Check-up

Thursday 28 September 2017

Earlier this week I had an appointment with The Professor.

It felt like a long time since the last appointment, and it was: almost six months.  A lot has happened in that period but I suspect check-ups every six months or so will become the norm from now on.

The Professor was half an hour late and seemingly in a hurry to make up time.  He rattled through the routine checks on my movement and I told me I was doing well on my medication.  He was amused about my Candy Crush addiction, though thankfully, having reached level 1,000 (which starts with a cool "M" formation of green candies in case you're interested) I am finally bored of it and have largely stopped play.

On the more important question of my possible heart failure, he agreed the symptoms were most likely due to the pramipexole but he was not overly concerned. He told me he had come across cases of tightness in the chest which had settled down. So we agreed that I should continue with my current dosage and drop down a level if it didn't improve within a week or two. Nevertheless he recommended following through with ECGs and so on just in case.

Although he came across as almost dismissive, I found it comforting to hear from the professional. If he's not worried then I feel I have no need to worry either.

I reminded him about my genetic quest and he confirmed that the initial testing he had done corroborated the negative result on the LRRK2 gene. He said he would follow up with further tests on other genes using the blood sample that I had already provided, and let me know the results. So I may not need to fork out for private genetic testing after all.

Finally we talked a little about the future. Fatigue aside, I should still have many active years ahead and he talked about me potentially participating in clinical trials in a year or two.  Once again, he painted a bright picture of many drugs under development, as well as more invasive treatments like stem cell therapy, that are likely to result in a breakthrough in a timeframe that is meaningful to me.

Let's hope he's right. The clock is ticking - for both my mother and me - and I imagine the next six months will fly by in no time at all.

Heart failure

Sunday 24 September 2017

After the gloominess of my last two posts, perhaps brought on by the autumnal weather, I was in the mood to write something positive.

Despite the ups and downs of everyday life, I was starting to feel like I was winning.  Take control of Parkinson's, don't let Parkinson's control you, so I have heard people say on some of the online forums.

So it is annoying that I have started to develop symptoms over the last 2-3 weeks that are consistent with heart failure.

First the good news: heart failure is not the same as a heart attack. A heart attack is when you have pain in your chest, your heart can stop working and you can die.

Heart failure is when your heart has weakened and has to work harder to do its job.  Some of the symptoms which I have felt coming on gradually over recent weeks are a tightness in the chest, shortness of breath (especially when exercising), fatigue and palpitations.  I had my first significant palpitation when I was sitting in a meeting: a very rapid pulsation on the top right of my chest that lasted a minute or two. I could feel it with my hand. PFS at the time, though I am learning to take these things in my stride now.

I did some research and discovered cardiac failure is a rare side effect of my dopamine agonist, pramipexole.  Medical opinion is not conclusive on the subject but there seems to be growing evidence of a link, and it seems that the symptoms subside when the medication is stopped.

I went to see a GP at my local surgery this week and, although she referred me for a blood test and an ECG, I think she was of the same view that this was most likely due to my Parkinson's medication.  The simple reason is that nine months ago I had comprehensive set of cardiac tests that showed essentially nothing, and the only thing that has changed in the last 6 weeks is that I upped my dose of pramipexole by 50%.

By coincidence I am due to see The Professor tomorrow so I will discuss all of this with him along with my genetic testing results. I guess there are two possible outcomes:

(a) I stop the medication and move onto something else;

(b) I keep going, keep a close eye on things, and hope that the symptoms subside.

As I write I can feel a tightness on the top left of my chest and a slight gurgling of something inside. Relatively minor, and I remain upbeat.

But enough to remind me that, right now, my Parkinson's is definitely controlling me.

Do they know?

Saturday 16 September 2017

Recently I went to Oxford for the day to teach a training course to a room of about 30 industry professionals.  As I stood at the front of the room presenting slides, facilitating discussion and writing on the flip chart, I noticed several times people looking at my right hand.

When I present I gesticulate with my left arm and hand but my right hand typically sits close to my body in a claw-like position unless I consciously move it.  It’s a similar story when I walk: my left arm swings naturally but my right arm just hangs down vertically unless I consciously instruct it to move.

These are classic Parkinson's symptoms.

As I was presenting I started to become self-conscious and questions began running through my mind. 

Do they know what’s wrong with me?

Is my posture distracting them from what I am saying?

Do they think I’m a freak?

Should I tell them I have Parkinson’s?

Similar things happen to me sometimes in meetings, more frequently in client meetings where I am a bit more on edge.  Towards the end of the day I am very tired and start to fumble my words – do they think I’m an idiot, I wonder.  Or from time to time my right hand tremors slightly – they must think I’m a nervous wreck, I tell myself. 

I think about just coming right out with it and telling them what I have, but of course I never do.

Then there are interactions with people when out and about: I take a little longer on the stairs than many others at the tube station; I’m sometimes a bit out of it at the cash till; and I have the Parkinson’s expressionless face which can be a bit creepy.

There’s no easy answer to the question of when to tell people you have Parkinson’s. 

On the one hand transparency makes things a lot easier and people are mostly understanding and supportive.

On the other hand, I don’t want to come across as an attention-seeker, or a bit of a moaner, or someone expecting special privileges.  And of course, probably most of the time whoever I am speaking to hasn’t actually noticed anything anyway – my mind is just creating an issue that isn’t there.

So I tell people selectively and over time.

First I told family, including Rosa, and close friends.  I also told my boss at work early on.  Then, bit by bit I told all my friends.  In addition to my boss and HR, I have told perhaps half a dozen people in the office – those I know well and trust.

Surprisingly when I have said to people in the office, “do you know about my disease?” they all claimed they had no idea.  I have no reason to doubt them but I assume that, by now, eight months after I broke the news to my boss, that word must be slowly spreading.

Sometimes, as I walk to the coffee machine or head to a meeting room with my right hand hanging limply, I catch the gaze of someone I've worked with. 

I think to myself: "Do they know?”

A typical day

Monday 11 September 2017

I am dreaming vividly - something involving snakes at a funfair - and I wake up feeling alert.

It is dark outside and I lean over to look at the alarm clock.  I am disappointed to discover that it is still only 12:30 am so I have slept for a little under three hours.

Fortunately I get back to sleep quickly and next wake up at around 3 am. After that, getting back to sleep gets progressively harder and I doze in stretches of around 30 minutes until it is 6 am. 

I get up, shower and prepare for the day whilst Clara sleeps.

Before 7, I pop my little white pill, feed the cat, make tea and have some breakfast - two slices of toast and some fruit.  The fruit is important.  My 1.57mg of pramipexole will release slowly throughout the day but it is not perfect and the chemicals in my brain will ebb and flow.

By now Clara is in the bathroom getting ready for work, so I shout goodbye as I leave for the station on a crisp autumnal morning.

I arrive at the station to find my train has been cancelled, so I jam onto a different train and prepare for a longer journey.  I can still stand reasonably comfortably on a crowded commuter train but I ponder what it may be like in a few years' time - will I need to wear one of those attention-seeking "please give me a seat" badges?   

By the time I arrive in the office just after 8, I have dealt with most of the emails in my inbox and I exchange pleasantries for five minutes with a few colleagues.   

But I keep the chit-chat to a minimum as I need to prepare for a 9 am meeting I am leading about an industry event we are organising. After that I am in back-to-back meetings relating to various projects until about 1 pm, after which I pay a quick visit to the canteen.  Throughout the morning I am alert and productive as my dopamine agonist kicks in.

I eat my veggie soup and sandwich at my desk - probably my neighbours are distracted by the smell, but I am oblivious to any odours.

The afternoon has fewer meetings but I am busy chatting to people on various topics, emailing clients, preparing plans and reacting to instant messages.

At around 4, I am feeling uncomfortable with constipation so I sneak off to the gents and spend 10 or 15 minutes squeezing in a cubicle whilst playing a few games of Candy Crush.  I am moderately successful at both endeavours.

I emerge a little red and sweaty and I keep my head down, hoping that I don't bump into anyone I know... 

I have a brief catch up with my boss and I notice him looking at my right hand which is tremoring slightly.  I hold it close to my body and carry on as if nothing unusual is happening.  I think he is as embarrassed as I am.

By 6, I still have items on my to do list - a document to finish writing and a client proposal to draft, but I am disciplined and prepare to head home and pick these things up in the morning.  My attention span is very short now as I am pretty tired. 

The journey home is uneventful but I notice a bit more mild tremor in the evening chill whilst waiting on the platform.

Clara is home before me, doing something on the PC.  Once she is finished I decide to write this post whilst she prepares dinner.

We eat and catch up on the news of the day.  I allow myself a glass of wine.  Often we talk about any manner of malarkey related to my mother-in-law's Alzheimer's or my own Parkinson's but this evening we talk about some gossip in her office and the neighbours' neglected dogs.

By 9:30 pm, I am spent and ready for bed.

The good news is that I made it through another work day.

The bad news is it's still only Monday.

The Parkinson's Nurse

Friday 8 September 2017

Rosa says I am addicted to Candy Crush.

She is right. After all, I am nearly on level 1,000 - not really something to be proud about. She keeps threatening to remove the App from Dad's iPhone so I make sure she doesn't know my password.

As well as playing an important role in motor function, dopamine plays a role in the pleasure and reward systems of the brain. Parkinson's is caused by a lack of dopamine in the nigrostriatal pathway, controlling movement. But the are other dopamine pathways, notably the mesolimbic pathway which, although not fully understood, is known to regulate motivation and desire.

So when you take a daily dose of something that simulates dopamine to plug one gap, as I do, it can have the side-effect of over-stimulating other areas. Dopamine agonists are dangerous drugs that can lead to strong addictions relating to gambling, sex or shopping. There are certainly horror stories of wrecked marriages and worse on some of the Parkinson's forums.

When I met the Parkinson's nurse assigned to me for the first time this week, one of the things we talked about was the side effects of my medication.

You may recall that I had received a mystery appointment with a Professor J some time a go.  Well it turned out that the appointment was in fact with one of Professor J's clinical team, a very helpful Parkinson's nurse called Debbie.

Like the Admiral nurses that support people with Alzheimer's, the idea of a Parkinson's nurse is to provide more practical advice, to complement the medical expertise of the consultant.

Debbie was warm and welcoming and made me feel instantly at ease.  We covered some background about my early symptoms, diagnosis and medication. She was interested in my emotional experience; I told her I write a blog, partly as a record of my feelings, which she thought was a very good idea...

She gave me a few tips on how to sleep better, most of which I am already doing, but there were some good additional suggestions like keeping a sleep diary. 

We talked about work, about the pressures on Clara (who continues to deal with her mother in the advanced stages of Alzheimer's) and a little about my own mother. 

On the Candy Crush addiction, she didn't seem overly concerned. After all, there are much worse things. However, as I will inevitably need to further increase my medication over the next few years, it's something to keep a close eye on.

The session was relaxed and open, and didn't feel rushed. Overall she thought I had responded very well to the medication and that I should have a good quality of life for a few years to come.

Before leaving I thanked her and told that I thought the service provided by the NHS had been fantastic, despite the long time it took to get appointments. 

Indeed, when I went to the front desk to book my next visit, I was told the first available slot was not until the end of July 2018.

That should be just about enough time to get to level 2,000 on Candy Crush...

Work promotion

Sunday 3 September 2017

If I were already retired, the early stages of Parkinson's would not be too difficult to live with.  For as long as the medication were still effective, the main problem would be the fatigue; I would simply take life easy, allow plenty of time for everything, and rest when necessary.  My mother is in this position and, whilst she has some difficulties with the disease, generally she seems to be still enjoying life.

But with young onset there is still a mortgage to pay, a pension pot to be filled, and in my case a child to raise.

So getting promoted at work this week was a double-edged sword.

On the one hand the promotion is recognition of all the hard work I have put in (and revenue I have generated) for my company over the past few years.  It means more money, more kudos and a more fancy title.

On the other hand, it means more responsibility, more expectation and perhaps more chance of getting fired for under-performance.  And that likely means more workload; I already struggle to make it through the work weeks, so I am going to have to be even more ruthless with my time management and delegation, and with saying no.

In hindsight, it was a good decision to be transparent from an early stage with my employer about my disease.  Soon after I was diagnosed I informed my boss, HR and Occupational Health.  In truth HR and OH are of limited help right now, but I do at least have an audit trail of openness that may be useful in the future when the time comes to inevitably request a more flexible working arrangement such as dropping to a four day week. 

My boss, and the few people in my team I have told, have been supportive.  For the most part there is not much they can do, but awareness helps, and at the margin people now stop and think before they make unreasonable demands.

However, the reality is that getting through every work day is hard, and it won't get any easier.  I am tired most of the time and have to force myself to present to clients, drive teams to deliver, deal with technical issues, develop strategy and demonstrate leadership.

It's a shame that, at the peak of my career, I have been struck by this disease. Rather than going on to even greater things, a phased withdrawal from the working world is now the most likely future.

Overall, I have a good employer that has been supportive to date, and does its best to promote diversity. I would like to give something back when the time is right, perhaps by being an advocate for my firm's disability network.  

That would be promotion in a different sense of the word and just as worthy, if not much more so, than my own promotion.