Hi everyone I have had parkinsons for 7 yrs now and up to now I have managed with help of family and friends but I am struggling now a few other medical conditions on top of Parkinson’s has made things a lot worst ,I usually can rely on my good old positivity to pull me through but it’s failing me and I can see people changing how they are with, please believe me I love em all absolutely and they will always be there for me. It’s me I’ve been so busy trying to make light of things so I can still be the old Lena I’ve not yet let it really properly in. That’s why I’m here to for the first time say I’m struggling I can’t really talk to anyone about how I feel I don’t want a pat on the hand , your ok you never let this stuff get to you. Your amazing dealing with that. Because I’m not amazing very far from it I’m frustrated and sad and feel alone.
Thankyou for allowing me to say it I’m now going to hide for a bit as I feel conflicted if I should of done this .
Hi Imzadi12 I’m truly sorry that you are struggling and feel sad and alone, but you’ve done the right thing by joining this forum and take comfort in knowing that you will have tremendous support from everyone here. I joined not long ago as I was struggling (I’ve had Parkinson’s for 11 years) and found everyone helpful. You are not alone and I think that after a short time you will be glad that you joined…I certainly am. I wish I could say more to help you feel better. I am new at this but wish you all the very best and look forward to hearing how you feel a wee bit down the line.
Kind Regards
Janny
Hello. You’re not alone feeling like this. It’s a good idea to seek support from a forum where everyone understands. I check in here every day to read threads, and find both practical advice and kindness.
Hi Imzadi12, as you will have already seen in replies, you are not alone, you have found this forum and am sure you will find support, understanding and a place to ‘say things how they are’. If I can offer any reassurance ‘you are not alone’, as and when you are ready revisit the forum and am sure there will be further replies and support from others, we all have good days and I remind myself it’s okay to have an off day, I’m fairly newly diagnosed so still finding strategies and coping mechanisms that work for me, this includes the support i have found on here. Having never met these people yet feel a bond and gratitude for their support. Actually thinking about it if I were to have a ‘fairy godmother’ I would say it’s Tot 
and am sure you will be hearing from her soon, take care and hope to hear from you soon
Hi Lena
I am new to this as well, have just been diagnosed with Parkinsons after finding out I have prostate cancer, and at some time in the past, a mild stroke. It makes you ask - why me ???. Im sorry you are feeling sad and alone at the moment, hopefully, partaking in things like this will help. I don’t know your circumstances but I am trying to concentrate on slowing down the progress of this, and plan to explore what I can do. I know keeping active helps so I have started cycling to work - crikey, I was knackered the first day I arrived at work (Monday this week), and then got a puncture going back home so had to walk nearly 2 miles. Yesterday was better but not sure I’m going to hack the hill to work !!!
Have you looked into anything else that would help me, diet maybe?
There is a lot of info out there but I do find it a bit daunting to read through sometimes, partly why I joined this forum to perhaps get a better more hands on approach? Does that sound daft?
I hope you fell a bit better soon, I’m glad you posted what you did as it gives a more realistic picture to what may be going on.
Regards
John
Hi John thankyou for your reply. I like you want to keep going as long as can I will have a go of things other people have tried and had some success but to be honest with you I’ve not had much luck with most of them. You are right exercise is one of the best things ,my mobility isn’t great but I do Tai CHI and a new Parkinson’s exercise class opened up which Iv started and actually if I’m honest has done me some good and something I will keep on doing. The sight of 12 parkinsons sufferers throwing balls to each other and if we lucky 2 or 3 people would eventually catch it , you would think we won a Olympic medal. That and some logic or puzzle games on my laptop ,walking has been good for me . Now I’m letting Parkinson’s in and excepting it I will be checking out more ideas so if you come across any interesting things I’d be very interested to hear about them. Not really looked into diet but I’m going to lol.
Hope you can keep up the cycling back at the exercise class you would be a super hero .
Thankyou for chatting me x
Thankyou janny for chatting to me it was lovely to hear from you. I already feel like I’m joining a family this could be the step I needed to get back I was going to say to me but maybe a new me x
Thankyou lemon for chattting to me i think your right this was a good step for me now i have excepted what have (eventually )maybe I can find a new me x
Hi AnaElsa
Thankyou so much for replying to me , writing that hello this morning was hard to do and the first time ive been really honest with myself and maybe i had to be in that sort of grey place to be able to acknowledge to myself burying my head in the sand is not making me happy. Maybe I can find a new me, this will sound silly but I feel like I have found a family.x
Hi agai Imzadi12, totally not silly, and so glad you have returned to see the replies to your post. Reading your post this morning mirrors some of my own feelings earlier in the year, but you have taken the first steps in like you said buried your head in the sand, you have acknowledged this and this s the begninning of a journey and am sure your new found family will be here for you as they have for me. Now as i type that will sound silly, but honestly getting replies to some of the posts really does make a difference, there is a lot of reading on here, the creative corner gives some really inspirational reading, sharing emotions through verse, worth taking a look, hope to hear from you again soon, have a good day
Hello Imzadi12
We may not be physically with you but you are most definitely not alone and I see you’ve already had several great replies which I hope have helped. Just thought I would chuck my hat into the ring because I too use positivity and believe it to be the strongest tool in my particular armoury. It is not however an easy choice and to me that is the key word. I don’t see myself simply as being a glass half full sort of person, rather that positivity is an active choice which I work hard to maintain. The difficulty is that no coping strategies come with a 100% guarantee and I am under no illusions that as time goes on and my condition progresses my mindset of positivity will be tested several times over. It would seem you are in one of those ‘testing’ phases at the moment.
I note that you feel your positivity is failing you along with your ability to make light of things so you can be the old Lena. If I may suggest you turn things on their head so you view things a little differently. Rather than thinking your positivity is failing you, think of it as changing. It’s not gone away just not being as effective as it has been. So the next question is why has this happened and how I read it from what you’re written in your post is that your coping strategy of keeping it light so you can be the old Lena is the key issue. At the risk of pointing out the obvious you are the same old Lena, you just happen to have Parkinson’s and by whose rules do you have to keep it light? Yours. But you don’t have to do that, as you have found by posting today and admitting you are struggling. Maybe this is the start of a permanent change, maybe not but like it or not it may be slow but Parkinson’s does progress and your coping strategies likewise can’t be set in stone and have to be adjusted as time goes on. I can’t tell you exactly how to do that as it is your coping strategy not mine but it may help if you can find a way to not see yourself as two people ie before Parkinson’s and after diagnosis. I agree this is a natural response but arguably, it could lead to your feeling your pre diagnosis life was wonderful and your post diagnosis life as one bleak black hole. In truth however your pre diagnosis life was probably not without some difficult and hard times any more than your post diagnosis life is not without some good times; but it is harder to see this when the going gets tough.
Some may argue that my approach is rubbish, that I am burying my head in the sand. They would be quite wrong. Fact, I have Parkinson’s, there is no cure, treatment is symptom control, I will deteriorate over time, I will never be rich as most of my money will go on my care, I will become increasingly less able to do things for myself. I could go on. There’s nothing good about having Parkinson’s if you look at it in stark black and white terms. Life, however, is not black and white. I am almost 12 years post diagnosis, over and above all the covid 19 stuff 2019 and 2020 brought me challenges I could never have foreseen ( if you are interested I did in fact write about this on the forum (My recent experience August 2020) There was most definitely some very low points, and when I look back on it now it was my positive mindset that kept me going. It certainly felt like it had jumped ship at times. The key for me was to accept that as normal and feeling low, fed up angry, frustrated or whatever were all legitimate with what was going on at the time; but at the same time looking at it from another perspective this was my life we were talking about here and whilst I could accept a period when it felt like everything was wrong, there was no way that was going to be the final word. I did what I needed to do and that included speaking honestly with family and friends, letting them see the vulnerability I was feeling and letting them help. That for me, is the best thing about using positivity - it enables you to find the strength in a situation where there are no obvious pluses if you allow yourself to turn things upside down and see the same situation from a different angle. It involves honesty and creativity and an absolute commitment that my life will be as good as it can be because I am me first and foremost. I’m not sure if you will be able to see and understand what I am trying to explain as it is quite an abstract concept but I hope you can find something in what I have written that will help you find a way to continue to use the positive approach. It is a powerful tool with a powerful voice and is worth the struggle to keep it going when Parkinson’s chucks an unexpected curved ball in your direction.
And if you managed to get to this point well done, it sort of grew on me!!
Tot
Thankyou tot I actually get what you are saying and its great advice which I will be taking on board its how I used to see things . I read over your message and realised I have been allowing problems with life to overtake me and to be honest it’s been easy to blame Parkinson’s instead of dealing with it. Yes Parkinson’s is taking its share of problems but I can deal with it but as you said maybe it’s time to allow people to see that things not easy and be a bit more vulnerable let them in(( which sounds great but letting my guard down is a challenge). Yes thankyou tot youve given me some propective and a very kind jolt which i am doing some thinking xxxxx
Hello again, I’m so glad you understood it’s not easy to explain. You’re right it’s not easy to admit you need help at the best of times but when you’re living with something like Parkinson’s it can feel like you’re failing because you should be able to cope, because you have been coping - so why can’t you now. There’s no failure in reaching out as you did by posting to the forum. It takes courage and that’s a strength. Be brave and use that strength to relight your positivity. Not easy but not impossible either. Good luck.
Tot
Welcome @Imzadi12 , You’ve had some positive responses from some members who myself have helped down the years. @Tot always gives a good response. All have implied that being on here means that you are talking with people who understand what you’re saying. We are basically your new family if you like, friends who won’t let you down and will always give answers to questions you may have. As has been said above, you’re never alone on here, we are here to offer the olive branch whenever you need it. Once again, welcome, take care and stay safe Lena.
Les
Thankyou cruise control
Everyone has been brilliant and kind. Thankyou for your words it means a lot, its the first-time in ages I feel no stress, I hope that one day that I can help someone as you have helped me x
You’re most welcome Lena, as i’ve said to people before, we’re all in the same boat but at the same time are all different and all help one another along the road so to speak. If there is anything you want to ask, just do it, someone will give you an answer. Have a good weekend, take care and always stay safe.
Les
Thanks Las have lack of weekend as well
Lena
Sorry not lack i meant have a good weekend
No problem Lena, the fact is that you’ve found the forum and so quality of life, hopefully, can improve for you knowing that we’re all here for you. All the best.
Les
Hello Imzadi12. You are among friends; and we all struggle from time to time. It’s as much to do with frustration as anything else - the feeling of impotence at being landing with a lurgy that the medical fraternity can’t “cure” and which reminds you from one day to the next of its frustrating presence. Having a positive outlook is important and you have to be creative sometimes to drag yourself away from the day-to-day realities of your predicament. Finding a new way of getting around a day-to-day problem can be very satisfying and can be the cause of a bit of personal back-slapping. For instance, pre-lurgy, I used to sit on a chair to put my socks on; but I have discovered that I can do this standing up and balancing on one leg whilst putting a sock on the other one. This is a good exercise and helps to preserve (and improve?) my balance in general. There is something in there about responding to a challenge before it becomes a necessity to do so. It’s also to do with slapping yourself on the back and getting your wearied carapace to react to your commands even when it doesn’t want to. Take delight in every small triumph and, above all, take plenty of exercise. It gets to the parts that medication can’t reach.
Another booster - take up Pilates and find all sorts of exercises you can do at home on an exercise mat. Each exercise demands that you concentrate on flexing some part of your body in spite of the disease. This helps to keep you active and flexible and concentrates the mind on making your body work in spite of itself. This works and improves your attitude and feelings of self worth. 30 minutes per day is all that it takes to make you feel better about yourself for the rest of the day. It works for me and I have been battling away for 12 years now. It’s all about feelings of self worth and who is in charge - you or the disease? It’s not easy and no-one says that it is. But there is satisfaction and peace of mind to be had by accepting the challenge head on. Best wishes. JCPB