PD, an update

On 14 May 2016 and full of trepidation, The Boss and I made our way to what I still think of as the ‘BUPA hospital’ in Pontprennau, although it is a ‘Spire’ Group hospital and probably was back in 2016 too. I drove carefully and well within the posted speed limits, in no rush to arrive for this particular consultation. Regular readers will recall that my appointment was to determine what was causing a tremor to my hand and fingers. My GP, years before, had identified an ‘intention tremor’ but this had become more pronounced and widespread. You know how it is I’m sure. We had looked at possible conditions online, guided by the ever resourceful Google. The problem with this being that the quality of the search results we obtained was undermined by the scale of our ignorance about what we were searching for.

Beforehand, we had whittled down the most likely alternatives facing us to multiple sclerosis or Parkinson’s Disease (PD). And so I had been referred to a neurologist, specialising in conditions affecting the brain and nervous system. He had me perform a number of physical exercises to assess whether I had any problems with movement. According to the nhs.uk website a diagnosis of PD is likely if you have at least two of the three following symptoms: shaking or tremor in a part of your body that usually only occurs at rest; slowness of movement (bradykinesia); muscle stiffness (rigidity). Before half an hour had passed the Consultant opined that I did indeed have PD, a conclusion he put in a letter to my GP. The Boss and I found the whole consultation to be impersonal and cold, bordering on unfriendly. This was a source of some upset to me for some while to come. As time passed however it struck me that perhaps I was guilty of ‘shooting the messenger’ and that what seemed cold and impersonal was simply a way of his maintaining a professional distance when conveying distressing, life-changing news. Maybe. I was subsequently referred to a team of doctors and nurses specialising in neurodegenerative conditions. For all that these staff were professional and informed, the impression given by Rookwood hospital was of a corner of the NHS that had been underfunded for years. Not that it was the condition of the estate alone that conveyed this impression. As many people in the UK who have neurodegenerative conditions or diseases of old age will attest, resources are still over-concentrated in the secondary sector - big district hospitals in particular - when a greater investment in primary and community care, in ‘Cinderella’ services and health promotion, and in disease prevention and mental health might lead to a healthier population overall. I learned that there is currently no cure for PD, but treatments are available to help relieve the symptoms and maintain quality of life. These treatments include: supportive therapies, such as physiotherapy; medication; and surgery (for some people). During the early stages of PD, when symptoms are usually mild, it may be that little or no treatment is required. I was offered drug treatment and physiotherapy. As I have narrated here before, the biggest changes that I noted following my diagnosis related to falling off things and into things! That, muscle weakness, and exhaustion. In no particular order, I fell: whilst bounding up the steps of our old house (then sliding along a concrete floor and ramming the front door with my head); whilst jumping off a low wall and landing in the greenhouse (twice!); into the river by Roath Park Rec (twice - pulled in by my two dogs when I was walking them on their leads and they both dragged me into the river). In terms of muscle weakness my

by Wyn Evans

least accomplished anecdote is that I recently bought a JLL running/walking machine on the advice of my Physiotherapist. Along with other exercises that he was recommending he thought that using the running machine for my daily walk would build up my strength and stamina. It’s been a month now and there’s only one slight flaw with this plan: I don’t have the strength to lift the blooming thing out of its box! We thought the machine would be a good idea after a few occasions when I’d had to telephone The Boss to come and get me in the car after I’d gone on a ‘real’ walk only to find that my legs and back had seized up, leaving me sitting on someone’s front wall looking sorry for myself and unable to walk another yard. And as for exhaustion, barely a day goes by without that I need to close my eyes and sleep. I’ve built it into my routine. I’ve been fighting against applying for a Blue Badge for some time but have now reached the stage where I need one. Then there are the things that no one told me about back in 2016. First of all, is the fear that I will be one of the twenty- to forty per cent of people with PD who go on to develop Dementia. This fear comes back to haunt me every time that I can’t find a word I’m looking for or think I have forgotten something. Mind you, it can lead to some wry comic moments: I have an overactive thyroid as well as Parky’s and had a telephone consultation with my hospital Consultant Endocrinologist one morning recently. With one of the thyroid options being considered there is an increased risk, over another two options, of sepsis. I had intended to ask her about this. But what came out of my mouth was: “can we talk for a bit about the risks of Strepsils please?”! But truth be told (and throat lozenges aside!) I am not exhibiting any signs of cognitive decline but it is something that causes me concern. I’m told the trick lies in not thinking about it; and remembering that for most people with PD it is no more likely to occur than for a member of the general population who does not have PD.

Other things no one tells you about? First, the toes thing! My toes curl over as if they are trying to dig their way out of my shoes. To counter this I have found Dr Frederick’s three loop hammer toe gel sets, “to realign toes while preventing overlap and rubbing”. Marvellous! Then there is needing to learn afresh how to swallow, and a constant need to blow my nose. There are other symptoms too but they don’t seem to have affected me much yet and since they fall under the category of ‘too much information’ I don’t intend to enter into a discussion here in a family magazine! A while ago I promised readers that I would not just confine this column to family life with The Boss and The Girl but that I would occasionally update about my PD. Thank you to those who have asked me how it’s going and I hope this piece answers some of your queries. I’ll sign-off and leave you with a photograph of The Girl taken this weekend – for no reason other than she is beautiful and will cheer you all up!