Whenever I talk to my husband about symptoms he just says it’s old age and he has them too. We are both 56! Whilst I recognise that getting older does make you memory poorer and you get aches etc I am sure my experience is different to his. I do have PD and take medication and can list all my symptoms, so it feels like I am making a fuss about stuff that we all experience as we get older. It doesn’t encourage open discussion.
Welcome back to the forum.
I can see why your opposing views on this issue can result in a lack of open discussion. However, I thought you’ve interested to know that symptoms like mild memory and thinking problems can be a normal part of getting older. But sometimes, these symptoms are caused by Parkinson’s.
I would encourage you to click the link above for more detail on this via the Parkinson’s UK website and if there are any symptoms that are of particular concern to you, then please feel free to give our helpline a call on 0808 800 0303. One of advisers would love to speak to you in more detail about this.
Hello Penguin, I can understand entirely what you are saying. It is true some of the symptoms can also be seen as 'getting older and people have said much the same to me. I also acknowledge that some of what I experience may perhaps be simply getting older but I also think there is a qualitative difference when you add in Parkinson’s. The effort needed to manage a normal day, even a good one, is greater than the average well person in physical terms. In addition there are many non-motor symptoms. I don’t believe I am unusual in saying whilst it is not consciously on my mind every second of the day nor is it ever very far away that I have Parkinson’s because as soon as there is a decision to be made and that can be many times in a day, conscious thought kicks in. As well as managing each day with its physical and mental challenges, it is also necessary to negotiate everyday life in terms of the obstacles, physical and social barriers can cause. I am left handed and to a certain extent there are similarities. Like Parkinson’s, the difficulties of living with left handedness is frequently both misunderstood and its impact underestimated. The world is designed for right handed people even in today’s technological world a standard key board has the numbers on the right, most ATMs have the card entry slot on the right, I was in my 20s before I could tie a bow that would lie flat why? because no-one said I needed to put the ribbon anti clockwise round the loop. Right handers would call my ticks backward, I was and am frequently told I look awkward. These are only very simple examples there are dozens of others. I have spent a lifetime managing in a right handed world and now for the rest of my life I live with Parkinson’s in a largely non Parkinson’s world. Yes, anyone can get tired but it is not generally speaking the absolute fatigue of Parkinson’s, yes older people move more slowly but on a not so good day I have taken to going to the bedroom early in the evening because getting there when time for bed becomes a virtually impossible task as anxiety kicks in when my feet struggle to move, irrational anxiety causes real difficulty in doing something or going somewhere when there is always a stronger reason (ie excuse) not to go, pain, tremor or any other symptom may or may not be a symptom of getting older but where they are ‘the same’ Parkinson’s will in many cases magnify its impact in a way that is hard to comprehend unless you are living with it. The problem with qualitative differences is that they are difficult to explain or describe when usually the same words are used. I know this doesn’t much help your wish for open discussion.
All I do is explain as best I can when opportunity presents itself but otherwise just let it be water off a duck’s back - in exactly the same way as a right handed person can’t see the true impact of being left handed, nor too will most people without Parkinson’s see or understand the truth in living with this condition. You can however always let off steam here on the forum if it gets too much. We do understand here.
Thanks for your honesty and great explanation, Tot.
It is perfectly understandable that you husband says that, when I say something to my wife like I am getting an excess amount of saliva for instance, she will say I get that, and of course she does but not to the amount I get… in fact I once said to a neurologist not long after I was diagnosed I was having difficulty in understanding the difference between the two. And when I first saw a doctor she thought it was probably old age, my advice is to let it go over your head as it sometimes needs a expert to know the difference, some 11 years on I find this is the easiest way.
How true Tot I too am left handed and short sighted with myopia and of course Parkinsons. I have lost my ‘can do’ attitude and every day is difficult but to explain this to my husband just sounds self pitying. What’s the alternative, for me, just to struggle through each day and think of others who are worst off. Best wishes from another south paw.
Hello farmers_wife, first of all you may well know of this but in case not have a look at Anything Left Handed it is an excellent one stop shop and information resource.
I was sorry to hear you have lost your 'can do attitude and hope this will prove to be relatively temporary. I think that sort of thing will hit most of us at some point if only by getting fed up with Parkie sitting on our shoulders constantly thinking up ways to cause chaos and from which there is no escape. I do however personally believe it is worth holding on to what you call 'can do and what I call a positive mindset. You have used the classic reasoning of thinking of others who are worse off than you. For me this is not the way to look at the situation in which you find yourself through no fault of your own. It is true there will always be someone worse off but what is actually meant by that has no universal meaning - who’s to say that someone looking at your life doesn’t see you as being ‘worse off’ than them for example. To me that can prevent you being really honest with yourself and what you feel about your Parkinson’s; you’re almost obliged to downplay your own situation because it’s not as bad as someone else. Maybe your situation isn’t as serious as some others but you rarely start with a level playing field and anyway, what makes your difficulties any less or more significant than those of anyone else. It is a worthy and frequently used sentiment with in many circumstances more than a grain of truth; but there is no reason why you should consider your own situation as being somhow less than anyone else’s. Living with Parkinson’s may be a lot of things but simple and easy it’s not and if it’s robbed you of your ‘can do’ that says it all. I do hope you can still see the odd glimpse of sunshine, experience an occasional win in the ongoing challenge of Parkie and vow to keep going and not give up because you are better and stronger than you think you are. As a leftie you are used to living in a world that is more often than not the wrong way round to us but we get on with it because there’s no alternative. There is no alternative to what Parkinson’s throws at us either and perhaps all we can do is get on with it and for me it is those times when life becomes a really hard struggle that it becomes ever more important to look for that spark of light. It can make all the difference.
Apologies for going on at length, it just sort of grew as my posts often do. You of course don’t have to agree with any of it, it is only my personal way of looking at my life with Parkinson’s and it seems to suit me. Your way and that of anyone else is equally valid.
I can be guilty of that response to my hubby who has Pd. I may say it because I want him to feel somewhat better, but not sure it works. Its surprising how some people have that response though, “oh yes I have that problem too!” when you really want some empathy. Some men struggle talking about health issues I think too. Mine has found it difficult if we try to talk about something health wise. Have you had PD very long?
Thank you for taking the time to send your lengthy but interesting reply. I will take on board your comments however it is difficult to be positive when after 11 years of coping this year has been hell. The drugs I am on don’t seem to give me more than an hour and a half of quality time - roll on a once a day drug so we can forget the shaking, feelings of falling and slow speech… As for the so called experts well let’s say I am doing better by trial and error.
Back to Christmas cake and tomato chutney making,
I’ll second that. Hope you managed the Christmas cake and chutney making without it being too physically taxing and personally speaking I would definitely see that as a positive - you’re not at your best and you did it anyway. Good for you.