Just need some words to help, please


#1
Morning everybody..

As Tearfull says under another post this morning - in essence... help!

Usually, like you lot, I read these posts and often they cry out to you and something, maybe, prompts you to reply (there have been one or two lately that have had me with tears running down my cheeks...).

But today perhaps I can just ask for help?.. apart from those closest to you (and often you don't want to burden them, do you?) this is a wonderful place to come..

I've only been dx a year (anniversary this month)..albeit, in hindsight, "it" was probably around for a little while prior (which would explain lots of things).. but, like you I'm sure, I try to be positive - when I think what I can still do, why am I bemoaning my fate?... but every day I can't seem to help myself go through a sort of mental checklist - am I slower doing this?.. my chest's tight.. am I scuffing my foot - you know all the stuff - and it becomes a vicious circle and I am afraid..and I don't feel worthy of my lovely lady.. (then, of course, "I'm afraid"... must be depression/anxiety.. won't be a very good day... was all right 'till I got up, now it's going to be the same as yesterday)... and you know the rest - so it goes on and on and round and round.. and I feel wretched..(but, you lovely lot, I know I'm 'preaching to the converted!)..

I suppose physically things have progressed a bit over the year - and I'm only on minimum doses of Mirapexin and Azilect - but where's my life gone... how do you take control back... No "magic" answer, I know, otherwise we wouldn't be here - but just sometimes a life rather than just surviving?

Sorry.... but thank you whoever is reading this for letting me pour it all out - can feel the ol' eyes welling up, so better 'sign off'... Really want to help others here - but perhaps got to let it be my turn today... bursardavid.

#2
if i may pontificate
it takes time. i've had a few shocks in my time (parkinsons is [u]not[/u] the biggest by a long way, I suspect thats true of a lot of people?)and I found that, for me it takes about 3 years to adjust, to remake your model of yourself, your future and your environment. Its a bit like post-traumatic stress. Your brain will calm down as it adjusts, but worrying about worrying gets into a spiral - accept you need to go through this patch as if you were watching another person,I dont think there is a shortcut but you will come to accept the new reality and it will not be as bad as it looks now.
thats my experience, it may or may not be relevant. hope it helps

are you actually a bursar?

cheers

#3
All my adult life I have derided 'happy pills' preaching that if you had problems you needed to be clear headed to deal with them. But we are in a different place now and sometimes for a short while maybe a little extra help is needed.
Would your GP be sympathetic?
Try not to be hard on yourself for feeling low, I know it's bl**dy unfair and you don't deserve it and all the other middle of the night stuff. Is there something that has always given you solace? For some it is music/ poetry. I even find it helps if a weepy film gives me another reason to let go and howl and that gets it all out for a while.

#4
Hi ,
I am 5 years dx and not sure you ever really come to terms with this PD. I make out to family and friends I am coping everything is fine, but deep down I am not. I want to be able to do just the simple things I once could, that I now find takes forever to do, like fasten a button on my jeans or coat, help put my grandsons shoes on ready for school. But hey Ho!!

#5
Hey David hope the day has improved for you. No one is going to rebuke you for feeling the way you do your understandably grieving for your life prior to dx. We all do it and it's ok to allow yourself to be p----d off, but do get some support if you need to don't get stuck in the darkness. People here will always be around to support and talk. Best wishes to you and your good lady

#6
Hi,
This PD has a lot to answer for. It makes us sad, depressed, and miserable. This forum is our saviour when you are feeling down, there is always someone here who understands how you feel, not that your nearest and dearest does not it is just you have to have this dreaded thing to know exactly how you feel.Good days and bad days we all have them but keep talking that is the key. Dont bottle things up. I often offload to my husband how I am feeling especially if I feel sad and depressed, and this is mainly because I start to think about the future! what will I be like, mobile, immobile, unable to swallow, tube fed and the worry goes on and on. But then I stop thinking and forget about what lies ahead and live for TODAY.because if you dont you are going to make yourself and everyone around you unhappy,espescially the ones that you love so much.
You have told us all how you feel today, tomorrow is another day, this will be your smiley day.:stuck_out_tongue:

#7
Dear Bursardavid,

Everything you write makes sense, and you are not being self-indulgent in feeling as you do.

You've had the shock of the diagnosis, trying to get the meds right to help, grieving for the simple life you used to take for granted, and looking towards the future with trepidation.

No wonder you feel down - that in itself is natural.

I would ask that you do consider the possibility of a type of anti-depressant. Your brain chemicals have changed, and that could well involve those which would make you depressed. Apart from the situation itself, there is a very real possibility that the nature of PD and other alterations in your brain will mean that you lack the natural chemicals to keep you bouyant. Indeed, depression is often one of the symptoms of PD. Please do think about it - you are happy(?!) to take the PD meds to replace those now slowing down, so another type of chemical is not a great step.

Don't beat yourself up about not "coping" every day - this is a big challenge, and takes a lot to tackle.

Wishing you the best :sunglasses:

#8
HI Bursardavid - saw your signed in how you doing:question:

#9
I`ve just read your entry Bursadavid and it`s brought tears to my eyes. Only us who belong this exclusive pd club know how you are feeling.

After having a good day yesterday i know how down i felt today and have gone through the usual questions in my head;- will i have to take stronger meds,possible side effects, how long will i keep my balance,will the tremor get worse,will i be able to cope with grandchildren etc... I hide a lot from my family avoiding phone calls & visiting people (just to avoid talking because of speech problems). I have the most lovely supportive husband but i don`t feel its fair to burden him further. Sometimes it can be good to lock your self away and have a bl---y good swear and cry and try to focus on the things that are going well for you. Like you i dwell on what i can no longer do (my most upsetting thing being i can no longer dance! (my stiffness prevents this)and i don`t think i`ll ever come to terms with it, but one day i going to get up on that dance floor and have flipping good try.

I hope you feel slightly better after putting your thoughts down on the forum? i feel much better since i joined and apologise for going on a bit.

Don`t feel alone

keep talking

Big C

#10
Big C - don't wait!! boogey even if it's just by yourself with a floor covered in cushions we are all inspirational and need to remember no-one expects us to be daft and enjoy but we can and we must whenever possible. bless you for your understanding in all your posts x

#11
Hi everybody... me again - but just to say a big and very sincere "thank you" - your time, empathy and encouragement are so special.. let me just (if it's o.k with the guys that monitor this thing) bring just some individual messages.. and then something for all of you:-

Turnip - thank you.. you are right, it is a big adjustment and time, while it can't make it go away, will help to mellow - and, yes, until early retirement I was a Bursar at a College for the Arts (Fine and Performing Arts) loved it.. love to tell you about it sometime ..
Mosie - thank you, too - been offered CBT and think with what you, and others have said, will take up the offer.. and, yes, do get emotional with music, things on tv (incl. films, documentaries,and unpredictably all sorts)..and good support family and Church (two others with PD in our Fellowship)..
PB - made me smile and feel better - and I think "hey ho" would be a good philosophy for me..
BJS - actually had a good day - work voluntarily one day/week in Police Station and really able to be helpful today - did my self-esteem good... thank you..
Wifit - you're right - don't bottle it up - talking, laughing, crying - they all help - and so do you lot on the Forum - and my day got "smilier" as it went on..
Platespinner - so, so right how we took our pre-PD days for granted (even tho' we knew we oughtn't).. and then the trepidation (good word!) we face now.. (see also reply to Mosie re psychological help)- thank you...
... and all of you - please accept my truly grateful thanks for picking me up and giving me fuel for going on.. and even hope.. you've all been brilliant - shan't forget today (and will keep copies of your thoughts for me and look at them to remind me from time to time)...

#12
:grin:Glad to hear it's been a plus day :exclamation: I think my kids would say YAY!! My job brings me into contact with the boys/girls in blue and was at our local yesterday. My eldest daughter did fine arts degree (photography) love the arts nephew actor niece dancer. The rest of us more mundane existences:laughing:Thanks not required but shout out appreciated.

#13
Hi BursarDavid,

I to am looming near to that 1st year anniversay (28th March) and think all things parkies night & day. On New years day i stood in my kitchen with family all around eyes on me as i read out quiz questions & answers, i thought later how i and they would feel in the same situation if/when i'm wobbly and have outwardly obvious symptoms? It made me feel that im going to be different, a changed person from what they have always known/grown up with. It's the people you don't see often that you fear will be the most shocked at the changes in you on the otherhand i wonder what strangers think of me as i scuffle along and wonder what they would have thought of me before if i passed them on the street? Tonight however i've just accepted an invitation (previously i turned it down) to go to my friends daughters hen weekend:fearful: where cocktail making, quad biking:fearful::fearful::fearful:and clubbing dressed in a cowgirl outfit (i will don a hat & check shirt only!!) is involved. I've decided not to think about it too much and just let it happen and go with the flow :rolling_eyes:who knows i might even enjoy myself!:smile:I'm secretly terrified and worrying over everything but those three little words keep popping into my head 'live for today' so off for a girlie jolly i must go! I want to say our parkies future gives us no options, all doom and gloom, but then i have realisation of the get on and deal with it attitude (the realist in me) and we have to do just that.
Crying helps of course so sob away, scream out loud or whatever helps to get out of the dark mood. Oh yes, don't forget to talk to your nearest and dearest and if you feel you sometimes can't or don't want to burden them then get back on this forum and chat chat chat.

Hope all your tomorrows will be brighter:smile:

Take care

Diane