I would just like to raise to issue of encouraging pwp to be positive and does this in fact encourage a negative response as it is so difficult to do when living with a degenerative illness and maybe having a bad day Would it not be better to encourage pwp to accept this is how it is today and employ/learn strategies to minimise/manage the effect of symptoms. Additionally when feeling low or defeated is it healthier to acknowledge these feelings and to feel them rather than trying to fend them off. Would it be healthier to learn how to be more aware both physically and mentally to better manage and accept your parkinsons. How often do we use humour to deflect from what we are really feeling.
I understand I have raised maybe quite controversial issues(check out my details) but am reflecting on my husbands 16 year journey with parkinsons and of all the other pwp I have known. I feel there is something lacking in how we deal with the issue of acceptance particularly and am keen to hear others point of view. I am particularly interested in how the newly diagnosed are coming to terms with diagnosis. Thank you to all who read this post and I hope you will feel able to give me your valuable feedback
You make some valid points. You do not have to read many of my posts to know that for me positive thinking is very important. However you will also see that I have also explained several times that for me being positive does not mean seeing everything through rose tinted specs. Rather it is about being honest about my situation - I know I have a chronic and deteriorating condition, I know my coping strategies do not come with a 100% guarantee that they will always work, I know that over time they will need to change, I know that there will be highs and lows and I recognise and that feelings that are bourne out of this are legitimate whatever they are etc etc. This helps me keep some perspective, some balance about my situation and how I manage my Parkinson’s. I also make it clear in my posts that my way doesn’t work for all, that there are no right or wrong ways only the way that works for that individual. What you suggest in your post would not work for me, that’s not to say it wouldn’t work for others. Parkinson’s is often quoted as being a very individual condition affecting everyone differently; why then should it be any different when it comes to how we choose to live with it. A final thought on the surface you and I may seem to have opposing views but actually many of the points you raise can probably be found in my posts just written with a different style.
An interesting post. I am sure you will receive a range of responses as we all deal with emotions differently. For me personally, I am a glass half full person, when I received my diagnosis and the lead up to the ‘what if’ as a practical person I read up on PD. More along the medications what they do, how they would help me, side effects and weigh up what is going to work for me. Taking into account C19 and the effects this had on our NHS people not just with PD but other medical conditions were left waiting for appointments and follow up results. For me personally it is about what information is available, how best to support any given situation and even having a response on the forum is sometimes all that is needed. Not to take anything away from your question it is not just PWP, we are all coping with something, from expereince well being and mental health is not always a subjet that people are willing to discuss, I have family who work in this sector. I feel signposting to the services that can support anyone with accepting any condition or worry that affects our well being and mental health is foremost. Acknowledging the iniital feelings is the first step, we all have off days/got out of bed the wrong side, taking the next step to finding someone/sound board who can be a critical friend/support is a bigger step, this is easier for some then others. The forum has sometimes been that place from the posts I have read, shared and have found the words in responses are just what is needed at that time. For me it took a little longer emotionally to accept that I may not be able to do the things I could and at the same speed and turnaround time rather than thinking I am not the person I used to be. I only shared my condition with close friends and some family, a few colleagues at work and my line manager after a year, I then had to cope with their reactions which ranged from ahh poor you to oh my… you get the idea. So I don’t share it, only when I feel it necessary, as for humour I showed someone a photograph on my phone, he said that really is an awful photograph/blurd, guess my reaction… I replied you try taking a photo with one phone in one hand (my good hand so I don’t drop it) and taking the photo with the hand that tremors, okay so I’m not brilliant at taking photos but I could make a good cocktail! He was so apologetic, the more he said sorry the more I laughed! All said, we all have different coping strategies, we all have different expectations about everything, I think again me personally, get up each day, yes I plan but if it doesn’t work it doesn’t work. I have a motto, ‘it will be okay in the end’ if it is not okay, then it is not the end. Sharing experiences, coping strategies if you are able to and make a difference and lighten someones day with kind words can make a difference. Will be interested to read the feedback on your post, take care
Thank you for your posts. Just to let you know I am currently working on an 8 week course for people living with serious illness and their carers starting now in March. I am all too aware of the impact of covid on our NHS, two of my children being senior front line staff and it is for this reason and meeting various carers whilst out waIking my dog,that I have come out of retirement and am in the process of writing and delivering this course, hopefully from March. The course will include meditation, mindfulness practises,movement therapy and relaxation The course will also offer a signposting service to the relevant agencies and has local charitable backing. A generous amount of time for sharing has been built in.
We are hoping to obtain a community grant designed to help the vulnerable post covid.
Reflecting back on the work I have done over the last ten years I am interested to assess how peoples coping mechanisms differ, what works and what doesn’t. I would like offer two quotes which i feel define the nature of my work and personal life.
" Self acceptance and self actualisation can give you the highest form of happiness" ie this is how it is but I also follow up with ten things per day to be grateful for.
“Face your fears, be brave and let go” This is very personal to me and represents the struggle and fight we as a family have been through to get my husband the care he deserves at home. Also the acceptance of his Parkinsons dementia and the anticipatory grief that goes with it.
With regards to humour I more than anyone enjoy a good laugh, especially with my girlfriends, however I have met many, often men who use humour to deflect from acknowledging their illness.
Thank you to those who have replied and to those who are thinking of replying please do. There has been much interest in this course from the Parkinson Community and if necessary I could tweek it to include more strategies to reduce the symptoms of PD and include more relevant movement therapy to give pwp the confidence to try other forms of exercise.
Warmest good wishes to you all
Hi yogalady, what a wonderful idea, and good luck with your grant! I have found some really useful support on the forum and hope others will post in response to you. I have always been keen in writing, particularly poetry and my inspiration from writing came from personal experiences, it wasn’t something I shared until I had my children and then had some work included in an anthology. When diagnosed with PD I found writing again became an avenue for my own expression and reading some of the poems in the creative corner quite emotional, thank you for sharing, i will be adding another post it note to the fridge door with your ‘face your fears, be brave and let go’, thank you again, take care
Hello again yogalady
I agree with Anaelsa that you are working on almost interesting project.
I just wanted to add a note on humour. While I agree it can be and is used to deflect attention from the diagnosis, it can be a very useful tool indeed. One of the most difficult things is having to manage the reactions of others who invariably don’t know what to say or do or how to just be in your company and the use of humour can be very effective in defusing a very awkward situation. It can also be used to make a point that it is important for someone to understand without making heavy weather of it. Laughter therapy or laughter yoga may attract a lot of cynicism but can actually be very effective therapy in its own right. I personally think this is an area which is not well researched but could potentially sit well alongside the mindfulness, meditation etc that you mentioned.
Good luck with your project.
Tot and AnaElsa
Firstly AnaElsa. Congratulations on rediscovering your passion for writing. As I have found it is so important to have a focus in life and when you can use your own personal experiences it adds weight and validity to whatever you do.
Tot with regard to humour, I am not suggesting that we cant inject humour into difficult or awkward conversations especially to lighten the topic. However it is frequently used to divert attention away from oneself when in denial about symptoms. For myself I used to focus on asking on the wellbeing of others and their family in order to deflect attention away from my own situation, especially when we were really struggling and care was either non existent or really poor. I have now learnt to be more open and honest.
I have done a short course on laughter yoga and was considering including it, however I would do this but only if I felt it appropriate for those attending. I do have professional supervision from a mindfulness tutor/senior yoga teacher/psychotherapist and would have to discuss this with her first. The course will follow the framework of the highly regarded 8 week mindfulness course which is often offered under social prescribing and I am hoping this course will be offered as well. Thank you both for your interest and I wish you both well.
I am recently diagnosed and, in spite of two years of feeling unwell and knowing that PD was a possibility , the diagnosis was still a dreadful shock and I feel as if this is a nightmare from which I won’t wake up. I know this state of grief, mourning the fit, active, hands-on grandparent that I was and the lifestyle I expected, is temporary and that I will come to a new state of acceptance and coping - eventually. You’ve all been there. However, right now, one of the least helpful things is those friends encouraging me to be positive - Oh, they have drugs that work nowadays; at least it’s not life-threatening; it’s good that you know what it is now; you’ll be fine etc etc.
I know that they mean well but much more helpful are those who acknowledge and recognise my loss and fears for the future with a nod, a touch, just listening. My daughter sent a link to a neurophysio with whom I’ve made an appointment which is a proactive step in the right direction, so at this early stage I would say that, for me, positive action is more helpful than encouragements to ‘think positive.’
We just wanted to thank you for joining our forum community and say hello. We understand how easy and facile it can sound when others, particularly people without health conditions, tell you to stay positive. One of the lovely things about this community is you will hear from the very real and specific benefits of looking for the positive from people who have earned the right to say it. It doesn’t mean you’re not allowed to be cross, or that you have to pretend things are always rosy, and it isn’t a simple or dismissive bit of advice. We hope you’ll feel welcome to have a look around at the various threads to see the way the PWP here support each other. It can be truly uplifting, in many different ways. Added to that, we have a free and confidential helpline at 0808 800 0303 staffed with brilliant advisers who can answer a range of questions and help you to find helpful resources in your area. And of course our website at Parkinsons.org.uk is full of loads of research, articles, and archived forum discussions that you may find value in. At the end of the day your journey with Parkinson’s is a personal and unique one, and you’ll find plenty of evidence of that here, from this supportive and wise group of people.
Best wishes from all of us here at PUK,
Hello there Anna 2
Firstly thank you for replying. I spent a lovely sunny afternoon walking with my daughter who is a specialist Macmillan nurse. We were talking about acceptance and the relevance of having a positive attitude. As you so very astutely observed this line is generally taken by relatives and is part of their coping mechanism when dealing with a difficult diagnosis. For the patient you may well be dealing/ thinking about the worst possible scenario, dealing with difficult thoughts and emotions and grieving for the life you thought you would have but now seems to have been taken away from you. It is really important to face these fears and then park them/ put them on a shelf and move forward. Be Brave. Now is the time to find out about all the support that is available to you including this forum. Find out as much as you can about Parkinsons, again be brave. You will find there are many ways Parkinsons can affect you and a variety of medications and their permutations to help you live well. There are also many ways you can lessen the effect of parkinsons symptoms, probably the most important of which is exercise and dealing with stress and anxiety( a normal response but one that has a seriously detrimental effect to your Parkinsons it uses your vital dopamine supplies). Reflecting back on how my husband is now ( walking well albeit with rollator, caliper and orthotic boots as one leg is 10cm shorter than the other when he wasn’t expected to survive let alone walk) I can only put his truly remarkable recovery down to the fact he has always exercised. He went to his own neurophysio ( always argued with me) and the resulting strength and ingrained muscle memory has vastly contributed to his physical recovery. So going to a neuro physio has to be a really positive move. Ask her for exercises which will help with the movement problems many pwp contend with further down the line. Maintaining a flexible spine thoughout the length of the spine and strength in the legs is a priority but other things can be added. Ask for a plan
which you can stick to. See if you can make your daily exercise a habit which makes your day feel right. There are other things you can pop in just as you go about the house ie When going up the stairs stop on the first step with only the front half of you feet on the step and holding onto the stair rail drop your heels slowly and repeat 5 times. When in the kitchen place your hands on counter top and slowly come up onto your toes five times. When sitting in the evening make a fist with your
hand, look at you hand and slowly uncurl your hand until it is wide with fingers stretched and and splayed repeat up to five times on each hand. Again all these small positive things to do make a difference. I could go on and on but had better stop now!!!
With regards to your mental well being everyone has different strategies, however remember you
are grieving for the life you thought you would have and it is very normal to have these emotions so don’t try and shut them down as it won’t work. Be kind to yourself and allow yourself to grieve. When difficult thoughts and emotions come up notice them and acknowledge them, maybe take a few breaths, breathing in to four and out to four for five breaths then see if you can allow these difficult emotions to float away like clouds in the sky. Again this takes practise but over time will become a habit and becomes really valuable coping strategy, works well when waiting in clinic.
Finally start a gratitude journal - start with four things a day to be grateful for and then slowly see if you can work your way up to ten. Again after time this will become a habit and you will find yourself noticing the good in your day in many different ways until you don’t really need to write it down any more. You will have set the reset button on your life, yes you have difficulty but life is still good. Do you now feel you have some sort of control over your life?
Sorry to go on but this sort of work is my passion. This is just a small part of the work I do. I know the newly diagnosed and younger onset have more definite needs and I hope you will find this sample of what i do useful.
When you have done all these things you will have set the reset button on your life
Can I say straightaway that it’s great that you can recognise you will emerge from this early stage at some point having survived to tell the tale as we all have in whatever way we have found suits us as individuals. It is not an easy thing to see much less accept when it can feel nothing will be normal ever again. I wish I could tell you how long this may take but unfortunately it takes as long as it takes but you will get there.
You have however identified a very real issue that I think many of us who live with Parkinson’s will recognise, namely the reactions of others especially when they come out with what can seem glib comments of the type you describe. It is my own view that this is often caused by them not knowing what to say, how to be around you and often mixed with an element of guilt or relief it’s you and not them variety and that all too often can sound pitying when all you really want is an honest acknowledgement of a life changing event. I think you do need to acknowledge that for many this will be the only way they know to give support and they probably don’t see that it is not helpful. It is also true that this issue will probably crop up again at some point albeit in a slightly different way - people will read that something is beneficial for Parkinson’s or see something on the television and present it to you like they have the answer and are a bit crestfallen when you don’t immediately rush out to sign up for whatever it is. I have been told so often that the tango is a particularly good dance and that may well be true but since I had no interest in learning this before my diagnosis why do they assume I want to now.
Living with Parkinson’s throws up all sorts of dilemmas like this and how you deal with them depends a lot, I think, on your attitude and approach to managing your own condition. For me that was easy to answer. I have Parkinson’s and my choices were I get on with it or I give up. For lots of reasons I won’t bore you with now I don’t see disability in a wholly negative way and my main tool is to be positive. You don’t need to read many of my posts to understand that and that it is about me being honest with myself. I knew I didn’t want people’s pity or anybody feeling sorry for me when I didn’t feel sorry for myself so decided very early on that I would be open and honest about my Parkinson’s. So in answer to the sort of unhelpful comments you describe I would always qualify it with a yes but sort of answer eg treatments are getting better all the time - yes but at the moment there is no cure and standard treatments are all I’ve got. Of course you have to be a bit more diplomatic than that but now, 12 years on, family and friends take their lead from me and my Parkinson’s is where I want it to be. I am Tot first and I happen to have Parkinson’s it doesn’t have me. The main difficulty for many when newly diagnosed is working out how you want to live with it and how you get others to understand it is happening to you not them, although it’s affects are more widely felt. What you eventually do will be unique to you and right for you. My way is right for me but its not for everyone and thats fine.
I have read yogalady’s response and she makes a lot of valid points and gives good advice but there is an awful lot there. It could be totally overwhelming for some to read that so the key is to go at your pace, find out about things when it is right for you and in the early stages anyway concentrate on the questions you have now otherwise you run the risk of information overload when you can’t see the wood for the trees. She is right exercise is important but so it is for everyone and how many new year resolutions to get fit by the general population have already fallen by the wayside do you think. A diagnosis of Parkinson’s doesn’t automatically switch on an I love exercise switch and even when it’s a habit it doesn’t always work. Find something you enjoy that fits into your life and don’t beat yourself up if it doesn’t always work just start again when you can. You’re not failing if you are doing the best you can to live with this complex thing called Parkinson’s
Dear Tot and Yogalady,
Thank you so much for taking the time to send me these compassionate, empathetic and practical replies. Your understanding means a lot to me and moved me to tears (but in a good way!). I look forward to sharing thoughts again in the future.
Hi all, my civil partner has been diagnosed since mid June and we’re struggling with coming to terms with this, with fear and meds being only mildly effective so far. Good to read these positive stories and the course sounds great!
Hi @Bron22 There’s nothing to fear, take each day as it happens & don’t change the way your partner was before diagnosis. The secret is to carry on as best you can & remember, your partner has Parkinsons, it doesn’t have them. You & your partner will know when something needs tweaking to keep the happy relationship going. The main thing is to stay positive in outlook on life & adopt the attitude that it won’t beat them. Take care.
What was the original question? Is it helpful to encourage pwp to be positive?
I’ve skimmed through most of the replies, some I did read right through.
My answers, as I have always said, “What works for me might not work for you”. I find having a PMA, Positive Mental Attitude, always works for me. As I said in one of my poems, “I used to do DIY, cooking or baking a pie”. I can’t do that as well as I used to, so what, I do the best I can.
As for telling people about my diagnosis, I told everyone I knew. What’s the sense in waiting, they’re going to find out anyway.
We are all individual, what works for me might not work for you. Do what you think is best for you.
Forgot to add this, “Feel the fear but do it anyway”.
Thank you for replying to my original post. I find cannot improve on the words by the amazing late Dame Deborah James.
Find a life worth enjoying
Take risks#Love deeply
Have no regrets
And always , always have rebellious HOPE
Finally check your poo!!
In essence : Be mindful and come to terms with the “isness” of your diagnosis .
Find a light in that rebellious hope to keep the flame burning in your darkest hours.
Hello! I’ve literally just joined as I never sleep between 2 and 4am and, whilst looking for posts on beta blockers, I stumbled on this discussion about positiveness. Interestingly, when I was firstly diagnosed, 7yrs ago, I absolutely hated to be told on disclosing my shocking news, ‘Be positve’. I know people meant well or didn’t know what to say but I still think it is not my favourite turn of phrase. Some friends said ‘How can I help?’ and that was brilliant.
Hello 3Kays and welcome to the forum
You raise an interesting point and you don’t have to read many of my posts to know that being positive is important to me in living with Parkinson’s but it is not other people telling me to be positive that makes the difference for me.,Rather it is something I do for myself. I have made a conscious choice to try and keep a positive mindset and work hard to maintain this because it works for me and that I think is the key if it works for you great if it doesn’t find something that does. In the early days being asked 'how can I help ’ wouldn’t have been best for me because it implies I needed help. The fact is with a diagnosis of Parkinson’s or indeed any other chronic condition people invariably don’t know what to say or how to react so they fall back on old standards, well meant but not helpful. It simply goes with the territory.
For me being positive is much more than two simple words, it’s about being honest with myself and actively deciding how I think and feel about my Parkinson’s and informed by my personal and work experiences, In short it is about the mindset I adopt my attitude and how I convey to others what I want from them, that sort of thing. Being told to keep positive can sound glib and a bit worthless as can how can I help or dozens of other such phrases. As long as you know what works for you and that anything that sounds glib is probably well meant if not always helpful that’s the important thing; they have at least acknowledged your Parkinson’s not crossed the road figuratively speaking because they don’t know what to say.
Hope things are going well for you.
Thanks so much Les. All very helpful.