Hi again, Gus,
Of course it is great that future sufferers of this disease might not have to endure what we are enduring if a cure is on the horizon.
Unfortunately I fear it might be too late for some of us....But let's keep smiling and hope for the best.
Take care
all the best to you aswell ,keep smileing redpoppy 
Lilac feel free to vent. 
Hi All,
Since my last post I've been prescribed Rasagaline 1mg daily. That's in addition to all my other meds, RequipXL, Madopar, Tolcapone. After a couple of days taking the Rasagaline I felt like a miracle had just happened. I felt normal again, even went out shopping. After telling everyone how good I felt, about 6 days later it seemed to stop working. Every time I took the Madopar, I felt worse, even my legs started to twitch, for want of another word. Has anyone else had this happening with Rasagaline?
As far as my blood pressure goes, it's always on the low side. I don't think I fancy going back on the Sinemet Gus, but thanks for your input. I have an initial appointment for an assessment for the DBS in Newcastle in January. I'll let you know how it goes. I'm also going into hospital on Wednesday for 4 spinal steroid injections. Hope that helps with the back pain.
Take care all
Lilac
there great injections i have epdural,lumber bilats make sure you rest for 48hr ,as they dont work so well my expereince had them for last ten yrs good luck!
Good morning Lilac, a pleasant screen name if you dont mind me saying, now I have been reading of your plight and would like to know, has anyone mentioned Duodopa to you, first I should explain how this device really changed my life , I was first informed of Dd,in2012 and when it was expained to me I immediately refused, the reason being the whole system consists of a external pump which you load with cassetes of about 3by4 inches, this load up is done in the morning, between 7-- 8am and the efffect is really amazing I struggle downstairs almost every morning, powered only by willpower, the reason for the slowness is the pump is removed at night, obviously as you may turn over and damage it , so my wife who is my own personal angel, (now dont reach for the rennies my friend) we work as a team and its now 1yr 8mnths since the device was attached, and although its not a %100, fix, its certainly %90, and will average over the year %85-90 efficeny , which is far superior to any oral medicine, it enables, well I could stop there really, but you also have to know the less palatable side of Dd, as I said the pump is EXTernal and feeds the LEVADOPA/CARBIDOPA IN A CONSTANT steady rate , the whole of your day,this invoves a week of tests you will have to stay in hospital for one week where a tube is inserted up your nose, down through the stomach to the small intestine, the pump is connected up,and I HAVE TO SAY LILAC the effect was astonishing, I could walk upright, my speech wasnormal I could write, draw,and % I was almost free of pain,no restless legs I could sleep, but this s where we enter the negatives,as I said I could sleep, but not without the most terrifying night terrors and hallucinations, this I have recently largely eliminated, using a MELATONIN based drug, but I WENT TH HELL and back before my excellent Nurse Consultant discovred this harmless but seemingly effective drug its called CIRCADIN Lilac, and although I had a bit of a nasty one last night and aworse one the night before ( doesnt sound good does it), but dont let me put you off it has eliminated the hallucinations, which MAKES ME VERY HAPPY AS THEY WERE BAD,and now the worst bit, as I have mentioned, I was trying to make you curiouser and curiouser, to prevent you rubbishing it before you know all the facts. Well hee goes, there is a tube from the pump and it enters through the wall of the ABDOMNUNUMBUNM, I just cannot get my tongue round that word Abdomenum, bugger thats near enough,this involves a operation, and you have to be cancious" or even concious" and it is not pain free, more severely uncomfortable but the op only takes about 15 -20 mins and when you are connected up, well the only description I can give is its like being born again I could plan and carry out trips away,on the train planes or automobiles, my personality normalised, though if you have read any of my posts when I am in silly mode you probably think I am 20 bricks short of a load,(a nutter), but its just my way of making (BLACKHEART STAY IN HIS CAGE) Incidently I have heard that the funding for this life changing system is to be withdrawn but some are still going ahead, so if I have not made you terrified by my post, well nothing ventured nothing gained, or VORSPRUNG DURCH TECHNIK, or even my Grandads, GRAB T CHICKEN B T NECKK OR ITL SURELY GIVETYU A PECK, he used to say that many times,long after he had sold up and retired, he had over 3000 of the birds at the peak of his business all free range, none of the hideously cruel battery farms,as I mentioned his mantra woud suddenly be heard as he watched cricket, or in bed or when I could still drive and I would take him for a pint he would shout to all that would listen, that he knew every bird by name, sadly he is no longer with us, a good man.
Well Lilac thats your lot I LIVE IN SEATON DELAVAL and my email address is available to all if you want to contact me. I have received a rebuke from my little vellociraptor for taking too much time so I will be off now, knowing my luck it will dissapear when I PRESS POST, HERE GOES
HAVE A GREAT DAY LILAC
Hello Lilac, I have replied to your post towards the end of the list so I wont repeat myself,however regarding the subject of my reply, and Im not trying it on here, but if you dont mind me saying, you are a very pretty Lady and often the subject of my post is discounted, sometimes on aesthetical grounds and as you are surely in the easy on the eye category you may dissmiss Dd out of hand, but we have a ladywith whom we became friends with, and she has Ddopa and it has made a huge difference to her life also, and there are many ways of hiding and disguising the apparatus associated with Dd I just thought you should know that.
I wish you well Lady Lilac
FED sorry my post is in fact directly above this one, talkabout thick eh Fedex Clan McFed if I can be of assistance do not hessitate to contact me
That's me home and well rested after the Epidural spinal steroid injections. Even though I've had them before in April, I wasn't looking forward to the procedure, even with sedation. Everyone looked after me very well at James Cook Hospital Middlesbrough for the 4 hours I was there. My lower back was very painful the rest of the day and during the night, but yesterday I had little pain. Its aching a bit today so I'll have to be careful not to overdo things. Have they worked at all for you Gus? I would say I had about 50% reduction in pain from the the first lot in April.
Just in case you're wondering, I changed my avatar to a picture of lilac, which I thought was more apt.
Take care
Lilac
Well hello Fedex, and thank you for your compliments. As my photo was quite old, 2005, I decided to change it to a picture of llac, the real thing.
My husband and I read your posts with great interest, and are now researching this Ddopa. it's certainly not something I would relish having done, but if it is the only way forward for a reasonable life, I would certainly consider it. We'll speak to the PD nurse. The Rasagiline seems to be taking its time settling down, but on the whole the last few days have been pretty good. That's apart from the spinal injections of course.
I'll see what the result of my visit to Newcastle in the new year, re the DBS, brings.
Many thanks for all your information, Fedex.
Lilac
Hi again Fedexlike,
Just a question or two if you don't mind. I would be interested to know why you were put on the Duodopa? Was it because other medication wasn't working as it should be? If this was the case, what medication were you taking? Apart from the Melatonin are you taking anything else for your PD?
I'm looking into the funding aspect for this, so I have the information before I go to Newcastle. I'm wondering if it's a post code lottery!
Have a good day.
Lilac
Hello Lady Lilac
The reason I opted for the Duodopa was unfortunately I had tried every treatment drug, medicine but was failing fast and could only sustain 40-45% mobility for a few hours, then parky would slap me down, I felt like I was dying Lilac and in fact the ally of parky, depression which I had suffered with for many years to a greater or lesser degree, was slowly breaking me, there was a suspicion of bi-polar disorder, but despite taking big hits from all angles, parky, depression, severe tinitus,protate cancer and a never ending series of really dangerous water infections,I was blissfully unaware the left untreated water infections can kill and of course old Fed was allocated the most severe version, oh and just to brighten up my party,a lengthy series of painfull bowel examinatios plus severe gallstones, for which I was rushed into NTGH in pure agony, so as I was saying I was taking all this battering and the PD was crippling me so when my Nurse Consultant,visited me at home I asked if Ddpa was still a option, which it was so in for a penny as they say, I thought it cant be any worse than all the awful things I had gone through, so I did the tests which were ok, a bit uncomfortable but they were successful and basiclly thats it Lilac I can only describe the result as life changing,and I still hold that view, when my wife re installs Dd in the morning I go from zero to hero in 10 mins, its a great feeling like being born again is a more accurate description. I didn't mean to ramble on but all that uncomfortablenespainsufferinglyawful actually steered me to the decision and I am glad I took the plunge, there are days when the system does not seem as if it is performing well, but it is usually some outside influence, too cold, too hot getting upset or wound up can bring on a bad attack of the parkies, and then there is the simple fact that it is't a cure, hopefully there will be sso my friend.
You asked about other drugs I use, Fludrocortisone 100mg, Madopar,125mg as required, Madopar Disperseable as reqd,Madopar Controlled Release 4 125 mg Tolteradine Tartrate 1 4mg, Mirtazapine 1 15mg, Clonazepam 1 2mg, I hope this has been of assistance to you Lilac, I have not hidden anything or attempted to paint the Dd as anything other than a last line of defence, and it works well in that role I know eventually I will become tolerant of the Levadopa Carbidopa gell but Iwill cross that bridge, when I have both birds in the hand and all my chickens have been counted,.
I wish you well Lilac, if I can assist in any way please contact me
FED
Hi Fedexlike,
Sorry I've taken a while to get back to you, but it's not been a great weekend after my spinal injections. Reading your post, though, it's nothing to what you've gone through. You've been through the mill and back! Thanks again for all the info. Surprisingly my Parkinsons symptoms have subsided a little. Let's hope it lasts.
Take care
Lilac
Hello Lilac, I took over 1hr composing usefull info about Ddpa and all the good and not so good aspects of having to live with it in your life I thought you would find it useful, but sadly the same infuriating thing happened , as it has done to many of my posts, I pressed post, and all that work was lost. I am too angry to contiue but when I have calmed down I will try and pick up where I left off, this has happened so many times it is causing me to avoid this forum, I know there is not much point in losing my temper it achieves nothing, but having important post evaporate means theres not much point in posting them
Kind Regards FED
Very interesting to read this thread. I have had low back problems including sciatica and lumbago since the age of 11 and was diagnosed with PD 11 years ago when I was 43.
I had learned to cope with the back problems, but the last few months have been horrendous. Sciatica back with a vengeance - but I hadnt associated it with the PD, just assumed it was a resumption of my previous problems.
I find it very difficult to sleep for longer than a couple of hours at the most as I wake up with severe pain in my low spine. I then thrash around like a beached whale for some considerable time to try to move into a more comfie position. I have recently bought an adjustable bed (£50 on Ebay) and it is absolutely brilliant. I sleep much more soundly as I can get comfortable and dont worry about waking my very patient and understanding husband who must feel like he is passing through the Bay of Biscay in a row boat most nights.
I try not to attribute all my ailments to PD, but the diagnosis does seem to come with an amazing variety of symptoms all painful and dehabilitating in the extreme. Optimism and a desire to beat this unforgiving disease into submission is the only way forward.
hi oxford girl i also suffer back pain & sciatica take gabapentin,amitripyline for sciactica & epdural every 6months great no pain.Also have bilat lumber injections for lower lumber !
Hi OxfordGills,
So sorry to hear of your back problems. I've suffered with sciatica,groin and back pain for years, putting it down to my job amongst other things. I didn't relate the PD with the back pain until the discomfort of constantly moving legs, especially in bed at night, made me think again. Anyhow I had another 4 spinal cortisone injections 9 days ago, and apart from the second day, I've not been out of pain. Codeine, which helps, makes me feel woolly headed and as if I'm on another planet. You certainly got a good bargain with your adjustable bed from eBay! I hope it does the trick.
I think our husbands deserve a medal for putting up with these sleepless nights, I like your comparison with the Bay of Biscay!
Good Luck
Lilac
Hi Fedexlike,
i know what you mean. I wrote a long reply to OxfordGills post the other day, only to lose it as the forum was down. Please don't give up. Any info on DDopa would be helpful.
Lilac
My husband is a life saver - dont know how I would cope without his support.
Had a lumbar puncture and ended up on my back for two weeks as I had a leak.
Also on Gabapentin but it makes me very dizzy.
