My name is Hugh. I am 46 and have been suffering with a tremor in my left arm for just over a year. After GP appointments, an ultra sound, Xray, blood tests, nerve conduction test, an MRI and finally a DAT scan, I have finally received a PD diagnosis from the neurologist over the phone lat week. Hopefully this will be followed by an appointment to see him in person in the next few months. To be honest I knew it was something more serious than a trapped nerve as the GP had suggested from day 1. The first neurologist I saw before diagnosis though it had been caused by carbon monoxide poisoning I got at work back in the late 1990s, but the neurologist who gave the diagnosis thinks this was too far in the past and it is just bad luck. I have told the neurologist that I am keen to be involved in clinical trials, but he was quite dismissive and said I was not suitable. He also said I should stay away from medication as long as possible. I understand this makes sense, but the tremor is very tiring and at times makes doing things like typing on a keyboard difficult. I am also self conscious of it when dealing with customers or going in shops etc. I have been taking a couple of drops of CBD oil every day for over a year now to help with being low mooded, which I realise now may have been a symptom. I also take magnesium, vitamin D and krill oil every day which we heard may help. I was hoping for some tips or advice on what to try at this stage to try and keep things at bay as long as possible and make life a bit easier. I am struggling to get my head round things, but have to admit I am worried about what the future now holds as I have always been a very practical person and have spent the last 26 years building up my garage business repairing motor vehicles. Luckily I do have people working for me so can still work whilst doing less practical work, but my worst fear has always been not being able to do the things I love and at this stage it is hard to see past this, although I do appreciate there is no common progression. Thanks for reading, i appreciate any advice anybody can offer.
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Hello Feen and welcome to the forum. That is quite some first post but actually more normal than you probably know. The reaction of many is succinctly summed up in your post a mix of wanting to know everything on the one hand but dreading what you might hear on the other, relief of sorts on one hand that you have a diagnosis and fear on the other at what your future holds.
The early days following diagnosis are hard, especially when like many you’ve already been through a number of hurdles to reach this point.
First one quick point that immediately leapt out at me. No disrespect to your neurologist but I don’t see how he can just say you’re not suitable for clinical trials when there are a myriad of different types, so if you are interested the information on the Parkinson’s UK website would be a good starting point. However, whilst I entirely understand your reasoning, I would encourage you to just stop for a mo and draw breath. Your Parkinson’s is going nowhere and there will be plenty of time to get as involved as you like. The crucial thing at this stage is to get used to the diagnosis and sort out your immediate treatment options. This unfortunately is not as straightforward as you might think. Parkinson’s as you will discover is a complex condition, affecting everyone differently and is generally not well understood, partly because of this. Many know nothing about it until it comes to them and those that have heard of it tend to think tremor. This means that most are on the back foot before they start following diagnosis and resulting in a mixed up post like yours. I think the best thing I can do just now is give you a few pointers that may help you sort things out a little and move forward.
- Be aware of information overload. Resist the temptation to read everything in sight at best you will end up more confused and at worse you will feel like your life is one big black hole down. Stick to what you need to know now.
- In most, it is a slow moving condition so you do have time to make decisions.
- Medication is a massive area full of conflicting opinions. It is the one area where, in my opinion, the individuality of Parkinson’s is most keenly felt and whether to start or delay medication is a key decision. For me the key thing is quality of life. Given the uncertain future I face I choose to make sure I have the best life I can now, it is today that is important not next week, month year or even ten years and I deal with each challenge as it arises. It has been 11 years since my diagnosis and I have been on medication from the beginning and it definitely have me and continues to give me a good quality of life. Be guided by your medical team and look into options brought to your attention but ultimately you need to go with what feels right to you. A note of caution there is an element of trial and error so just because one medication doesn’t suit you don’t assume nothing will.
- Another big question most people face is when and what to tell people. Again this is a decision only you can make and when the time is right for you. Again my personal view is that it is easier to live with Parkinson’s when people know. It stops people wrongly second guessing, almost no-one thinks neurological condition and it is easier to have some say in how you want your condition to be managed. It’s not easy to do but once done it’s old news.
- Take heart, you do survive this period where everything is topsy turvy and emotions are all over the place. Things do settle down and you will find it’s not all bad and you can have a good quality of life with Parkinson’s. For me there are two key ‘tools’ to living with Parkinson’s and they are it is always me, Tot, first not the Parkinson’s and crucially I work hard to stay positive. Not always easy and I have my moments but it works for me. Give yourself some time to find what works for you.
I realise there are not many practical answers to points you raise
but I hope you will be able to use some of my comments to help you decide with a bit more clarity what you need to do to get through this early stage and get on with the business of living your life in which Parkinson’s happens to have a part.
Thanks for taking the time to leave such a detailed and honest response. I suppose the hardest thing is trying not to fight it as is always the instinct, but to adapt to it. The trouble i have is that i because of my practical background. I like to know the wheres and why fores and how to fix something that is broken and obviously it is not quite that simple. Thanks for your advise i will take it onboard.
Hi Feen if to fight is your natural instinct then fight away, plenty of people on this forum choose that route and do well on it and if you think about how the media always portray things like Parkinson’s, cancer, MS etc etc people are always described as suffering with… or battling… it’s not surprising that’s what people do. Personally I don’t see it as a fight. I have Parkinson’s and at the moment there is no cure therefore ultimately as a battle I’m never going to win so to me that’s wasted energy. Nor do I consider I suffer with Parkinson’s and anyone who describes me in that way is quickly put right. I am Tot. I have Parkinson’s. Fact. There is no cure Fact. So what am I supposed to do if I don’t fight, just give up? No chance. I use my energies to stay positive, to look for ways to neutralise the impact of the challenges Parkinson’s throws into my path because Parkinson’s is only one part of my life It’s not me. You could argue i am fighting just choosing to view it differently but to me its about finding ways too live the life I want and finding some kind of peace to do so with old parky in tow. Whatever way you
choose to live with Parkinson’s will be right for you and it will happen with a bit of time and patience.
Tot’s reply was good, particulaly >>
"For me the key thing is quality of life. Given the uncertain future I face I choose to make sure I have the best life I can now, it is today that is important not next week, month year or even ten years"
I’ve recently altered my dosage of Madopar, and can now sometimes enjoy periods, of being near to normal. I have been told the sooner you start medication, the sooner it will become ineffectual, but how true this is, in a condition which is not fully understood, I’ll wait and see.
We all know how the ‘book’ ends for the majority, so lets make the most of reading the first chapters!
Thank you phil_63 I can only tell folk how I see it, I don’t assume everyone thinks the same but it was lovely to know something struck a chord. I loved the book analogy - inspired and may well quote you some time if you don’t mind. Fits in with my own thinking very nicely.
hi Feen i was dx in 2013 iam 85 in sept i have all the usual tremors in left hand and other pd afflictions but i try to take each day has it comes and try to be positive unfortunately life is a B and i was told i need heart valve replacement but the battle goes on so keep your pecker up who knows whats round the corner regarding treatment .
Sorry been away and not been on here for a while. Thanks for your input. I have been speaking to my GP today and he said the same about starting meds too early. The problem is with no set progression, how early is too early.
Sorry to hear this. If I get to 85 I will be well chuffed as we say in Yorkshire
Feen wrote:- “The problem is with no set progression, how early is too early.”
For me, once it interfered with my normal life to the extent it was starting to distressi me, it was time to act. Everyone has a different level of tolerance I guess, much like sensitivity to pain.
What a great response I will back that to a word
don’t give up Feen. I’m twelve years past diagnosis and in my NQT (2nd year) as a newly qualified teacher of computer science. You have a life and right to adjustments!
thx Tot excellent points
I’m new to this forum but not to PD; was diagnosed twelve years ago. I’ve carried on with work, pushing for adjustments. Decided to become a teacher a few ago and went through schools direct. It was demanding, sometime de-motivating but i stuck with it, and with some additional time from a fantastic ITE programme i got my PGCE and QTS qualifications last year. This year has been another story - have just been ‘non-renewed’ for Autumn 2021 from a role i thought was supportive. It just happens that i put through a request for leave for my in-person neurology appt and rec’d the non-renewal news four days later. I’m very interested to hear from any teachers or other professional workers who are experiencing shall we say ‘non-continuation’. There are some huge issues here around the need for further education on PD and the obligation of employers to make reasonable adjustments. We do it all the time for EHCP and SEN students - why won’t this be an avenue for teachers as well!
I found this most interesting. I was employed by the local council in a professional capacity and was well supported by my managers, I felt, with adjustments being agreed up until I left my post having opted to take voluntary redundancy. What’s more I know of other instances including where workplace advisors were brought in and to the best of my knowledge their advice was followed. I appreciate our roles were not the same my own always fell into the shortage category and the option of voluntary redundancy would not normally be open to me - this was a one off desperate measure to save a lot of money - so to an extent it could be argued I was protected. Others were not however in my line of work and they did get support which does suggest at the very least inconsistency in the system and in either different sectors or areas. An interesting debate to be had by wider than this forum if change is going to happen. I suspect at the moment it is very low on the political agenda if it is there at all but, as they say change starts with the first step - maybe your post could be that first step. I wish you well whatever you decide your future lies.