Blogging with Parkinson's

A personal perspective on Young Onset Parkinson's


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Could it really be so simple?

My problems with sleep have been going on for more than two years, but they seemed to get significantly worse at the end of last year (2016), when I stopped taking Ropinirole. I had thought that the lack of Ropinirole might be the cause; my consultant had said that it could cause hyperactivity, which I thought might have been masking the effects of poor sleep, allowing me to run on empty …

But now I have a new theory. A very simple one: I was undermedicated. And I’m amazed that it took me this long to figure it out.

In June, I was bitten by an insect and had an impressive (but not dangerous) allergic reaction to the bite. More seriously, the bite became infected and I ended up in hospital overnight on intraveneous antibiotics. The time in hospital was a pause, a break from normal life: a time to think. I realised that I needed to do something about my sleep. I decided to try over the counter medication (with advice from my GP and pharmacist).  Unfortunately, it didn’t work (I think mainly because my problem was not going to sleep in the first instance, but staying asleep).

I also got in touch with my Parkinson’s nurse specialist and asked for help.  She wanted me to speak to the consultant, but that wasn’t possible at the time (I now have an appointment for September).

It felt like I was unavoidably on my own, at least for the duration of the summer holidays.

After struggling through a nasty cold that was all the nastier (or so I presume) for my poor sleep, it suddenly occurred to me to try adding an extra Sinemet CR tablet into my day.

Sinemet CR is a controlled release form of Sinemet, a widely-prescribed levodopa vehicle that contains 50mg caridopa as well as 200mg levodopa. It is currently my main anti-Parkinson’s drug. I also take 1mg Rasagiline (Azilect) daily for its supposed protective function, and have a supply of Sinemet Plus (half the dose of the CR, but potentially faster acting because it isn’t controlled release) that I use as a sort of boost to the CR.

I was taking four CR daily, starting at 7 am and finishing at 8:30 pm. I would go to bed and wake in the wee small hours, typically between 3 and 4:30 am. If I went to bed late, I would often wake earlier. Going back to sleep was difficult. Often I would start to notice my Parkinson’s symptoms getting more prevalent as I got more and more impatient with being awake; I tried taking Sinemet Plus, and it seemed to help, often giving me another two hours of sleep, about an hour after taking it.  It wasn’t reliable, but it was the only thing that seemed to have any effect at all. This was one of the reasons that I decided to try a new regime.

I am now taking five CR daily, starting at 7am and finishing at 11pm. They are a little closer together.

It has only been a few days – six, to be precise – but the effect was apparent the first night and has remained constant: I sleep longer (I’ve been waking at 6am). I feel better during the day. I have not needed to “boost” myself with Sinemet Plus so much. I am still, I think, recovering (from the cold as well as from prolonged lack of sleep), but things are definitely looking better.

I have also noticed that, when my sleep was interrupted in the early hours, I invaribly woke in the same position that I had gone to sleep in. I don’t know if that is, or was, “normal” for me or not – I had never scrutinised my sleep that closely before. But a couple of times over the last week, I have woken in a different position – both times on my back, instead of on my right hand side. One of those awakenings was in the middle of the night. I woke enough to register it, and to turn onto my side, and then… I went back to sleep.

 

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Fatigue

I think I am suffering from fatigue.

Fatigue in Parkinson’s is an acknowledged “non-motor” symptom (that is, it is not a visible sign of motor impairment such as tremor or slowness). However, it is not necessarily as well understood as some non-motor symptoms, not least because it has an assortment of possible causes.

Fatigue is a common symptom of depression, and depression is a common symptom of Parkinson’s. But that doesn’t mean that fatigue in Parkinson’s is due to depression and in my case, I’m pretty certain that it isn’t. I don’t feel depressed.

Just as depression is more than feeling down in the dumps, more than a temporary period of pessimism, fatigue is more than just being tired or sleepy. It’s difficult to describe either difference (as I perceive them) except to say that there is a different quality, an intensity of experience in both cases. I have only skirted the edge of depression once, and that was some yeas ago, but I got close enough to recognise it as something other. What I feel now is not that, but it has the same desperate overwhelming type of effect and it is purely to do with feeling tired, sleepy or weary.

I think that at least part of the cause, for me, is my recent change of medication. My consultant suggested to me that ropinirole can instil a form of hyperactivity (which I think may have buoyed me through previous shortages of sleep) and that coming off ropinirole (as I just have done) can result in a period of sleep problems and consequent tiredness.

Sleep at night is a problem, although it’s not as bad as it has been. I go to sleep reasonably well, and at a reasonable hour, but I often wake at 4 in the morning. Most nights (usually after visiting the bathroom) I can get back to sleep for a couple of hours. I’m not often overly troubled by Parkinsonian tremors or rigidity at these times, which seems to indicate that I’ve more or less got the levels of controlled release Sinemet right.

And my difficulties sleeping don’t just affect me. My husband is a light sleeper and I have inadvertently woken him or disturbed his sleep on countless occasions.

General weariness combined with sudden, intense increases of tiredness during the day are a big problem. These are the main reasons I think that I am fatigued rather than tired-because-I-didn’t-sleep-well.

Curiously, I can sleep for up to two hours if I allow myself to when I feel this intense tiredness. I can also ignore it and eventually it dulls, or push through it by doing something physical, but neither of those are easy. I can’t nap unless I’m in that period of intense tiredness (I’ve never been able to nap in the past), and it’s not every day that it’s convenient or possible to nap when my body tells me it needs to sleep. It’s a bit difficult to collect children from school at 3:20 if you let yourself go to sleep in the early afternoon.

I don’t feel right napping in the day. I do feel better after a two hour nap, but not for long, and I’m concerned that it might be adversely affecting my sleep that night.

So I had a bit of a hunt around on the Internet to see what I might be able to do. Advice from Parkinson’s UK and the Michael J Fox Foundation (two organisations that I trust) points very strongly in one direction:

I need to exercise more.

 

References:

Parkinson’s UK Information sheet
https://www.parkinsons.org.uk/content/fatigue-and-parkinsons-information-sheet

Michael J Fox Foundation on Fatigue: “Why can’t I seem to get anything done?”
https://www.michaeljfox.org/understanding-parkinsons/living-with-pd/topic.php?fatigue

Michael J Fox Foundation on Fatigue: 7 ways to help fatigue
https://www.michaeljfox.org/foundation/news-detail.php?ways-to-help-fatigue-in-parkinson-disease

2009 articleby Jonathon H. Friedman MD (noting the doctor’s clinical responses to fatigue in Parkinson’s) https://www.ncbi.nlm.nih.gov/pubmed/19364453

2005 article by Jonathon H. Friedman MD (summary of what fatigue in Parkinson’s is) https://www.apdaparkinson.org/uploads/files/Fatigue-8-25-vj8.pdf


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Downside

Happy Christmas

Happy Christmas

[This post relates to my last-but-one post, “Don’t it always seem to be…”]

I spoke to my consultant. Apparently this tiredness could be part of the withdrawal from Ropinirole, which can  make you “a bit hyperactive”. I think that’s what she said (I think I was, at times). But she also said that it will pass, and that I will reach an equilibrium.

And I’m going to try a modified release Sinemet, which should help to even out what they call the “on” and “off” states.

I refuse to stay down here for long. I’m looking for the UP escalator. Anybody know where it is?

 


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Motivation

_20151104_083956A few weeks ago, my local Parkinson’s UK group welcomed a speaker. Dr. Masud Husain, who described his work at Oxford University on Motivation related to Parkinson’s.

Not only was the talk fascinating, it also felt very relevant. The behaviour patterns he described were uncomfortably familiar (in broad outline, although the lines were bolder and blacker for the people Dr. Husain was talking about than they are for me).

There was a man who had a stroke, affecting – very specifcally – the dopamine-producing regions of his brain. He recovered. But he didn’t want to do anything. He didn’t want to not do anything, either. He wasn’t depressed. He was inert. Apathetic. Completely unmotivated. He lost his job. He lost his home. His friends took him in, then they took him to the doctor. “He’s boring,” they said, “he didn’t used to be. He doesn’t do anything at all unless you tell him to do it.” The doctor referred him to Dr. Husain. Dr. Husain gave him Parkinson’s medication, and the man regained some of his lost motivation.

We were shown a video of a couple. She had Parkinson’s. He had gripes. “She doesn’t do anything”, he said. “Except watch television.” She agreed, but she looked uncomfortable. She didn’t want not to do anything – not in the abstract – she wanted to be her former, busy self. But she wasn’t. She couldn’t. Her get up and go had got up and gone.

Dopamine, explained Dr. Husain, has been associated primarily with motor functions, especially in Parkinson’s patients – but that isn’t its only function. It is also associated with pleasure, rewards, and motivation. Basically, it isn’t just the carrier for the signal from brain to muscle to do something.  It’s what gets you moving. What gets you out of bed in the morning. What makes you send the signal in the first place.

I was particuarly intrigued by a couple of graphs, which can be seen in Fig. 4 of a “Note” published in Cortex, Volume 69, August 2015, Pages 40–46. The note, by Trevor T.-J. Chong, Valerie Bonnelle, Sanjay Manohar, Kai-Riin Veromann, Kinan Muhammed, George K. Tofaris, Michele Hu and Masud Husain is entitled “Dopamine enhances willingness to exert effort for reward in Parkinson’s disease”.

I have linked the graphic below. The caption is taken from the note.

from

Effort indifference points plotted as a function of stake for patients and controls. (A) Regardless of medication status, patients had significantly lower effort indifference points than controls for the lowest reward. However, for high rewards, effort indifference points were significantly higher for patients when they were ON medication, relative not only to when they were OFF medication, but even compared to healthy controls. Inset: For clarity, PD data are replotted against control performance for patients (B) ON medication and (C) OFF medication. Shading denotes effort indifference points being greater for patients than controls (orange), or less for patients than controls (yellow). Error bars indicate ±1 SEM.

My take on this is to observe that, with or without medication, the person with Parkinson’s is likely to find it harder to do something they aren’t very interested in than a “normal” person. Without medication, with greater interest, they will eventually reach the same level of motivation as normal (but it’s got to be a really interesting thing!).  With medication, they reach “normal” sooner – and then exceed it. So if that really interesting thing comes along, the medicated person with Parkinson’s is not going to let it get away!

Everybody has different interests, and it goes without saying that painting a landscape is not going to float every Parkie’s boat, but relatively few will get excited about doing housework…


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“Am In Control?” – A Poem

Parkinson’s Awareness Week

(Some of the following is an exaggeration for poetic effect.)

The kids are off school,
Running riot through the house.
Am I in control?
Not really, no.

I’ve spent too much money;
My credit’s all gone.
Am I in control?
Not really, no.

The laundry’s piled high,
And the hoover’s hard to find.
Am I in control?
Not really, no.

I’m stiff and I’m tired,
And my left hand won’t work.
Am I in control?
Not really, no.

My toes curl themselves
So it’s difficult to walk.
Am I in control?
Not really, no.

But paint on the canvas
Goes smooth and as planned.
Am I in control?
Indubitably, yes.

Parkinson’s Awareness Week