About me:

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I was diagnosed in 2011 with Parkinson’s Disease, aged 29. The reasons for sharing my life with Parkinson’s online are so that I can hopefully contribute towards dispelling the stigma around Parkinson’s. It is also to highlight the fact that Parkinson’s affects younger and not just older people. It’s also important to highlight that Parkinson’s Disease has many symptoms which manifest differently, in no particular order, and on an individual basis.

I am now 33 and, like most things in life, wish I knew then what I know now. You may already be aware that in terms of age at diagnosis, I am somewhat of a rarity. Over the past four years I have experienced what it feels like to be such a rarity. I am all to familiar with the obstacles it has presented to me every day and of the need to continually re-adjust ones approach to the ‘moving target’ that is Parkinson’s Disease.

Being diagnosed at a young age inherently means that my journey with the disease will be long and that the challenges this presents will be quite unique.

Ultimately, symptom control is the biggest challenge any person with the disease will face. It’s a complicated matter which involves much more than simply setting timers and taking medications on time.

As the disease progresses, this becomes more complicated and requires regular adjustment with the guidance of a Neurologist in collaboration with a number of other medical professionals; such as a Parkinson’s Specialist Nurse.

For me, four years in, controlling the symptoms of the disease has become less ‘predictable’ day-to-day. This irregularity in symptom control has a big impact on my family life and my career.

However, despite being diagnosed with Parkinson’s Disease, I can honestly say that I am in a great place, mentally. Besides the debilitating physical aspects of the disease, I believe that the only way to continually move forwards is to have a positive, healthy perspective.

I am determined to continue in my efforts to connect with the PD community and to reach out to the newly diagnosed, in the hope that the ‘David of 2011’ can find reassurance in what positives are in existence here in 2015. It’s important to balance the negatives and unhelpful stigma one might experience over the next four years with the positives.

To do this right we must act collectively, as a community, to keep talking about Parkinson’s Disease. We must all continue retweeting, right-clicking, sharing, copying & pasting and blogging about it, so that we can keep the positives out there for our own benefit and to also raise awareness and re-educate the public perception of PD.

Individually, as very active ‘working age’ people with Parkinson’s, we have a responsibility to put out there balanced, non judgemental perspectives on how best to approach this disease for the benefit of those recently diagnosed and yet to be.

I hope you can join me in this cause.
David Sangster.

#1in20parkinsons
www.1in20parkinsons.org.uk

So thats what I am.. a ‘Young Parkie’!

So I am a young ‘parkie’, diagnosed at the age of 29. I am now 33 and, like most things in life, wish I knew then what I know now. As you have already read at the top of this page, I am a rarity.
Over the past few years I have experienced what it feels like to be such a rarity and the obstacles it has presented to me most days.

Before I continue, I can promise you that I am not going to talk about how I climbed a mountain for charity or ran a marathon for a certain Parkinson’s charity. Don’t be offended by this if you happen to have done this.. good for you! It’s just not me, that’s all.

I live in Greater Manchester, work in a local College, have a wife and two young children. My time is taken up with family and work, a love of music, technology and a passion for F1.
When I was diagnosed I knew very little about Parkinson’s Disease and was given a brief (if not blurry at the time) explanation of what it actually was whilst sat in just my underwear, having spent a week in Salford Royal Hospital after six months of sporadic appointments and tests previous to my stay on the Neurology ward where I shared a room with four much older gentlemen all with ‘age related’ illnesses (as I saw it with my ignorant view at the time). Shortly after I was issued a prescription for L-Dopa and told to attend an appointment with a Neurologist some weeks later.

After sitting at my laptop with the Parkinson’s UK website in front of me, listing Levodopa as the gold standard treatment, I knew my life at this point was at a point of change with no direction home to what I had known before. Anyway, you know the rest.. I opened the container and swallowed the white and blue capsule. I won’t be talking within this post about the PD drugs I have tried and what professionals have helped me along the way etc, I will discuss this another day (but feel free to contact me and fire away!)

This, my online space or point of reference, is to support existing ‘YPWP’ or to provide useful and tailored information for the young folk yet to be diagnosed. For example; should I tell my employer? What about my insurance or driving licence? Can I travel abroad just as easily? What if I am planning a family? How do I explain it to my family so that they understand and not pity me? The list is a long one..

This is why I have put myself here and called it One in Twenty. Such a small number can get lost (forgotten even) amongst the majority – after all its not like I even look ‘ill’. For instance, if I parked in the disabled space outside your local Supermarket with my wife and kids in tow what would you assume? What does a “young onset Parkinson’s” person actually look like anyway? And no.. I don’t look like a movie star with great hair and cool sneakers nor do I drive a Delorean (I wish I did!). The truth is I look like most early 30-something men.

Don’t get me wrong here, I know that you can be disabled without the need for a wheelchair or cane – after all we are all swans with a calm exterior but kicking away like crazy under the surface. We all have our struggles, I know.

If you are still reading this then I am flattered. If you are reading this using the wrong hand as you scroll down with the mouse (because the hand you used to use is more wooden or shaky these days) why not get in touch.

Make contact. Like I said: we may be small in number but we can easily be united as one and help each other out.

Thats all for now.

Rebuiling the Future: Becoming ‘#1in20parkinsons.’

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According to the statistics; One in 500 people in the UK has Parkinson’s disease – a total of 127,000 individuals – and 7.5 million worldwide. It is more common in people over the age of 65, although it can affect people at much younger ages. Around a third of those with Parkinson’s develop symptoms before the age of 65, and one in 100 before the age of 40. (Parkinson’s UK online featured in The Guardian online, 2014).

Like most people who have been diagnosed with Parkinson’s Disease at my age, I know that I am somewhat of a ‘rarity’. I often hear people with Young Onset Parkinson’s compare the chances of diagnosis in their late twenties and thirties to being the unlucky winners of a cruelly devised lottery.

Whatever the odds of ‘winning’ this ‘lucky dip’ are, in terms of it’s initial symptoms, the route taken to be eventually diagnosed (however sustained and inevitably dreadful), it’s cause (still regarded as unknown) and the outcome (regardless of our age) is the same for us all. We are people with Parkinson’s, young or old.

What happens to you (physically) from this point is out of your control, besides making the recommended and obvious lifestyle changes. What you can’t stop is the dopamine depletion in that tiny part of your brain known as the Basel Ganglia.

In fact, one of the cruelest features of Parkinson’s is the covert way in which it slowly begins to degenerate and reject (quietly) the basic commands you once punched every waking minute of every single day into the central control panel with relative ease: ‘WALK’, ‘GRAB’, ‘LIFT’, ‘HOLD’ which usually take less than a millisecond to ‘EXECUTE’. But now the screen is freezing, the commands delayed. Just like ‘Hal’ in ‘2001 A Space Odyssey’ Astronaut, Dave, is eventually shocked to find that ‘Hal’ (the central computer) has been gradually chipping away within the ‘Control Tower’ – eventually locking Dave out from the inside and taking full control: “open the pod bay doors please Hal..”. “I’m afraid I can’t do that, Dave”. “Hal?..Hal!”.

Parkinson’s is just like this. By the time you notice something isn’t quite right, and without much evidence or belief that it’s really happening – the tremor in your pinky starts (just one example of an initial symptom), which is the blinking red light on the central console indicating ‘a fault’. Hal is in control from here on.

So what do you do next? How should you respond?

Well, I assume I did what most people would do and typed my symptoms into a search engine hoping to find ‘something’.

As you can imagine, it ended up making me even more confused and, worst of all, very scared as a result of what search results popped up on the screen. Basically, I was presented with page after page of mainly second-hand garbage and no real answers. After hours and days of navigating page after page, I was left feeling even more anxious and isolated because I now had information overload and with no medical professional of any kind to put my mind at rest. I was left with the worry that I had a brain tumour or ‘Wilsons Disease’ amongst other conditions.

So, I thought the next best thing would be to look up further Neurological conditions. This, again, led me down many a confusing and dark path. By this stage, my symptoms were ‘real to me’ but hard to explain to others close to me – as I gradually began to accept the advice from my wife to go to the GP and see what they had to say. So off I went to the GP, who did some simple strength, dexterity and movement tests as part of his examination – then referring me to a Neurologist.

If you have read my previous posts, you know the rest..

What I did next, between the GP appointment and four or five months down the line (to when I got diagnosed) is where I want to take you now, because this is surely the place where most people will find themselves at some point in their journey with Parkinson’s.

What I mean is connecting with others online to establish if the symptoms I was experiencing were anything like what the people with that condition had day-to-day (or not). Its easy, with hindsight, to see that I did this because I wanted to prove or disprove what I had almost ‘self-diagnosed’ by reading quite obsessively on the internet. I also think I just wanted to find out more about ‘it’ and basically to get some reassurance and comfort that I was not alone. I did this, with mixed results.

The comments and advice I received on the forum in this dark period were generally helpful and usually did the job of suppressing the fear and dread I went through, most days, before I was eventually diagnosed in August that year, aged 29, (after months of worry and doubt), and following a week in hospital undergoing tests in the July. 

A short while after the diagnosis I returned to the safe confines of the same forum to ‘induct’ myself into the open arms of the PD community – but, unexpectedly, it was at this specific point in my journey with Young Onset Parkinson’s Disease where I first experienced (of all places) the disbelief and doubt from others that, because of my age, I couldn’t possibly have Parkinson’s. 

Who, reading this, has experienced this ignorance? Unfortunately, for me, it came at the wrong time and in the wrong place.

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My message on the forum:

Hey folks – newly diagnosed.

I have just been diagnosed with YOPD at 29 (going on 30). Like many people with PD, my symptoms started at least a year ago or more, such as stiffness, speech, handwriting, slowness of movement and lastly – tremor (all right side).

I went to my GP in March and was referred to a neaurologist. After an MRI to rule out other things I was later admitted to hospital where I had MANY tests over a week period.

After they all came out clear, I was put on a course of levodopa (Madopar)which after a couple of weeks or so started to have positive effects – increased movement inc better gait, hand movement, more arm swing, better handwriting, better speech.. not back to ‘normal’ – but better than it has been.

I went back to my neurologist this week and was diagnosed with YOPD, which I thought he would having researched PD and looking on this site.

Now its time to properly start to come to terms with it, and look forward in a positive way.

Parkinsons.org.uk has been so so useful and the people on this forum have been very helpful and caring! So thanks.

I will be on here often, as I have been over the past few months.

Forum user:

Am I the only one who thinks davids symptoms can’t be parkinsons? No need to go on meds to diagnose – neuro will be able to uncover symptoms – speech being effected is one of last symptoms – not early..

My response:

A bit confusing.. Comments like the last couple. Trying to come to terms with this and comments like that don’t help. I am not accessing this site for ‘expert’ analysis – just some kind words and support and for some valid info. This site has been so helpful so far.

Forum user:

Diagnosis should never be done with dopamine – if symptoms are there neuro will be able to bring them out to play – many conditions could be helped by dopamine – once you’re on it – you’re on it and you have got it – if you know what I mean – the drugs will reel you in . Parkinsons a very serious condition – not to be taken lightly . If neuro. Can’t diagnose keep not having it as long as poss especially when young . David , I mean only well to you and all on here believe me – would never say anything nasty to anyone but i have. Seen 3-4 people at conferences or meetings several times with no pd symptoms but on a lot of meds . I know every one is different with parkinsons – but not that different – young people with pd are gonna have it a a long time – best trying not to have it as long add possible also then . I think I know what I talk about but my thinking allways seems diferent to. Others but not met anyone yet who have had it as long as me able to do what I do on my level of meds – maybe I don’t have it . Just advice – different opinions – what forum is about though I can see how I annoy others.

My response:

My symptoms were worrying, to say the least, and my speech has been affected if only very slightly – at times. The other typical symptoms are all present and a diagnosis made. I was examined many many times by several doctors and specialists.

I am just trying to come to terms with this disease and hope to use this site to support me in this, to some extent.

The Madopar was simply the final piece of the PD puzzle. I feel much more like me at the moment.

Thank you to everyone who have given me some great guidance over the past months since I joined this forum.

I realise now that although I kind of knew (feared) this would be the diagnosis, it is only now that I realise what a big thing this is to overcome and come to terms with.

The only way now is forwards, so off I go!

Be back on here often I’m sure.

Thanks again folks! David

I didn’t return to that, or any forum, for a long time after that. Like anyone diagnosed with a chronic condition, I struggled on, slowly coming to terms with it, drawing on the support of my family, friends and close work colleagues .

In the years which followed, my perspective  gradually changed and developed as much as the disease itself – which brings me back to my point at the start of this text: ‘a rarity.’

So here I am, four years on, ready to continue on my individual journey with Parkinson’s. As Tom Isaacs described the different stages of his journey, following his diagnosis – also in his late twenties:

“Another key moment – you begin to accept Parkinson’s as being part of who you are. You are no longer the person you once were and you accept that your life has changed irretrievably. You start to alter your ambitions for the future and tailor them so that they take your Parkinson’s into account. You are adapting to the new you and beginning to concentrate on the positives of this. You are now more concerned with the things you can still do rather than things that Parkinson’s has interfered with. The longer I have this condition and the worse my symptoms get, the more determined and positive I become”.

(Tom Isaacs, http://www.cureparkinsons.org.uk)

I can honestly say that am in a great place, mentally, despite the fact that my physical symptoms are much more developed and debilitating. As I said in my last post; it is all about perspective.

I am determined to continue in my efforts to connect with the PD Community and to reach out to the newly diagnosed, in the hope that the ‘David of 2011’ can find reassurance in what positives are in existence here in 2015 and to counteract the negatives and unhelpful stigma he is likely to experience over the next four years or so.

Of course, it is just one my opinion. To do this right we must act collectively, as a community, to keep talking about Parkinson’s Disease, retweeting, right-clicking, sharing, copy & pasting and blogging about it, so that we can keep ‘connecting the dots’. We have a responsibility to put out there balanced, non judgemental perspectives on how best to approach Parkinson’s Disease for the recently diagnosed and for those yet to be.

Thank you for reading and let’s keep talking about Parkinson’s and raising awareness!

David

#1in20Parkinsons

1in20parkinsons.org.uk

Sources:

Parkinson’s UK online featured in The Guardian online, 2014

Basel Ganglia: http://www.ncbi.nlm.nih.gov/pubmed/10821982

Tom Isaacs : http://www.cureparkinsons.org.uk/News/a-journey-from-diagnosis-to

Why 1in20Parkinson’s ?

I was diagnosed in 2011 with Parkinson’s Disease, aged 29. Since then I have been through many of the emotions that any person given a life-changing diagnosis could possibly experience. Four years in, controlling the symptoms of the disease has become less ‘predictable’ day-to-day. This irregularity in symptom control has a big impact on my family life, as a husband and father, and on my job as a Tutor in a local College.

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So you might now be reading this thinking; ‘poor chap’, ‘what bad luck’ or ‘how brave he is to keep it together’. If I’m honest, I would tend to agree with comments such as these, which I often hear people say to me, mainly because at this stage in my journey with Parkinson’s I have come to accept it for what it really is – a very tough and challenging disease to live with and one that I know is going to get harder #fact! Back in 2011/12, I put the developing realities of PD in a place I can’t describe in words, with mixed results. 

As a Parkinson’s sufferer / patient, what clearly sets me aside from the general population of ‘People with Parkinson’s’ is obviously my age. In fact, in the UK alone, I am about 1in20 of the thousands diagnosed each year who are aged below 50 or so. When I was diagnosed at the time, it felt like a cruel thing to happen to me and my family. But as time has passed, having lived with this disease 24/7, I have got to ‘know it’ better. Like any long-term relationship, I have got to know my ‘other half’ more than I did two years before. I know what works and what doesn’t.

Learning to accept my condition for what it is, and how it limits me, has been a really difficult thing – probably the hardest, infact. I can see how, in the first couple of years, I was quite ignorant and self-absorbed with the disease – particularly in how I saw my own perspective and approach with the disease as the ‘right one’ – trying to continue on as normal without considering what my true self deserved and what feelings my family might be experiencing seeing me that way. 

And now? 

I have changed physically; no longer can I remain still, as the Dyskinesia keeps me moving with every dose of my Parkinson’s medications or I can hardly move for the increasing stiffness and slowness of movement when I’m ‘off’. However, as this continues, I find my resolve to working against it strengthening and my my purpose becoming ever clearer. 

Which brings me here. Online, talking about living with Parkinson’s Disease, its daily challenges and how I have come to live with it and to tell you now that life doesn’t stop. In fact, despite my diagnosis, some of the best moments and personal achievements in my life have happened in the past 4 years; the birth of my second child, a promotion and continued progress in a supportive workplace (yes, I told them the day after I was diagnosed) and other ‘good things’ . 

If I could sell t-shirts, with just two words on the front, to describe my parkinsons journey at this stage would have to be ‘patience and ‘acceptance’. This is my best advice to anyone recently diagnosed. If you achieve this, whatever that is to you, then you are in a good place. 

What I imagined life to be like at this stage isn’t close to what my wildest fears would have had me believe not long after diagnosis. What place I find myself to be in, both physically and emotionally, today is down to me and not just the disease (I can’t blame it for everything). 

After all, Parkinson’s is a disease of the brain and not the mind – that belongs to me.

I still call it and choose the route, Parkinson’s is just more weight to carry along the way. 

As always, be great to hear your thoughts!

David 

#1in20parkinsons