WALKING LIKE A LEGO MAN

A mostly true look at Parkinson’s Disease for those who have less clue than me...

One of the worst things about PD is that it removes some of the things in life that the non-sufferer doesn’t even have to think about, such as smiling, walking and swinging your arms.

The non-sufferer might think that the key signifier of PD is a shaky hand, but it’s not for me.

PD is (in an upside down sort of way) the Swiss Penknife of illnesses, by which I mean it has something to spoil everything you do. It even has the equivalent of a thing for taking boy scouts out of horses’ hooves: crushing fatigue, stiffness, feebleness.

The main signifier of all these things for me is my walk:

· Like a Lego man would walk

· Like a clockwork soldier would march

· Dragging one leg (the right in my case)

· Trudging with feet scraping the floor (both feet)

· Swaying from side to side to try to reduce balance problems (try edging along a row in the cinema)

· Each step tentative, as if the pavement cracks are preparing to trip or swallow me

· Hands clasped behind me, like - God Save Me - Prince Philip

· Exhausted by the effort caused by all of the above

Other physical problems:

· Rising from a low seat or seat without arms

· Rising from a bed

· Tying a shoelace

· Looking up rather than down when walking

· Not smiling

· Getting in and out of small cars; eek!

· Carrying things, especially liquids, while shaking

· Falling asleep in the day (tiredness due to a mix of shaking, efforts to counter shaking, low moods and so on)

· Unable to reach toes to clip nails or put on socks or tie shoes: although I suppose I could get extending nail scissors or Velcro shoes / ties?

· Feeling stiff everywhere else

Etc, etc, etc......

SOLUTION? A PERSONAL TRAINER?

My wife swears by her personal trainer and my daughter bought me 3 sessions with her trainer as a gift, so under their prompting I eventually had to give the idea a try. The trainer’s name is Lee Hicks and he is a Movement Specialist, looking at an individual’s mobility and stability, anywhere from injury through to performance. However, I’m his only PD customer and at 69, I’m his oldest.

First he used my gift sessions to determine the relative success of my movement and stability; looking for potential solutions; and then he started to develop a fight back strategy against this awful PD monster.

My view was that almost a year after diagnosis of PD I was noticeably stiffer, weaker and less capable of conducting the Activities of Daily Living (ADLs) as the experts call them. I was being beaten by PD, was frustrated and short of energy to fight it.

Lee selected a simple set of exercises designed to:

· Increase strength

· Increase stability

· Increase length

· Increase mobility

· Improve balance in motion

· Overall to increase potential ‘pathways to success’

While we have to accept where I am now and that PD might be an inexorable, unbeatable opponent (i.e. it may not be beatable, whatever we do) we can at least assume PD can be defeated and tackle it in a positive frame of mind. The goal is to improve – not just stand still or manage a slow retreat towards morbid or torpid .

At first Lee assessed how I moved to create our strategies for success, gradually focusing on the areas where gains can be made e.g. on my trudging gait and weak right leg, also getting in and out of the car.

Lee also looks at the ADLs and for small gains that can be achieved through small changes and lots of repetition. He also keeps me focused (would I really put myself through all this without him? No!).

Now I’m still not sure of making the team in Rio, but I no longer walk like a Lego man and after a few hesitant steps, particularly first thing in the morning, can be taken for a normal walker. Strain on my hips has reduced and I can put my socks on more easily. I’m still not sure of beating PD, but am at least in with a chance!

THE SWIMMING BATHS

Talk was about the ridiculousness of Donald Trump and his view of Muslims, followed by a critical account of accompanying your wife on Christmas shopping trips. General lack of interest, having to play a role in decision processes being just two of the many negatives.

Then there was having to write individual messages on cards which already had the obvious ‘Merry Christmas’ on them. ‘Bah, humbug, Mr Scrooge’.

THE VOICE

What follows is mostly true and mostly based on personal experience. If this Blog is anything it is probably ‘Parkinson’s for people who haven’t got it’ or are recently diagnosed with it.

Parkinson’s has some major symptoms to do with inhibited movement, but it also has what could be termed as relatively minor symptoms such as problems of voice and swallowing.

So one of the many ways in which Parkinson’s Disease can get you down is by removing your normal voice and replacing it with another, much inferior one. In my case the new voice is an occasionally weak and reedy one. And then there is an occasional deep and oddly gravelly version that can take over from time to time too.

I mentioned this odd modulation to my GP whose practice had flagged up the existence of physiotherapeutic help (ie physiotherapists, speech and language therapists, occupational therapists based at the big hospitals) .

So I met all three types and thought that the most relevant was the speech therapist who might be able to do something about food bits getting stuck in my throat, gagging on my toothbrush, or the reedy – weedy - needy speech. Or even the gravelly – wavelly kind of voice that appeared now and then.

Up to now the only awareness I had of speech therapy was from ‘The King’s Speech’ or from my wife’s cousin’s daughter who is a speech therapist.

FOODY BITS

I began with a videofluoroscopy after complaining of a sensation of food sticking in my throat. Also of choking when brushing my teeth. Basically tests showed my swallowing was fine and dandy; various liquids, sandwich bits, a muesli bar were photographed going down with little trouble. No further action was required. Apparently I presented with a functional swallow, and some instances of reduced hyo-laryngeal excursion. Nothing to worry about!

Thought I could outfight my toothbrush and get on with it. Which just left the weak voice....

SINGING AAAAAAAGHHHHHH!

It was recommended that I try LSVT (Lee Silverman Voice Treatment), an intensive Speech and Language Therapy which has a strong evidence base to support improvement and maintenance of voice and swallow function in people with PD.

People with PD, or other progressive neurological diseases, can be resistant to speech treatment. Almost 90% of these people suffer with voice and speech disorders of some kind, but only 3-4% receives speech treatment; even when reduced ability to communicate is considered to be one of the most difficult aspects of PD.

Limitations of communication include, for example:

· Hypophonia: reduced loudness

· Monotone: reduced pitch variation

· Breathy and hoarse voice

· Imprecise articulation

· Lessened facial expression

So PD sufferers are less likely than others to participate in conversations. In the pub this is exacerbated by the tendency of most old curmudgeons to dominate the conversation by simply talking louder.

The Speech Therapist was fantastic, articulate (as you’d probably expect!), well organised, professional, friendly and patient. And LSVT LOUD as the treatment is known, having been tested for over 20 years, has led among Parkinson’s sufferers to improved loudness, intonation and voice quality, with improvements noted for two years. LSVT LOUD has also been effective in improving disordered articulation, diminished facial expression and impaired swallowing.

We began each one hour session in a quiet room with 15 repetitions of a loud middle range aaaaaah note, held in my case for a slowly increasing time of up to around 20 seconds, followed up with 15 rising aaaaaah-eeeeeeehs (High!) and 15 falling aaaaaah- oooooos (Low!), followed by 5 readings of 10 simple sentences, followed by debate of a series of questions and answers, and other readings, all the time measuring the voice: eg duration of aaaaaaaah noise, volume and so on.

Lots of sips of water required!

Over the course of two weeks of these intensive sessions I was also encouraged to undertake one or two revision sessions of 10 to 15 minutes per day. And after the course a daily revision session, often in my case in the car. Also do quizzes, crossword, number and word puzzles. Thus keeping the remaining brain cells as alert as possible.

So far so good.

But the dog hates it and howls like a banshee. But for all I know she’s joining in.

PETE BRADLEY’S HYMN BOOK

On the subject of singing...

At school we had to back our books in brown paper, holding them up in turn to prove it, which often meant lads backed only one book of each size and held it up to represent all fat books, all thin books or all large format books. Pete Bradley had backed even less than the rest of the class and was holding up his hymn book each time, for fat, thin and large format, relying on being in the back row to provide camouflage.

It got round to Songs of Praise, the fat Hymn Book, and our form teacher shouted for all 33 of us to hold up our carefully backed copies. Thirty two hands and books were held up and Ticker Robinson (initials TKR), form master, said ‘Bradley, where’s your Hymn Book?’ to which young Bradley said ‘it’s all right sir, I know all the words’.

And in spite of being a 69 year old heathen, so do I....

SHEFFIELD UNITED MAY BE RUBBISH, BUT....

Relatives from the Deeney and Wood family of Sheffield, staunch Blades, have presented me with a football signed by the team. See below. And after a poor run, they won on Sunday! Obviously cheered on by my new strong voice.

Also took me for a couple of delicious pints of Pedigree to a fabulous pub called the Barrel at Bretton in Derbyshire, plus a pint before the match of Kelham Island’s Easy Rider at the Sheaf View. Clint Eastwood may be the greatest cowboy actor of all time, but I bet he’s never had a pint of Pale Rider.

HOW ABOUT JENGA?

This dog is my latest subscriber / reader and is an Australian cross breed called Buzz, friend of Sissie and Jack. He doesn’t know I’ve got Parkinson’s.

Parkinson's Disease is a degenerative disorder of the central nervous system. Symptoms are movement-related, including shaking, rigidity, slowness of movement and difficulty with walking and gait. Later, cognitive and behavioural problems may arise, with dementia commonly occurring in the advanced stages of the disease.

RESTING TREMOR

A tremor is an involuntary shaking movement in a part of your body, such as your hand. There are many different causes of tremor, but the most common type is an 'essential tremor'. This is most noticeable when you're moving. A Parkinson's tremor is more likely to be a 'resting tremor', which happens when your body is relaxed. Anxiety or stress can make a tremor worse, so it's important to find ways to relax.

See more at: http://www.parkinsons.org.uk/content/tremor-and-parkinsons.

I’ve still got PD! But I keep trying to fight it off and have recently tried singing lessons, sort of; of which more in a week or two. But in the meantime the excellent speech therapist has suggested crosswords, Sudoku, and quizzes as ways to keep the old brain cell active. Which is where Jenga, or the Tumbling Tower game, comes in. Physical dexterity combined with use of the brain.

We were at a family wedding drinking into the early hours (I’d retired to bed) and a group of my relatives were playing Jenga when a young man, a stranger, joined them and played with what he jokingly described as PD. It was generally deemed best not to correct him since I wasn’t actually present. However, it is interesting to speculate how I’d have felt or whether I would have said anything. Funny isn’t it, that I myself moan about having PD, yet joke about the shake in my right hand.

Well the next day the family played Jenga in a pub and I had a bash, with the rules amended to allow me to use two hands, while the others used one hand only. And although I lost (fifth of five) I coped all right to my own surprise. Which is where the resting tremor comes in. My hand tends to shake when it has no task to undertake. Pardon the pun but with a task to fulfill it doesn’t shake, it rests. I guess that I’d win a small victory if I could only give it a continuous task that I could fob it off with.

Sitting in the cinema watching the amazing film Carol my right hand jitter bugs more or less continuously. I can suppress the jitters by placing my hand under my left arm pit, squeezing a rubber ball, sitting on my hand or simply by moving positions, but nothing lasts! Not until my wife sits on my hand which controls me for longer. It helps if the film is as good as Carol. It also helps if the bottom is as appealing as Mrs Jackson’s.

Incidentally, I shake when Mrs J comes close to me or when I meet strangers. Guilt?

AT THE PUB

The old curmudgeons were joined by a guest French curmudgeon who, referring to the French regional elections, seemed to have some sympathy for various Le Pen family members. Takes all sorts I guess.

Other topics: children, weddings, Scottish independence, Thailand, Seb Coe and Nike, the spending review, M. Hollande, beer quality, customer service, tumble dryers. The usual stuff.