I was diagnosed just over a month ago and after a few stressful weeks at work am trying to take each day as it comes.
I visited an old friend last night who is suffering with MS. I haven't seen her in a while and it hit me hard when I saw her. I told her about my situation and I think honestly of all my friends she is the one that understands the most.
I was there when she was first diagnosed with MS and that was a huge shock. But she is an inspiration to me, she now lives on her own (she split from her husband a couple of years ago), she has completed a course as a counsellor of MS and is now doing a further course in hypnotherapy. She is now even contemplating leaving her job and being a full time counsellor. She had a fall recently but just gets up and brushes herself off.
Her advice was make the most of your time now while you can.
She asked if I had goals set and I said my goal was to take my young daughter in about five years to Disney World in Florida. She said goals are good and keep you focused.
She said that you will have down days and it will take time to get your head around your condition, but I have a partner that has been so supportive, even when I am so frustrated I lash out.
She is a true inspiration to me and I think if she can do it why can't I. And now I see there is no reason why I can't.
I hope this helps others out there too.
Like you I was diagnosed recently, November 26th. It is a shock and takes some adjusting to. I start meds after my shoulder op in Jan. Collected them from the pharmacy today but no one tells you about them. Have you started any yet? Your friend sounds amazing and so strong. So many people say to keep positive. I find at the moment that any little crisis (prob not really) sets the tears off or a moody moment! My hubby is very patient and supportive so hoping we can tackle this day by day. Keep in touch as I'd love to hear how you are doing. All the best, sue
What medication are you starting on? Sorry to hear that you had no advice, I was actually given a lot of information when I started taking stuff (don't think I took any of it in beyond the word 'Parkinson's' but at least they tried).
Being positive is a great aim but it shouldn't be a pressure; it's ok to feel how you do, just chip away at it. I have days, even weeks and weeks, when I'm doing ok and then I can hit the floor again. I got completely stumped Xmas shopping tonight because I was rushing so then I couldn't get my purse out of my bag, and I couldn't get my card out of my purse and I got embarrassed so it all got worse. Sometimes I can laugh it off, sometimes not so much. Be kind to yourself and, as you wisely say, one day at a time.
Take care, J
Starting off sometime in January on Madapar and Domperidome. Only low doses. The doctor was nice but the pharmacist just hands them over and I suppose you just get on with it. It's early days for me and my symptoms are mild really compared to what folk on here suffer with. Thank you for your post, I do find people's advice helpful.
Do not underestimate the power of positivabilityness,some folks have more than others but all have it 17 yrs ago when told I had pd my reserves of poslyitiveability, was almost 0, but now despite pd (and a few setbacks) my positivelyness is more than capable of handling pd and any other probs,,except dentists i HATE DENTISTS,, well not the dentists more what they do the sound of the Black and Decker is enough for me but cearialistly it is possible to build a state of mind in which you can fend off all but the worst of dogastrophies,,, errr catastrophies,, well near enough,, it seems i have a ability to store up nasty things and use them against other nasty things,, does that make sense,
Best wishes OTANHEAVY
Hi, I just saw this post, but being relatively new to the forum, I am not sure if it is ok to reply months later. Anyway... I endorse all the comments about positive thinking, I like to focus on my thinking in general, not only as it relates to parkinsons. I've spent years earning my living helping people to change their thinking habits. The process is simple, but not always easy to carry out if you're having a bad day/sick/feeling down/anxious/can't get pregnant after years of trying etc. etc. Just in case any of this is of interest to anybody.....
My shortest summation of what takes hours in therapy or training sessions, would be, don't think of words/thoughts as abstracts that have no impact on your body or your mind. How you perceive something is as at least as powerful as the event itself, if not more so. You get more of what you focus on, so focus on whatever is good for you and you'll notice more of it and increase your chances of doing more of it. You don't even have to believe it, just thinking positive thoughts has an effect on well-being. Sports champions don't focus on losing, Chief Executives don't focus on business failure; I know that first hand from many I've worked with, including a World Champion in his sport.
Knowing all this, it still took me months to 'get my head in gear' after the shock of diagnosis so I really hope none of this sounds patronising, As I said, it's simple, but not necessarily easy when you've been dealt a blow. I've worked with some amazing people who have provided living proof that how you think affects you, your well-being, your achievements. For anyone who hasn't heard of it, it might help to find a book on NLP (Neuro Linguistic Programming) a complicated title for thinking about how you think/talk. it's not the be-all and end-all, but it is a useful start to thinking about how you might be 'programming' yourself. Meanwhile, back to some music.... that always lifts my spirits!
Thanks for your post, will look into the NLP. I did a bit of Mindfullmess years ago for therapy which helped to a certain extent. Like you say, it's not always easy when you've been dealt a blow.
Thank you for your reply. I agree that mindfulness is useful. If you do look for a book, Robert Dilts is the expert to read. Anything by him on Changing Belief Systems or NLP.
Best wishes, B
Thank you for that. I'll google him and take a look.
Hello last year forum topic and hope you are all doing well in 2017. I strongly believe that a positive outlook and goals to aim for are great ways to help with condition. Although not a fix I truly believe that if not thinking this way I would not be able to do the things that i still can. Of course the meds do the work in dealing with condition but you also need not to give up as the body will give up a lot quicker if you do in your mind. Don't mean to bring mood down but a dog walking neighbour and friend had for years struggled with stomach cancer and various other complaints but still walked his dog and ran local housing committee and generally out and about. As the inevitable happens in life his dog became to old and within 4 days of dog passing he himself passed.
Not saying we all should have a dog (i do and he is a little f****r at times but i love him) but use the things we do no matter how small to focus on and keep on going. It may sound Mary Poppinsish but i have been at both ends of the spectrum and know where i'm staying as a lot happier here. Parkinson's will do whatever it will regardless as we know at moment no cure but we can still say "Fuck you MR Parky, I may be going down but i'm going down swinging"
lol they took out the fuck word. thanks for ruining effect.
and again hmmn let me think (I don't believe it either but sometimes i do) F.U.C.K.
For you Mr Parkinson's disease.
I made a permanent positive satement. A tattoo of a fist ( with 1 finger up) to PD.on my left shoulder.
Hello and I think it's great Di...............hang on best be careful how I word this or will have to post in the R U Curious topic (which i'm not even when on Requip XL). Like your style Mr Dick Dastardly and keep on fighting. I sound like your dog Mutley when I laugh people say when i get a fit of the giggles and like your attitude a lot.
I endorse everything you said, I manage parkinsons by doing everything that helps me keep active and upbeat. Like you I think I can't change the fact that i have it, but I can control how i react to having it.
Good evening. I have been experiencing loadsa trouble trying to upload the photo off my shoulder to be my Avittar. I will get it soon ....,.. promiss. Mike
Been positive is an outlook. It doesn't fix everything, solve everything or change everything but it can change you to manage these things. Remember it is not an action but a feeling to help you try take action.
Letting out what is weighing you down is the most positive thing you can do and is never a negative (unless your one of those who reveals endings of films. Now that is a negative) as someone else will see they are not on their own and friendships have even been formed.
Been positive doesn't mean everything is or will be fine. It means i'm going to deal with it the best I can.
Maybe me but i feel like I have to justify my condition symptom wise because of how i am. I suppose I haven't helped myself but we are all different and i like who i'am.
I am a 8 and a half year diagnoses JPWHP. I suffer less than some and more than others and try to make a positive from a negative situation. I can do more than some less than others and just do what i can do. I can cope more with some things and cope less with other things and try to live as much as life while I can. We are all at different stages and will all experience these stages.
I will always have positive outlook even when i don't feel like it as how i get through. I think this post may be for me.I will explain my condition to people who ask and raise awareness but never justify it here either.
Humble enough to know i'm no better than anyone but wise enough to know i'm not the same as everyone.