My readers will be aware that I haven't posted in a while. In the meantime, I have been overwhelmed by good wishes and messages of concerns and care. So, in return, I thought I should share now what happened to me and cover the journey to where I now find myself. My aim at sharing this is as a tale of hope (re-finding it) and help (learning to seek it out and learning to accept it) for people affected by Parkinson’s Disease.
The Set-Back
Beginning around Christmas 2018, the pain in my neck and shoulders started to come back and increased markedly, my PD medication started being less effective yet with significantly increased side-effects, especially dyskinesia. In the end, I had permanent excruciating neck and shoulder pain, and was oscillating between very bad "off" periods (when the PD drugs wore off), during which I could not access much movement at all (frozen), and violent episodes of dyskinesia, including uncontrolled head and shoulder movements, during the couple of times a day when the meds actually worked to switch my movement back on. The stiffness and rigidity during the “off” phases, but the unrelenting twitching of my neck and shoulder muscles, and constant wobbling of my head, during the “on” phases, fed back on the pain, as these muscle groups were literally getting no rest.
This situation just kept getting worse and worse. Lying or sitting down became too excruciatingly painful to bear for long, and I was becoming totally exhausted from repeatedly getting up and shuffling around the house while "off", trying to find some respite. I had had literally no sleep for days. My appetite was gone, and I became dangerously underweight. My exercises became too painful and I had no energy for them. My mental health failed, as I became totally locked in to anxious, looping thoughts about the situation. My family was becoming exhausted too, due to constantly being called to re-position me and physically help me up again off the bed every few minutes, as well as needing them throughout the nights. Interpersonal stresses at home began to feedback viciously, and this seriously amplified all the problems, especially as my mum and dad were becoming too frail themselves to be my caregivers under these conditions.
I became totally hopeless and helpless. I honestly just wanted to die. I have never experienced anything like this is in my life before. I became very bitter that, after everything I had done to recover from Parkinson's Disease, it seemed I had abjectly failed. I began to feel that the Out-thinking Parkinson's Project was a fraud. It all felt very much to like the end.
Yet, Out-Thinking Parkinson's is centered on the concept that there is always hope through self-help and seeking and accepting the help of others, and so as not to leave readers at the lowest point of my story, in short, I have managed to get through this ghastly situation, found the help I needed and am hopeful again. I will cover how I got from there to here (and where "here" now is) to there in this post. Along the way, I will share a number of insights I have gleaned into living with Parkinson’s Disease.
The Lost Race
During this awfulness, it seemed clear to me that I had run out of time in seeking to recover from Parkinson's Disease. The PD drugs were no longer working. I had always known that, for me, it would be a race between recovery and the closing of the window of opportunity given by the PD drugs. This is because I only started seeking progressive symptom reduction when I was already 6 years beyond diagnosis, in a quite advanced state, and already hooked on high levels of PD meds. I just didn't expect the closing of the window of opportunity to happen so suddenly. The moral of this tale is not that PD drugs are bad, they are completely necessary for most of us, but to use the window of opportunity they provide to seek progressive symptom reduction as early after diagnosis as possible, so one can maintain low doses, or even reduce the drug burden, over time, and not to bury our heads in the sand for years, like I did, when it may already be too late.
Secondly, it had become clear that my parents had become too frail themselves to be my caregivers, especially as they were at the same time looking after my ninety-nine year old grandmother full time, who lived with us too. Sadly, the reality was that the parental home was no longer a suitable, safe and stress free place, for any of us, for me to seek recovery. Again, I always knew returning to my parents was a limited time option, as there was a race between recovery and my parents aging. Asking for their help in the first place had been one of the hardest things I had ever done.
Indeed, this burden of having become a burden on my parents, and my failing health accelerating their own, played a massive role in the break down of my own mental health during this time of trouble. Even if this was indeed the end for me, and there was no hope for myself, we needed to find some sort of care home for me, at least in the short term, so that my parents could get some rest and respite. Although the situation was hopeless, it was time to find and ask for help. Unfortunately, having discussed this with the Parkinson's Nurse, finding somewhere for me to go through the usual channels would take quite a long time. Too long, as we were already all at the end of our tethers.
The Intervention
Things just went from bad to worse, until one day my brother and his wife, a registered and practising Nurse herself, visited and both could immediately see what a crisis the situation had become, and what an absolutely terrible state my parents and I were now in. With my sister-in-law, who knows how the UK health system works, we decided immediate intervention and help was quite necessary. We first dialled 111, the UK's number for non-emergency but urgent medical problems, and when we got no joy from that, there was no option but to call 999, the accident and emergency line. Here, my sister-in-law's knowledge of the system was instrumental, as she knew just what to say.
An ambulance was on its way, and in the meantime, my sister-in-law drilled me in the type of things I needed to say while in hospital in order to get the help needed.
The Ambulance Ride
When the ambulance arrived, the paramedics were sympathetic and could immediately see I was indeed in a terrible state. They agreed things were so bad that I needed to go Accident & Emergency (A&E, the equivalent of the ER in North America) with them immediately. The dialogue, and getting the case across, was greatly assisted as my sister-in-law (the nurse) could speak to them in the jargon and idioms of Hospital-talk.
After taking my vital signs, the paramedics gave me intravenous fluids for my pain, both paracetamol and morphine. My mother had packed a small suitcase while waiting for the ambulance, because there was no intention of me returning to the parental home - part of the reason for hospitalization was to ensure I could be discharged to somewhere more suitable to live, or at least be assessed for such a place - although at that time we had no idea what "suitable" would look like, or even if even it existed in the UK system for a younger person with Parkinson's Disease.
I was wheeled into the back of ambulance and seat-belted onto a stretcher/bed. The paramedic who sat in the back with me during the journey did a good job at keeping me calm and comfortable, and the pain killers were already having an obvious effect. However, this trip also gave me some useful validation of concepts I've learned along the way of seeking to recover from Parkinson's Disease. The novelty of this situation seemed to have a positive effect on symptom reduction too. I believe this is because novelty and newness is strictly the domain of the right hemisphere/cortex of the brain, which gets shut down during "off" PD periods/dorsal Vagus Nerve activation (freeze, immobilization). Indeed, I felt something I had not experienced in a long time on that ambulance ride: a sense of Adventure, which I do believe was a result of right cortex activation. I would re-encounter this type of experience several times during my navigation and egress from the hospital system, and each time with a brief, but noticeable, reduction of symptoms. This was one of the "take away" lessons I've gleaned from this period of trial and tribulations: seeking novelty and newness can be therapeutic.
The First Days
My memory of what followed immediately after arrival at the hospital is disjointed and blurred, like a waking dream, or at times, a living nightmare. This may be partially due to the morphine, which I would continue to receive four times a day in oral liquid form, and which, thankfully, did take away the excruciating pain in my neck and shoulders that had be unrelenting for weeks. Mainly, however, I believe this dream-like quality of my memories of the initial hospital episode were because my mental health really was quite shot by this time, and my anxiety levels were through the roof. Looking back, some of my behaviours and thought processes during the early days of my hospitilization must have appeared to be edging on madness.
Nevertheless, I did manage to navigate through the hospital system, albeit having to be my own staunchest advocate and defend my own rights constantly. Whilst, I don't want this to become about the failings of the hospital system, nor an attack on the health system, I do think it worth sharing some of the shortcomings I encountered, via this narrative, especially in regard to the care of younger people with chronic conditions. Sadly, I dread to think what might have happened if I was less able to speak up or less knowledgeable about the medical treatment of my own condition: some of the gaps in the system, especially in regards of communication from one department or the other, or from one doctor to another, which I nearly fell through during my time in hospital, could have been disastrous. One example was when I was prescribed the wrong medicine, due to one doctor not being able to read the handwriting of another doctor in my medical notes.
After a couple of days (I think) of being passed from pillar to post, and being seen by a myriad of doctors and medical personnel, none of whom could really make head nor tail of what they saw, I eventually found myself admitted onto a ward and in a hospital bed.
The Shortfalls
I was in hospital for over seven weeks in total. During my stay, one thing was starkly illustrated to me: how much awareness and education is still sorely needed about Parkinson's Disease, especially in regards to Early/Young Onset, and even amongst nurses, health care assistants and medical practitioners. This was particularly true for the Orthopedic ward where I found myself for the first week. I ended up here simply because they had a spare bed available at the time of my need.
Throughout my time in hospital, I experienced various degrees of unhelpfulness, due to some ill-educated hospital staff having lack of knowledge/awareness of PD. This varied from open mocking to a blank refusal to help, and often arose because, when the PD drugs do switch my movement back on, I can still move around quite normally, thanks to all the recovery efforts I've documented here. When some of the hospital workers witnessed, for a couple hours a day, that I can move, they assumed this was my "normal" state. So when I would sink back into the total immobilzation/freeze I was experiencing during my "off" states at that time, the same workers believed I must be pretending/making it up that I couldn't move. Why they thought anyone would pretend to be frozen on the bed for hours is beyond me, yet they would say openly to me that "its all in my head", or refuse to help, saying "you can go to the bathroom yourself, I saw you do it earlier", or joke about me to each other within my earshot , or roll their eyes and make faces. I had to educate a lot of people during my time, and be quite vociferous about it.
As a definite example of what can go wrong due to the lack of understanding of Young Onset PD, on that first ward I would see meals come and go: if I was "off" and immobilized on the bed at the time meals came, no-one would be available to feed me, they might just wheel the trolley table to be closer or put it across the bed. This just made me feel even more trapped on the bed, and of course having the food closer has nothing to do with my lack of fine motor skills disabling me from being able to feed myself. Then, if the PD medications had still not kicked in by the end of the meal hour, the now cold food would be taken away again. This happened several times, and despite the fact they were worried about how underweight I was.
The Consultant
Various doctors came to me see in that first week, as the hospital tried to classify my case to a particular specialism. One day, out of the blue, a consultant turned up. This is the man I must credit with saving me, although our exchanges would be quite turbulent and there would be resistance on my part. On that first visit, we had a long (in terms of standard consultant time) discussion, during which he convinced me of his knowledge and experience and that he wasn't shackled by the standard medical schooling on PD. I must admit, I was impressed.
By the end of that first conversation, he had convinced me that he had the right diagnosis and to go with his plan of action. According to this plan, I was about to embark on a psychologically terrifying hospital adventure, against which I much test myself to the limits. I did not know whether I could do what he asked until I tried. The one thing in my favour, was that the consultants ideas and conclusions really piqued my sense of scientific experimentation.
The Backstory
During the first few years after my diagnosis, I must have tried just about every medicine used to control the symptoms of Parkinson's Disease available at the time. I was quite unlucky, in that barely any of them helped me or else their side effects outweighed the benefits. The only thing which really helped me was the mainstay treatment for PD, which has not changed in decades: l-dopa supplementation. L-dopa is a natural chemical, both found in food and created in the body itself, from which our bodies and brains makes it dopamine supplies. In my case, l-dopa was given in the form of a prescription medicine called Madopar.
However, the current medical practice is to try to keep l-dopa supplementation to a minimum early in the disease, because the body becomes habitualized to it, meaning its effectiveness begins to wane after 5-10 years, and the side-effects increase as dosage goes up. So like many, I still ended up on a cocktail of PD drugs to try and keep the amount of l-dopa being ingested as low as possible.
Yet, during those first 6 years, I did absolutely nothing to help myself, just relied entirely on the drugs to be able to maintain my highly stressful lifestyle. I did no exercise/movement therapies, did not alter my diet, did nothing towards stress reduction/coping techniques. I tried to carry on regardless. I was in complete denial and had my head buried completely in the sand. Unsurprisingly, my condition degenerated and symptoms worsened quite quickly.
Indeed, by the time I changed my ways and began to do everything I could to recover, about six and half years after diagnosis, I was already in a bad way, both physically and mentally, and was already on a high PD drug burden to keep me going. By this time, Madopar had already lost its lustre for me, not every dose would work, and I was already experiencing the switching "on" and "off" - oscillating between being able to move freely and being rigid and stiff for hours as each dose wore off.
By the time I moved back to the parental home about two years ago, I was on:
5 to 7 doses of Madopar 125 mg capsulses a day;
up to 5 tablets of "dispersible Madopar" 62.5 mg - quick acting version for "emergencies", although I was using habitually;
12 mg of Ropinerol, a "dopamine agonist" drug a day - the maximum I could tolerate without vomiting;
This cocktail ended up giving me terrible dyskinesia (uncontrolled flailing movements) during the periods they did "work" to switch me back "on", and so I was also on two tablets of Amantadine a day, which helps to control this side effect of the other drugs, but only has a working life of about two years, which I was approaching.
During the first years of trying to recover, I did manage to wean myself of the Ropinerole, the dispersible Madopar, and the Amantadine completely, which ameliorated much of the dyskinesia and other side effects. I enjoyed my optimal condition during this stage of recovery, and the only PD drugs I was taking was up to seven Madopar 125 mg capsules a day. As I was sleeping well, I did not need to take any overnight. However, despite doing everything I could to recover enough to be able to try to reduce the amount of Madopar I was taking, I was never able to, and this has slowly crept up, and then accelerated quickly as the situation at home became increasingly stressful, around the time of Christmas 2018, after which I was taking around ten Madopar a day.
I've included this background as it is important to understand why I put my faith in the consultant during my recent hospitalization.
The Diagnosis
My understanding of what the consultant told me is that he essentially diagnosed me with "l-dopa poisoning": that the high doses of the Madopar which I had been habitualized on for years, was actually what was causing my problems. He also said I had "Dopamine addiction", i.e. that I had no self-control over how much and when I taking the drug.
While I baulked at this, especially at the use of the word "addiction", I knew in my heart of hearts and in the analytical part of my mind, that this was pretty much the truth. After all, the terrible dyskensia I had been experiencing upon entering the hospital, can only be ascribed to too much of the drug, because it is one of the side-effects, not a symptom of the Disease itself, and indeed the Madopar had long since stopped working effectively, sometimes giving me only two or three "on" periods a day, despite the number of doses I was taking. Yet it was the only thing which I had which could possibly get me out of the then excruciating painful "off" or symptomatic state, so it was/is psychologically addictive in terms of seeking relief.
Thus I now see how I had become trapped in a psychological/physiological vicious circle of worsening symptoms and increasing self-dosing of the drug. That high a dosage was causing me more problems than benefits, rang very true. Indeed, my logical brain already knew this was the case. It is well known that l-dopa supplementation is biphasic - like, everything, a little is beneficial and even neuro-protective, but there comes a person-dependent point at which it starts to be toxic as the dosage is increased.
The consultant wanted to first get me down to a dosage, which when it did work, I did not get the dyskinesia. The first stage of the plan was to dramatically reduce my Madopar medication by one pill a day, until I was down from ten to just four capsules a day. WARNING: DO NOT TRY TO DO SOMETHING SIMILAR AT HOME OR WITHOUT MEDICAL SUPPORT!!!
The main point was to give my system a break. As an "addict", this was psychologically terrifying, but my rational mind knew the truth of it, because decades ago, it was part of the medical care of l-dopa supplementation to receive yearly "drug holidays", where the person with PD would be taken off the medicine while in a safe hospital environment. This would help reset the system and ameliorate the side-effects such as dyskinesia for some further time.
Indeed, the point that if I ever I was to get the drugs down to less toxic levels for me, here was my opportunity while in a safe and supported hospital environment with doctors and nurses around, which I would never be able to do safely at home on my own. Indeed, to re-iterate: I do not advise anyone try to rapidly reduce their PD drugs at home, on their own, or against their doctors orders - it is very, very dangerous. I was also on Morphine, again with supervised dosage, and I know I would not have been able to get through the pain or mental anguish of withdrawal without it. I also want to re-iterate that although we found a solution for myself, everyone is different, and just because it worked for me, this won't necessarily be the answer for others. Nor is it necessary the case that the drug burden which was toxic levels for me, will be so toxic for others.
The consultant also told me that he needed to remove my dyskinesia entirely so that he could take a DAT scan, which detects dopamine activity, or lack thereof, in the brain, from which he could tell what flavour of PD or Parkinsonism I have, the results of which would inform the plan. I suspect this was a white lie to help me comply, because the scan never did happen. The argument was that on a much reduced load of Madopar, I would actually be much better off, albeit with lots of "off" time, compared with the terrible state I entered the hospital in. So with much terror and trepidation, I agreed to go along with the first stage of the plan.
The First Stage
It was a tough process, physically and mentally, and to be honest I don't remember too much about it now. Again, without being on the Morphine, I doubt I could have done it all. Even then, I was resistant to the speed of the withdrawal, and whined enough to get it slowed down to one dose reduction every couple of days. In the end we only got it down to five capsules day.
My memory clarifies again by the time we got down to five and kept it there for several days. Since each dose would give me between one to two hours at most "on" time, and on average, only three of these doses would switch my movement "on" at all, I was spending much of these days "off". Yet, I was indeed, in many ways much, much better off now than when I had come into hospital.
Firstly, the extreme dyskinesia I had been experiencing on ten Madopar a day had all but disappeared. On the lower dose of five a day, I found that when I was "on", I felt like "me" again, almost "normal", such that the casual observer might not know I had PD at all, and the amount of "on" time I was getting was still more than I had been experiencing for weeks before on twice the dosage.
Secondly, I could tell the pain had diminished greatly, beyond what the Morphine had been doing, and also this was now further relieved, instead of exacerbated, by the "on" periods, as my shoulder and neck muscles got some time during which they were relaxed. Thirdly, although I spent lots of time in the "off" state, with the rigidity, chronic fatigue, emotional dulling and brain fog which comes hand-in-hand with it, I was no longer completely frozen/immobilized during the "offs". While difficult and tiring, I could now once again summon enough movement to get myself off the bed, shuffle to the toilet, get a cup to my mouth, engage in conversation, etc. Here, all I had done to recover previously came back into play.
This gave me the proof I needed that "less can be more" with l-dopa supplementation. In reducing from ten to five (by half) I had gone from an unbearable situation in which I was suicidal, to a just-about-bearable one when I had some glimmer of hope. To regain some quality-of-life, however, the long gaps of "off" periods between the utter relief provided by the couple of "ons" per day I was now getting, somehow needed filling in. Clearly more l-dopa/Madopar capsules could not be the solution, as too much had now been proven to me was the problem.
The consultant first re-introduced dispersible Madopar 62.5 mg tablets, as a "when needed" prescription, but advised only using this when I was experiencing a very bad "off", in order to take "the edge off", and not be tempted to make it habitual. Having learned my lesson, I stuck to this and only took it when I was desperate for relief. Indeed, if I took more than a couple of these extra doses a day, the dyskinesia would come back, indicating that I was approaching toxic levels again.
As I covered above, I had already tried virtually all the other alternative PD drugs, and never found one which was helpful. It seemed from this point, I was running out of options, and this may be "as good as it gets". However, the consultant had one option up his sleeve which I had not tried before.
The Alternative
The Madopar capsules were now given to me by the nurses, on a schedule of 6am, 10am, 1pm, 6pm, 10pm, whereas when I was self-medicating at home, I would take a capsule as soon as another ran out, one after another, or wait for one and half hours before deciding a dose was not going to kick in, and then take another. It was this lack of scheduling at home which eventually got me into trouble and ended up with me taking toxic levels (ten or more capsules a day was above the toxic level for me personally).
In my own defence, I will say being in the "off" state after a dose has worn off, without another dose in the system and hence without the clock ticking to the next "on", can be psychologically terrifying. My addiction to l-dopa is not the desire the feel good, but the abject fear of being in the PD crisis state with no hope of relief on its way. For example, on the hospital schedule, the 6am dose might kick in about 6:30am, I would have movement until 7:30 or 8am, and then have to wait 2 or more hours, until 10am, in the "off" state with no hope of relief until then, and even at 10am, would have to wait to see if that dose would kick in at all. I still find these large gaps terrifying.
Apart from drastic action like Deep Brain Simulation, some other drug not based on l-dopa would be needed to try to cover the gaps. As I covered above, I had previously tried most of the other drugs in my time, and none had really helped. The hospital consultant, however, had had some success with a drug I hadn't tried, which is delivered by injection (in a very similar way as insulin injections for diabetes) instead of orally.
This drug is called "apo-morphine" (that's the chemical name, not a pharmaceutical brand). Apo-morphine is an interesting chemical for many reasons, and I will write a separate article on it in the future. It was originally derived from boiling morphine, but is not an opiod itself. Its molecular structure is such that it fits like a key into the dopamine receptors of cells, so that these dopamine sensitive cells are "tricked" into functioning as if they had encountered dopamine itself (apo-morphine is therefore a "dopamine agonist"). The consultant had found that injections of this substance could work amazingly well for some people with PD (while do nothing for others), including switching people with PD back "on" almost instantly.
Whilst in the hospital ward, another man who had had PD for over ten years, but was much older than me, was admitted, and he was able to provide me first hand anecdotal experience of apo-morphine. He had been using the injection pen version for some time, and still felt almost instant benefit when taking it, at least for a short time: unfortunately, the drawback is that it only has a short duration of action before it is washed out of the system, about an hour or so. He was now on a pump version which continually injected the drug slowly into his system, but this seemed more problematic and hit-and-miss to me from observing this gentleman go through his "on"/"off" periods.
There are of course side-effects with this drug, and it is not for everyone. I found this out myself during the initial trialling of it under the supervision of the doctor. Some people can have severe allergic reactions to it, so a supervised test is necessary. An ECG is also required before the test. Three doses of increasing amount were tried on me. The first two failed to do anything, and we were all losing hope this intervention might help me. But when they increased the amount delivered by another 1 mg for the third dose… BAM!!! I was switched "on" within seconds. But I experienced side-effects which were very reminiscent of what Ropinerole (another type of dopamine agonist) used to do to me - I went very pale, vomitted, sweated, had dizziness and dyskinesia. It also made my bowels open and, rushing to the bathroom, I fainted on the toilet and woke on the floor with doctors and nurses looking down on me calling my name: another major side-effect is low blood pressure. The "on" effect lasted for about one and a half hours before I sank back into the "off" state.
Here, then, was something which could switch me back "on", at least for a while, which was not l-dopa based, capable therefore of filling in some of the gaps in the Madopar action. The question remained whether a dose and a scheduling could be found where there was a workable balance between the benefits of doing this and the side-effects.
The Alternative
I began receiving three injections per day, of 3 mg each, of apo-morphine. These worked, in that they would each buy me around one and a half hours relief from the PD symptoms, but the "ons" were still not nice in themselves: lots of nausea, dizziness, and dyskinesia in particular, that problematic uncontrolled wobbling of my head and twitching of my shoulders, to the level that I wasn't really functional during the apo-morphine "ons". Still, that was another guaranteed 4.5 hours a day "on" time, so there was hope again that an option other than l-dopa still existed for me.
Unfortunately, as the days passed, I began to decline again. Firstly, the Madopar seemed to stop working, very few doses would switch me "on". I was left with only the more problematic, side-effect laden apo-morphine "on" periods. Moreover, the fact that I was stiffening up again and becoming rigid and immobile while "off", but with the wild dyskinesia induced by the injections in between, meant my poor shoulders and neck muscles were getting no rest again. The excruciating pain started to come back, and I felt that, day by day, I was slip-sliding back into the condition I came into hospital with. Indeed, I had to keep getting up off the bed frequently again as the pain while lying down was becoming unbearable once more, and this made me exhausted. I lost my appetite, and my weight began to drop again. My mental health recovery broke and I became consumed with anxiety and fear about the situation.
Worse, as the doctors had now consigned me as "medically optimized" and "medically fit to leave", and the discharge process had hence begun. I knew I was running out of time to go through tweaks and proper optimizations of my medicinal regimes before I was sent back out into the world. Worse still, the consultant who I had been under and came up with the plan was now on vacation for two weeks. I kept telling the nurses about how I was feeling and what was happening, and eventually the doctors were called in to review my meds, although the stand-in consultants had little idea about what had been exchanged between "my" consultant, and had different opinions and ideas. For example, one stand-in wanted to up my Madopar as a solution, the very thing the original consultant's plan sought to avoid at all costs.
I felt like I was falling through a gap in the communication systems again. I kept arguing my case and insisting things were getting worse again, and resorted to writing a detailed log/diary of what was occurring, and asked for these to be included in my medical notes. Eventually I managed to get the apo-morphine dosage lowered to 2 mg per injection.
As my days in the hospital were running out, fortunately this lower dosage seem to resolve things. The apo-morphine injections at this dose still give me some discomfort, and a feeling of very chemical "ons" compared to the now very good quality "ons" I get when one of the Madopar doses works for me. The lower dose of apo-morphine also only gives me about three quarters of an hour to an hour’s relief, and need very careful delivery - any loss of the liquid drug due to hurried injection means it doesn't work.
Nevertheless, these brief interludes apo-morphine provide, give me enough further temporary relief from the PD symptoms to be able to get through the days. The point that I am pretty much guaranteed relief at specific times of the day helps on the psychological front a lot, which hasn't been the case for Mapodar alone for me for years. I have timed two of the injections to coincide with breakfast and evening meal, which ensures I capable of eating them. The third dose is the one which makes the largest difference. I have it before bed, which guarantees I can get comfortable and get to sleep.
Before I left the hospital, the consultant also included three more "as and when needed" injections of apo-morphine a day, if required. Having learned my lesson with Madopar, I strive not to use these unless necessary, but they give me the freedom to do something I haven't been able to do in years - schedule, e.g. ensure I can keep appointments or guarantee I'm "on" when I have visitors.
However, as the consultant kept saying to me "drugs aren't the answer to everything" and two more things needed fixing during my hospital stay. Recall I'd put myself in hospital because I just wanted to die (suicidal thoughts) due to the constant excruciating pain I was having, and also in order to get discharged to somewhere "suitable" because the parental home was no longer a viable or safe place for me to be. So my mental health/outlook would also need to be fixed during my hospitalization, and a "suitable" place to live found, otherwise all the fixing of my physical symptoms with drugs would be for little or nothing.
The Mind
During my stay in the hospital, I was seen by other teams while on the consultant's ward, including the dietians/nutritionists, due to concerns about how I had become so underweight. I was barely eating anything while at home, having become increasingly anxious about food, which may have verged on an eating disorder. I ended up excluding too many food groups for fear that they were making my already out of hand symptoms worse.
I would also see the pain management team, who advised on taking morphine, and suggested ibuprofen gel for rubbing on my neck and shoulders.
The main consultant, perhaps unusually for a medical doctor, kept telling me that drugs are not the answer to everything, and how he had seen mis-prescribed/misused PD drugs of all types, and morphine too, ruin lives, due to their side-effects and addictive natures. He kept telling me that part of my problem with the pain and the prolonged "off" periods (in fact, he had a concept called "pseudo-offs") were due to the overwhelming anxiety, depression and stress levels which I clearly was suffering from. Indeed, recall at the time of going to hospital, the constant pain in my neck and shoulders had resulted in constant, obsessive anxious thoughts about the situation - I was totally locked in to it both in body and mind, and had had suicidal thoughts. Even then. it took me a long time to accept what the consultant was trying to say, because all I could hear was an accusation that the pain and the immobility were "all in my mind", although he never said that, and would go on to re-iterate that he had never said that.
In fact, what the consultant was trying to say was already well known to me, once I could face it, through long experience and thorough research. The point is that the efficacy of PD drugs is indeed very strongly tied into mindset, brainwave activity type, and nervous system state.
People with PD suffer from abnormally high levels of abnormal beta frequency brainwave activity, which are associated with busy, looping, anxious thoughts, and, importantly, beta waves are also associated with a lack of or shut down of movement. Some scientists even believe that these anxious thoughts are primary and cause the movement disorder. Indeed, most people, even those without PD themselves, who have experienced depression, anxiety, grief, etc. will have know how these states will make us just not want to move, or just to curl up, to lie down in a darkened room, or feel acutely physically fatigued.
My own experience is that it is a super strong two way feedback loop in PD, i.e. that physical pain/immobility feed the mental anguish/brain fog/anxiety, and vice versa, and these pathways are so well trodden by the person with PD's biology that we fall back into them extremely easily and it is very hard to get out of these deep ruts. Breaking this vicious circle circuit is therefore key to progressive symptom reduction, such that stress and anxiety management is key to living well with the condition.
These consideration also go for how effective the l-dopa based drugs are. For me, if I take a dose of Madopar, its likelihood of working at all, or the time it takes to kick in and switch me "on", and how long it will keep me "on", are strong function of my mind and nervous systems states. If I can relax as best as possible and quieten my mind as much as I can after taking a dose, it is much more likely to work and will kick in after about half an hour. If I am very anxious and depressed, and my mind is stuck in looping negative thoughts, the dose will take up to two hours to work, or not at all, and will not last long. In order to explore this link further, I am currently trialling just to lie down on my bed, as still as possible, while listening and trying to absorb guided meditations, as soon as I take a dose. I am finding if I can tune into the meditation, this does make the dose work more quickly and effectively.
The Psychologist
Returning to the story, while in hospital I was also under the Mental Health Team. While I could go on to discuss many failings of the hospital system for people with PD, I cannot fault the mental health support I received while hospitalized. The Team Leader, a Clinical Psychologist, came to see me many times, and became an advocate, helping me survive in the hospital system, making sure my own concerns and anxieties were written up in my medical notes and communicating what others had written in my notes, interceding when necessary. For example, I was, and remain, very anxious about getting my drugs on time, once control over them had been taken away, and as the time approaches, I still get very stressed that the nurses might be late coming with them. The psychologist helped ensure this specific anxiety, and its impact on my symptoms, was recorded clearly in my notes so nurses knew that it was important that I get my drugs on schedule.
I do believe I would have fell through some horrible gaps in the system. without the oversight of the psychologist and his team. He even telephoned me to see how I was getting on after I had been discharged from hospital, and to discuss what resources I might need while in the community to ensure continuity of care.
The team also helped me a lot to stablize my mental health. For me, the most beneficial therapy was just having someone to talk to about my issues (counselling), but they would also discuss different techniques and approaches to dealing with anxiety. I was quite surprised to see how much "mindfullness" and "somatic experiencing" has penetrated into mental health hospital practice. They gave me visualisation techniques to work with, and would also ask me to notice how things felt in my body as I talked about specific anxieties. In the last couple of weeks of my hospital stay, they also took me off the ward for half an hour or so, and would wheelchair me around the hospital grounds and chat. This simple act was probably the best thing for my mental health at that stage.
I was about ready to leave hospital.
The Need
One reason for getting taken into A&E (ER) was as an exit route, as even if I couldn't be fixed, I needed to quickly find myself somewhere more suitable to suffer, as my parents were now too frail themselves to cope with my needs at home. I eventually spent seven weeks in hospital, managed to survive various trials and tribulations due to failings of the hospital system, yet did eventually get myself fixed up enough physically and mentally, that my condition became just about bearable enough again. As covered above, this "fix" was mainly achieved by heavily reducing (halving) my l-dopa based medicine (Madopar) while in hospital under supervision: the culprit for the very sorry state I had found myself in turned out to be due to having over relied and over dosed on the Madopar for years - I had been poisoning myself.
At the time of entering the hospital, we had no idea what an exit plan might look like, just that for my parents sake, returning home was not an option. We hoped that the hospital would help to find me somewhere "suitable" where they could discharge me to. While in hospital, I was therefore of "no fixed abode". Again, we did not know what "suitable" meant in terms of the “where”, nor did we even have much idea ourselves what my own needs were.
The only discharge options somewhat familiar to us seemed to be:
1. returning home, but with external carers who would come in daily - this was not an option we could realistically consider, for various reasons, but mainly because even at its optimal, my condition is so unpredictable and fluctuating, that there is no point having care scheduled at specific times of day, and hence day-to-day, I may no need, little or lots of help at any one time, and also I can need a lot of help throughout the night - it was this night time care which was having the biggest impact on my parents' health;
2. going in to "assisted living" self-contained accommodation or a council flat/apartment, again with carers scheduled or on call, but otherwise living alone - a very frightening thought, with the same issues and more as returning home;
3. a care or nursing home, where people were around all the time - here our experience was such that we could only envisage me being stuck in a bedroom for the rest of my life, albeit attended to, or sitting in armchair, surrounded by drooling old people with dementia.
During my stint in hospital, I had plenty of time to think, and gather experiences and insights, about what my care needs actually are now, which I had somewhat buried my head in the sand about before. As perhaps these needs will go for other people with PD more generally, I have therefore sought to spell these out here in case they help fellow people affected by PD start considering their own needs too.
The overarching theme of these needs is “Feeling Safe”.
1. I realized from being on the hospital ward that having people around me 24/7 is actually very important. This was confirmed to me during a week when I was isolated in a side-room off the ward, due to an episode of diarrhoea. I felt much more vulnerable, much more anxious, and much more depressed than when I was on the ward. Indeed, I realized that when I was living at home with my parents, I would feel very unsafe if they went out and left me alone even for a couple hours - I would literally become scared stiff and my PD drugs were much less likely to work. This was also underlined in a moment of epiphany during a counselling session with a hospital mental health team member while in isolation. I burst into tears and cried "I'm so lonely; I'm so scared to be on my own".
2. I need someone else to take control of my medicine, since if I am left to self-medicate, I will once again start self-poisoning and over-dosing. I know I will be unable to resist reaching for extra drugs whenever I feel fearful enough, am having a bad "off" period, or if I panic, and the rising drug burden cycle would begin again. I need this external control to be reliable enough such that the medicine will be delivered reliably on time, due to my massive anxieties around this. The complex medicine regime I have on leaving hospital, with both scheduled and "when-needed" PD pills and injections and painkillers (I'm still on morphine, but am trying to wean myself off it) means that someone would need to be on hand virtually every hour of the day.
3. I require good, nutritious food preparing for me and need to get back to, and then maintain, a healthy weight. This includes encouragement to eat, and reassurance to that I shouldn't feel belittled in the instances I need assisted feeding when I am completely "off" during meal times.
4. I need caregiving by people who have a good understanding of the disease and my condition, and who don't ignore, mock or disbelieve me - implicating that it is "all in my head", which occurred a lot in the hospital, for example, is anathema to me and causes my symptoms to increase. I need knowledgable external oversight and monitoring of my physical and mental health, intervention if things start to go awry again, and reassurance and a calming voice when I frequently get over-anxious.
5. I need to be allowed and encouraged to move around and exercise/stretch while "off" to prevent rapid disease progression, not to be confined to bed or bedroom for fear that I might fall or freeze, yet be quietly watched over when I do try to mobilize.
6. I need the opportunity, encouragement and any required help to engage in plenty of social activities, to go outside and further afield, and to meet new people, without having to schedule such opportunities. I need caring oversight to ensure I don't social isolate myself nor become agoraphobic again.
7. I need the opportunity, encouragement and any required help to engage in plenty of stress relieving and management activities, such as arts and crafts, singing, dance and music therapy, puzzles, etc.
Now having identified these needs, this made the mismatch with the three known options of where I could be discharged to as identified above even more stark. So even though we had asked the hospital for considerable help to find me somewhere suitable to be discharged back out into the world again, we had little hope that a good match to my care needs could be found or even existed in the UK.
The Home
Given my identified needs, it looked like being discharged to a "nursing home" was really the only viable option. To us, however, "nursing home" in the UK is synonymous with "old people's home", and even those which specialize in neurological conditions are largely reserved for older folks. We didn't have much hope that something suitable to cover all my needs was even out there. It looked like as a younger person with PD, I would fall through the gaps in the system once more.
The discharge process - the search by the hospital and contractors to find somewhere they could move me to, went on in the background and we had little sight of this process ourselves. It turned out our worries were more or less correct. There was no nursing home in my home town to be found which would take me - many were full, while others had a lower age limit for people they would take, typically in the fifties or sixties or older.
However, one day the hospital's case manager came to see and said they had found somewhere which would take me - a nursing home in the next town over, close enough to my parents that they would still be able to visit regularly (about 20 minutes drive we estimated). I looked it up online, and it looked surprisingly favourable, but the website stated they only took people over 50. Meanwhile, my parents went to visit the home in person, and were very pleased with what they saw and found out, including that they did indeed take younger people, and people under 50 were present already. My parents bought me back some brochures, and this was enough to raise my hopes that some possibilities of my needs being met did exist.
Indeed, the brochures not only covered, but actually emphasised, many of the care needs I identified. Here was, at least on paper, a place where activity (physical, mental, and social) was not only encouraged, but various activities were scheduled throughout the day, every day, including group exercise, arts and crafts, singing, etc. - enough that, while I would not be able to fully engage in many of these due to prolonged "off" states, there would always be some social activity during the few of hours of "on" time I currently get per day. Getting out and about was also encouraged, from making use of the extensive, well kept gardens, including a vegetable patch, to various supported trips out during the year. The blurb also put an emphasis on good nutrition, and the sample daily menus looked well balanced and healthy. It also emphasized that care plans were tailored to the individual needs. It mentioned they had regular visits from Parkinson's Nurses. I was sold, as this was beyond my hopes.
A couple of days later, I was visited in hospital by an Assessment Nurse from the home. I was further much warmed and reassured by the conversation. The nurse told me more about the vision the home had, that finding and accepting younger people was a purposeful strategy. They understood that such a shift is needed due to the rising number of Early Onset cases of diseases like PD, MS and Alzheimers, and so were quite avant garde in this regard. They had cared for younger people with PD before, younger than me, and had recently had a lady who was just 36, and currently had a number of permanent residents under 55, with a variety of issues, from stroke to paralysis to MS. They also clearly understood, and were experienced about caring for people with PD, knowing about the need to get the PD medications on time, for example, and ensuring this happened. They understood about the fluctuating and unpredictable nature of the disease. They checked on residents throughout the night, hourly. The nurse actually didn't like the term "nursing home" and saw it very much as a "caring community". I believe we both felt after the assessment that the match was good.
A couple of days later, the hospital had arranged for me to be transferred to the home, desperate for me to "unblock" their bed. I sensed once again the spirit of Adventure activating my right brain, reducing my symptoms, as had happened on that first Ambulance ride to the hospital.
I have now been here just over four weeks, and am happy to report it has lived up to everything I hoped it would be. I am engaging socially as much as possible, and have put on half a stone in weight since I've been here, due to the availability of good food and the encouragement to eat well. I have been able to pick up my recovery efforts where I left off, going outside into the gardens each morning for exercise, and doing even more, due to new opportunities for calming my nervous system, such as group sing-a-longs.
So I feel hopeful again. I feel I've found the help I needed. I feel... home.