Hi Jcpb thankyou for the welcome and really good advice, I used to be as active as I could and positive but I think I’ve just hit a point where things over ran me, its not just the Parkinson’s and stuff as we all know is pretty darn difficult at times but external things seem to be challenging I seem to have lost the ability to deal with more than one thing at a time and the family and friends seem to think I can deal with there problems as before and the mood swings and anxiety dont help as I try to keep on top of things. I’m always up for a laugh but recently everyone’s joking about my forgetting things or little things I do wrong is really upsetting me , I’m being honest I’m getting quite defensive I know no one means harm . Its like I’m a different person sometimes and I find it difficult to see me ,I’m trying all I can to not do that I can’t bare to hurt anyone’s feelings. Sorry JCPB you will wish you never messaged me at this rate.
Is this anything’s you’ve been through ? Any advice to deal with it I would appreciate x
Hi Imzadi12,
When I read your letter four days ago , I couldn’t believe that you were describing me to a T.
Everyone has been saying how fantastic
I am and how much I push myself to do so much. But lately within the last few weeks I’ve slipped very far behind and can do very little compared to before. I do have support from family and friends, but because I live alone they don’t really know the full story. I guess that I’ve been in denial to a certain extent. I definitely need to get help in daily and hope to do that soon. Thanks for listening.
Lizzie
Hi Lizzie. Thank you for replying, its hard Lizzie to one day look in the mirror and see someone else looking back almost. I too have been in denial not letting it in, till now… when i read your message I to felt we were in the same place. Sending you a hug . I came too this forum to find help to find something, one thing everyone has said is your not alone your among friends and for the first time in a long time I’ve opened up a bit .Take care Lizzie, hope we talk again x
Hi again Imzadi12 and Lizzie, so glad you are posting on here, reading posts I agree we can relate to each other. I too have always been ‘the organiser’ the one who pulls everything together but like you say sometimes it’s hard, for me the frustration of not being able to maintain my pre 120mph at everything, though it is a wake up call to just how much I was coping with. Multi-tasking has now gone in the bin! I have slowly learned to accept that I don’t have to do it all today and I do what makes me happy, yesterday I spent all day in the garden, admit some of it sitting on a chair but managed to tidy up the borders and an attempt at cutting the lawn! I attempt to achieve a little goal each day even if it’s just a post on here to let someone know they are not alone or the dog takes me for a walk and say hello to a passerby. Sending you both a hug and some positive energy 
AnaElsa hello. Posting on here has been the only place I have felt able to be honest with myself and allow myself to talk and I’m thanking you all for that . Finding people going through or been through similar things its like you said frustration at been unable to do things like multi tasking. Its time i started looking at what i can rather than what cannt and stopp eelingvguitly
Sorry my fingers keep double tapping. Thanks for that hug and positivity I know I’m not going to change oovernightt , hope Lizzie feels the same. X
Imzadi12 and Lizzie, hi. I’ve seen your posts and fully acknowledge that you are finding things tough right now but please don’t underestimate what you’ve both managed to do. You’ve come to the forum admitted you are struggling, acknowledge you have been in denial and you’ve kept people out probably for a variety of reasons. That may be a basic summing up but it is by no means a small thing that you have both done. It takes courage to post as you have and you should take heart from that. No it won’t be easy but you have started by being honest with yourselves. Allow yourselves to take some satisfaction and pride in that. AnaElsa’s post is excellent in demonstrating how she turned things around. There’s no reason why you can’t do the same.
Hello, I’m new to the forum although have read the very helpful, informative and friendly comments since my diagnosis in Feb 2017 at 48. I currently take Sinemet 12.5/50 x 4 with Rasagiline, in the main for tremor as luckily (with a small ‘l’) i don’t really have issues with movement (I have exercised all my life and currently power walk daily and attend 4 x hitt sessions at the gym). I work full time in a supervisory role for the NHS and my colleagues are unaware of my PK (in fact so are my family inc my son & mum). This I have given a great deal of thought to and my neurologist has encouraged me to tell people. However, despite reading this will become “old news”, I don’t want to be treated differently or have people look for symptoms (I appreciate this can’t go on forever). I didn’t take any meds for 3 years (apart from Rasagiline after 12 months). The Sinemet has helped greatly, I get no side-effects and am informed that this is not even the recommended starting dose. Currently there is nothing I can’t do that I did pre-diagnosis and I feel exercise is key to me remaining well. My neurologist has said there are “many options going forward” and that tremor dominant PK generally has the most benign outcome. When I started using the forum I searched endlessly for “positive” stories so hopefully this will be of some benefit to anyone newly diagnosed doing the same thing. Thanks for listening x
Hi @Bracken and thanks for taking the plunge and joining us ‘in person’ finally!
Parkinson’s affects everyone differently, and it’s great to hear that you are doing so well. It will certainly encourage others who are newly diagnosed. I’m looking forward to hearing more from you very soon.
Best wishes,
Janice
Forum Moderation Team
Hello Bracken
It is marvellous that you are doing so well and long may it be so. I am sure all on the forum will be delighted for you too and no doubt many newly diagnosed people will take heart from what you have written. It is a very valid perspective. I too feel I am holding up quite well almost 12 years on and I remain positive and optimistic. I consider myself very fortunate. The fact is however when people especially newly diagnosed, come to the forum they invariably don’t know if they are on their head or their heels,are worried,angry, frustrated sad just about every emotion there is. Sadly what most want is what we can’t give - answers, tell them what is going to happen to them because we don’t know - I don’t even know what’s going to happen to me come to that. So in responding to posts all I can do is say it as I see it - and as you mentioned you have been reading some posts I’m pretty sure you would have come across some of mine. I truly think it’s great you are doing so well and you’re right people do need to hear that, but it is your story for you to tell. I have always tried to be honest and realistic in my replies but it is about them and the story they are telling, not me and mine. I hope you continue to do as well as you are for a long time.
Tot
Thanks for your reply Tot and yes I have read your truly inspirational posts. Although doing well physically, I do have lots of dark and anxious thoughts and struggle at times to remain positive. I am from a family that has never discussed their feelings and I have certainly inherited that (much to my hubby’s frustration as he is the opposite). I am considering “coming out” so to speak as it can be exhausting keeping it to myself (still giving it some thought). I have noted the frustrations of others from health professionals and can’t believe the difference in opinions from the same area of medicine. My first experience over 4 years ago from an “award winning” nurse (bearing in mind my symptoms were barely noticeable at the time) was 1) there is no medication for tremor, 2) you will be shown a list of symptoms at every visit so we can score the progress of your disease and 3) don’t buy a memory foam mattress as turning over in bed will be difficult enough! Thankfully my neurologist is good. I am fortunate that I can email my PK nurse although haven’t done for 18 months (different one to above).
Hi Bracken nice to meet you, like you ive been struggling to stay positive ,well all the positivity thats coming from here its got me back on the horse so to speak . A whike ago one of the OT ladies told me of a method one of her old girls did to keep her spirits up so at 93yrs she swears by it ,so ive been trying it out , its a simple elastic band round wrist everytime she feels herself feeling negativity coming on she pings her band and picks up her knitting or goes for a walk ect. So im desparate enough to try it . I will tell you how it goes I know it sounds silly but my low moods are getting worst I feel like I would like to shut down I am scared of going any further down x
Hello again Bracken
I know it doesn’t help as such but you are far from being alone in having difficulty in opening up re the realities of living with Parkinson’s. It may not have occurred to you but to write as you have in your reply took courage, it is not a small thing to admit. That’s where the forum comes into its own - it’s a safe place. Strikes me however if I may be so bold, that your husband sounds like he would be an excellent personal safe place.
Ì think the issue of being open is underestimated. I also think it is very complex. On the one hand Parkinson’s is a very contrary condition. Some days are better than others, so some days we may need help and other days we manage without. Arguably this may cause us living with it to feel we are failing on days when need more support. The reasons why many don’t say much about their symptoms or their impact are numerous but to generalise hugely, it is often easier to speak about the motor, physical symptoms than the non motor but it is the latter that does most damage (in my opinion). That’s because so much, again in my opinion involves a battle with conflicting voices in the head. When the going gets tough negative voice tends to shout loudest. I call that my Parkinson’s brain separating it out helps me recognise the damage its doing. Parkinson’s brain doesn’t react as I would, it makes me feel like I’m not the me I know and I choose to focus on a ‘me response’ Not easy because Parkinson’s brain is of course, part of me but it gives me a fighting chance to counter its effect. I can’t however always do it on my own and have learnt to say to trusted people I’ve had enough or whatever and they step in and prop me up until I’m ‘back.’ There’s no weakness in that Bracken, I see it as a strength that is ultimately empowering. You can choose not to toe the family way and instead do it your way - ultimately for me, it’s the only way that works.
Do keep posting Bracken if it helps - you are safe here to be as open as you wish or can be.
Tot