I suffer from fatigue Suzy, there are days when i can do a little for a few hours and there are days when i can do very little for many hours, those days I know its best for me too rest, I never know which day is going too be which, i got out today, i drove too a shop, while i was there i was very wobbly i drove back and spent a couple of hours with friends, but that was my limit, home and sleep, i have too know my limits and try not too over do it. a little is good a lot is bad and i pay for that with other days.
But i do worry about you Suzy, and the turn you had, a neighbour had a T.I.A which is like a little stroke as i understand it, its a serious thing if that's what's happened so do please take care and seek it if your not at all sure your ok!!. sleep when your body tells you need it, eat a little, drink a little and exercise a little, but do take care , And most of all i hope you get a little further along next week.
My sleep is broken up as well Suzy, well before i was aware i was ill i started getting vivid dreams, i would lay awake for hours tossing and turning trying too get comfortable as soon as i'd fall asleep i would awake because i felt compelled too the need that i needed too move i used too call it horizontal climbing,
the vivid dreams were always the same violent episode and as soon as i closed my eyes it was there, eventually i have learnt too get rid of that one, but it has been replaced by a lesser one that occurs less at least on some nights where i am at the top of the stairs and i dream i am about too fall down it, it is at that point i awake almost jumping off my bed trying not too fall, like a myclonic jerk i spose??, the thing is when i am actually at the top of the stairs i actually feel like i am going too fall down them so i hold myself back, i also bite my tongue at times as well.
I take a small dose of amitriptyline which helps a little too help me sleep.
Every time I read your posts I feel for you so much. What medical care or investigations have you had? A dat scan for example which would show evidence or not of Parkinsonism? Have u got family support?
Thinking of you
You have above and beyond your fair share and your Mum must be exhausted. Have they tried you on any PD medication?
don t know what else to say except keep on pressing them for a second third or fourth opinion if you don t think it s psycho genic
i m sending you all best wishes
Yeah my mum is worn out bless her. No Ive not tried PD medication, my local neuro I saw said I didnt have PD based on an MRI and blood tests but I didnt think those tests would diagnose it so how can he rule it out? I think once they get psychogenic in their heads they put the blinkers on and they dont look at m with an open mind. My mum even tells the docs shes sure theres an underlying physical problem in my brain because shes seen what happens, when, how etc and that theres no pattern, no certain mood etc and how much its affected most of my life but they dont seem to listen. I really hope these doctors next week are more open minded. Its annoying because I always feel if a doctor thinks its psychogenic and then you keep asking for a different opinion and want to see more doctors etc it makes it look like you attention seeking and will make them think its all your head even more! Ah I dont know, Ive tried everything I can, Ive done CBT, cognitive hypnotherapy, councelling etc all just in case there is a psychological cause but none of it made any difference, Ive done a pain management course for a month, Ive tried acupuncture and massage, pilates, I take multivitamins and supplements, I keep active as much as I can, i really try so hard to help myself but nothing seems to work and Im tired of trying! Thank you for your best wishes x
Selfish though it sounds I'm so relieved to hear any comments on fatigue. I've just had an awful weekend unable to do anything and it's reassuring to know I'm not alone. Sometimes feel I'm pushing an elephant up the stairs! I don't have a p nurse and didn't find the consultant on my wavelength at all.so good to talk with others.
Hi, Suzynola --
I've just returned home from a long trip and am catching up on the forum. Your posts make me ache for your sufferings but make me angry when I read of those doctors (typical in every country, I think) who know it all and do not listen. Here's an idea: do you think it might be of some help if you emailed your doctor some of your posts (with or without the responses from other forum members) prior to your appointment? He or she might get the point, just as we have by reading your articulate and poignant entries here. It's a thought, anyway. I don't know if in the UK you even have access to your doctors via email. (You could mail print-outs, too.) But if a doctor would read one or two of your last posts, I don't see how he/she could approach you with a closed mind!
Wishing you well,
I'm not on any medication as yet, having early stage p.d. However as I've said before it's the fatigue that gets to me. Has anyone been prescribed amantadine for help increasing energy levels? It's currently a possible for me in a mild dose but no one seems too sure if effective. I'd be grateful for anyone's experience of it.
So very sorry to read how unwell you have been - I wish you well with your neuro appointment and will hope that you at least get a diagnosis to help you to start to move forward.
Do you respond to the PD meds well?
I found a drug ropinerol was causing alot of my jerks like you suffer from .I think sinemt also plays in this but is unknown how much
I would feel confident if the drug helps and call it PD. Doctors will always disagree ,but so what.You dont need scans as they are not definite just money makers for the system.
I would definitely avoid long hospital stays,they are very bad for PD from personal experience.
If you suffer from confusion don't be alarmed.We can avoid frustrations leading into confsion simply by making a decision,I always ask myself if in doubt in the decision woul cause problems further down" .A firm decision steadies the nervous system."
I am so glad i have the ability to be self reliant and wish i could give it to others.I can show you how to acquire it then it's up to you..
Thanks for responding earlier on the jerks.Mine are minor now since i got off ropinerol and mainly in control using concentration.
Hello my dearest buddies, well I am waiting for high tide at my nearby Seaton Sluice Suzy and Lady J, the wind is NorthernbyNortheast,, and this produces big waves even when no wind,, but today oh boy its a force 22 million so good pics to be had, worry not friends as I always fill my wellies with molten lead and though it stings a bit it keeps me anchored to my chosen spot,,,,oh dear being silly again, I dont do any of the previous in fact I am impervious to all windspeeds due to my sitting in my car at all times.
Suzy I have welcomed you elsewhere, but wellcome again , and lookin good, as are you Lady J your journey went well I trust , you may have picked up on a couple of poems which were c??p and sillier than normal , also my ON time is 7.30 to 2.30, after that I have no choice but to rest Suzy,,though its a test (of my patience) as I still want to do things but cant, I am having all the tubes feeding the Dopa Jell into me changed soon which may or may not give me yet another fleece of life,, (same as lease of life only you have to take a orphan lamb every where, oh what fun in the supermarket, they wont accept my excuse that its my sheepdog for the bewildered ), well off now to get the invigourating Sea Air,, now where did I put that Lead
Glad to see you back with sense of humour intact, fed! (Oops! Had to go back, as usual, and put the U in "humour." The spell-checker is British.) It sounds as if you are up and about and enjoying life a bit.
I had a fine trip to Seattle, yes. And I am working daily on the manuscript for my next book, hoping to have it on Amazon by January at the latest. I don't think I'll be finished before Christmas, unfortunately. One long narrative poem is short its last 40 or 50 lines, and the book's cover is an area in which I always need assistance.
By the way, I tried the last email address I had for you, and I don't think the message reached you. Did you receive info on my travel plans for July?
Hello J long time no speak, i remember a conversation we had a while ago re Donald Trump you said if he got elected you would be coming to live in England.
I am sure you was joking but if not I recommend Lincoln it is a nice city without being to big and has lots of history about it and of course it is where I live.
When Colin woke me up this morning and said Trump had won apart from saying your joking you was the next thought that came to mind. i am very surprised he has won but i suppose it prove's the US is not ready for a female leader I really thought she would win, after all who would back a bigoted sexist bulling idiot like trump whom also has a really doggy hair do as well. So my message to your fellow Americans is thus,
If you can support yourself or go out to work and are willing to integrate speak our Language and enjoy our rubbish weather then come and live in old blighty just chose where to live carefully.
J I would love to show you around but not in March / April time DBS going ahead then. When the last normal person unlike Trump leaves the US make sure you turn the lights out please. Trump will do everything in his power to put the US back into the dark age, so you might as well give him a helping hand as you leave.
TRUMP as president good god hell yes it has happened.
BB, it's just unbelievable, isn't it? But it teaches us never to underestimate the gullibility and downright stupidity of the rural voters of America. The man demonstrated every negative character trait you could name, and they still thought he would be a good President. Really, try to find one bad character trait he doesn't have. Dishonesty? bigotry? vengefulness? disloyalty? selfishness? pride and boastfulness? chauvinism? bullying? ignorance? simple-mindedness? lechery? And, yes, he has a crap hairdo, too! Furthermore, don't listen to those who claim Trump will surround himself with good advisers to make up for his mental shortcomings. Hah! We've seen the criminal types he chooses: Rudy Giuliani? Chris Christy? The latter was just last week convicted of involvement in the scandal we're calling "Bridgegate." He lied to the public and the court about his role in the affair.
The Canadian immigration website crashed during the tabulation of votes last night! Seriously, it did. But I suppose we'll get used to being the laughingstock of the world for four years. We had considerable practice when George W. Bush was in office. (Compared to Trump, though, he was a genius.) American teenagers traveling overseas used to put Canadian flags on their backpacks!
Ah, the good old days, when our President was a halfwit. Now we've elected a quarterwit.
By the way, I am coming to England next July.