Diagnosis Journey

Hello I’m Jon, 65 year old artist and father of 3 sons . I’ve been on the journey to diagnosis for some time but today I’m a big step nearer to either a verdict of Parkinson’s or MSA-P, (with the help of an excellent and sympathetic NHS neurologist). I’m here to meet and talk with fellow folk on this tricky path.
I’ve lots to learn.
I’m told I’m tremor dominant and that is a reasonably good version ‘cos it may be more slowly progressive? Or perhaps more likely to respond to drugs/treatment? Lots of information was coming my way at the time so I’m keen to know if this rings true with others?

What is keeping me awake at nights is talking about the future with my partner. I truly imagine that to discover your loved one has PD is very difficult to face. And the last I want is to become a life-limiting and demanding husband.
My sister has advanced Multi -Systems - Atrophy and I’ve been sharing in her care for the past 2 and half years. So I have some idea of some of the challenges ahead (although I understand everyone’s neurodegenerative condition is unique to them).
I’m feeling like some of the things I do and love - drawing, playing music, fell-walking, are slipping away now - I’m less good at them - but to become an interruption in my partner’s life too is seemingly the hardest thing for me to take.
To any carers out there, how is it possible to lessen the load? I’m fairly early stage so there’s time to plan a bit. What would be good advice for a newbie like me?

Thanks for reading!
J

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Hi and welcome to our forum, @J0nath0me. Our members are all very supportive and friendly and they’re sure to be along soon to say hello and talk to you about their own experiences.

Yes, as a carer yourself, you do know the challenges. You know it’s not an easy path and you also know the rewards that come with helping someone cope with life-changing conditions. I’m sure that others here will relate to how you feel about this and it will be good for you to hear from them.

When you’re creative you’ll always find ways to create and, if you look through the forum topics, you’ll see the many talents our members have and how they’ve adapted over time. With your obvious insight, empathy and ability to express yourself, perhaps communication is the best way to begin this journey with your partner.

I’d encourage you to read through our website and if you need someone to talk to, please get in touch with our helpline advisers on 0808 800 0303.

I’m looking forward to learning more about you through the forum.

Best wishes,
Janice
Forum Moderation Team

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Hello Jon and welcome to the forum and your interesting post given your circumstances. I know you were asking particularly about the experience of carers but I, as one with Parkinson’s, would like to make a comment or two if I may.
First you mentioned that you feel your creative side is slipping away and maybe that’s true but equally it doesn’t mean there is nothing you can do. There is quite a lot of evidence to suggest that people with Parkinson’s demonstrate increased creativity and a quick search using Parkinson’s and Creativity will bring up a lot of papers that might be interesting for you to look at. A key point to focus on I believe, to live well with Parkinson’s is not to concentrate on what you can’t do or no longer have but what you can do and the skills you do have. If you can try to think outside the box and you can often find ways to continue to do what you always have with a few changes. Asking on the forum is always a good idea since others may well be having similar problems and have come up with solutions - I recall for eg a number of posts from guitarists. Also just because you can no longer do one thing remember that could be the time to try something new that gives you equal satisfaction. For example you mentioned you enjoyed fell walking, perhaps try nordic walking which I took up a couple of years ago. It is a particular technique and is harder work than ordinary walking so may be a substitute if you do have to give up the fell walking or more likely, the easier routes no longer satisfy you. I’m talking very generally here of course but don’t believe you are just losing things that give your life meaning because the reality doesn’t have to be like that - with or without Parkinson’s life is still what you make it, it is still your life so why not make it the best you can.
I was sorry to read of your sister’s diagnosis that is a very difficult and debilitating condition but has clearly given you an insight and understanding into the caring role and you will know how hard it can be. I would agree with the comments Janice has made about keeping the lines of communication open. Parkinson’s in most is slow so there is time to adjust and adapt to changing situations. There has recently been a post on the forum that would seem to reflect your fears and if you are interested this is the link End of relationship with deep love
Please try not to get too far ahead of yourself. Parkinson’s shows most of us the best way is to live in the here and now, in the present, enjoy today and don’t worry too much about the uncertainties of the future which may never happen - you can only plan so much and if you spend all your time worrying about that you miss the pleasure of today.
I’m not sure how much sense this will make to you just now but I hope you are able to take something from what I have written which will help you turn the negatives into positives - not always easy but worth the effort.
Tot

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Hello Tot and thanks for your detailed response. Today I’m perhaps looking too much at the negatives and feeling anxious about the future.
Of course, having creative skills is a lucky plus and I think I can rely on this to provide me with alternative angles to be expressive. Creativity is about working with constraints rather than against them- ha! I can hear the teacher in me coming to the fore… I used to produce very detailed work but I’m seeing how more expressive/gestural techniques could be the way forward.
As for the Great Outdoors, I’m interested to hear about alternative walking approaches - my feeling is one of ‘use it or lose it’ and although adventure, distance and difficulty are becoming less important as I consider where and when I go hiking - the ‘being there’ feeling is still possible. I’ve had some bruising falls out there so it’s maybe about being realistic now I understand more about why this happens!
J

Good morning JOnathOme … My first thought is take one step at a time. First find out what illness you are dealing with. So get a diagnosis you are happy with, I have Atypical Parkinson’s. This was diagnosed by a positive Datscan. So I know what I am dealing with. I also have Peripheral Neuropathy & arthritis so there are a few cross-over symptoms. My main difficulty is mobility, that’s standing still & walking. So I smiled when I saw that you liked “fell walking”. My ambitions are limited to walking from my flat to my car. But on the positive side I can type perfectly.

My other thoughts are more practical ones. For example are you living in your forever home? I moved to a ground floor flat 3 years ago & find it ideal. Trying to move now aged 69 would be far to difficult for me. I am single & you or not so & you clearly have your partner’s wishes to consider.

As far as Parkinson’s goes there are many different types & different difficulties with each one. It is mostly a very slow process with good days & bad days.

Best of luck & please keep us informed should you wish to do so.

Steve2

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Thanks for the reply Steve,
‘Fell walking’ has all the right words I guess. :scream:

That’s interesting to hear - yes I do have a partner to consider when thinking about plans for the future. We’ve started thinking about an alternative place to be that’s more future proof. Currently live in three storey terraced house! It is however very close to everything - particularly the health services like docs and hospitals.

Jon

You are starting your journey with PD with an advantage – that you are already fit. Find out about exercise for Parkinsons asap. Exercise is key to keeping the symptoms at bay. If you are in the early stages, then you could have ten years or more of a good quality of life ahead of you with the help of drugs and exercise. Above all, live in the present. If there is a local PUK group, join it. Both you and your partner will get an idea of what the future holds for you, if you see how other people cope with the condition.

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Hello Jane_L,

And thanks for getting back.
What you say is just how I’m feeling today - fortunate to have succumbed to this disease at a time when I’m otherwise fit - and also because my instant reaction to the diagnosis is to do more exercise and to keep this thing at bay for as long as I can.
I’m looking up my local PUK group today too!

You may well surprise yourself as I have done. Two years ago after being stop start with an exercise routine which I have written about here on the forum - this is a link to the first one Exercise and Parkinson’s and I have recently written a concluding one - I began working with a personal trainer. Starting with the simple aim of maintaining what function I had and working mainly on balance, core and strength, my mind set has now totally changed and I am looking to improve. It may not be linear in the way of people getting fit without Parkinson’s, I describe it as more zig zag but I have surpassed any and all expectations - In a couple of weeks I will come to the 14th anniversary of my diagnosis and a couple of months ago, on my 66th birthday, I was jogging, not far but jogging nonetheless. I am fitter and stronger than I have been in years and now do 3 x 1 hour sessions per week which are very varied and have become an essential part of my week. So with the right support there’s nothing to stop you reaching for the stars even if it may not be in the way you envisaged. Good luck to you in whatever you end up doing.
Tot

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Good evening Tot … I don’t think many of us here have £60-£90 a week to spend on the personal trainer you mention. But whatever works for you. I suppose you need the weekly discipline & commitment a booked personal trainer provides.

I have found of late that any additional exercise with my brand of Atypical Parkinson’s is a real struggle. I still play indoor bowls 4 days a week
(2 hour sessions cost £4), during which I have to “walk” 800 yards in total. I used to do a 1 mile walk on my non bowls days but have had to stop. All very frustrating as I have played very competitive active sport into my early 60’s, which is only 6 years ago.

It is obvious that we are all different in our Parkinson’s struggles.

Best wishes
Steve2

we are indeed and we can only go with what works for each of us. I know it’s not a cheap option most of my PIP is spent on my personal trainer - which i think is using it for it’s intended purpose but the reason it is affordable is that i paid off my mortgage some years ago, I sacrificed quite a lot to do that so now don’t have rent or mortgage which makes a huge difference. I paid in and now get a reasonable occupational pension. It wasn’t what I intended to do once retired but having spent years being sensible I feel fully justified in spending on myself as I do especially when it has brought me such good results and i will gve up other things to keep that going for as long as I can. Make no mistake however I can afford it but it still takes a chunk out of my income and I do have to budget carefully for everything else. So I’m still making sacrifices and difficult financial choices and will probably be doing that for the rest of my life. For me when its brought such good results I will prioritse that over almost everything else for as long as I can. I appreciate you were not critising my extravagence that most can’t afford but it has been hard won over many years for me to be in the position I am now. I tried other things and other ways but none have brought me what this has so I would be foolish to stop it if I can find the money.
Tot
PS it dorsn’t pay to be too financially secure I now pay income tax you can’t win lol

Morning Tot … No criticism intended. Sorry if it read that way. Probably jealousy on my part as I don’t have that sort of free money. One advantage of my playing bowls 4 or 5 times a week is the saving on heating costs in my flat. To date this year I have not had the heating switched on. If it does get cold I guess I will just go to bed, I have a TV in my bedroom so no great hardship.

Today is a bad day for me & my legs feel pretty rigid. I am seeing my Parkinson’s nurse in an hour so I will mention it. In particular I will mention my flat’s car park
which has the potential to become an ice rink if we get a freeze. Risky for me now that
I am taking blood thinners.

Oh the joys of getting old with Parkinson’s.

Best wishes
Steve2

No Steve2 I didn’t take your reply as a criticism at all but just wanted to make the point that although I can afford to pay for a personal trainer now, I do recognise it is not a cheap option and that I still have to budget. I also choose to prioritise the personal trainer over other things I might otherwise spend money on, for example I don’t take many holidays, mostly they are at home holidays, I don’t spend a lot on clothes or regular nights out and so on. In 1986 I left my job and moved to Manchester to do a degree and then retrain so that I could earn more and hopefully be in a position to buy my own place. In the end it took a total of 7 years to achieve that, using all my savings to keep my head above water and it took a further 3 years of hard saving before I was able to buy my flat - I was 39. I was determined not to have a mortgage when I retired at 60 and again made choices about my spending to achieve that. I was 52 when I got my Parkinson’s diagnosis and then the pension rules changed and I couldn’t get the state pension until this year aged 66 - which meant rethinking my finances all over again. My flat has gone up in value considerably but I am paper rich and I will get no real benefit from it in cash terms as the money will be needed to pay for any support my Parkinson’s might demand. That has caused more hard thinking about my finances and options open to me that will safeguard the only asset I have and most won’t if I have to move. People can be very quick to make assumptions and as you say £60-90 is a lot to pay out but I have worked very hard for a long time to get where I am today and the benefit to me of having a personal trainer has been beyond any and every expectation I could have had - which is why I will continue to prioritise this in my spending over and above holidays, nights out etc. I just felt I needed to make the point that it’s not been easy to get where I am today, I’ve had plenty of low paid jobs and survival money in my time but made deliberate choices over the years and it is now paying off. You don’t have to have a personal trainer 3 x pw as I do. You do what you can afford. As with everything it is about choices but it’s never been easy and I don’t take it for granted.

I hope your meeting was productive and that your day got a bit better. I tend to hibernate if its icy as I gave up driving when I left work but I can appreciate you don’t want ice to stop you getting to your car if you can still drive.
Yet another thing to make choices about. Sometimes it feel like I spend my life living with Parkinson’s and deciding between various options - it certainly cuts down on one’s ability to be spontaneous lol. All we can do is keep going as best we can I guess,
Tot

Hi, I am new to Parkinsons too, having been diagnosed this year. I have been noticing tremors for a few years now. In my case the symptoms are mild at least in a physical sense though have struggled with anxiety issues. I play a complex war game with my brother which involves moving intricately small pieces representing various types of military units around a board. My tremors make this difficult for me and I now often have to ask my brother to move pieces for me. This is the only real physical impairment thus far but I know this wont last and it will get a lot worse.

Like you Jon I fear for the future, but in my case it is because I live alone in a flat up two flights of stairs. I fear being unable to cope on my own with every day things and no one else around to help me. For the time being it is easy to avoid thinking about it too much but at some point I will have to face that difficult future head on. For one thing I am a Type 2 diabetic who at some future point might need insulin injections to keep me alive whilst my PD symptoms are likely to worsen to the point where I will no longer be capable of administering such things myself. Independent living might become impossible yet there is no one in my life with the time or space to take me in as my carer. The implications of this terrify we which is why I am reluctant right now to even think about it, and am doing so now only to express the fears I have for my future. I fear my days of living independently could be numbered and I could end up in some sort of institutionalised adult care environment at far too young an age. This is probably my greatest fear, my total loss of independence.

I might have to give up my home. Certainly at some point I am likely to lose my license though I am fine for now. And probably have to give up working at some point and hope i can make it to retirement before that becomes necessary (I am 58) In the meantime in my retail job I have stressed the medical value to me of strenuous exercise and so quite often spend many working hours in the car park pushing large trains of shopping trolleys around. Though that is no fun when it is chucking it down, lol. I am lucky that my employer is very supportive.

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Good morning srb7677 … My advice is to live for now, not for the future. Deal with any health problems if or when they occur. None of us know how our Parkinson’s will develop.

Like me your symptoms are fairly mild, enjoy your life.

This is not a life threatening illness & we should be grateful for that. I had aggressive prostate cancer 10 years ago, now that was scary. Parkinson’s is a pussycat by comparison.

We should eat healthily, exercise as much as we can & take responsibility for our illness[es]. With all the knowledge at our fingertips on the internet ignorance is no excuse. We can know as much as the experts & only we know how we feel.

I would add that “worrying” or being “anxious” will not help you. You need to have a positive mindset.

Best of luck.
Steve2

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I think you have a lot to deal with there. I’m sorry that you seem so anxious about the future. It’s difficult not knowing how PD will creep up on you. It’s a can we can kick down the road for a while. But only for a while.
Have you looked into PIP and other financial support so you don’t have to lose your place?
I imagine that living alone gives you lots of opportunity for thought - and this must mean you get to dwell on the down sides of life. If the symptoms are mild now then my feeling is make hay while the sun shines. Try and do some more of the things you enjoy and that bring you into contact with people.

It’s good to have this forum here so we can feel less isolated.

I’m lucky, I made it to retirement (just) before the symptoms began to get in the way of things I like to do. But because I like to draw and paint I can always find a way of being busy and that is validating.

I wish you well on your journey.

Jon

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Hello srb7677
The replies you have had have given very good advice and there is a lot of truth, I think, in what they have which very much mirrors my own thinking. However I would like to take a bit of a quite different slant on things if I may and that is you say you were diagnosed this year. In Parkinson’s terms that is but a nano second and it comes as no surprise to me that your feelings are all over the place. You will find as you settle into life living with Parkinson’s, and you will, that you can only plan so much and worrying about the uncertain future we all face - and actually is true of everyone except it is perhaps brought into sharper focus with a diagnosis like ours - achieves nothing because it might never happen in the way you are imaging it. I can entirely understand your fears but you will find, as many of us here on the forum have found, that is one of the biggest challenges we face is in our mindset. Tje Parkinson’s brain (as I have come to think of it) is loud and bossy extremely difficult to ignore. As I have written before on the forum, the art or skill or whatever you choose to call it, is in finding ways for the quieter, logical and rational part of your brain to grow stronger and able to challenge the negativity of Parkinson’s brain. It’s not easy, doesn’t always work but the more you practise you will find it can give you a strength to cope better with the cards fate has dealt.
I too live alone and was diagnosed almost 9 years ago. Over that time I have found I am much stronger in finding a voice that I make sure is heard. Others may know about Parkinson’s and be able to offer advice, but it is happening to me and I’m the one who knows how I feel. When you live alone you get used to the assumption that you have a partner or carer and the frequent disbelief that you manage perfectly well. Almost everything you read is written as if for a couple of some description and even though i have always attended my hospital appointments on my own since at the moment my cognition is fine and I am quite able to understand what is being said to me, there is always two strategically placed chairs. Finding that voice gives me strength for whatever my future may hold. It is one of the ways I use to live positively with Parkinson’s and you don’t need to read many of my posts to know how important that is to me. That is my way and with a bit of time you will find your own way to live with it too. You’re just not there yet that’s all. It takes as long as it takes but things will settle. For now take it slow and steady, one day at a time and try to make today the best day it can be - because again as I have said on the forum many times, , this 24 hours is a once only, it doesn’t come again.
Tot

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Thankyou Tot, I think what you’ve said here is very useful and thoughtful for me too.
I also find this post-diagnosis period a bit of an emotional rollercoaster. I have some very bleak days and some quite remarkably happy and relaxed days. There seems no rhyme nor reason. It may be a nano-second or two in the scheme of things but it seems to have slowed time down to allow spaces for anxiety and worry to get a foothold.
I still have a part of me that is in the space between reporting symptoms to the GP and more recently, confirmatory visits to the neurologists. I could still imagine that this would be a virus or a deficiency of some kind that the amazing human body would be able to correct or heal from. (Disbelief). And then I found myself thinking it is very early so I can hopefully count on many more good years before the disease gets a grip. (Denial). Then I think that it’s so much better to know the devil etc than to be in the dark (Acceptance).
Plus some why the heck me? I have my sister to look after… I mean come on!! (Anger).

What I do notice is that this emotional ride is very costly on energy and motivation - I look forward to being more on the level I suppose.

Anyways - thanks again Tot. I really appreciate the time and consideration you put into your messages here.

Jon

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