As the SMILEYS suggests I awake as one of Living Dead, facing the choice of allowing a return to the horrors awaiting in my sleep, or using every last atom in my shattered frame channeling them to the section of my brain that deals with moving and mobility and jump starting my muscles into supplying just enough power enabling the refitting of Duodopa, once that essential operation has been completed I am exhausted and slump onto my chair to await my rebirth, it occurs soon after Ddpa and human are connected the transformation is amazing, I go from 95% dead to 110% supercharged live, I have entered the first third of my day it will last on average 6 hrs, 6hrs of normality,and the sense of freedom is so intoxicating I overflow with joy and happiness, Parky what parky, dont know the chap, sorry cant help. and so it is for me I know my time is limited so I try to do what is needed doing as quickly as I can before the meter runs out, now remember these are average times I am presenting, some days the slowing down, or Bradykinesia begins sooner, or if I am lucky, very lucky, not at all, but onward> If I awake at seven by about two I can feel the tiredness creeping through me, I can reduce this by using the boost button on the Ddpa and it is effective most days but not all , ,one boost will allow me to function through teatime and if I am very lucky until 6 > 8pm I am and it is at this third third of my day where I must be watchfull for the beast can strike with a venomous velocity if I allow my guard to drop which Happens a lot if I am tired,its the old rock and hardplace thing which all pd victims will recognise, I dont go to bed until 1.00 -2.00am the final third completed, I have not included my sleep period, mainly because I try to go to sleep in the right frame of mind and not wake the demons that dwell in the dark recesses of the human mind, I always fail and usuallly I engage the hideous beings very soon after slumber commences, I often think if I can be so heartless and murderous in my sleep does that reflect into my conciousness in other words could exposure to these vile visions turn my mind and remove the failsafes in my mind, what if????
What if indeed Fed.
I wish i could attain a few hour's daily or nightly even of normality.
The Man i was is no more, i have no energy to fight it or can summon no energy too give life the appearance that i am able too do the simplest of tasks or aspire too do anything I used too find pleasurable, I have now reached the realisation that i am much more ill than i first realised. I hope eventually that those treating me reach that realisation too.
Hello Sea Angler
I sympathise my friend trying to explain the horrors of total imobility to someone who has not experieced is impossible, even close friends who have witnessed the damage to my personality cannot grasp the terror it induces then if you chuck into the mix, very little sleep its a poisonous concoction Last night I was fighting off a group of african Militia with heavy machine gun and pistol there intention was clear they would kill me and rape and murder my wife, this I WOULD NOT ALLOW and I fought hard but some of these savges found another way in and I heard her scream my name, but could not get to her, I DONT NEED to go on do I I woke up in a sweat at 4.00am and tried to stay awake but it was impossible, so it was back into the same dream,, terrible.
we just have to keep pushing back and hoping help will arrive for all of us who suffer this way I hope you sleep well tonight SA.
Im really sorry both of you, Im sad to hear you are feeling that way sea angler, can you not enjoy anything anymore? I agree with you Fed how lack of sleep makes everything worse, I too have lots of nightmares or just dreams that wake me up, or sometimes pain wakes me, or Ill just wake up for no reason! This past week has been worse than usual and the tiredness exaggerates the already s**t symptoms =( last night I got a terrible cramp and weirdly i didnt wake straight away cos I was dreaming and cos of the pain in the dream my toes were being pulled off! Then I woke to find I really had this awful cramp, I think its torn my calf muscle a bit, cant walk on it grr. Its weird how real pain etc can be incorporated into the dream/nightmare!
I'm afraid so Suzy, only enjoyment/relief i'm getting out of life at the moment is when i am no longer conscious. I lay awake and the moment i fall asleep i awake again until the point comes when i pass out for the night.
When i come round in the morning I feel tired as if i have gained nothing from being asleep,except being switched off, i take my pills, not because i think they'd do me any good, it's just because i'm told too and it's a routine that passes the day into night,
What i'm given too take i don't think has any bearing on my illness anymore,or effect on it, codiene for pain, propranolol for tremor and amitriptiline for nighttime (i can be bothered too spell you get the jist) i get pain now beyond pain and fatigue beyond just being tired.
I am running on empty waiting too be refuelled by my next appointment with the Neuro if it ever turns up, i almost think it's some sort of game the gov play's too keep the ill waiting hanging on a thread, where hopefully he'll put a label on this god awful experience And some proper Meds,
Although i doubt him a little and the line he's gone down, it might just as well have M.S
Aww Im sorry, I can relate to some of the things you have said, I do have times when I dont want to be awake, I always wake up lots of times in the night which is so annoying and tiring. And I too never feel like the sleep has done anything, I wake up exhausted, and it does make things harder to deal with. Its so frustrating to feel the meds dont really do anything, I find that too but I do feel it if I dont take my tramadol. I really hope you do find some happiness at some point x
Hi Fed, I have seen my husband when he has been having those terrible dreams, and acting them out and my heart goes out to you. Clonazapam has helped him and things have much improved . I hope there is something out there that will help you. Best wishes flo
Hello flo, thank you for you concern and advice, I have been taking Clonazapam for many years and I fear I am now tolerant as it seems to have little effect, last night was unbelievable in it intensity I cannot repeat in sufficent terms the sheer horror, Dantes Inferno, holds no fear its like the Night Garden in comparison.
Hello flo , Suzy and Sea Angler,
The three evils , parky, lack of sleep and Night Terrors, are battering me constantly even if I snooze on the couch in the front room I am plagued by the Terrors the know no bounds also visions often throw in with the
the enemy and if I didnt know what they were I would run from the house screaming, and my friends tromwell
hey are increasing in intensity, last night I was back through time fighting for C OH I GIVE UP THE WORDS I TYPE GO MISSING OR GO BACK TO THE START IVE HAD IT FOR TODAY
Everything I typed seemed trite, Fed, best wishes to you. flo