remained in touch and I thank you all for your support as I continue to evolve and adapt my life as a person with Parkinson’s. For those who stood by me while my health deteriorated, which was pretty much everyone, I have no words adequate enough to express my gratitude. I know that the changes in me, due to Parkinson’s, led to me delivering a less well presented service in these past eighteen months. Ending the service this year was the right thing to do, although that process was accelerated by Brexit and the impact of not knowing if my medication supply would/will continue. This situation affects many people out there who are on medication for chronic illness. I do hope things work out well for those people.
That’s just life, but what I can say is that my psychotherapy career has been utterly extraordinary, fulfilling and deeply touching. I have been wholly inspired by many people and deeply moved by the wondrous beauty of the human spirit. My only word to former clients, as is my word to all people, is to be kind. That means kindness in thought, feelings, emotions, behaviours and responses. Kindness to self and to others. If we all practice kindness, I truly believe most of the world’s troubles would diminish.
To those who have come to know me as their patient; a person with Young Onset Parkinson’s, to my friends who are part of my life enough to understand my challenges with Parkinson’s and to my family; especially Kevin, I could not walk this difficult road without your love, kindness, honesty, patience and support. You know who you all are. From the occasional kind word online, through to being here with me through the very worst of days, and then tough times yet to come; thank you all so very much.
Merry Christmas to you all and to your loved ones. May the New Year be filled with new happiness, fun and laughter.
With heartfelt gratitude.
Now – go and have some fun!
When you come back – remember, please share this site and my social media sites with your friends and family and do stay connected and in touch.
With heartfelt gratitude.
With an agreement that we would not be meeting in November, simply due to each of us having so much else on, this third Saturday in December saw the 4th meeting of what we small group of creative friends have called ‘The Art Shack’. Originally, and still, a Facebook group by that name, we now try to meet monthly for a little creative fun, a good catch up and some nice food.
This time we were back at the lovely home of our friend, Darren. With pastries, pies and nibbles, plus a very welcomed flow of coffee, Darren hosted a lovely day for those of us who could be there. In fact, on this occasion, with a Christmas Farmer’s Market in the village of Snape, here in Suffolk, Darren, Kevin and I decided to go to the Christmas market first and then get back to Darren’s in time for ‘The Art Shack’ activities.
The Christmas Farmer’s Market was held at Snape Maltings and there certainly were more than the usual number of visitors to the venue, all arriving at the same time. The market, itself, was inside a large marquee. Snape Maltings has a wonderful range of shops; artisan, art and crafts, food, stationery, galleries, cafes and so much more. All of this, set beside the beautiful River Alde.
Here are some photos from within Snape Maltings:
One of the things that was difficult, for me, was that I had to keep stopping to rest. I could only walk short distances and then my Parkinson’s symptoms would kick in and remind me that I live with limitations, these days.
In fact, I made a live video, while I was in the Christmas Farmer’s Market marquee and broadcast that to ‘Parkinson’s Road’; the Parkinson’s support group on Facebook that I co-facilitate. I had to explain to members of that group what I was experiencing. I was experiencing repeated bouts of ‘freezing’ and simply had to exit the marquee and stand somewhere less packed with people. Thankfully, Kevin noticed that I was in difficulty and that ‘freezing’ was happening and so he stood by me while it happened and then helped me to exit to a more comfortable place. His awareness helped me, hugely.
Here’s a video on the symptom of freezing, made by Parkinson’s UK. If you do not know how freezing works, take a look. It’s a short video but is very well done and informative. Please watch, it is just one minute long:
In spite of this, I still enjoyed my visit to the Christmas Farmer’s Market and we picked up a few nice things to add to our festive food stock.
From there, it was time to head to Darren’s and start doing all things creative. The aim of ‘The Art Shack’ is to just encourage each other to be creative. Whether it be art or crafts or even if someone wanted to bake while others are being arty and crafty, then it is all wonderful.
I had a couple of art projects on the go. One, was to paint a village scene and the other was to progress a drawing of our local pub. Kevin used his time for writing and Darren was dabbling with knitting. While some people could not make it and with a few having to cancel last minute, Helen and Kim soon arrived and Helen was making paper snowflake decorations while Kim was knitting a scarf.
Here’s a video on making paper snowflakes, if you would like to give it a try:
One of the benefits of getting friends to form a group like this is that it makes an extra social gathering happen, which is always good, but that it also keeps creativity on the agenda in our lives; not only the ongoing practice but the additional benefit of sharing ideas, teaching each other new things and progressing projects.
Here are some photos from our lovely afternoon together:
I would recommend that you and your friends create a monthly art and crafts group. Set up a Facebook group page so that you can share your ideas, progress and activities between meeting up. I’ve learnt so much in just four of these sessions and we have had so many wonderful chuckles, as well.
If you would like to ask questions about creating such a group or if you would like to share something about your own group, then please feel free to leave a comment, below.
(C) Dean G. Parsons. 2019.
A few days ago, I received a telephone call from from my lovely cousin, telling me that her mum had died! This was a complete shock, not least of all to my cousin, for her mum had shown no signs of anything suggesting that this awful event was imminent. My aunt was such a vibrant person; so very alive and filled with the spark of mischief and adventure. Only days before, her beaming face lit up my Facebook news feed as she was out and about having fun and looking great. How does one even begin to accept that this could possibly have happened? Yet, it has happened.
Life is so very precious and yet so very fragile. This reminds me of the death of my father back in 2002. Again, an incredibly vibrant person; full of adventure and in what appeared to be incredibly good physical shape. At age sixty-eight, he still had a six-pack and worked out for two hours per day. He had still been working, within months of his death and his job was not what you would expect someone to be doing just months before death; he was a stuntman and stunt choreographerand even at his age he was still being set on fire, jumping off buildings, spinning cars over and doing various dangerous acts for film and television. Yet, he was diagnosed with pancreatic cancer and six weeks later he was dead. He had lived an incredibly fulfilling life.
Loss, particularly that of a parent, can make you think about your own mortality. How long do we have? How will we come to an end? How can we maintain health and increase the opportunity for a longer and healthy-as-possible life? These thoughts all come to the surface at the time of losing someone but very soon they fall back into our subconscious and we tend not to consider our mortality until the next loss occurs. Then, it all begins anew.
I guess the purpose of this post is really to ask each of you to stop, just for a moment, and consider how you are living. Consider your health and well-being. Consider your activity levels and lifestyle. Consider your vibrancy, or lack of. Are you participating in life or watching from a sofa? Are you living, or watching characters on television or film play out adventures that you could be having?
Even with Parkinson’s Disease, I fully intend to have more adventures in the future. I still aspire to see new places, meet new people and do new things. I can, however, sit here with satisfaction in the knowledge that I have had an incredibly adventurous life. I have travelled far and wide, I have done unique and amazing things, I have met the most unusual and extraordinary peopleand and I have experienced things that are way out of the ordinary context of how my life might appear on the surface. I have sat under distant skies, I have sailed on distant waters and I have experienced the richness of my five senses in places and situations that most would not believe or even imagine. Things that I will never write in this blog because they would seem too far fetched.
This is what living is. My recommendation to anyone reading this is to get up, switch off your tv, switch off your computers, tablets, phones and games – at least sometimes, and go out and have an adventure. Take a risk. Try something new.
I feel completely at peace about death, for I feel that I have lived a large life. I recall someone saying to me:
“Live many lives, within your life.” – Anon.
I have done just that and it has enabled me to feel utterly happy and fulfilled. I will continue to evolve and make changes happen, even while living with illness. Just this year I became a qualified writer, wrote two plays, three short story ebooks and a paperback and now I am also a radio broadcaster with my own weekly show! All this year. I already have ideas for new things for the year ahead, too.
I genuinely feel concerned for those who do not move to live in a new area, who do not travel the world, who do not go on an adventure, who do not push themselves and who do not reinvent aspects of their lives in order to have new experiences. Then again, perhaps those people do not know what they are missing and so will feel content to spend a lifetime carrying out the same routines, in the same places and existing in front of the television. Where, I have to ask, is the growth and development, the enrichment and the broadening of the mind, in that?
Remember this word: reinvention. Give it a go. Do not wait. Do it now by making a decision to do something different. Change one aspect of your life and watch a new adventure unfold. These need not be massive changes. To be clear, even simple changes enrich life. Take a different route to the shops or to work, so you see a different landscape or notice different things. Try a different food or ingredient in a meal. Visit a place or a person that offers something different to your usual experience and see what you learn, notice or feel. Study something or read about something and expand your thoughts, perspective and insight. Do you see? Adventure can come in many forms and sometimes the simple ones offer just as rich a gift. Make a change; grand or small.
Or don’t. Be warned, though; life is short. I do not say that with doom or gloom; just as a simple fact.
I wonder what you will decide? Do leave a comment below, should you make a change and welcome in the adventure of new experiences. Maybe you have already done so? In which case, please share something of your experience, below.
(C) Dean G. Parsons. 2019.
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(C) Dean G. Parsons. 2019.
With the progression of Parkinson’s Disease giving me a powerful kick or three, this year, I have deteriorated more than I had expected and certainly my new neurologist has said that Parkinson’s is now at ‘fast progression’. Nothing exemplified this better than the number of times that I have fallen and almost fallen this year. One area, in particular, stood out to me a a hazard; our bathroom.
Stepping into the bath or getting out of the bath became something that seemed ridiculously challenging, at times, for someone of my age. Obviously, as a person with Parkinson’s, this difficulty is to be expected, but I do sometimes find this whole situation rather incredulous, to say the least.
I made contact with our local authority to see about how one might apply for a funding grant for a remodelling of the bathroom. The response was not favourable, in that the one year application and assessment process would almost certainly end up in a decline, I was told. I thought I would have to settle for the ongoing risk of injury from falling and, to be frank, I would have had to but for one thing. An incredibly decent and kind Landlord.
Unable to fund a renovation, particularly on a centuries old cottage that is a listed building, our Landlord made the most generous offer to renovate the bathroom into one suited to my disability needs and he has funded it. I am absolutely staggered by this and grateful beyond words, for the work has had a bit of a domino effect and other parts of the building are also being worked on.
Before, to access the shower required me to step into the bath. Now, with work still in progress, the bath has been removed and a vast, wall length shower unit is being fitted. The bathroom is undergoing complete renovation and decorating. What we didn’t have before was an extractor fan. This, too is being fitted and will be sensitive to the room being entered; it will come on automatically. We have incredibly hard water in Suffolk, with large lime deposits under most of the land, I am told, and so we suffer with the scaling on equipment, caused by limescale. To give our new shower the longest life possible, an automated water softening device has been built into the room. The builders are also installing railings for me to hold in the shower and around the room.
I cannot adequately express my gratitude for such a kind action by our Landlord, in the face of not being able to get the funding from our local authority. Here is a photo of the first day of the renovation work on the former bathroom:
I will post the photo of the finished room, into this article, in due course. Have you had any difficulty getting a renovation that you need? How have you dealt with this? Have you achieved a renovation that you have found to be life changing and risk reducing? Do please feel free to comment below with your own experiences of how disability has led you to need to renovate or how disability has led you to transform an aspect of your home.
(C) Dean G. Parsons. 2019.
If you are going to enjoy crafting, then be prepared for the fact that you will need a variety of materials and tools to craft with. Seldom do we ever simply undertake one type of craft project; that would be rather dull, I think, unless we are producing a product to sell or for a longer term purpose.
You are going to need to have storage space, in the form of shelves and/or cupboards but then you are going to need storage for the craft items, themselves. Everything from boxes and baskets, through to trays and boxes which have specific compartments for the smaller items. You will be amazed at how quickly a few items make demand on your available space. You are going to need to become creative about finding ever more storage space and containers that will be:
- Safe (particularly from the reach of small children and pets).
- Easy to reach/access.
- Aesthetically pleasing, where possible.
Here are just a few of the items that I keep on bookshelves in my art/craft area, which is in a corner of our guest room:
There are other items, too, but this gives you an idea of some of the range of products you might want to have in supply. They will all need a space to be stored! You may be surprised how often this is overlooked. If you have had storage success or traumas, do feel free to comment below.
With Christmas almost upon us, think about gift wrapping. You will see, in my photos above, that I have a stock of ribbon for wrapping. Some of these have been purpose bought but some are also retained from the ends of rolls not completely used in a prior year, while others I have kept from gifts that have been given to me. Why throw nice wrapping materials away, when you can recycle them when wrapping a gift for someone else? This helps to save money and also saves on waste. We must all try to cease disposing of materials that can be re-used. You’ll notice the flower-like item that looks a little like a button or fastener. This too came from a gift wrap that had been given to me and this pretty piece would typically just be thrown away but now it will be reused.
From what I have seen, there is a lot of plastic use in the crafting world. One of my objectives is to make this a plastic free hobby. That appears to be a challenge but I will post on that subject in the new year, as I discover new products that may be less environmentally impacting. For me, a big part of crafts as a hobby or interest is to step away from buying the mass-produced; which inevitably come with plastic and a hefty carbon footprint. If you have achieved progress in this area, do please comment below with your ideas and suggestions.
What do you keep in your crafting store? What types of crafts do you enjoy. Again, do feel free to comment below.
(C) Dean G. Parsons. 2019.
Taken from my You Tube channel. In this vlog, I discuss aspects relating to the parents of those of us with Young Onset Parkinson’s Disease.
(C) Dean G. Parsons. 2019.
Taken from my You Tube channel. In this vlog, I discuss the importance of communication for people with Parkinson’s.
(C) Dean G. Parsons. 2019.
Taken from my You Tube Channel. In this vlog, I discuss medication.
(C) Dean G. Parsons. 2019.
At almost 2am, I have been hit by a flash of inspiration. I’ve then gone ahead and written a scene filled with wonderful characters set within the most perfect setting. Something I am incredibly pleased about; a character that I have been writing about for a few years but have not had the right project to put her into, will fit absolutely beautifully into this newly born novel! Finally, she has a place to belong and a role to play.
I have a lovely friend called Sharon who often asks me whether I have been able to write more about this particular character. I let Sharon proof read some of the work I have written about her, a couple of years ago. Sharon has never forgotten this character and neither have I. She just will not go away. It’s as if there is a story that needs to be told! It was wonderful to know that Sharon felt an interest in the character. There will be two other key characters in this novel, which will be rich in supporting characters as well. Once I get hooked, then I have to write.
My style is not unusual, but it is not for all writers. I have absolutely no idea what the story will be, or even the genre! My method of writing is that I have to simply sit at my computer and find a starting point in the moment and run with it. I will picture something or someone and that starts me off and then I write. Where characters are concerned, their stories unfold literally as I write. I get as excited about writing, as I do, for I am the reader as well and I can’t wait to turn the next page, so to speak, for I have no idea what will be there until I get there.
Ah…okay – so it’s now past 2am. While my insomnia keeps me awake now, until 4am each day, I am going to go to bed and try to see whether sleep will arrive a little earlier than usual. Sleep deprivation is wiping me out and I need my energy so I can crack on with this writing!
If you are a writer and identify with my processes, do leave a comment below. It would be nice not to feel like I’m completely mad on my own!
(C) Dean G. Parsons. 2019.