Monday, 25 July 2011

Three cheers for Robert Plant - Picks Disease is sh*t

I just read how Robert Plant plays a community hall gig. So, a mega star plays a tiny gig - why is that enough to rouse me from my nesting malaise to blog again? It was not so much the gig as the cause he did it for. He was raising funds for Picks Disease.

It is not often that you read about Picks Disease - so it jolted me a little, seeing it written about when I have not really thought about it for so long. The shadow of this disease has fallen over so many of my life's great events, in the way that the absence of a parent can. My Dad's death was bad, but the illness that preceded almost defines heartbreak for me.

Seeing a man transformed, humbled and dehumanised as an illness insidiously took away all that made him great, then robbed him of his life. I say insidious as it was hard to say when the illness first started to take a hold. He was always an individual, a free thinker with a bit of a speech impediment - and the illness seemed to exacerbate these attributes until they became to define him - rather than his charm, wisdom and kindness. Instead of having a speech impediment he became incapable of communicating with those outside the immediate family as his grasp of language evaporated; a gentle disregard for convention over time became erratic behaviour and eventually he was at the mercy of a, sometimes, violent conviction that his needs must be met (think of a toddler with super human strength).

Picks Disease is a form of frontotemporal dementia - hands up anyone who knows that means? The likelihood is that if you are not involved with the medical profession or have first hand experience you will have no idea what it involves. The truth is to the outsider the illness outwardly resembles a mental illness - a broken leg elicits sympathy, mental illness normally prompts concern and fear. Friends found it difficult to cope - although those that owned up to their incomprehension and fear are the ones that I respected, rather than those who chose to judge and even criticise.

His illness was beyond distressing - it is a little known disease and we had no way of understanding it or predicting how it would progress. For many years we stumbled on, seeing all aspects of his character and everything that made him human dissolve until one day when I was sitting with him his finally forgot how to breath and he slipped out of this world. Someone said that it is a great comfort to be with a loved one when they die, but I disagree. However, I found it almost impossible to leave the room until the Doctor arrived an hour or so later in case even then I was letting him down on his final journey.

Even in mourning the illness dictates your actions. The first great step was to remember the man before the illness - the stacks of letters we received was a great help with that. It took years before we could look back and think of the amazing man he once was, unclouded my memories of illness - even longer before we had the strength to see him as a human with all his attributes good and bad. He was amazing and he was human and Picks Disease robbed him of all this and kidnapped our memories was we struggled to cope with the devastation of this illness.

I hope that by Robert Plant in some way raising the awareness of this disease, helping families get support and advice to deal with this - support that was so lacking when we were trying to cope.

[Sorry, I'm going to press publish before I edit this post out of existence. He died in 2002 but it still feels very raw trying to write about it]

Monday, 11 July 2011

Individual Preparation

Two friends have asked about what to buy to prepare for a baby - I even collated a Baby Preparation List from many on-line versions and annotated it. But lists are one thing, but what is the real gossip and personal insight? Well once I started a survey about the most useless piece of equipment and, by contrast, what was the best bit of kit bought and somewhat surprisingly the same products appeared on both lists.

There are some universal tips that I would offer like always have a tea towel or cloth in your buggy as you never know when you have something to mop up at a cafe or in the playground (think swings or slides) and buy a hand bag insert (the type being marketed at at non-Mums who may have more than one handbag) this can really help keep the snacks, wipes, crayons and kiddie paraphernalia separate, handy if you are going back to work and want to appear professional.

So much depends on what type of parent you are. The most expensive item you will probably buy is the push chair. I know so many Mums, including myself, who have ended up by buying a second when they realise what a duff choice they made first time around. A pushchair is not just a pushchair to some but a status symbol that can put your car to shame, I discovered this listening to the appropriately named iCandy Mums at the school gate. There are websites dedicated to bringing you the latest on which celebrity has been spotted with which buggy. Likewise Bugaboo have the most loyal of all owners, and they certainly do offer flexibility and functionality and the choice of endless optional accessories (summer and winter linings anyone?). Why did some of us get it so wrong first time around, well for one friend needed an off road stroller as she became an ardent walker when she became a Mum, others have baby number two so quickly that they need a double buggy almost immediately. Me? As a Mum I wanted something that was light and highly collapsible and reasonably ethical as out favourite outings were into London to see the latest exhibition so I needed something that I could pick up in one one had while I popped the Pickle into sling adjacent to my bag and get onto trains, buses and tubes. To augment the pushchair I found a decent sling is really important and to my surprise a baby carrying backpack. I would never have bought a backpack, but we were given one and it was fabulous for family days out; it had the space for all manner of random 'stuff' and snacks in the capacious pockets.

Sleep? What is your attitude to sleep? Some parenting books advocate black out blinds - if so rush out and buy - I lined the Pickle's curtains with black out material but in reality we were never rigid about adhering to darkness and silence. Now Pickle is the perfect party girl, comes anywhere with us and when she is tired she drops off regardless of light and noise.

Bathing? The Hubster asked me if we even had a baby bath - and the answer was no. This highlights how personal decisions are; when pregnant I had been to the Museum of Decorative Arts in Copenhagen and seen a display about how the design group Normann came up with the final design for their silicon washing up bowl and so guess what I bought for a baby bath? Yup, a designer washing up bowl that worked perfectly and has not gone to waste when she grew too big and shared a bath with me.

Not only are buying decisions personal, but they are subject to irrational prejudice. Dummies are recommended by FSID and other highly credible sources, but somehow I could never bring myself to buy one. I know some Mums who find the idea of second hand or hand me downs as just not right  where some Mums swear by eBay and Freecycle. We were lucky that we have an excellent toy library nearby - so I could test before I bought; I discovered that the Pickle never got on with Activity Centres (and it was not a very stylish coffee table) and as Bumbos seem to be indispensable for a whole six weeks of development time it was great to borrow one for just that period (any other uses you can think of for a piece of molded plastic? a primary coloured plant pot?).

Few Mums know ahead of the birth if they will be able to breast feed. Fortunately the Pickle was a natural feeder and so I am really glad that I did not invest in bottles - in the same way that buying an expressing machine in advance would be a waste if your babe will not latch on. It also effects what baby bag you buy. Often change bags vary from other bags just by having a removable changing mat and have insulated pockets for bottles. I had a funky little changing mat that included pockets for nappies, wipes etc that could transfer from bag to bag and I just had to go out and buy myself a capacious leather bag that is still serving me well with the Pickle aged almost five.

I economised on not buying much that was disposable and used my initiative to avoid buying many gadgets. Did I ultimately save? No way, when I bought I tended to buy organic and I enjoyed serious retail therapy when it came to dressing my little doll darling and always made sure that we had plenty of books and arts materials rather than waiting for birthdays and Christmas. Birthdays, Christmas and Pocket money...that is a whole different debate!