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Parkinson's and me...
4 June 2020
TRYING YOUR BEST SOMETIMES IS NOT GOOD ENOUGH
Highlighting constant failings in the system is having an effect on me, things seem to run ok for a while and then it seems to implode
Trying to be to be positive and look after my mental well being as well as my medical needs is a tough enough job without constant battles of wills with patient coordinators.
The problem arises when there is a lack of listening and a total lack of empathy or understanding of a condition, all I want to do is take my meds at the proper time and not run out.
The back story is pretty much a simple tale and easy to grasp however, at my GP surgery this seems to be the most difficult task.
I have several medications to take on a daily basis and all are on regular repeat prescription , most are prescribed on a 2 monthly rota except for one which for some bizarre reason I only get enough for 40 days, this was not a problem in the past as I would do the ordering and all was well
since Covid 19 arrived I was asked to nominate pharmacy to collect my scripts which I did... I wasn't really sure how it worked so I called and asked, they told me they would order and my next was due 19th June , I realised that I would run out of my main Parkinson's meds before that .
So I called the surgery and left a message on the prescription line and asked if I could have a return call , after a week and no call I phoned back and spoke to the patient coordinator who said it would be passed on to their practice pharmacist to be prescribed .
My brother picked up the meds to be told by the shop that the GP has only made a script out for 20 tablets so back on the phone I go to try sort this out and told that I had ben prescribed 200 only in 20th May and to checkback with the pharmacy,
Checking with the pharmacy again they assured me they had only the 20,, at this point I was extremely agitated at the prospect of running out of my main medication and experience days of symptoms.
Ok back to the doctors on the phone, the person who answered the phone looked up my records did a bit of calculating said she would get back to me after she spoke to the doctor, later that day I received a call to say they would be re starting everything afresh with all my medication in order that it all comes at the same time.
The back story is pretty much a simple tale and easy to grasp however, at my GP surgery this seems to be the most difficult task.
I have several medications to take on a daily basis and all are on regular repeat prescription , most are prescribed on a 2 monthly rota except for one which for some bizarre reason I only get enough for 40 days, this was not a problem in the past as I would do the ordering and all was well
since Covid 19 arrived I was asked to nominate pharmacy to collect my scripts which I did... I wasn't really sure how it worked so I called and asked, they told me they would order and my next was due 19th June , I realised that I would run out of my main Parkinson's meds before that .
So I called the surgery and left a message on the prescription line and asked if I could have a return call , after a week and no call I phoned back and spoke to the patient coordinator who said it would be passed on to their practice pharmacist to be prescribed .
My brother picked up the meds to be told by the shop that the GP has only made a script out for 20 tablets so back on the phone I go to try sort this out and told that I had ben prescribed 200 only in 20th May and to checkback with the pharmacy,
Checking with the pharmacy again they assured me they had only the 20,, at this point I was extremely agitated at the prospect of running out of my main medication and experience days of symptoms.
Ok back to the doctors on the phone, the person who answered the phone looked up my records did a bit of calculating said she would get back to me after she spoke to the doctor, later that day I received a call to say they would be re starting everything afresh with all my medication in order that it all comes at the same time.
For what its worth their are major errors in their system, major failings in responses to requests for a call back in the first place, i am well aware how difficult it can be to manage things in these strange times , however i am trying to play my part by being responsible and tying to sort issues as they arise.
just to put the tin hat on it yesterday i also called to check with the Doctor to find out if it is safe for me to go back to work as i also have chronic asthma, to be told the doctor wont get involved.
just to put the tin hat on it yesterday i also called to check with the Doctor to find out if it is safe for me to go back to work as i also have chronic asthma, to be told the doctor wont get involved.
I am perplexed by the whole saga, I am tired of slogging it out with people who have no understanding of this condition I find it difficult enough to speak think and communicate at times due to Parkinson's.
Thank got for the Parkinson's nurses a ray of light in a world of frustration
Living with Parkinson's Disease: An In-Depth Look at Symptoms and Medications Parkinson's disease is a progressive neurological disorder that affects movement. It develops gradually, sometimes starting with a barely noticeable tremor in just one hand. But while tremor may be the most well-known sign of Parkinson's disease, the disorder also commonly causes stiffness or slowing of movement. In the early stages of Parkinson's disease, your face may show little or no expression, or your arms may not swing when you walk. Your speech may become soft or slurred. Parkinson's disease symptoms worsen as your condition progresses over time. Although Parkinson's disease can't be cured, medications might significantly improve your symptoms. Occasionally, your doctor may suggest surgery to regulate certain regions of your brain and improve your symptoms. Medications for Parkinson's Disease: - Levodopa, the most effective Parkinson's disease medication, is a natural chemical that passes into your brain and is converted to dopamine. - Carbidopa-levodopa infusion, which involves the drug being infused into the small intestine through a feeding tube. - Dopamine agonists, which mimic dopamine effects in the brain. - MAO B inhibitors, which help prevent the breakdown of brain dopamine by inhibiting the enzyme monoamine oxidase B. - Catechol O-methyltransferase (COMT) inhibitors, which help prolong the effect of levodopa therapy by blocking an enzyme that breaks down dopamine. It is crucial to work closely with your doctor to tailor a regimen that provides the greatest benefit with the fewest side effects. This blog post aims to provide an overview of Parkinson's disease symptoms and medications. If you or someone you know is experiencing signs or symptoms of Parkinson's disease, please consult a medical professional for an accurate diagnosis and appropriate treatment..
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YOPD comes with so many issues in daily living, unless you have to deal with it or care for someone with it then its a very difficult thing to explain however i will attempt to in this blog. Lets start with one of the basic functions in life is taught to us at a very early age, it may seem a simple function but it dominates a lot of what i do in my life from socialising to networking to sustaining a healthy body. yes i am talking about the simple act of eating! navigating your way through this can cause a lot of stress, even popping out for a coffee with a friend seems s innocent until you have to research where you are going first, firstly are there steps? and if so how many would i be able to manage on any given day? where are the toilets and are they accessible for me ? i find some cups very difficult to handle and awkward to hold , then there is the actual food , sometimes the actual food can be an issue will i be able to eat the food without spillage (depends on how my symptoms are that day) . This is all before i am even out the door, these are all issues that people with disabilities are faced with on a daily basis and in my experience can lead to isolation Why would i put myself through the ordeal some people think there is an element of not caring about ones appearance when you have spots food spillage over your clothing i know for me that couldn't be further from the truth its embarrassing to see how you are looked at in public which brings me back to the point where some people will chose to isolate rather than negotiate the whole routine, leading to mental health issues . i am not blaming the world for my personal situation in fact i am very aware its no ones responsibility but its good to point out these issues This is just awareness a part of my daily life is Parkinson's Advocate it lets me share my day and gives me purpose as well as sharing my struggles with others . wait till i do the blog about male toilets having a tremor and using a urinal can seriously damage your health.
Although this was the 6th congress it was my first, i will bring you more on my experience once i have absorbed the whole event . In the course of the 4 day event i met so many people who inspired me not only down to their sheer determination physically... but also with spirit courage and fellowship. So many with all different symptoms levels of progression many languages and no barriers to hold us back in our drive for quality of life . i have to say thanks to my choir family for their support not only spiritually but also financially covering half of the cost i will be eternally greatfull for the chance to be their. a massive thanks goes to Jean Paul the boss man from radio Parkies who sorted out my accreditation and media pass throughout the event. and not forgetting chris ,Angie, Blake ,Lorie and the megastar that is Eric for hanging out with me and my BFF,s who were there chatting me over the days i was there you have no idea how much it helped with my social anxiety love you guys x Last but not least i am looking forward to let you know that you will be hearing more podcast, videos and talks on Voice therapy with myself and Andrea Malsom it was great to meet up after working virtually for a year.
I haven't really written a blog for some time not through any other reason than I have been dealing with depression. Many changes have come into my life and not always for the best, as I sit here and ponder over the last few months it all seems so surreal like I have been away looking back at myself. Who is this guy I don't know ? where has he come from? how did he get here?.... well that is not so easy to put in words because it's all about feelings! When things change in our life not always so easy to accept these changes for they can leave you with a sense of pain like you have never felt before isolation, loneliness, unworthy and bad are words that spring to mind many nights going over and over issues can lead to a sense of hopelessness and that is exactly how i felt. I have been through many dark times in my life but to lose ones hope has to be the utmost and darkest feeling of all to see no way forward but to exist can destroy you in a matter of weeks. For me the answer is therapy I have leapt from where i was to who i am now and i don't understand how it happened but i hope to over the next few months
After 6 years of dopamine agonists my head is so bad i have no choice but to take the chance to try and clear it. Its a complicated issue so if you want to know more on agonists then google it and you will get an idea of how it became. I am just over a week into the reduction phase and the withdrawals are in, achy body sweats and loads more, it messes with emotions and its not a good co host of stress but thats the problem! How do you stop stress or how do you not react to it.? Now after 3 weeks i finally had a bit of time to record what is happening so far.
I sometimes get asked why I write these blogs and what good does it do? I don't know if its of use to anyone other than me, it is only intended to be my experience of living with a brain disease that is degenerative, I feel the difference year in and year out and the stresses and strains of everyday life have a much greater impact on life, but i am not here to talk about the physical side... i want too relay the emotional side that seems to be ignored and discarded as some sort of non existent symptom. Some of the medication that is given to us to deal with the physical side i.e. ''Dopamine Agonists'' are brutal on your emotions they can change who you are and how you deal with situations but you don't know this until its far too late. in most cases it takes a year or longer to withdraw from them, yet the medical profession do not take it serious enough to stop prescribing them. For the most I sanitize my blogs just for the sake of trying to relay a message without causing any undue upset, but I wont be doing that anymore , I am not a brave man by any means but equally I need to get it out. The last 4 years my emotions are changing, cognitively its so difficult to even retrieve info to relate what I am saying that often some things are taken so very wrong. I have learned to suppress my feelings to avoid confrontation because that leaves me in a very dark place leading to physical symptoms being worsened. Of course I am scared would you not be ? i am not that brave guy who makes a bucket list and gets on with it, i wake up with it hanging over my head like a waiting guillotine not knowing when it will strike , i have been sober for a long time and I have to say there has been moments when that thought has entered my head a way of escaping the emotional turmoil however I haven't and nor shall I wont find my answer that way, another battle too face on a daily basis . YOPD is like any other degenerative disease it takes it all. confidence, friendships, relationships and imposes you on a platform of being ridiculed and misunderstood. Daily being judged for how i speak(Quiet or slurred) ,walk(Slowly), Think and so many other things that neither i or anyone else who has Parkinson's can control. The medical profession look at it as an ''Old persons disease'' and because there is no cure and its degenerative we are shuffled off to the waiting room, Now considering some of us could be here for another 20 years that's a long time to be trapped in mind and body without feeling of value , its a long time to be misunderstood, there's not a day goes by that i don't think of how much as an adult i put into this planet and now I can't...... it shows.
After four and a half years of learning by experience sometimes my positivity can ebb somewhat, The list of conditions i now have are Parkinson's, Asthma, reflux, meralgia paresthetica, and Joint Arthritis and each one exacerbates the other. Their is realization that i wont be able to just grow old gracefully no matter how long this is one battle I wont win no matter how i try to evade it. Over the last few months my nights have been dogged by insomnia and episodes of sleep walking of a kind that has an effect on others around me, it would seem that these episodes are of aggression and that is scary not just for me, i have no control in how they arrive or how strong they become. the control of excess stomach acid is so bad that it is burning my gullet and irritating my lungs so much so that i have a severe cough that may never go, In this covid climate it can be a very annoying thing for other folk to deal with. mental health also is a game of seesaw and trying to keep the balance is nigh on impossible, it robs you of many things abilities that you were once mastering are gone and it leaves a massive gape in my soul, it affects friendships , relationships self worth , it brings resentment into your life and basically it saps the life right out of you. Today is one of those days , today is a day where i hate Parkinson's so much where i hate the fact that my self independence is slipping away and are are no longer an asset in this world. Its a day where i want to be free from this horrible disease that s destroying my body bit by bit however i am trapped within. That being said, i cannot change anything and i will get back up and keep trying....
This was supposed to be an end of year blog! having a look back on all that has been over 2020, but in all honesty i really cant face going over some of it and we cant change it, so my 2020 review is more of a lets make 2021 a better year, a year of making memories in this ever changing world spending time with my beautiful Susan spending more time with my Family and friends for all who have supported me over 2020 thank you, for all the people ii know, take your time enjoy your year and i give you nothing but love x
If i were to try and describe what Parkinson's was it could be as simple as telling you that the part of the brain(substantia nigra.) that controls smooth movement over all actions is dying then that would be a fair account. however it really is so much more, A typical day for me can be as extreme as not being able to walk or as good as just stiffness and aches, having to negotiate anything from bus drivers with attitude to Que's for toilets missing busses, having to leave places because they don't have the proper stuff for me to be able to be independent is not unknown. However I can tell you how it feels to piss yourself whilst trying to undo a button it's degrading, i cant tell you how bad it is to tell a DWP assessor that you have trouble cleaning yourself because your hands wont work today, you really have to remove all your dignity and self worth too prove that you need some extra help to try stay independent, it would seem that a neurologist diagnosis is really not enough. There are many things i cant do but there is loads i can do and one of them is looking after my mental and physical health not always easy , however i really am so fortunate that i have some caring individuals who i rely on and i thank you all . i really don't think this pandemic wont go away anytime soon and we all have to learn how to cope with it and at any cost , Christmas will be a very different affair this year , i used to love the Christmas gigs with the choir that really made the year for me but i am neither fit enough or able enough to do this now.. I hope next year will be something of a better summer for us all and if we do what we know is right then it will be better, someone recently asked me why i write these blogs?, the simple truth is i didn't know what else to do , the cold way the diagnosis was delivered will live with me for ever, again i was lucky enough to have the support of 2 friends that day, but for me writing it all down makes it liveable makes it much more of a real thing and not an exaggeration it allows me to accept things at my own speed . Fear plays a massive part in all our life's but when you are presented with a diagnosis and you know it will get you its just a matter of how quick or how slow, then it makes you look at this world in a far different light. Today and right now are the only things that matter,,,, yesterday is long gone and tomorrow has not arrived yet so living in the moment is the only thing i should be doing and that's what i will. of course 3 years down the line there are significant changes , less sleep more fatigue stiffness is a massive change i just deal with it as an ongoing health management. This week Parkinson's uk launched a new media drive for help , no money is being raised to help with research please if you can donate to PDUK it would go a long way to help.