On reflection I can see how when younger we take our health and well-being for granted, after all why worry about older age, chronic illness and social isolation in the flush of youth? and that's the way it should be. I heard a saying somewhere that living is for the young, and long may that be. As I write this my son is coming to the end of his dream holiday in Thailand, he is living his dream and building memories that will sustain him for the rest of his life, he will tell his children and hopefully grandchildren in decades to come about his adventures, as they too will reach out and experience new exciting cultures in an ever shrinking world.
I would love to revisit the Mayan ruins in Mexico, that place left an indelible mark in my heart and I cannot really explain why. I knew I was walking in the footsteps of great Mayan priests, Spanish conquistadors, and the adventurers of the 19th Century who rediscovered these lost civilisations deep in the Yucatan peninsula. It may sound silly but it was for me a spiritual experience, not in the way that I saw the light and found God there, it was a deep awe and wonder of this misunderstood culture that were technically superior in the way they built their stone pyramids deep in the rain forests that line up exactly with the spring and summer solstice.
Yes we all know it was probably cruel and barbaric and thousands of workers lives were sacrificed in building these monuments, but the place touched me deeply. Was I sensing the wonder of the place or feeling and sensing the pain and torment which was the price paid by thousands of expendable workers? I will never truly know, but I hope my son has in his travels, felt the same intrigue, wonder and at the same time some sadness of man`s power and cruelty in the unstinting tide of power and domination.
Bringing this blog back to reality, and my Parkinson`s and cancer journey, well that road is still being travelled. I remain at stage 3 pancreatic cancer, with the next blood test and scan due next month. It still surprises me some 15 months post surgery the amount of pain and discomfort I feel. I have gained some weight which is good and people say how well I look lol and yes compared to how I looked pre surgery it is an improvement. The cancer I have has a very poor survival rate long term, its a bit of a ticking time bomb but, to this date I am still on top of it and if things change then i will face it head on again. My Parkinson`s now dominates my daily life which is a complete reversal to a year ago when chemotherapy and all that entailed pushed the Parkinson's further down the scale of urgency.
There is little doubt that Parkinson's is having more and more of a negative effect on my daily life. My sleep pattern is a joke. I am normally awake now between 3 and 4 in the morning as I find it too uncomfortable to stay in bed. This is usually back/leg pain and I cannot just stay in bed, its better that I get up and take some painkillers to help settle things down. Thank goodness for 24 hour tv!! Some days are fairly ok, particularly a nice dry day and I can get outside and do things, it can almost make me forget I have two chronic illnesses, and boy I relish and make the most of those days even if I suffer the next day! I am of course a full time carer to ,me many hurdles to achieve great things and if my life on this earth is judged on my children, I will be so proud and happy.
I saw my Parkinsons nurse this week, which was a positive and constructive meeting . My Neupro patch is going to be increased to 6mg, my Co-Beneldopa to remain the same, and she is going to try me on Entacapone to see if that helps the stiffness etc. She seems very receptive to me being assessed for DBS and she is going to contact my consultant to get the ball rolling so it can be discussed when I see him in a few weeks. She did say not many from Cornwall have had this procedure mainly due to age and unsuitability so who knows maybe they will consider me suitable,
This if I am found suitable is Deep Brain Stimulation (DBS) this link will explain if its new to you http://www.parkinsons.org.uk/content/deep-brain-stimulation-surgery-parkinsons
Of course its not an easy option it is very major surgery which does carry risks ie strokes or death, but, if it helps to control the incessant tremor which will only get worse as this disease progresses this will give me a better quality of life, the chance to reduce medication etc, but it is all down to a long assessment process. I will be seeing my consultant in the spring and i will broach the subject with him then. I guess too if my cancer should return or spread that will probably reduce my chances of suitability, so watch this space and send good positive vibes lol. My nearest clinic for this will be Bristol so a lot of travelling will be involved.
I just wanted to mention again the excellent Parkinson's support group I am fortunate enough to have the responsibility of administrating along with a lovely lady called Michelle. It is a closed group so we can closely monitor who we accept into the group. We like to be a group of like minded people from all over the world who are primarily people with Parkinson's (PWP) or, carers and family members.
Please come along and have a look if you are reading this and have an interest in Parkinson's, search for us on Facebook, Parkinson's forum The Parky Chat Group. We have a lovely group of people in there all with their own story and experiences, the lovely thing is there is always somebody around if a member is having a bad day for whatever reason, and that means a lot as Parkinson's can be a lonely journey. We maintain a mix of current research articles, help and information and some social chat and fun. The group is not affiliated to Parkinson's UK but we do use information from their excellent website which is worth a visit http://www.parkinsons.org.uk/
Well folks I have rambled again and covered a lot of information about my life and the journey I am on. Thank you so much for reading this, please share it with anyone you think may be interested.
Contact me on borninkernow@outlook.com or pop into our Facebook group and apply to join if you have an interest in Parkinson's.
Take good care of yourselves and those around you, tell them you love them frequently.
Tony
Take
a trip into the past. Follow the footsteps of Mayan priests, brave
Spanish conquistadors, and 19th century adventurers who climbed the same
steps that you are about to embark on. Deep in the Yucatan jungle lie
the remains of ancient Mayan cities that will enrich your understanding
of this interesting yet misunderstood culture. Don't miss what some
would say to be the "Egypt of the Americas." The Mayan ruins of the
Yucatan are awe-inspiring and provide a deeper understanding of Mexican
history. - See more at:
https://www.locogringo.com/mexico/ways-to-play/mayan-ruins-archaeological-sites/#sthash.R9O96U9S.dpuf
Take
a trip into the past. Follow the footsteps of Mayan priests, brave
Spanish conquistadors, and 19th century adventurers who climbed the same
steps that you are about to embark on. Deep in the Yucatan jungle lie
the remains of ancient Mayan cities that will enrich your understanding
of this interesting yet misunderstood culture. Don't miss what some
would say to be the "Egypt of the Americas." The Mayan ruins of the
Yucatan are awe-inspiring and provide a deeper understanding of Mexican
history. - See more at:
https://www.locogringo.com/mexico/ways-to-play/mayan-ruins-archaeological-sites/#sthash.R9O96U9S.dpuf
Take
a trip into the past. Follow the footsteps of Mayan priests, brave
Spanish conquistadors, and 19th century adventurers who climbed the same
steps that you are about to embark on. Deep in the Yucatan jungle lie
the remains of ancient Mayan cities that will enrich your understanding
of this interesting yet misunderstood culture. Don't miss what some
would say to be the "Egypt of the Americas." The Mayan ruins of the
Yucatan are awe-inspiring and provide a deeper understanding of Mexican
history. - See more at:
https://www.locogringo.com/mexico/ways-to-play/mayan-ruins-archaeological-sites/#sthash.R9O96U9S.dpuf
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