The Amatadine is to help with fatigue, but at the moment doesn't seem to help, we will see how it goes over the coming weeks I mentioned entacapone to her PD nurse on our last visit, maybe that is our next try.
Thanks Billy
I wonder how difficult it is to jump off a bike and phone another persons other half up and try to stir up trouble ?Years ago!
Hi Twinks
Finally, after 18 months, I today got a diagnosis - although I'm still a little confused. Parkinsonian syndrome, whatever that means!
How are you getting on with the mercuna? Are you still finding it effective? If so can you advise where you order yours from?
Best wishes
Songbird
Some Neuro's prefer to use the word 'syndrome' rather than 'disease'.
Thanks BB. God this is so frustrating. What a roller coaster ride. I don't seem any further forward.
I'm not on any medication for anything so perhaps I need to start looking at environmental toxins.
Hope you're doing ok BB.
Best wishes
Songbird
I must be Invisible ,Syndrome is the same as Disease , Syndrome is the collection of conditions, Parkinsons is a collection of conditions Known as Parkinsonian 'syndrome' You have 'parkinsons'.
but thanks anyway.
Ouch! Sorry Sea Angler. Nothing personal. You're certainly not invisible. Apologies for omitting you from the salutation. All good wishes x
HI my original letter from the numerous said Parkinsonian Syndrome when I was diagnosed a year ago it was changed in my follow up letter to Young Onset Parkinson's Disease... I think from what I understand is it's a former of Parkinson's Disease.
Thanks Kev. How have you found your first year? Are you on any medication? I wish you all the best.
Hi Songbird, sorry I haven't replied to your last question, ages ago! I still take the Mucuna Pruriens, but as a supplement to the Madopar, which I began taking last June. It seems to extend the time that the Madopar works. I keep experimenting with the time I take it. I'm finding it best to take two doses a day......one mid morning and another mid afternoon. I still have good days and bad days though, depending on how stressed out I am! My PD nurse is happy for me to do this and I always keep him updated.
I hope you are coping and wish you all the very best.
Twinks.
Hello Songbird (nice name) Twinks Betty Blue, Eileen Patricia, Astoriasis new flower, Billywhiz and by no means least Sea Angler, hello my friends and appologies fo not replying to you all where I should have replied , to say I have been ill is a understatement so we wont go here, if I say AGONY pain discomfort hideous night terrors and black depression all assited in a most accomplished way by Blackheart, there that covers my absence ,
Now I have read all your posts and the impression or feed back seems to indicated to me you are all getting things moving a poke up the backside with a sharp stick was needed by me to get the ball rolling as is with most things for old FED and though I noticed a little reticence inn a couple of posts all seems underway in short you all cracked it after a steep learning curve had been negotiated what a team eh laughing in the face of PD, and getting back on course, my treatment or lack of I should say was at a big grey stone building in Newcastle (no names no packdrill) and my after diagnosis care was zero, so a friend of mine also stricken with PD but attending Rake Lane Jubilee Day Centre, told me the team there where very good, well they were not they were and still are worldclass, when I think of the help these special people have bestowed upon old FED , well at least a £1000 000 and 12 p at least, it was through a major intervention by the PD or Anti PD staff from top to botttom that I had Duodopa which is still performing well after 4yrs and a bit that figure is over 17 or 18yrs totaling all but the Duodopa which may seem expensive but when you add up the drugs I no longer need its quite a saving, so yu pays yah money and takes yah choice at first the cost made me feel guilty, but that soon changed when I was told the many drugs I had been shoving down my throat could go elsewhere,and the improvements were amazing I grow a little tolerant of the system me thinks but I will cross any bridges when I come to them there are many promising treatments coming along which no doubt will reach the markets on my 99th birthday, old sods law eh but at least the bairns will benefit reading all your brave sorties into PARKIES LAND and making things work for you ,,well its good innit
YOUR GEORDIE ANTI PD ACTIVIST
FED or FED4, orFEDEXLIKE4 takes thy pick
hello all, i have had bipolar for the last five years the last two years my tremor has got so bad that i was sent to see a neuro in 2014 , he stated that i may have a trapped never that was causeing the tremor in my left hand, i had 2 mri scan both came back nothing wrong so jump forward to 2016 sent to see the same neuro who said this time it could be my bipolar meds causing it. so my mental health team have tried so many diffrent meds that i dont know where i am coming or going.so the tremor has now spread to my left leg as well also since june last year i have had some awfull night mares and i wake at least 4 times a night for the bathroom, i am also very fatigued i only have to mow the lawn and i have to go and sit down, which then makes me fall asleep because i am exhausted. my concentration has got so bad my wife wont let me drive any more . i had a datscan in march this year still waiting for the outcome but the neuro i seen today said he would send me to see a movement consultant does any know what they do . its got so bad my wife has to cut my food up for me also i have had to get a special cup with a lid so i don't tip any thing .
Fed, there's no need to feel guilt, these drugs have come about for us, not us to serve them, we are simply the sufferers, why invent them if we are not too have them, if there is any guilt its those who wish to make huge profits from them, we dont ask to suffer, so dont suffer guilt.its not yours.you are innocent.
Rugby, I expect a movement specialist will ask you to do certain movements and then observe them, from that as with your story and ours its all a process of elimination, to an answer, it is very frustrating that these scans and tests all take time spaced apart, I waited 8 weeks for the result of my datscan.
Hi all
I'm currently "A Lady in waiting"
This means that I have an appointment to go into Hospital but it's not confirmed until the co--ordinator can book a place and a bed in UCH (which is across the road from The National) as I have to stay in the Narional for 9 days with a tube down to my stomach as the doctors will give me Duadopa this way to make sure It works well for me. Then I will be transferred to UCH as the stomach specialists are there to have the implant implanted.
When They are happy with me they will send me back to The National to learn how to use the new Duadopa.
Everything takes so long and in The meantime, my walking is getting worse etc etc.
I know I'm a true Londoner but I'm a friendly sort so please keep me in your posts and thoughts. All best wishes
Casie &and xx
I really hope this works for you Cassie thinking of you always
BB xx
I will second that Casie you will soon get the hang of it and it does make a difference it still works well for me though a slight tolerance is apparent now 41/2 yrs later.
Best Wishes Sweetpea
FED exlike
You are absolutionalisticly correct Mr Angler after all if they can afford two 9bill eeee on Aircraft Carriers the can afford the 2 Billion for my Duodopa eh only joking by the way, its only 1 Billion.
schhhhhhhhhhh you aint seen me right FED