Sorry about alluding to " sex " in the title to this chapter and if this offneds anyone's sensibilities but I was told by Jackie that sometimes patients who take Ropinerole can become obsessed, amongst other things like gambling with sex. If I was to find myself suffering from any increased urges in this respect I was to report back to her. Well chance would be a fine thing I thought because since my first " episode" my sex drive had completely disappeared and I almost looked forward to this particular' ahem! " side effect ". However the only side effects that I noticed were as I have said the severe bouts of nausea barely minimised by Motilium, taking unplanned naps in the afternoon and being unable to sleep at night.
As the weeks passed and the dosage of Ropinerole was gradually increased things did start to improve. Although the shaking in my right arm was almost a permanent feature I did start to feel a bit better. My appetite improved and i put some weight back on. As the dosage increased I began to look and act more like myself. But the improvement was to be shortlived. One evening, Laraine tells me whilst just sitting watching tv I started to mumble something about having a headache and my face feeling numb. I don't really remember this but Laraine said that I was staring into space and couldn't swallow even a sip of the water I had asked her to get for me. Instead this dribbled from my mouth, down my chin and onto my shirt. I said that I needed to go to the loo. Laraine helped me up but tells me that I would not let her help me get to the toilet. Apparently I stumbled there by holding onto the furniture and the walls as I went, hardly able to initiate any movement in my legs which Laraine says seemed to wrap around each other in a very strange manner. It took me about ten minutes to travel the short distance between our lounge to the cloakroom under our stairs a journey which normally takes seconds rather than minutes. Naturally Laraine was very concerned. Obviously she would be telling Jackie about this but thought it might be better to film this to demonstrate more fully what was happening to me. So as I came out of the loo Laraine started to film me on her iPhone. What the film showed was me coming through the door very stooped and shaking. I make my way slowly towards Laraine who was standing in our kitchen but I get stuck or " freeze " in the kitchen doorway and cannot seem to move. You can see Laraine extend a hand to encourage me through and I start once again to walk slowly. But I keep walking straight ahead and do not turn to my right to go thought the dining room and then into the lounge. Laraine stops me and tells me to turn to the right but l don't know which way right is. You can hear Laraine on the film telling that right is the direction of my arm that is shaking. I turn very slowly and shuffle through the dining room again getting stuck in the doorway to the lounge. Laraine encourages me through but again keep going in a straight line without turning and bump into the coffee table. I keep trying to walk through the coffee table and seem to mark time against it. Laraine has to push me back into the chair. She asks me if I want a drink of water and I mumble no that I want a cup of tea. She stops filming. We later posted the film on YouTube as we thought it might be of benefit to other Parkinson's sufferers . Some of you may have seen this but as I have said I have been " trolled " on the Internet with the " Trolls " saying that Parkinson's was too good for me and wishing me an early death we thought it best that we remove this and any other things I have posted to do with Parkinson's.
We did show Jackie the film at my next appointment at which I was hardly able to walk and it was decided that it was now time to add levodopa into the mix in the form of sinnemet.
Again the dosage of sinnemet had to be gradually increased and taken in conjunction with motililium to lessen the nausea which seemed to be with me all of the time. At. This point I was taking four sinnemet a day, one Ropinerole and want seemed like countless motililium. If you will pardon the pun? I rattled when I walked.
Again things slowly improved. I even managed to get work for while but that was shortlived. Again the instances or " episodes " of freezing started to increase, occurring mainly in the evening when I was tired. Further I was working away from home and often I would find myself in some hotel room in a strange town unable to get out of a chair or a bed for hours waiting for the freezing to pass. Sometimes Laraine would phone me but I couldn't answer my phone. On one occasion when she didn't get through she was just on the point of phoning the police in the area that I was staying in just as I managed to call her back. Neither of us could cope with this.
I went to see Jackie, told her what had been happening and she decided that I needed something which would allow me to function normally for as long as possible during the day to allow me to work. Accordingly Stalevo was substituted for the sinnemet that I had been taking. According to Jackie I would have more energy taking these and, initially her promise held true. After only a week I felt great. The tremor in my right arm almost disappeared and I was able to sail through the working day. I thought that at last we had hit on a combination of drugs that would work for me. Sadly though I was mistaken. Only a week or so after I started taking Stalevo the side effects kicked in and these were far worse that those I had suffered with sinnemet. Wave upon wave of nausea surged over me. Imagine the worst seasickness you have ever experienced multiplied by ten because that was what it felt like. My head would spin and I would feel so dizzy that I could not stand let alone walk or go to work. No matter how much motililium I took my stomach would heave leaving me unable to keep even a sip of water down. Worse still though my ankles would swell up to the extent that in couldn't flex them to walk. I felt horrible. I complained to Jackie but she suggested that I should not stop taking Stalevo but instead should double up the dose. Although I was a bit shocked by this I did as I was told but double the dose meant double the intensity of the side effects and now my head would hurt like someone was trying to drill into my brain.
Matters however came to a head one evening. I took my Stalevo at eight and as usual by twenty past I felt like death. Between the freezing, dizziness and swollen ankles I couldn't move out of the chair I was sitting in. The pain in my head was excruciating, surging through my brain like someone was trying to split I in two with a chainsaw. My stomach heaved and churned and I knew I was going to vomit but I felt like a deep sea diver weighted down by a heavy metal helmet and lead boots walking along the sea bed in slow motion as I tried to get to the toilet. When finally I made it there I dropped to my knees, gripped the sides of the toilet seat and spewed forth what little I had in my stomach. I wretched and wretched till I could wretch no more but still my stomach heaved even though there was nothing left to come up. I could only sit there on the cold toilet floor unable to move.
Laraine knows not to try and help me unless I ask her to. I didn't know it but during all of this she had been listening in the hallway outside the toilet and came straight in when at last I managed to croak her name. I wanted to go to bed and she agreed that was the best place for me but she wanted to keep an eye on me and although it was only about eight forty five she pretended she was tired and wanted to to to bed too. I said that I didn't need her to help me upstairs so she went to put the downstairs lights off and lock the doors. She was gone for only a few minutes but by the time she came back I hadn't even managed to negotiate the first step of the stairs but I insisted I didn't need help. I literally dragged myself up those stairs more with my arms than legs. Laraine followed patiently behind. When at long last I made it to the top I felt sick again. I fell to my knees and crawled to the bathroom which luckily we have at the top of the stairs. I vomited again and again.
It was now about nine thirty and whilst she appeared very calm and matter of factual Laraine was very worried. I had been able to get from the bathroom to our bedroom falling several times on the way and throw myself onto our bed but now my chest felt tight, I was struggling to breath and I had a pain shooting through my left shoulder and down my left arm. I could only whisper to Laraine how I felt and coupled with the fact that I looked grey to her and felt cold and clammy the alarm bells started to ring. She was almost certain I was having a heart attack and called NHS Direct. Fifteen minutes later an ambulance arrived. Two paramedics strode up the stairs and into the room. I could only manage to whisper answers to their questions but Laraine filled in the blanks. Soon they had me wired up for an ECG a test which they carried out three times. The first two traces were inconclusive but the third caused them such concern that they sent the trace through their mobile phone to the cardiac unit at the Jubilee hospital in Clydebank to get their advice. When the Jubilee hadn't phoned back fifteen minutes later the paramedic seemed quite impatient and phoned them back. Thankfully I didn't need of be taken to the Jubilee and I was glad of that but I was to be taken to Monklands of all places. I tried to resist but the paramedics had been told to take me there and in any case I was in no position to argue.
I must say that the treatment I received at Monklands this time was second to none. There was no waiting. As soon as I arrived there I was whizzed straight into what I think was a room specially kitted out for patients who were having a heart attack. Nurses and doctors seems to fall upon me, I was given morphine for the pain, oxygen to breath and I think motililium to stop me being sick. Although my memory of the journey to the hospital in the ambulance is a bit hazy I do remember clearly chucking up over the poor paramedic.
Once the morphine and the oxygen took effect the pain subsided a bit and I started to feel a bit better the nurse brought Laraine in. She had followed the ambulance in her car. She told me that the ambulance had been driven so quickly she could hardly keep up with it and only kept it in sight as its blue lights has been flashing all the way. She also said that when she arrived in casualty she had taken a seat in the waiting area but a nurse had taken her into a side room, a room Laraine said was the one she thought was the one where later a sullen faced doctor comes in and tells you that they have done everything that they could but sorry your husband has died. She spent a very uncomfortable hour or so in that room and admits that her heart skipped a beat or two in the seconds between the door opening and seeing the nurse's smile. I wasn't dead but I was being admitted and Laraine sat with me for a couple of hours whilst I waited to be moved to one the wards. More about the ward I was sent to later. I was only in for a couple of days during which I underwent a barrage of tests which did not indicate that i had suffered a major heart attack . It was more likely that I had angina but I was to take this as a warning to look after myself better and should try to lose weight and take more exercise. I was given a nitro spray that I was to spray under my tongue if I experienced these chest pains again and was discharged. I was to rest for a few days and try to avoid stress. Easier said than done though. If I don't work I don't get paid and if I don't get paid we don't eat. Stress if i work, stress if i dont. When I got out of hospital I emailed one of my clients who owed me a large sum of money to tell him I was home and that although I would be having a few days off I really needed to get some money from them, I wasn't to worry as they were holding over twelve thousand pounds, which they would pay out to me gradually over the coming weeks until I could get back on my feet. But weeks passed and no money arrived. I telephoned several times without my calls being returned. I left voicemail messages and sent emails. Still nothing. Eventually I sent an email saying that I was going to the courts to get my money from them . This time the they took no time in telling I would be payed what they owed me , At the time of writing this I have not received a penny from them. Avoid stress? You try avoiding stress when you are broke and the bastards owe you twelve grand.
Anyway I digress. I was talking about Stalevo wasn't I? Well after I got out of hospital I had been relaying what had happened to the " Parkies " on the Parkinson's website. Some of those who had bee prescribed Stalevo complained of similar side effects and said that there had been some evidence of Stalevo having caused heart problems in some patients. Now Monklands knew I had Parkinson's and that I took Stalevo but they did not seem to have any difficulty with that and certainly did not tell me to stop or suggest I take something else. But I was worried and phoned Jackie. I told her what had happened and why I was worried but she was adamant that Stalevo did not cause heart problems and that I was not to stop taking them. So I continued but the side effects showed no sign of abating and I just couldn't cope with them any longer. I was sick and tired of being sick and tired. I decided on an experiment to see if I could do without the Stalevo so I stopped taking it. What I did not know though until a few days later when told by one of the Parkies that it is very dangerous to stop taking any form of Parkinson's medication abruptly. Life threatening in fact as this can cause a condition known as malignant neuropathic shock, which if not treated quickly can kill. I tried to contact Jackie but she was on holiday. However through the Parkinson's movement I managed to speak to a Parkinson's nurse from England on the telephone who advised me to start taking Stalevo again but to be rigorous in taking the motililium to try and prevent the nausea. So I started again but after taking only two doses I felt so awful that I preferred death to taking any more. However I consulted my GP who put me back on sinnemet which I have been taking ever since.
Chapter 7 - Laugh and the world laughs with you !
Now I do not want to detract from the seriousness of my condition. To put it mildly it is shit, however there have been a lot of laughs along the way so far. I have already mentioned the time I fell into the gutter. What I forgot to mention is that it had been raining heavily so I hit the gutter with a splash and was soaked through to the skin. The look on Laraine's face that day was a picture.
On another occasion, Laraine had taken our car to work so I had to take a bus to a hospital appointment in Glasgow scheduled for 9am. So it was fairly early and the bus stopped on route just outside the gates of the famous or rather infamous Barlinnie Prison just as some of the inmates were being released all of whom boarded the bus and headed for the back of the bus where I was seated. Now where they got the booze at that time of the morning I do not know but all were clutching a bottle of Buckfast Tonic Wine or " Buckie " as it is better known in this neck of the woods. There were about six of them all swigging away merrily in celebration of their release. I don't know if I was nervous thinking about my hospital visit but I was particularly shaky that morning. One of the group clocked me shaking away and assumed that I was an alcoholic in dire need of a drink. " Haw, mister ur ye awright? Dae ye want a wee swallae? " he said as he proffered the now half empty " Buckie" bottle. I told him I was fine and refused politely. But his " chums " were by now chiming in. " Go oan, hiv a wee drink, itll stop yer shakes. It's Buckie, it's a tonic. It's full o vitamins. Wir ye drinking last night? Ur ye dryin out? Buckles good fur ye. Ittl out ye right back oan yer feet " I tried to explain to them that I had Parkinson's and that was what was causing me to shake and not the booze. But they had no idea what Parkinson's was and couldn't understand why I didn't want a drink.
Rock 'n Roll
I have found that strangers can be compassionate, gracious and kind. You just need to ask.
Changing Meds to balance motor fluctuation and dyskinesia - Still working on it. 
Hi from UK! Have been taking Stalevo for nearly 2 years but restless legs still a trouble in evenings. Anybody tried Horizant?
