I'm sitting here alone in my little cottage, a veteran of 25 years in the RAF and 40 seasons playing in the rugby front row not a hard man but tough enough, and I'm scared to death.
I've taken my pills, I'm not shaking or throwing my arms about, for once there is no pain, but still I'm scared. Scared that the Devil's Puppeteer will find a new game to play, a new string to pull.
I know the feeling will go away and I will survive but at this moment it overwhelms my thought patterns, my sense of logic and sense of order and my dreams are scattered to the four winds. Yes I will gather my dreams in but I'm tired, very tired, and one or two of them will never be found.
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anthonyjohnrobinson
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Anthony, I'd love to say 'I don't know how you feel'... but I do. I've had a wonderful life so far, yet taken it for granted as you do. I taught for over 40 yrs mainly working with families of children with special educational needs. For most of that time I felt privileged to be paid for doing something I really enjoyed!! That was when our education system was the envy of the world unadulterated by political intereference. My sister & both her ex-husbands were RAF officers & my family (apart from my mother & I) were keen, versatile & able at sport. Most of the time I'm able to take a light-hearted view of PD: I'm blessed with a positive, gung ho attitude to life & I'm not afraid of death. But like you I get so tired, so very, very tired. Yes I have my love & my memories to keep me warm.... I wish it worked all the time. Yes there are always people worse off than me - but somehow that doesn't make me feel much better. HOWEVER after watching a dear friend die from cancer in a hospital ward where squalor, starvation, dehydration, lack of any treatment, care or compassion were the norm I have decided that I must MAKE EVERY DAY COUNT, I must push myself to the limit to prevent this happenening wherever I can. Suggestions for renaming the afforementioned ward would be most welcome, either via this site or if this infringes any protocols, to me personally using the 'messages' system. God bless you all, Angela
Loss... it is the issue. Makes me think of the lyrics, "freedom just another word for nothing left to lose." It's better when we lose the fear pain and desire... all is suffering.
Hi Anthony thanks for your post which pulled at my heart strings. I too fear what game the Devil's Pupateer is going to play next. Having journeyed with PD for nigh on 18 years now, I realise that I miss the possibilities that life pre PD offered and the hope that I could grow old disgracefully. I do miss the old me and for sure I get scared. It has been said that 'losing is gaining' - I have yet to understand that freedom and to emerge out of the mist. Tony
Thank u i have never heard it spoken so clear my boyfriend of ten years just told me to leave the devil is the only one who could have come up with pd there are so many dark hours without the rest of the world working on us. Bless all of us and give us the strenght to make this journey
Everyone diagnosed with PD is scared to death at times. Even without PD; we are all going to die some day. I feel fortunate that I have PD, and not MS or one of the many other neurological diseases. I feel fortunate to have made numerous close friends with PD. We should all feel fortunate that there are people like Michael J. Fox using every resource in the world trying to find a cure for all of us. Every day that I learn a little trick that makes living with PD a little easier is a victory that I can share with many. Start doing things to help others and you will feel fortunate; not scared.
Anothony, you are not alone.I have lived with this neurological nuesance for many years. Some days are good and some are more difficult then others. I try to stay one step ahead of this PD. Stay on top of my meds etc. Becuase of PD I have found a new me...I had to stop working, a job I loved,;, and was forced to say "hello" to the new ;me.In a way it is an opportunity to go deep inside of ourselves and discover buried talents .
I am painting now.Never did that before. So find the new you and grab life once again. Good luck to you!
I think we all feel the losses, anxieties and fear, and I hate the lack of independence. You have llved a life where you have had to be a fighter and have been a survivor. You still have much to give and are still of value.
I couldn't help noticing as I read your blog what a beautiful gift of language you have. You are a natural writer. I hope you will continue to use it.
Hi Antony, like you i was in to rugby and weight lifting. to be so fit and strong and now this .Its such a contrast .We are now the pack and i hope all the kind wards you recive help you and give you strength .
ANGELA IS SO RIGHT 0 BUT WHAT ABOUT THE COMMENT FROM ESROB - ABOUT YOUR GIFT FOR THE WRITTEN LANGUAGE - I WISH I HAD THAT GIFT - I WOUL D USE IT TO WRITE WONDERFUL THINGS ABOUT THE WORLD AND LIFE AND NOT JUST PD
I AM NOT DECRYING YOUR FEAR ASYOU ARE ON YOUR OWN I GUESS - IT MAKES SO MUCH WORSE - NOT TO HAVE A DEARLY LOVED PARTNER TO HELP YOU THROUGH THE WORST BITS
hi anthony, you are not alone. we all get scared. i was diagnosed at 40 and now 43 and i have progressed so fast in 3 yrs it is scary. i can no longer work or drive, depend on cane and/or walker. there are times i get so very frustrated i dont know what else to do but cry....i cant move so why not, right? wrong i need to take charge and not let this take me any further down bec there is hope. hang in there buddy! tina
Yes ,our lives have some parallels. 12 years in the RAF and my face shows the history of a youth spent on the rugby field, This is as nothing compared with the emotional rollercoaster that PD produces. Its very personal because it drives us backwards to a time when it wasn't part of our lives. The only coping mechanism I have is to keep looking forward, not to what PD may or may not bring, but to any possibilities that life offers. Take heart, we all get this, you are not alone. Courage mon brave you have a life to be proud of ! David
Just think of yourself as Job...God has a reason.....I dont know what it is but you..me us will find out one day and we will be sso blessed...hang in there my friend u r not alone
I really do think we all get scared at times and there is not a lot we can do but try to cheer oursleves up, and get out of that awful doldrum of depression and uncertainty.
I have found taking one day at a time is the best .
I do feel sorry for anyone who is ill and alone, because when things get bad life closes up on you and dark clouds decend. (I do know what it is like)
I dont know what the answer is, truly I don't. We just have a duty to carry on best we can.
Anthony, sorry that you are feeling overwhelmed today. Maybe it will help if you try to take one day at a time. I know it's difficult. I was diagnosed 25 yrs ago at age 40....hang in there ..you are never alone. Sending a prayer...
To the people that know me they think I have it all together. I can put on a good act as I am sure a lot of us can,But there are times we get so tired of this PD.I can be having a great day and all of a sudden have a melt down. That is when I pick myself up,dust myself off and keep on pushing.I am determined to live each day to the fullest and help anyone I can with a kind word,a phone call etc.I have found that I have a gift of writing poetry and it looks like you have a gift of writing.Try to develop that gift to help others and it will also help you.
You've eloquently described that moment when thought of what next overwhelms what good may be happening in the moment. I appreciate grieving what has passed. I probably am, but I am so busy coping in the moment. Hope you reach a point where you enjoy your life no matter what. Sounds like you deserve it.
It's a rainy Wednesday pm and I found your blog - completely by accident. I try to look and walk "normally" but I'm sure I fool no-one - the smile is a strained moody rictus and the walk is a lurch. People judge me as drunk or on something - J
I am sitting at my desk at work feeling overwhelmed, not by any devils real or imaginary but by the personality, genuine interest and compassion that glows at me from this page. Thank you one and all. Books have been written and films have been made about the loneliness of the long distance runner but the loneliness of the soul when you feel so retched and helpless is the one that gnaws. Among my drinking buddies one has terminal cancer, one has had at least one stroke, one has injured his back so badly that he is heading for a wheel chair and one has a son who is terminally ill at the age of 36. We all just get on with our lives and we all work and we all have friends, family, colleagues and hangers on but we all have the quite times. The times that even in a crowded room you feel completely empty and alone, no one feels like I feel now what is the point? The point is good people as you all know, we have come this far in our lives sickly or hail and hearty, it would be rude to leave early and miss the future, our future.
Just before I was diagnosed I was outside our local post office when a little boy said to his father, “Why does that man look so sad?” his father quickly bundled him away. I thought to myself, “I don’t feel sad, just a little tired”. Out of the mouths of babes comes the truth, this child had seen it on me and so had others but they dared not speak but the child spoke what he saw, the Parkinson’s mask. The name and the thought haunts me, so much so in fact I am sketching an outline for a book. Your encouragement of my writing style is appreciated even though it is only at blog level, it will push me on to at least two pages.
Take care one and all,
Tony
Please write the book Tony. "It would be rude to leave early" without writing the book. I look forward to reading it. Then adapt it into a screenplay. Perhaps it could propel the brilliant Bob Hoskins (Dx with PD) out of retirement to play the lead role?!?
Big hug and a round of cheering applause to you and to all your mates at the pub from cancer survivor me. Live life as is. Just do it.
Please continue to share your words because they have value and merit. As do you.
I have had PD for 10 yrs, and DBS implant surgery this year in April, Being scared is normal but not to give up and move every single day is my plan, and yes it is a plan, I'm a very logical person and the only way to survive this disease is to have a plan:
1--knowledge, learn something new daily and share,
2-- laughter, be able to laugh at yourself when my left arm gets stuck in my jeans thus not being able to pull my pants up in the bathroom. OR WHEN STUPID people stare at me when I sway or miss step-- I'd like to bark at them and say my PD makes me bark!!(NOTE: I do not do this but it brings a smile to me when I think of it while they stare at me)
3-- compassion,--- I try to help someone every day big or small
4--move ---to keep your legs usable, walk if you can try not use the motor carts at stores, it is exhausting to do the walking but plan for it, shop when on meds , not tired, and feeling good not grumpy.
5--most important-- DO NOT STOP LIVING,--- my Parkinson may define my every move but I have a life to live, and it will not consume me, I am the only one who control what I do, once you stop doing things you love little pieces of your being, your heart disappears.
Take Care, I wish all of you a good day today, one day at a time, one foot in front of the other!! and to stay upright , no falls today. KADIE
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