Newly Diagnosed ... is pushing back worth the effort?

Hi. I was formally diagnosed just a couple of weeks ago, at a point which my Consultant described as “Barely Diagnosable”. Which at 67 is obviously a lot better than it could be! :slight_smile: And no meds yet.
But (… there was always going to be “But …”!) I work full time with computers, so I am constant typing. The part of me where I notice Parkinson’s most - the reason I started the process of finding out what was going on - is my left hand. My left hand typing has becoming both slower, more difficult, and really quite frustrating!
So far, being, as my wife tells me, far more stubborn than is good for me, I’ve continued with the approach I adopted before diagnosis: Forcing myself to use my left hand as much as I once did, while putting up with the frustration. (The alternative is to allow my right hand - which is currently a lot more agile, to take over some responsibility.)
Do. Do you think such stubbornness has any value? Might it help slow down further changes in my left hand? Or should I accept it, avoid the frustration, and become a one-handed typist - hopefully, for a couple of years, before I finally retire?
Thanks
Martin

Hello Martin B
It’s a rare day indeed when someone new to the forum writes a post that makes me smile, but yours did. You asked if stubbornness has any value. I know you were asking in relation to your typing skills but for me personally, being a bit stubborn does have its part to play in managing symptoms but like everything else with Parkinson’s the bottom line is its a judgement call for the individual. I, for example, flatly refuse to give Parkinson’s top billing and if anybody does so in my hearing they are quickly put right, diplomatically of course, but left in no doubt. It’s not being unrealistic rather it is just the opposite; it’s about accepting some change is necessary and appropriate at any given point in time and being honest enough with yourself to admit it.
To come back to your typing question, I think it depends on how you view it. I don’t know if it will slow things down in your left hand but the bigger question for me would be how much chaos is the frustration causing - is it making you short tempered, is it slowing you down in terms of completing a task, has your accuracy been affected, does it really matter if you are a one handed typist if you can get the job done more efficiently etc etc. There are lots of exercises on the Internet specifically for Parkinson’s perhaps try some of these which may help your left hand with typing rather than trying to use the typing as an exercise in itself. I know this probably raises more questions than it answers but stubbornness only has value, in my opinion, if it gives you something without making everything with it harder - if persevering with your left hand keeps you going so well and good. If is causes frustration because it slows you down, affects your accuracy, reinforces the notion that you are not the typist you were or whatever then is it worth it when you can be as efficient as you ever were with one hand?
As it happens I earned a living by typing as a main part of my working life for many years. I learnt while still at school on a Remington manual that was physically demanding and with a teacher who could spot an e overtyped e on a c for example at a hundred paces and whose mantra was accuracy before speed. You get the idea. If you saw me type now you’d not believe I was once a proper touch typist. These days not only am I a left handed typist (my dominant hand) but I invariably use a stylus, I’m more accurate if I use that and faster, and sometimes use other methods like swipe typing. I am beginning to practice voice dictation too so I have another string to my bow. The point is to me the important thing was to be able to keep typing - mind you the lengthy posts of most of my replies might make people wish I had given up on the keep typing bit but each to their own - how I achieved that didn’t matter and there are lots of options other than two handed traditional typing. What you need to decide is what matters most and only you can answer that. Being honest with yourself about what matters to you and finding ways to achieve that is arguably more important I think, than stubbornly carrying on with something that no longer works so well.
Hope that makes some kind of sense to you, in my head it does but your interpretation may be entirely different; if nothing else perhaps it will bring a different perspective to your thinking.
Wishing you well with whatever you decide.
Tot

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Hello MartinB, congratulations Tot also, couldn’t have put it over better than that myself and very explanatory too! My exact feelings, don’t sit back and think you are being stubborn, you have to fight back and say I can still do what I want to do. Life does not end with Parknsons it is just a new beginning, learning how to win it over and as I say fight back to find alternative ways of coping. I’m not saying it will be easy, but eventually you will have achieved something you have beaten and say “I’ve done it and proud of it”!

Welcome to our forum, @MartinB. What a great attitude you have. Stubbornness could also be seen as positivity and that can never be a bad thing. You may find Robin’s article about a positive attitude rings a bell and inspires you.

I see that our friendly and supportive members here have already answered you about how their attitude has helped them cope with Parkinson’s. If you have questions at any time, don’t forget our Helpline at 0808 800 0303.

Best wishes,
Janice,
Forum Moderation Team

Excellent article JaniceP thanks for highlighting it, sounds a lot like me but much better written :grinning:

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Thinking on my reply to the post by Janice, I thought I should clarify my view. Although I identified strongly with the article highlighted and very much reflects my own approach, I hope people who read my posts have always understood the following;
That my way isn’t everyone’s way and whatever approach the individual uses is right for them is right by me
That the positive approach does not mean I see everything through rose coloured specs. Rather it is about being realistic and honest about change and when this is needed and setting about ways to live with the change that keeps my overall and most important perspective that I am Tot first who happens to have Parkinson’s - if I am stubborn about anything it is not to be defined by my condition.
I have always I hope made both these points clear in my posts. Yes I identified strongly with the article because my life experiences not just Parkinson’s has made me the person I am. Everyone’s life experiences are different and make them who they are . However anyone with Parkinson’s see things a battle, a journey, handed a duff card or like me just a part of me now is OK. At the end of the day our Parkinson’s experiences will shape us as much as any other. That as they say is life.

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Hi Martin,

I too had (still have) problems with typing and have to say that I totally agree with everything that Tot has said on the subject - in fact this post is a little redundant in as much as it is only repeating what has already been said very eloquently and succinctly but it is a subject on which I feel quite strongly so I figured I’d post it anyway.

While I’m most definitely not knocking positivity - in fact I work really hard to have the best life that I possibly can with Parkinson’s - I didn’t feel positive in any way when I was diagnosed and to make matters worse, I measured myself negatively against some idealised view of how I felt I should respond to the diagnosis - it was a very damaging experience.

I wanted to be able to say that I was a fighter facing adversity head on but in reality I was, and still am, a rabbit in the headlights bumbling through life as best as she can.

Over time, I have come to accept the diagnosis more rationally than I originally did but I still have days when I feel very down and days when I feel very angry. The difference is that I now acknowledge how I am feeling at any point in time without embarrassment or apology. I don’t mean that I sit and wallow (ok, sometimes I do :woozy_face:) but if I am feeling down or angry or scared or fed up then it is important for me to know that it is ok to say so.

I really enjoy reading others’ accounts of how they approach Parkinson’s and I take ideas and strategies from every account I read but I always read them knowing that people are representing their own approaches and their own views and that no one view or emotional response is right or wrong - I firmly believe that all of our responses and emotions, including emotions such as sadness and anger, are equally valid.

We are all different. We are all wired differently and we all have different resources to fall back on in terms of: our life experiences, our basic beliefs and values, our financial situations, the support we have available to us and even where we live, and all of these factors will interact with the different ways in which we experience Parkinson’s at different times.

I’m going horribly off piste, as usual, but as has already been said, what I’m trying to say is that there is no right or wrong way of feeling about and responding to a diagnosis of Parkinson’s.

Wishing you all the best with finding the way forward that works best for you.

Jx

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Hi Tot - and everyone else.

Thank you all for your warm welcome, and your sage advice. And sorry for not replying sooner: I sort of assumed I would get an email for responses, and when I finally decided to check anyway … I couldn’t get my password to work! So much for the thought that, after 45 years working with them, computers might, perhaps, start to get a bit intuitive. :frowning:

Especially thanks to @Tot for the advice to (and I quote): “… flatly refuse to give Parkinson’s top billing”. Thinking about it, that probably gets you to the similar place as my “Be stubborn”: Someone “With Parkinson’s who needs to type” will expect … possibly anticipate? getting worse at it. Someone “Who needs to type … oh, and by the way, l’m a bit slow because of Parkinson’s” will … type! In whatever works best for them at that moment. Which for me, now, is with me left hand taking a full, if slow, share of responsibility.

Two other truths became clear to me as I read through your posts: In IT, accuracy doesn’t matter as much as in … proper typing - letters, contracts, etc. For a start, if you spell something wrong, the computer doesn’t laugh or criticise. It says “I have no idea what you mean - try that again”. And speed? Many times over the years - decades! - I’ve had to tell myself “If you’d typed less & thought more you wouldn’t have made that mistake”.

And frustration. Over the last couple of days, keeping a closer eye on what’s been going on, I notice that frustration at my typing usually starts - or becomes an issue - after I’ve already started getting wound up by a colleague or two. Which means my first task is getting the basics right: “Going to Work, Lesson 101: When working in a team, DO NOT get annoyed at other team members!”

So. Parkinson’s helps re-enforce good IT working practices? Over-stating my case a little, perhaps? :blush:
+++++++++++++++++++++++++++++++++++++
Thanks also to @Jackson for his thoughts on reacting to the initial diagnosis.

It’s still only 2 weeks since I notified DVLA - and, by chance, a very busy 2 weeks too. So I have no doubt I have a long, long way to go before … my views on what’s happened settle down. But so far, I’ve been coping by focussing on how lucky my life has been up to now. That obviously only works if you DO feel you’ve been lucky! And also, I can easily imagine the thought getting … a bit thin in a few years time. But so far, fingers crossed …
+++++++++++++++++++++++++++++++++++++

Now. Thursday is a busy meetings day. Don’t get irritated by anyone! And this evening, Google some Parkinson’s specific hand exercises.

Thanks again everyone. It - already - feels good to know you are all out there.

Martin

I also work in IT. I’m a slow, painful, two finger typist without my meds and quite a fast touch typist with them. My view is: why struggle?

Your left hand typing problem is identical to mine. I would definitely recommend the dictation software approach. If you use a Mac. Which I do., is a setting. Under keyboards. And you can programme. It To be activated by pressing a specific key twice. And it works a treat. Much better than this one that I’m dictating on my phone.!

Thanks - good to hear an entirely positive opinion on the meds. (Some of the things you hear are … at best, ambivalent.)

For now, while my right hand is pretty much unaffected, and given my decades of reluctance to take even as asprin unless I absolutely have to, I’ll probably stick with a Spartan approach. Until the frustration makes me start throwing things at the PC !!

More praise for the Mac! (A blind friend of mine swears by it.) It’s my company standard so … I’m not quite sure how I ended up with Windows. I am much more familiar with Windows - which is good. But my familiarity has definitely NOT made me a fan.

Time to contact the PC support guys and ask for a transfer …?

Thanks for the info.

Windows has it too…not quite as good in my view

If you are at the stage of telling your employer about PD they have a legal obligation to provide reasonable adjustments and a pc with decent dictation would be such in my view
Julian

Hello, welcome aboard and happy to hear your stubbornness is seeing you through. As Tot snd everyone has stated everyone is individual and as such you’ll find a way through that works for you. To add another perspective my husband has Parkinson’s and was diagnosed aged 68 with primary left hand tremor. He was still working as a consultant engineer being mostly in front of/using a PC. His approach was to ‘make’ his left hand work, he even decided to buy a keyboard and learn to play the piano in a bid to engage hands with brain. He had began using medication by aged 70 (which proved to be the right thing for him giving him much more ability and quality of movement and thought). He subsequently continued working full time until he was 74. He too is a firm believer in Parkinson’s not being foremost in who he is. However the perspective from me is that his lack of consideration to having Parkinson’s in itself does cause problems, I remind him to be more lenient on himself when he can’t achieve what he thinks he should be able to. Sadly Sepsis paid him a visit 3 years ago and this has been devastating (far more so than a Parkinson’s) as it has taken his mobility so now aged 78 he is fighting to achieve standing and walking again. Incidentally he didn’t achieve playing the piano in the end finding the concentration too challenging. He does still use the computer typing with both hands but resorts to a stylist when using a tablet.
Good luck in finding you way through.

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Short answer compared to longer ones from keen typists - persevere with the left hand and use spellcheck to pick up any mistakes. You become more reliant on typing as handwriting becomes smaller and messier. Stubborn actions also helps to strengthen as I had the same problem with swimming. Good luck/

I started to post a reply to Plus 1 but it sort of gained a life of its own and I was going to abandon it but decided I would post it anyway. No obligation to wade through it to the end unless you want to. It is purely my personal view.
Hello Plus1
You make valid points in an excellent post but whether you call it stubbornness, stupidity or anything else is not really the point as far as I am concerned. I hope that what comes through in the posts that I write is that just as having a positive outlook does notly my prronmean seeing everything through rose coloured specs neither does my not giving Parkinson’s top billing to deny it is happening. I have seen too many times people lose their sense of self when hit by all sorts of things and it does them no favours. Parkinson’s is in my opinion, a notorious stealer of confidence for a variety of reasons wh ich can in turn have an impact on one’s self esteem and feelings of self worth. I am not glad this has happened to me any more than anyone ļ right mind would choose to be in, my way is to make the best ĺ it. It mĺ the future I saw for myself but whatever it brings it is still my life and I choose to see myself as Tot first who happens to have Parkinsons, to not have it dominate all conversations or have folk do things for me, however well meaning, that I am quite capable of doing for myself and to recognise that I can still make a valid contribution to family, friends and anyone else with whom I cross paths. I also absolutely accept that this view does also involve recognising when things need to be done a bit differently or maybe not at all and yes, that is OK to give in to off days, to kind to myself if I’ve tried something that has not worked or to accept help graciously when I need it. It is often said that Parkinson’s is not a well understood condition, well us who have a front row seat may understand it better than most but we never truly get to grips with it, you can be going along quite nicely when a new curved ball is thrown in. You’ve no way of knowing what it will be until it happens and it can be like throwing a pebble into a pond with the ripples causing chaos to many elements carefully constructed to enable us to live with it. Make no mistake that is not an easy life and since at the moment there is no cure there is too no happy ending. You write that sometimes your husband needs to be reminded to be lenient with himself. That may well be true but as I have said elsewhere I am not Parkinson’s. I am Tot who through a whole range of life experiences including those of Parkinson’s and not because of Parkinson’s alone have made me who I am. I am not fundamentally a different person because of Parkinson’s but accept it may change some things about me same as any life experience might. To me it’s quite simple, I have Parkinson’s it doesn’t have me. For as long as I am able to think for myself I will be Tot first and Parkinson’s just something I live with however hard that may be at times. And again as I have said time and again, that’s my way it is not for everybody. As you rightly say everyone has to find their own way. I wish all who are still looking for their path well and encourage you not to not give up. As you may have gathered my own path is well trod and kept me going for a number of years and I hope for many more; but more than that having clarity about how I see me and Parkinson’s has given me a chance to live with it peacefully most of the time and with a condition that comes with high energy and time costs that’s worth a lot.
Tot

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Hi, I seem to find that I can not actually control my fingers! They run away with themselves as it were and I end up with complete gobbledegook . Whilst I tell my self that I need to slow down, these fingers never listen. Easy to make light of it but it is frustrating and the end result is it takes me so long to complete a task. I don’t work but do help with a local charity and this does include emailing, stats etc.and whilst there are times when I want to step down from the role, because of it, but I know it is better for me to continue in so many ways . That feeing of achievement, is worth the wait and the frustration.

Are you meaning when you type Rabbit1? I fund my accuracy improves if I use a stylus the photo is of the two I most commonly use and I am faster too, you just need to find one that suits your hand/grip. I also hold it more upright than I would when writing I find it gives me more control. It might be something worth trying and good for you for not giving up - as long as the feeling of achievement outweighs the frustration you’re doing ok and if the feelings of frustration begin to take over look to see if there is a different way, like using a stylus. If I am barking up the wrong tree let me know, otherwise good luck.
Tot

Yes. It is when I type on the laptop but I use a stylus for my tablet so I will give it a go. Thanks for the suggestion.

I think you can get a pen like piece of equipment that can be used with a standard keyboard. I will get back to you.
Tot