Wearing Off http://www.wearingoff.eu Parkinsons Disease Symptoms Fri, 20 Jun 2014 15:54:36 +0000 en-GB hourly 1 http://wordpress.org/?v=3.7.1 My Final PD Blog http://www.wearingoff.eu/blog/my-final-pd-blog/ http://www.wearingoff.eu/blog/my-final-pd-blog/#comments Fri, 30 May 2014 09:08:38 +0000 http://www.wearingoff.eu/?p=696 Well this is my last blog for wearingoff.com. After 4 years and 102 blogs on my life with Parkinson’s disease (PD), I am slightly sad that it has come to an end, but then all things do! I can trace my PD symptoms back about 15 years, but I was only diagnosed 10 years ago. For the first 3 years after diagnosis I was, like many at the outset, in denial. Whilst I did research all things PD I shied away from any contact with any other sufferers. With hindsight I think my relentless research in those early post-diagnosis years were more a search to disprove the diagnosis, even if only at a subliminal level. I am not sure what I was hoping for instead. Maybe a small benign tumour that could be removed and all my symptoms would suddenly be gone. Maybe a neurological condition that was acute rather than chronic. Perhaps also something that wasn’t idiopathic. At least then I could, maybe, take some action to slow the illness down. After all, a PD diagnosis is never a definitive diagnosis: only an autopsy can absolutely confirm that what we refer to as PD was to blame for our symptoms. Usually, however, a misdiagnosis results in something no better than PD or even worse. At the end of this 3-year stage I had to give up working. I was only doing simple office work by this stage (Membership Secretary at my local golf club), with no physical content, but my fatigue attacks were by then both frequent and unpredictable.

In the 4 years that followed my leaving work I devoted most of my time to PD advocacy. I set up one of the first PD patient internet forums and linked up with a national charity. I attended PD meetings, organised patient get-togethers, including a trip that 7 of us made to Paris for 4 days, and spent long periods of every day trying to help other PD sufferers (especially those who were newly diagnosed). When I started the PD internet forum there were no Facebook (FB) PD group pages to provide support (there are now over 50). Those early years after diagnosis, especially young onset diagnosis, can be a desperate and lonely time. I spent 4 years at the PD advocacy and patient support coal face but, ultimately, it took its toll on me just as work had done before. Fatigue attacks became more frequent and I clearly needed to ease off from my PD activities.

The last three years I have selfishly devoted to me. I started a BA in English and History in September 2011, and my final exam is imminent. I did carry on with my PD activities, but at a much less intense level than before. I moved our PD internet forum from a private web site to a Facebook private group page and I carried on writing these blogs. I also continued to get involved in low level PD research fund raising but mostly on a local basis. To make a forum or FB group page successful there needs to be at least one active enabler. Since devoting most of my free time to my BA, our FB group page has slowly faded away, partly because the original members are mostly now 10 years plus since diagnosis and weary of all things PD. But, as I said earlier, there are now over 50 FB group pages, and the charity Parkinson’s UK has a very successful forum linked to their web site, which is particularly useful for the newly diagnosed.

So the last 15 years of my life… 5 years suffering symptoms with no diagnosis, 3 years in post-diagnosis denial, 4 years of advocacy and support and finally 3 years of making the brain cells work hard on a BA. What comes next? Well that is currently undecided, but PD is making the options narrower and narrower. Finally a big thank you to all those who have contacted me via Twitter and FB, since these blogs started. Your positive feedback has kept me going with the blog writing. I have enjoyed my 4 years blogging here, and I hope I have helped other PD sufferers and their families along the way too.

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Almost Time to Say Goodbye http://www.wearingoff.eu/blog/almost-time-to-say-goodbye/ http://www.wearingoff.eu/blog/almost-time-to-say-goodbye/#comments Tue, 27 May 2014 10:05:34 +0000 http://www.wearingoff.eu/?p=694 When I was diagnosed with Parkinson’s disease (PD) in February 2004, I was already suffering fatigue episodes and finding it difficult to walk properly. On reflection, I think my illness went undiagnosed for probably as long as 5 years. Looking back with the knowledge I now have about PD, I had several classic symptoms long before a diagnosis led me to some relief via PD medication. It was, however, about 6 months before the optimum treatment was established for me, contributing to a very tough first year. Medication working effectively is one of the major, if not the major, indicators for a PD diagnosis. There is no absolute diagnosis for PD, and it is established through eliminating other more definitively diagnosable conditions, symptomatic observation and response to PD medication. Part of the reason for my long-overdue referral to a neurologist was that I lacked the classic PD tremor. This is something I have since discovered is missing from around 30% of people diagnosed with PD. There are around 150,000 people currently diagnosed with PD in the UK, and spreading these across the 60,000 GPs means that most see very few cases. If you add to that the variation of symptom combination, the lack of definitive diagnosis and the insidious nature of the illness then you have an illness that is difficult to pin down. The advantage to me of diagnosis was the eventual assistance that the medication gave me. It does not stop the progress of the illness, which is currently relentless and incurable, but it does mask some of the symptoms.

It has been a difficult 10 years for me since diagnosis, but it would have been a great deal worse without my PD medication. PD made it impossible for me to continue with my career, but I am close to completing a 3-year BA in English and History. PD has taken away my leisure pursuits – golf, fishing, swimming and hiking – but I can walk my dog when I am at the peak of my medication cycles. These dog walks are absolutely vital to me. It is the only exercise I get as any strenuous physical activity rapidly fatigues me. I also need the motivation to get outside and engage with the world while hopefully topping up my vitamin D level (something many sufferers are short of). My dog Rolly terrorises me at least twice a day until I walk him. I know there have been many days since he arrived, 7 years ago, when I would not have ventured out if it had not been for him.

Now the really bad news. Three weeks ago Rolly ruptured the cruciate ligament in one of his hind legs, and there have been no walks possible since then. Fortunately he is insured and was operated on last week, but he will not be able to attempt any walks for at least another month. Consequently he is going crazy stuck in the house, hopping around on three legs, and I am resorting to vitamin D tablets and whatever walks I can motivate myself to do without the emotional blackmail that the dog normally inflicts on me. Anyway I do not want to walk alone. Apparently his operation was quite complex, involving a titanium plate, a pin through his knee and a bone graft. He is 14 years old, although he looks a lot younger, so I have to hope that his ageing body can deal with all this.

This is my penultimate blog as wearingoff.com has decided not to pursue the project any longer. It has been four years of my life with my PD laid bare here, and I will miss the cathartic effect it strangely has on me. I hope some of the visitors to this site have found the blogs useful in their own PD journey. I did consider starting a private PD blog but, for whatever reason, the motivation is currently not there. I now need to think of an appropriate theme to sign off with in my last blog.

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Moving on… http://www.wearingoff.eu/blog/moving-on-2/ http://www.wearingoff.eu/blog/moving-on-2/#comments Tue, 06 May 2014 11:31:29 +0000 http://www.wearingoff.eu/?p=692 My first blog on life with Parkinson’s disease (PD) for wearingoff.com was published in June 2010, nearly four years ago and this will be my 100th blog published here. I read back through all these blogs this morning, before writing this latest offering, to see if I could establish any trends or significant changes in my PD world since I started. Probably the most obvious and inevitable transition of change has been the progress of my illness, although this has been masked to some extent by increases in my medication. There are, however, areas where medication helps me very little, or not at all, such as food digestion, fatigue and a range of autonomic symptoms that I will not bore you with. These are symptoms of PD that were barely acknowledged by the medical world when I was diagnosed 10 years ago, and are now generically referred to as non-motor symptoms. There is still very little research on these aspects of PD, and almost no specific medications, but progress has, and still is, being made. Until recently, my PD medication has controlled my motor symptoms reasonably well. It takes about 45 minutes for my first dose to work each morning, but that usually gives me about 2 hours of acceptable physical functioning until the effects wear off. I get about 6 hours a day when I am able to have any sort of normal life, although any walking is restricted to 15 minutes maximum. At all times, however, strenuous activity has to be avoided or extreme fatigue will descend with very little warning. But without my medication I would be immobile all day, every day.

I am now, however, close to the maximum dosage levels for my PD drugs, and I face some tough decisions over the next couple of years. Dyskinesia has already reared its ugly head, albeit in a mild and random way so far. The only option open to me is an operation called ‘Deep Brain Stimulation’ (DBS), and that is only if I am deemed suitable for this radical procedure. The operation takes around 8 hours and involves a hole being drilled into my skull and electrodes inserted into the area of my brain most affected by PD. These are then wired to a battery pack inserted under the skin in my chest. This is usually performed while the patient is conscious. Since I started writing these blogs three of my close PD friends have undergone this procedure, and two more are currently being assessed for suitability. It is not a cure but it buys some time. The effect of the stimulation of the brain via the electrodes is to allow the patient’s medication to be reduced, which tends to ease dyskinesia whilst retaining some level of physical functioning. It is impossible to be specific about the outcome: everyone responds differently; but with my three friends who have already undergone this procedure, and two others under serious consideration, I have a reasonable visibility of both the risks and possible rewards. It would be an easier decision if it was going to ease my non-motor symptoms too, but sadly it will not; these will just continue to get steadily worse.

With my medication struggling to contain my symptoms, I may delay the start of an MA in History planned for October. My BA ends the in first week of June, and my wife and I are planning a celebratory cruise to the Adriatic, via the Mediterranean, in the summer, where I can hopefully relax and reflect on what to do next. In June these Blogs end as well as my BA in English and History. By autumn I need a plan that will stimulate me mentally, engage me socially and keep me from sinking into the mires of PD research again!

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The Race is Run http://www.wearingoff.eu/blog/the-race-is-run/ http://www.wearingoff.eu/blog/the-race-is-run/#comments Fri, 25 Apr 2014 08:39:19 +0000 http://www.wearingoff.eu/?p=690 I am pleased and proud to report that my son, Ollie, completed the London Marathon and raised over £2000 for The Cure Parkinson’s Trust. He had taken part in two half marathons previously but this was his first full marathon. I am particularly proud of him because he finished the marathon despite suffering severe leg cramping for the last 10km of the race. He was also affected by the heat (the sun shone brightly and relentlessly) and he felt quite unwell at the end of the race. The leg cramps and the sun did not, however, prevent him from finishing in the very respectable time of 3 hours 50 minutes. He was slightly disappointed as until the cramping started, he was heading for a time of around 3 hours 15 minutes. The time he completed the course in, however, was still exceptional. The average for a first time runner in the London Marathon is 4 hours 40 minutes. His problems towards the end of the race have not deterred him and he has already applied for the next Paris Marathon and plans to apply for next year’s London Marathon too.

I was able to track his progress via the London Marathon website throughout the race but this turned out to be a slightly stressful experience. The tracking program calculates each runner’s running speed from tracking points located on the course every 5km and extrapolates his position in between. This was all very interesting and exciting until he failed to appear at the 30km tracking point at the time his previous running rate had projected. It seemed like a painfully long wait but in fact it was less than 10 minutes, but clearly his pace had plummeted and something was wrong. I assumed he had exhausted himself and was at the point of collapse and even longer waits at the next two tracking points just heightened my despair. I obviously was not aware that he had cramp which whilst very unpleasant and disabling, is not life threatening. I blame my panic and stressed out state on my Parkinson’s disease (PD). As well as depleting our dopamine producing brain cells, PD is thought to affect our serotonin levels in the brain. This is an area of the brain that helps us deal with stress or not deal with it, which is my mitigation for my parental panic. My other mitigation is that parents never stop worrying about their offspring no matter what age they are. Ollie is 31!

Despite his problems towards the end of the race he clearly loved the whole experience of taking part in the London Marathon. Apparently the crowds lining the route were the largest in the race’s history and I guess the sunny day was very pleasant for them if not for those taking part. In pursuit of trying to raise funds for PD research Ollie had trained for over six months by running after work, in the dark, at least three times a week. He also joined his local gym for the six months to help build up his strength and fitness. He tells me that the whole process took over his life but not in a negative way. I do not know how much money was raised for the various charities by the 37,000 entrants in this year’s London Marathon but it must be a significant sum. In the process of raising that money most of those taking part will have trained just as hard as Ollie did and each made someone proud of them just like I am of Ollie. They will also be feeling the personal pride from the achievement of completing the 26 mile marathon whatever time it took them.

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Deep Brain Stimulation http://www.wearingoff.eu/blog/deep-brain-stimulation/ http://www.wearingoff.eu/blog/deep-brain-stimulation/#comments Thu, 17 Apr 2014 10:56:23 +0000 http://www.wearingoff.eu/?p=686 This week I spent two days in hospital being assessed for Deep Brain Stimulation (DBS) surgery. The first day involved psychological assessment and the second day observations and videoing of my condition when I am off and on my medication. The purpose was to ensure that my symptoms would respond to surgery and that I was not losing my marbles, which would make the operation financially unviable.

There were around 20 psychological tests which assessed my cognition; mental speed, memory, execution skills and creativity. There were pages and pages of pattern sequences to recognise, numerical exercises involving repeating number sequences forwards, backwards and in numerical order. Recalling a story was fine until you had to do it again after several other intervening tests. It was mind-boggling and by the end I was shattered.

Afterwards I went to the ward where I would spend the next day being assessed physically. I stopped taking my pills at 8 pm that evening and did not retake them until 11 am the next morning. That intervening period was horrendous as the pain and the stiffness became progressively worse and my legs felt like lead. Bleeping monitors and alarms also made sleeping virtually impossible.

By 10 am the next morning I was looking like death, feeling frail, dribbling unattractively and my tremor was in top gear. The Parkinson’s nurse and assistant came to assess my condition and to give scores for both my left and right sides in each task. Writing, drawing and manipulating items were all severely impaired and my performance, predictably poor. It was only with great difficulty I was able to get out of a chair and only with the help of a walking frame could I shuffle along a metre or so. It was shocking to think how dependent on my medication I had become and how feeble I was without it.

Finally, I was allowed to have my medication and it was a great relief to be able to stand up on my own to walk across the ward and to go to the bathroom independently. During that day I talked to other members on the neurological ward who had undergone awkward surgical operations to remove brain tumours and for them the outcome of surgery was uncertain; it was then that I felt relatively lucky,

The Parkinson’s nurse and assistant returned at 2 pm when I was fully functional and reworked their assessment sheets for me at my best in the “on” state. Many of the tasks I achieved in half the time. This was important because suitability for the operation requires a marked response to medication. In other words, there was a great contrast in my condition when I was “on” and “off”.

I now await their decision as to whether I am suitable for DBS. My neurological consultant offered me this option six months ago and I would never have considered it previously but began to realise that I could not continue simply taking more and more Parkinson’s medication because the side-effects of L-Dopa become progressively debilitating as time goes on.

The benefits of DBS for me are likely to be a reduction in the number and length of “off” times, so that most of the time I will feel as I do at my best now. My symptoms will be less intense and so will my medication. This means less dyskinesia. The operation itself might deter some because it is done without anaesthetic and involves drilling two holes in my skull to introduce electrodes which will generate neural activity when switched on by a pacemaker embedded in my chest.

After 14 years I have had to acknowledge that my condition had got significantly worse and would continue to do so. DBS is not a cure but a way of reducing the impact of the disease and improving my quality of life. I look forward to playing with my grandson, travelling independently, having breakfast with my husband, getting in and out of bed unaided, undoing buttons and putting on mascara without ending up looking like a panda.

It is quite realistic to expect to achieve much of this with surgery and these benefits outweigh the risks involved.

I wait and hope.

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The Final Hurdle http://www.wearingoff.eu/blog/the-final-hurdle/ http://www.wearingoff.eu/blog/the-final-hurdle/#comments Mon, 14 Apr 2014 08:48:51 +0000 http://www.wearingoff.eu/?p=684 Just two months left and my BA in English and History will be finished. It seems amazing to think that it will be three years this August that I signed up for this degree. It seems to have gone so quickly. But it has served its purpose and both engaged my brain and distracted me from Parkinson’s disease (PD). It has also got me out into the world amongst people who are young and vibrant and ambitious. My career may be long gone but I had my moments and it is lovely now to be working alongside others just setting out on their careers. Already, three of our class have been accepted on teacher training courses (PGCE) starting September with others waiting to hear if they have been accepted. Also four of us have pre-registered for an Open University MA in History that starts in October. For some it has been a long academic journey starting with a 2 year Access course followed by the 3 year BA. Some have young children and part time jobs to compete with their study time. The pressure on them has been enormous. Student loans have to be repaid whether you finish the course or not. I am full of admiration for their individual achievements. It is hard enough studying for a degree without children and employment to contend with too. I do not think I can begin to fully appreciate how tough it has been for some of my classmates. But I envy them now in that it would have been lovely to use my BA, assuming I graduate, for something more than a diversion from PD.

I have just finished my 10,000 word History dissertation a month ahead of the final hand-in date. Whilst this may appear to be very studious of me, and commendable, it is also essential. I have periods when I am unable to study at all and frequent episodes when I cannot use a laptop. I have, therefore, had to stay well ahead of all the submission timescales to outwit my illness. I started this degree in September 2011 and nearly three years on, my PD has progressed another three years, as PD relentlessly does. Everything physically is that much harder than it was at the start, but while my body has inevitably deteriorated my brain has come alive. Well relatively speaking! Last night I even managed to answer more questions than my wife, who is an English teacher and a dyslexia expert, while we were watching the TV quiz show University Challenge. I am also now far more successful at general knowledge crosswords. It sometimes makes me ponder what I might have achieved had I gone to university in my late teens instead of my late fifties. But then I did OK in my career so maybe I would have achieved less, who knows! Also maybe I was not ready back then. Maybe I needed my career, and maybe even the experience of a critical illness, to stimulate me to tackle this degree.

In the two months I have remaining at college, I have two History assignments to research and write and a worryingly long (3 hours) English exam to successfully navigate. This will be the longest exam I have had to sit and my pills will have to be managed very carefully if I am to avoid the debilitating effects of wearing off. What, and when, I eat will be as critical as the timing of my medication. It will be the final hurdle and it is going to require very careful planning to get me safely over it.

My son’s training for the London Marathon continues and he has now run 20 miles on two occasions after work. Thankfully the weather has been kinder of late; much less wet and windy and also not so cold. Just 3 weeks to go now and he will be on the starting line in London with 37,000 other entrants hoping, ironically, for a cool sunless day. I just wish I could be there to watch him start and finish the marathon.

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Marathon Man http://www.wearingoff.eu/blog/marathon-man/ http://www.wearingoff.eu/blog/marathon-man/#comments Tue, 18 Mar 2014 10:12:12 +0000 http://www.wearingoff.eu/?p=682 Two and half years ago my son Ollie ran a half marathon, which is 13 miles, to raise money for the Cure Parkinson’s Trust. He had never embarked on anything like this before, and he had to train very hard before the event. Being the competitive beast that he is, he set himself a time target of completing the half marathon in less than two hours which, for a rookie, was a tough challenge. His time on the day was 1 hour 40 minutes, and he raised over £1600 for the Trust. I was extremely proud of him for taking on such a physical challenge to raise money for the charity. I cannot begin to imagine that I would ever have subjected my body to such torment even if I did not have Parkinson’s disease. Apparently these long runs can be quite addictive and, subsequent to the half marathon, Ollie has applied each year to enter the London Marathon of 26.2 miles. In October last year he learnt that he had been accepted for the 2014 Virgin London Marathon, taking place in April. What followed has been a gruelling 5 months of after-work training, mostly in the dark and cold of a British winter, and a particularly wet winter at that. Once again he is running to raise money for the Cure Parkinson’s Trust. This is a charity for which I have been an advocate for the past 7 years.

His preparation has involved running about five times a week, steadily building up his stamina by gradually increasing the distance he runs. He has also built up his strength and stamina at the gym and the pool which, fortunately, is near to where he works. A close golfing friend has also entered the marathon this year so Ollie has had company on some of his gruelling training outings. Ollie’s boss, Malcom, has also been inspired to hit the streets with him and, on occasions, joining him for part of the training runs on the cold, wet and often very windy evenings after they finish work. Two weeks ago Ollie entered a half Marathon in Milton Keynes with another friend who lives there and who is also in this year’s London Marathon. He set himself the target of beating his first half marathon time of two years ago. It was an unseasonably warm Sunday morning but he completed the course in 1 hour 33 minutes, which was a massive 7 minutes faster than before. Last week he ran 18 miles after work, so his preparation is building nicely for the full marathon in a month’s time.

Unfortunately I am not well enough to make the journey to London to watch him start and finish the marathon, which is something that distresses me greatly. I am so proud of what he is doing, especially as he has pushed himself so far out of his comfort zone to selflessly make a contribution to a charity that is doing everything it can to improve the prospects of a cure for Parkinson’s disease. I will, of course, watch the whole event on TV and, apparently, I can monitor his progress via a satellite link on the internet. Once again he has set himself a tough target time of finishing somewhere between three-and-a-half and four hours, but has to set off with the less experienced runners towards the back of the field so he will be faced with a slowish start. We have lunch together every Friday at our local golf club so I get weekly updates on his training progress, and I know only too well how tough it has been. He told me this week that it had taken over his life but in a positive way. As I said before I am so, so proud of him.

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Becoming a Grandmother http://www.wearingoff.eu/blog/becoming-a-grandmother/ http://www.wearingoff.eu/blog/becoming-a-grandmother/#comments Thu, 13 Mar 2014 11:55:17 +0000 http://www.wearingoff.eu/?p=678 The most important event this year has been the arrival of our first grandchild – a boy born in mid-February. At 8 o’clock one Tuesday evening our son called us to say they were at the hospital, but the birth wasn’t going to happen quickly. Of course I didn’t sleep at all; it was a mixture of excitement and thrill about seeing this new member of the family and worry about the delivery. It was a long wait, and Sebastian Robert weighing 8 pounds 7 ounces was born by caesarean section the next morning. Our relief was overwhelming.

He is now almost a month old and a delight to all the family. It is an important event because it marks the start of a new era, when we look forward to a new generation arriving. When I look into this child’s face I see the genetic input of several families; it is fascinating. There are good times ahead for me and, hopefully, there will be more grandchildren in time. Living with the knowledge that Parkinson’s is incurable and progressive could easily cast me down, but this baby diverts my attention and brings hope. His arrival provides a new source of interest; I have been reading up on child-rearing and have discovered many changes since we were having babies over 30 years ago.

I am hoping that having Parkinson’s will not prevent me from helping to care for my grandson. But there are uncertainties, especially while the baby is so young. We have seen him three times now, and each time I have felt unsure about holding him while walking around: there is a real risk of falling, so it is best if I cuddle him while sitting down. I was going to bath him in our sink, but supporting his back and washing him while propping myself up is a two-person job. However, nappy changing is a doddle, even with the constant kicking. These new-fangled disposables are easy to manage. No more struggling with safety pins and no more festering buckets of soaking towelling nappies to deal with every day.

It is only at this early stage of grandparenthood that bothers me. I would avoid caring for him on my own in case I have a fall or put him in any kind of danger; ideally, I would mind him with my husband. Sometimes it is difficult for the rest of the world, and even our close family, to recognise and acknowledge the difficulties that Parkinson’s brings to us and the way that it limits our activities. This is because so many of our worst symptoms are invisible. For example, poor balance has a profound effect upon walking, and can make carrying loads impossible. Carrying a baby downstairs unassisted would be asking for trouble. Muscle weakness, stiffness and slowness of reaction are other limitations to my minding a young baby.

However, as time goes on and the baby’s muscles become stronger, he will not need the same amount of physical support from me and will be able to sit on my lap. He will not be so dependent, and will become much more agile and mobile than me. I look forward so much to some play-times: building towers of bricks and beakers then knocking them down. Then there will be story times and messy times in the kitchen. I don’t think these old activities that delighted our children will ever be replaced by technology. Children need company and interaction, which I can easily provide in spite of having Parkinson’s; no amount of plastic toys or technology can replace this. Parkinson’s should not get in the way of playing with and enjoying the company of this grandson nor any other grandchildren that follow.

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Another Cunning Plan… http://www.wearingoff.eu/blog/another-cunning-plan/ http://www.wearingoff.eu/blog/another-cunning-plan/#comments Fri, 28 Feb 2014 09:54:40 +0000 http://www.wearingoff.eu/?p=675 My final semester at college studying for a BA on a combined History and English degree is now well underway. In fact we hardly seemed to have started and it’s half term already. But that is not a break from studying because I am in full flow with my 10,000-word history dissertation on the satirical prints of Thomas Rowlandson from the late 18th and early 19th centuries. I also have one History and one English assignment to complete and submit before the end of March. It is good to be working at home this week because Parkinson’s disease (PD) has made college particularly hard going in the last couple of weeks. Thankfully I currently have lessons at college only two afternoons a week, but last semester the lessons were in the mornings which, with hindsight, seems to suit me better. I think I just need to get myself into a routine. I had adapted my medication timing and dosage to optimise my ‘on time’ for the morning lessons and that worked reasonably well for me. With the afternoon lessons, however, I am worn out before I even get to college. The other issue, apart from drug tweaking, is to stop myself from doing much in the mornings on the days when I have lessons in the afternoon. This isn’t as easy as it sounds. First of all the obsessional side of me (typical PD character trait) cannot relax until the house is tidy, dishwasher loaded, bins emptied, and kitchen de-cluttered. Then the dog will pester me to be fed (not an unreasonable demand) and then will not relax until he gets a walk. Before I know where I am it’s time to head off to college. With the morning lessons it was tough getting up early, but once I had left home nothing could be tidied and the dog got walked late afternoon after I had rested following returning from college at lunchtime. It will get easier when the nights draw out and it is light enough to walk him after college. I am also sure I will find an optimal medication routine for these two college days.

I have raised the issue here several times, over the past few months, concerning what I will do when my course finishes, at the college, in June. It is essential I find a replacement activity that will absorb me and keep my brain active and my mood buoyant, coupled with lots of distraction from the symptoms of my illness. This is not easy when my primary symptom is severe fatigue. I am pleased to report that I now have a plan. Regular followers of my blog will know that I like my plans! I have pre-registered for an MA in History with the Open University, and hope I will fully register when registration opens in April. My past concerns about following this route had been the lack of interaction and study with other students. Two things have changed. Firstly as an ex-Higher Education student I have discovered that I can continue to use the college library when my BA finishes for a nominal fee. Secondly there are possibly four of us from my current class who are also planning to study the same History MA, with the Open University, and we can form a study group to help and support each other. The course starts at the beginning of October with four modules studied over 16 months at nominally 16 hours per week. This is less than half the hours of my current full time BA but it will be more than enough as my illness progresses, and the dog might also get more prioritisation on the walking front. There is a 3-month gap after the 16-month, four-module period of study followed by 6 months to research and write a 15,000 word dissertation. So, as long as I pass my BA and am accepted on the MA I am potentially now sorted until November 2016, by which time my brain will need a very long rest!

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Chocolate http://www.wearingoff.eu/blog/chocolate/ http://www.wearingoff.eu/blog/chocolate/#comments Mon, 17 Feb 2014 10:58:09 +0000 http://www.wearingoff.eu/?p=673 For many of us January is a grim month of reflection rather than hope, and we resolve to give up those things we enjoy but do us no good. My resolution is always to give up chocolate, and every year I fail. I could write at length about all its virtues: its exquisite taste, smooth texture, those melting moments, and the need to have another piece; one is never enough. Will power is not my strong point, and the life-time of a bar of chocolate in my care is very short. I am not proud of my chocolate addiction, and need to get this under control if only to spare my waistline and my teeth.

Outside the home temptation abounds, and my favourite brands are all too readily available in this village – it’s no trouble at all slipping a small bar into my bag (remembering to pay for it first). The station platform is also a favourite venue for chocolate consumption. To wait for the train in front of a chocolate vending machine without succumbing would be impossible. I can justify a quick snack any time:  I need to keep up my blood sugar for the forthcoming journey and never mind the extra calories because I will burn them on two escalators and two sets of stairs on the journey. Calories out to balance calories in, I think to myself as I put my one pound into the machine and grovel in the bottom to retrieve my favourite bar.

I am not one to lie back on a comfy armchair guzzling chocolate while watching TV; I prefer to eat chocolate on the go. That’s not to say I would never indulge while on the sofa, but at the same time I might stroke the cat or do the crossword which also uses calories in thought processes, I reason to myself. On the whole I prefer my own company when eating chocolate because I feel guilty and greedy, and of course I might have to share!

Although this behaviour is selfish, shameful and immature, I can find some justification for it. I have read that, people with Parkinson’s (PwPs) tend to eat more chocolate than the population as a whole because many claim that it improves their walking and makes them feel good. I could argue that having an incurable chronic disease gives me the licence to over-indulge in one of life’s pleasures as a form of compensation. This is a pretty good excuse, but it still doesn’t solve the problem of the expanding waistline.

Just as I was turning over these questions in my mind recently, I discovered some exciting new research that identifies several good reasons for eating chocolate: it improves blood flow to the brain and therefore thinking skills; it is good for the heart; and controls blood sugar levels. For PwPs there are some specific benefits: it improves mobility and enhances the mood. So eating chocolate is good for you – but in moderation, and that is the hard bit. For me it’s all or nothing; I could cope better with cutting out chocolate entirely rather than cutting down because the latter does nothing to cure the addiction and even just an occasional mouthful would revive the craving

My resolve was knocked completely by the results of a routine medical last month which revealed that my weight (Body Mass Index) was within the normal range, my cholesterol was low and my blood pressure that of a 20-year-old. I was described as very fit and low risk. But of course I need to keep it this way, and as my Parkinson’s advances along with my age, I shall slow down and burn up fewer calories as my weight and stiffness increase.

I am on a treacherous chocolate-covered slippery slope with this dilemma. On the one hand chocolate makes me feel good, on the other it makes me fat. I’ll have another piece while I try to resolve this!

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