If you have followed my blog for any length of time, you will probably know what Progressive Supranuclear Palsy is – a rare neurological condition which Adrian’s mum, Alma, was first diagnosed with around 16 years ago.
Today Alma no longer suffers from PSP, she passed away quietly in her sleep in the early hours of this morning so she is finally at peace. Adrian has written more about it over on his blog.
Alma was rare, possibly unique, in that she survived far longer than normal life expectancy for this particular disease and over the last 16 years, we have had a lot of support from the PSP Association. We’ve also done our bit to put something back their way with fundraising in the past, and indeed we currently have a limited edition ‘Happy Birthday’ stamp with 50p from every sale going to the charity.
We will continue to support the charity in the future, but right now, in honour of Alma, I’d like to share a poster that they have produced to help raise awareness of the illness and drive their “A Million to beat PSP” campaign.
The words ‘rest in peace’ have never felt more appropriate – so Alma, once you and Derrick have finished the wild reunion party, may you both rest in eternal peace.
Yesterday was a beautiful sunny day and we headed off to Poolewe market which is on every Tuesday. We had seen a ceramics stall last week and had a good chat with Emma from Loch Broom Pottery who makes the pots. We decided that we would buy some pasta bowls from her as somehow our collection at home has dwindled over the years from the original six in the set to just two. We love the idea of supporting real artisans – I once tried to earn a living selling hand made wares and I know how difficult it can be.
Emma didn’t have exactly what we were looking for, so we have commissioned her to make our set and chosen to have them glazed in shades of blue. We won’t get them until later in the year (she’s into her busy summer season right now), but it will be a lovely reminder of the holiday when they arrive. I bought some of her huge ceramic buttons.
Not entirely sure what I will do with them all, but the smaller ones do look rather fine on my crochet flowers.
We then decided to head to a little cafe for lunch and as we walked in, Adrian smiled and said hello to a couple who were sat at a table outside. As we sat down he had a bemused look on his face and said, “that bloke outside didn’t half look like your uncle Pete”. Pete lives near Cockermouth in the Lake District which is about 350 miles away, but our family is originally Scottish so I was about to say something about genetics of the MacNichol clan probably still being around in these parts, when in walked …. my uncle Pete! He looked at Adrian and said, “I thought it was you!” Then he looked at me and did a complete double take – he hadn’t recognised me!
I haven’t seen him in over a year – I’m almost 3 stone lighter, I’ve stopped dyeing my hair and let my fringe grow out. Do I really look that different?
Maybe I do. Anyway we spent the next hour chatting and catching up, then they headed on their way further north and we went and flew kites on the fantastic beach near Mellangaun.
One of the Chocolate Baroque Design Team members, Judith, came up with the idea of Forgotten Friday a while ago and I have always thought it was a really good idea – to dig out something from your stash you have forgotten about and make a card with it.
Well tonight I was tidying up and I came across a box from my days on TV when I would go to the studio armed with dozens of prep packs to demonstrate with. This particular box was obviously from the show where we launched the Filigree Fusion and Fantasy Floral stamp sets to go with the matching CDs we already had.
It’s been a long time since I actually looked at those CDs or stamps before I knew it, I found myself stroking scraps of paper and arranging colours together. Then I remembered about Judith’s Forgotten Friday and the next thing I knew, I’d finished a card!
The background paper is from the Filigree Fusion CD and the cream and blue panel is done by stamping one of the ornate leaf designs with Adirondack Denim Dye ink, then brushing over with water to bleed the ink into the image.
Life is pretty full at the moment with family, work and teaching and I don’t seem to be getting much time for blogging. The good news is that the hospital want to get Derrick back home and are waiting for a bed to become available at the local hospital so he can get some more rehab as he can’t stand on his own two feet unaided yet. He has yet another infection, but so far is coping ok with a mild dose of antibiotics and we’re hoping it won’t get any worse.
We spent a lovely day with my Dad and some of the family last weekend. Three of my nephews were there as my sister is in the very final stages of completing a PhD and her Mum has her kids every weekend at the moment. Isn’t it great being able to hand other people’s kids back at the end of the day! Three boys aged 3 and a half, 16 months and almost 4 – it’s exhausting just watching them. My brother’s partner is expecting again in January, so family get togethers are going to get even more chaotic.
And our own little girl appears to have reached adolescence – she has had her first fight and is sporting a Zorro like scar across her sweet little face. In cat terms, that means she stood her ground, as our vet once told us. If they have battle scars on the face and neck, then they probably won the fight. If they are on the rump or tail, then they were fleeing and are definitely the losers. Which fits totally with the fact Sesame was the hard boiled one and had face, eyes and ears shredded on occasion, while Basil was always the one with bites on his tail.
I’m actually not too worried and I rather suspect that her opponent was not in fact another cat, but more likely a thorn bush of some kind. The scratch is not very deep, but shows up quite dramatically against her white fur. There’s no heat or smell and no swelling that I can see, so I’m not going to subject her to the stress of a vet trip unless it gets worse.
Right, I’m heading over to the DT blog now to announce a long overdue blog candy winner!
Sorry yesterday’s post was rather brief – I didn’t mean to sound so rude, but I really was dashing out and wanted to set off the blogging chain reaction that the Design Team had ready and waiting to go.
It has been one of “those” weeks…
We managed to arrange a break from visiting Derrick in hospital last weekend so got a bit of quality time together, though we did end up doing chores around the house and garden. However it was rudely interrupted on Monday afternoon when we got a call to say Adrian’s mum, Alma, was on her way to hospital in an ambulance! I won’t bore you with the details, but we have slight issue on our hands as this is the second time that one of the carers has called emergency services when it wasn’t really necessary. It took six hours to “process” her through A&E before she was discharged and we took her home. We ended up having beans on toast for tea at 1 o’clock in the morning!
Many of my regular readers know that Alma has a very rare neurological disorder called Progressive Supranuclear Palsy. It’s very difficult to diagnose and there are still many doctors and healthcare staff who have never heard of it or understand it properly. So in the interests of doing my bit to raise awareness, I would ask anyone reading who is involve in health or care to visit the PSP Association website and just read up on the basics – it could save someone else being misdiagnosed with something else which is a common occurrence.
Monday’s events triggered a few things and Alma ended up being re-assessed by Social Services today. They agree that she needs two carers at each visit now, which means more hours of care needed, which leads to a ‘continuing healtchare review’ thing, which means the Primary Care Trust (or whatever they are called this week) need to do a more detailed assessment (calling in the Occupational Therapist, District Nurses, Speech and Language Therapist and Dietician) to see if her care falls into nursing care and therefore the money comes from a different funding pot. Did you get all that? Have you keeled over from bewildered bored bafflement yet? Yeah, it takes real concentration (and a lot of written notes) to actually wade through the acryonyms and jargon and work out exactly what all that bafflegab actually means.
So, the practical upshot for us is that this week has been one of reacting to events, though I did manage to stick to our planned evening yesterday which was having dinner over at my sisters. She lives half an hour’s drive away and it’s ridiculous how little we have seen of each other over the years. This year we both agreed we would see more of each other and we have managed to do that and we’re getting to know each other better. (We are half-sisters and didn’t meet til we were in our twenties – long story!)
While I’m talking family – Derrick has been doing quite well for the last week or so – seemed to be recovering well from the last bout of pneumonia, but we are resigned to the idea that it’s only a matter of time before he gets it again. Sure enough, he’s feeling unwell tonight and may be coming down with it again, sigh. Here we go again, cue Post Office pre-recorded voice: “Chest Infection number seventeen please”!
I’ve said it before – we all have our crosses to bear and it is how we cope that defines us. I refuse to let this situation define me or my life. I may have to nail the smile on, re-inforce it with a hot glue gun, add a few basting stitches (and possibly add a brad), but I’m damn well determined to keep looking for the positives and find some source of happiness and delight in each and every day. And when this is all over and the grief has subsided, I may start a new career as a fairy godmother giving positive support and advice to others. This will be my motto:
Have a great weekend everyone and hope you all find at least one thing every day to smile about.