Tag Archives: parkinson’s uk

A mile in your shoes…

I’m a bit of a Harry Potter fan. When I re-stumbled upon this Dumbledore quote, it gave my challenge new purpose. I’m doing this for Dad. And, with Dad, I can do it.

It is the Easter holidays for 2 weeks. I’m half and half on how I feel about them. Part of me really loves having the bigger girl around, shes funny, helpful, kind & chatty. The other part of me misses the structure of routine, the silence of nap times, the flow of the day. The biggest change of all is my morning walk.

Every morning, after school drop-off. Baby & I head off for a 3-5mile power buggy walk. In the beginning, it was to get her to nap. Whilst that is still my primary conscious concern, I didn’t realise until this week just how much *I* rely on it.

We’re still heading out for walks, the 3 of us, but they are slower, shorter, more stressful. The usual 9.02am eye-closing is replaced by a fraught crying & yelling & 9.18am eye closing, because baby has spotted her big sister & thinks it is play time. Poor big girl has to walk ahead of the buggy, out of sight – this makes me feel bad.

I’m conscious that I need to let baby sleep for her half hour nap (or else all hell will break loose), but also that 6 year old legs can’t walk as fast or as far as mine – though, to give her credit, she has powered through miles in rain & sun without a single moan & joyful exclamations about how “fit” she will be.

I miss the head-space afforded by 40minutes of zoning out.

I’ve realised that I am governed by times & timings. I *think* that my grief & post-natal hum has been, so far, managed by strictly controlling each portion of my day. This explains my unease at things (or me) running late, of baby not napping or eating on time, at people phoning during meal or nap times, the horror of someone wanting to “pop in” at an unarranged time. And I know people look at me with a “wtf” expression when I can’t do x, y or z because of naps, feeds, etc, but you can’t understand how someone else copes, you can only ever understand how you would cope. You cannot judge someone based on how you would handle a situation. You cannot walk a mile in someone else’s shoes. You can only support them. Judging them or using condescending or negative tones isn’t helpful. You are an expert of your own experiences only.

I digress… back to the walking. I’m a numbers nerd. I love the data that my fitbit gives me. Each week, I try to better the last (another mental battle I’m trying to “be cool” about this week). I try to ensure that I reach at least 5 miles a day, every day – with 5 weekday walks & 1 long weekend hike in place, slowly building up the miles. I’m SO looking forward to the challenge & truly believe it is totally achievable.

I’ve been clocking up 6, 7 & 8 miles regularly, but I now need to start chasing double figures. Dad, being a military man, always said “fail to prepare, prepare to fail” & so, I’m doing my very best, with the time & resources I have.

Grief leaves a huge hole in your soul. I feel as though different types of grief are digested and managed in different ways. No grief is more or less important than others, but some leave a much larger gap.

My hope is that the fundraising achieved through doing this challenge, will go someway to help find a cure or treatment for Parkinson’s Disease. I hope that it may fund a specialist Parkinson’s nurse. A valuable piece of equipment. Anything that might ease another family through a turbulent period.

Nic & I have been truly astounded by the generosity of those that have donated, we really have. To think that so many of you have been so thoughtful is truly heartwarming & we really appreciate every single donation, Really, every pound makes such a difference. If you’d like to donate to our 50km hiking challenge, we would be thrilled. You can find the justgiving page here.

Thank you all so much. Be kind to one another. xx

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Biscuits are Important!

Never underestimate the importance of a biscuit during a pivotal moment of life…

I went on a training walk this morning, around 8 or so miles. On my return, I had a fig roll. It wasn’t an ordinary fig roll, but the last in a very significant pack. This was the pack that I bought on the morning of New Year’s Eve – the day that Dad passed away.

There’s a standing joke in my family, that I always deal with any situation by providing food. Probably true. Anyway, in December, I had debated whether to take jaffa cakes or fig rolls over to Dad. I knew he loved both & though he was barely able to eat at all, he never turned down a bite of cake or biscuit. So, I plumped for fig rolls and headed over.

I never thought that he’d never see them. I envisaged bounding in to his room… “hi Dad, I’ve got you some fig rolls”…

Anyway, it was today, almost 3 months on, we opened the pack. So insignificant and significant at the same time.

The grief becomes less constant, but more powerful. Rather than a perpetual ache, it swings between normality & all consuming sinking.

If, by walking & walking & walking, we can raise any amount of money that could help another family through this, or to fund a Parkinson’s specialist Nurse, or can help to fund research in to symptom management, well, anything would make it all so worth it.

Each & every donation helps to top up the team pot. We are hoping to not just reach our fundraising target, but to obliterate it. If you are able to help us to do this here, we will be so thankful. Every pound really does help. Thank you all so much! xx

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Making 2017 All About Dad

In all honesty, the last 7 months have been a whirlwind. They have knocked me for 6 198376484! 2016 was indeed one hell of a year, but this is why 2017 WILL be better.

July of last year saw me bring my second daughter in to this world. The birth went as well as these things can, but a few problems saw us stuck in hospital for a few of days afterwards. Keen to escape and get back to a slightly different “normal”, we headed home. Anyone that has been through labour and the first few weeks of caring for a baby will know what a rollercoaster we were already on.

Just a few weeks after our daughter’s birth, I received a phonecall from Mum. Dad had been admitted to a hospice for symptom management. This call didn’t immediately concern me. Dad had been suffering with the varying and increasing symptoms associated with Parkinson’s Disease for over 20 years. Respite, hospital stays and additional care had become somewhat usual. It was only after speaking with Mum, that I knew things were worse than before.

The problem with Parkinson’s is that it is so unlike other diseases. It doesn’t affect just one area. It attacks all of you, physically, mentally. Parkinson’s affects muscular control – eventually, the muscles just can’t do what you want them to. Not just limbs, but the very essence of all movement. Blinking, talking, balance, swallowing. It was the last of these symptoms that had begun to set in.

An inability to swallow obviously means that it is very difficult to ingest foods and drinks. Not just that though, it means that saliva cannot be swallowed in a regular way, so it builds up & has nowhere to go but out. This also means that speech can be difficult if not impossible.

Nutrition and hydration can sometimes be solved by either tube feeding (through the nose/mouth) or via a peg direct to the stomach. Unfortunately for Dad, neither of these were suitable due to the severity of other symptoms and issues. So that leaves us…?! Oh.

I can’t tell you the pain & anguish involved in that kind of news.

Dad was bought a little more time with some wonderful medication that helped to halt the production of saliva. This at least meant that he could get a few words out, when he wasn’t too tired. It also meant that we were able to help him take in a little liquefied food and drink (despite his best efforts to get us to fetch him some fish and chips). He asked for ice cream and champagne a lot!

Dad was, after a few months moved to a nursing home that specialises in complex care. He was well looked after & had heaps of visitors. His chair from home was brought in for him. Though he then became bed-bound. Not once did Dad ever moan, complain or cry. He was the very essence of composure. He always was. Totally unshakeable.

On the 31st December 2016, Dad passed away, peacefully, with us all at the nursing home – though I was feeding my baby in the family room & missed his last breath by about 30 seconds – something I will eternally beat myself up over. I think & hope he knew that I was there though.

The hospice that Dad was in was St Wilfrid’s Hospice in Eastbourne. The care team there, medical, support and volunteer are just amazing. A real home from home. So warm , welcoming & supportive. It is also incredibly family friendly & peaceful. A real gem in the care sector.

One beautiful Summer’s day, my sister and I were with Dad at St. Wilfrid’s. Dad dozing in his bed, the sun streaming through the open door to the gardens. We decided that we should take on a challenge that could help us to raise money, in a way as a thanks to Dad & all those that were supporting us all.

Nic and I usually take on the moonwalk marathon in London, but we felt we needed to do something closer to home this time. We found the South Downs Challenge – a 50km hike. One of the partner charities was Parkinson’s UK. We discussed at great length whether we should fundraise for Parkinson’s UK or for the St. Wilfrid’s Hospice as they had been so good to him & us. We eventually decided to raise funds for Parkinson’s UK, as they have been working with us as a family for over 20years.

My fundraising page for the challenge can be found here and any donations to our event would be so very welcome!

However, I cannot shake the feeling that I need to do something to say thank you to St. Wilfrid’s for everything they did & the peaceful time that we had there (slightly less peaceful when my baby started to cry… sorry about that!). So, I have decided that I will personally raise money over the course of 2017.

I will be and have been measuring my daily mileage on my fitbit and for every mile I walk/run/hop/cycle/dance/crawl I will donate 10p. I seem to clock up somewhere between 3 & 5 miles in a normal day, so once the big training gets underway for our South Downs Challenge, I’ll be able to get some decent mileage under my belt and a bulging fundraiser for St. Wilfrid’s.

I’ll keep you up to date with my mileage as the year goes on & as the clock strikes midnight on New Years eve, the anniversary day of my wonderful Father’s passing, I shall tally up my total miles and convert it to a donation. I’m not asking for help on this, I’m raising it with my own feet, however, if you do ever wish to add to my pot, please let me know & I will gladly send you details on how to top up the donation fund. The hospice is absolutely worth every penny & if you have ever had need of them, you’ll already know that!

Here’s to 2017, here’s to you, Dad xxxxx

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