Sunday, 18 March 2018

Reflections of My Life: Growing old with Type One Diabetes


Reflections of My Life. This sounds a bit personal and heavy, but it doesn’t signify any particular change of mind-set.

It’s just that I’ve perhaps had more time for thinking in recent months, and together with a few unrelated events and changes in my life, it’s led to a blog post forming in my mind. As always, I’ve given it a title from a song, and this one is a real favourite of mine. It’s a track by Marmalade, a somewhat under-rated Scottish band who spanned the late 60s into early 70s with a series of songs that saw them grow from beginnings in fairly bland 60s “pop” into a versatile, musically and lyrically literate outfit. This one is a real gem from early 1970, a song as wistfully reflective as the title suggests.

So what’s this post all about? Well, I guess it’s about growing old, and in particular growing old with diabetes. And why now?

Well, I’ve been doing a lot of digging recently.

There’s been a lot of literal digging, as we have just moved into a new home with a very large, undeveloped garden. I’ve been out in all weathers, patiently and methodically creating two long, undulating borders along the sides of what was a rectangular lawn. It’s the sort of task I love. Easily defined, constructive and with a visible and measurable outcome, it gives me fresh air, exercise, stable blood sugar and lots of thinking time. I have also been delighted by the extent to which people on twitter have enjoyed following the progress of my work. Simple pleasures.

My Growing Border
Then there’s been some metaphorical digging as I make similarly slow but equally steady and rewarding progress indoors, uncovering the full extent of my family, past and present. I’ve been building a family tree on Ancestry for several years now, tracing back my own and my wife’s forebears, but a particular meet-up with cousins from two generations on my father’s side has led me to propose and organise a gathering to celebrate the centenary of my paternal grandparents’ wedding, in April 2019. This has re-connected me with 8 first cousins with whom I had been in minimal contact, and to hear about their lives and their families has been a great pleasure and also a reminder that we are all growing older together. I am, with the help of my cousins, planning quite a party.

So I was thinking about all this whilst digging away at my lawn, when at some point in recent days I saw this post from the wonderful @LisWarren, one of the many great friends that I’ve made in recent years though the online diabetes community:


With her 50+ years of living with Type One and tireless advocacy work, Lis is, along with @PeteDaviesType1 and @apatrickmooney a shining reminder to all of us that diabetes is no barrier to a long and healthy life, but she is right to draw attention to the fact that the very success of treatment and care for Type One diabetes since the discovery of insulin therapy in 1924 inevitably leads to there being a growing cohort of older people with Type One. The discredited epithet “juvenile” for Type One still persists enough to sometimes give the impression that it is a young peoples’ condition, which it of course isn’t. And therein lies a challenge for all of us who live with diabetes. We’re very good at self-care, but how good will be at it in old age?

My own “reflections of my life” in recent months inevitably include an awareness of the ageing process, and whilst I am not and never have been, one to dwell on doom and gloom, I nevertheless cannot help but wonder what it will be like to live with Type One at an advanced age.

My own parents both enjoyed good physical health and led active lives well into old age, but if one fear does haunt me it is that of succumbing to the Alzheimer’s Disease which turned my late mother, once a lively, witty and energetic schoolteacher, into first a grotesque caricature of her former self and then an unrecognisable and unrecognising shell of a human being, whose death at 85 in 2013 was a merciful release both for her and her family. I was not a blogger at the time of her decline and death, but it is a story that I may tell on here one day: to end up as utterly helpless and unaware in the final years of life as she did, and to become totally dependent upon others for diabetes management is a very sobering thought for me.

As I wrote in this recent post about technology and diabetes, I accept that I am too old to have any prospect of being cured of Type One, and I also accept that whilst the health of older people is much better than it was even in the recent past, I will over the years that I have left become weaker, frailer, more forgetful, less capable and so more dependent upon others.

But let this not end on a gloomy note. I am very well thank you, busy creating a garden, building a family tree, collecting and posting photos for daft #GBDOC collages and organising events for my family and others. And many of my friends, especially those in the diabetes community, are a lot younger than me. So I am a long way, I hope, from being “put out to grass”.

And at the risk of repeating the conclusion from that recent post, I have great faith in technology to help me both with my life in general and with diabetes management. I feel blessed to be young enough to have embraced the revolutionary changes in ICT that have swept through our lives over the past couple of decades. It is easy to think of smartphone addiction, social media and the like as a young peoples’ thing, but these gadgets and gizmos which we all love so much will be a massive boon in old age that my parents’ generation have in many cases missed out on. I imagine the care homes of the distant future being full of old folk, still sitting around on chairs as they do today, but all clutching a tablet or smartphone and fully engaged with and enjoying stuff like silly videos on You Tube, gifs and viral posts on social media. And hopefully, they will be a lot happier for it. Technology and old age certainly do mix.

For those with diabetes, is it too much to ask that access to technology - pumps, CGMs, closed loops and the like should perhaps be regarded less as “just for younger PWD” and more as a priority for those of more advanced years.

Now, back to the digging….

5 comments:

  1. There are people your age closed looping with DIY artificial pancreases Adrian. One in Workshop, not a gazillion miles away

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  2. Workshop? or Worksop, Notts? 🤔

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  3. Hi Adrian,

    The family get together in 2019 will be brilliant :)

    Really good points about dementia and diabetes management in the elderly - a huge issue.

    This is a great BBC radio programme on diet and dementia:

    http://www.bbc.co.uk/programmes/b08vxjtk

    Diet and exercise are such important factors. Reduction of dietary animal and hydrogenated fat (in lots of biscuits), as in the traditional Mediterranean diet, is one of the best preventative approaches.

    Maggie and I have both moved to a predominantly plant based diet (for both health and ethical reasons) and feel very much better for it :)

    Good quality sleep is another vitally important and much overlooked factor for the maintenance of long term brain function.

    I'm keeping an open mind on the developments with automated insulin delivery - the overnight control with current closed loop systems is very promising, but it's difficult to get around the time lag with s/c insulin delivery for it to automatically cope with mealtimes. The most recent guidance is to bolus rapid acting insulin 20 minutes before eating.

    I'm thinking about starting a blog - any advice on how to do it would be warmly welcomed :)

    Very best wishes,

    Ian

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  4. Dear Ian,

    Thank you as often before for your kind feedback. I know that many people read what I write, and people occasionally tell me it's good, or just "like" and "retweet" on Twitter, but it's great to have some more personal and thorough comments.

    This one has certainly sparked a conversation and I think it is an important one. I don't think it's been raised much in the past, because those who talk about diabetes ( be they patients or HCPs) on social media and blogs are almost by definition younger. Other than prominent T1Ds Lis Warren, Pete Davies and Pat Mooney, I am significantly older than most in the online community, which is lovely in that I have so many young friends, but there must be 1000s of ageing T1SDs out there for whom old age brings real issues. I am hoping that by raising it now at a relatively early stage, it can be an area in which measures are taken before I and others start to need them to be taken!!

    I would thoroughly recommend doing a blog IF you enjoy writing - which I do. I don't really mind what reaction I get, because I just find getting thought down in a coherent form very satisfying. And if others enjoy it or find it useful, that's a bonus.

    I am unusual in that I try NOT to just write about one thing. That means I don't figure in the rather meaningless "Top Diabetes Blogger" charts, but I prefer not to be a monomaniac!

    I tend to "write" a blog in my head over several days, then sit down and actually write it in a relatively short time. And by adding my trademark links to music, I just give myself a bit of fun. It's the Mary Poppins in me...

    With every good wish,

    Adrian

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  5. Thank you so much for the advice Adrian :)

    I'm a keen medical educator and I've found that there still isn't very much practical advice yet on the web on how to actually use CGM to improve the 'time in range' and avoid hypos. I'd be interested as to the new insights that you gained from the DAFNE course, or had you worked most of it out already as a T1D for twenty years? There's an excellent update to DAFNE on using the Libre on this page:

    http://www.dafne.uk.com/549.html

    And Adam Brown at Diatribe is leading the way with his great new book:

    https://brightspotsandlandmines.org

    We all have different learning styles but I think the best outcomes will come where PWD develop their own intrinsic understanding and insight into just why there's a day-to-day variability in insulin sensitivity, why exercise is so important, and to go with flow of the natural circadian rhythm (save the carbs for later in the day).

    To paraphrase RD Lawrence, to an extent the patient needs to be their own physician, dietician and lab. He was an active sportsman and found his diabetes much easier to control on Mondays and Tuesdays after plenty of activity at the weekend. We now know this is due to the upregulation of muscle glucose transporters that occurs with exercise, and which lasts for about 36 hours. As T1D's we are so much more reliant on muscle to clear and store a glucose load as there's no practical way to achieve the high local portal vein insulin concentrations that a normal liver is used to seeing after a meal. In giving insulin s/c we lose this natural concentration gradient of insulin between the pancreas and liver before it is diluted into the systemic circulation.

    Very best wishes,

    Ian

    ReplyDelete

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