A blog by Boo

A blog by Boo

A blog by Boo

Random stuff that I think about

You can scroll the shelf using and keys

Its about talking IMPACT

August 12, 2011 2 Comments

So today following various conversations with various people my mind is unusually thinking about life with illness. I had a good chat yesterday with one of my favourite people from my business world. She was talking about communication and her mother at the Doctors. She said Mum makes a list and then announces she is fine. You might think that the focus should be on getting her to speak up, well yes that is one. But, I am more interested in her list. Does it contain real issues or does it contain things that even patients have got wrong. So I am asking patients to consider if something is affecting you then what is the real impact….. example 1. My medication makes me feel sick or impact driven 2. My medication makes me feel sick, I can cope with the nausea but it stops me from cooking, eating out, enjoying food and I don’t like that.
When you describe impact, everyone can feel it. When you think about impact maybe it makes you think on your own situation differently…. 3. My medication makes me feel sick, I cope with the nausea and although it stops me from cooking and going out I’m not really bothered. So if when you visit your health care teams you are talking about Nausea management when actually you understand the impact, yet you are not bothered….. why talk about it!? IMPACT driven patients…. it works for me…. it might not for you, but then it might?

Advertisements

The fear of the unknown….

August 6, 2011 1 Comment

So many of us who have a chronic condition have had to wait for a diagnosis. Months of tests, consultants, scans, and more tests. In some regard it is a comfort to know that the each step forward in the process is a step of robustness and pinpoints accuracy. On the other hand during the time it can take for some months or dare I say years the human traits of speculation and assumption can cause a dizzying riot of fear, worry, and helplessness. They say better the devil you know, and that is so so true. When you don’t know what you are fighting you don’t know what to fight it with. Invariably your imagination can create a place far worse than reality, aren’t we good at punishing ourselves. As hard as reality can be, it is simply that, real. Our actions and decisions suddenly have grounds, and clarity and focus narrows like a laser. And even if the news takes you to a very dark place, you can slowly switch enough light on to bath in acceptance, plan, and enjoy. Every day of sheer happiness, laughter, love and fulfillment is priceless, even if there are less of them in the shape you wanted than you hoped…. so I for one try my best to max out every minute, regardless. And I will keep making sure that I know my fate, so that it knows me, and bows down to my controlling actions. After all I am not about to let illness set my agenda for life. That would be wrong. Very wrong.

20110806-073423.jpg

A mother of an idea…….

August 5, 2011

We think we’ve had one…. me and her. We’ve told 2 others and then we have shrouded it all in fear that someone / some organisation will ‘rip’ it. I find it rather sad that we feel we have to protect protect protect as our first key action… but there are a lot of people out there (so I am told) who would grab it and run. But I feel it’s swell, its potential, its huge huge impact. Maybe I am wrong, maybe she and I are wrong, maybe the other 2 who went ‘OMG’ are wrong. Lets see…… we shall see…….

20110806-073549.jpg

One Swallow…. Doesn’t make it summer

August 4, 2011

Any trauma, of any magnitude, it may be hour or life changing, is impact. By it’s nature normally unexpected, likely a shock, always causing thinking in over drive, or for some, under drive as they try to slowly reverse out of life.
Our ability to deal with stuff is hugely personal, individuality at it’s rawest. And our tendency to over think kicks in. As we compare and contrast senario’s in a fruitless cycle, balance is easily dislodged. A long time ago I stopped analysing why i felt how I felt and started to get my mind into acceptance. Bingo! A magic word for me. Acceptance is the platform for me to everything else. In this place despite all I can do everything I want and more. And ok so one swallow doesn’t make a summer but it’s a bird I am happy to see.

Philip Heywood, a quiet man, a perfectionist, and one hell of a photographer

August 1, 2011 2 Comments

By day he is the astute, unnerving, project Manager at the top of his game. It take flare and precision to be responsible for integration of ‘i’ technology at one of the creakiest financial houses in the UK. By night and at the weekend, that flare and precision comes with him but this time behind the lens. Photography I am learning is about instinct and creativity but….. it is a highly technical game. Phil’s shots are crisp, pixel perfect, blow them up to the size of a house and they are robust, totally. His work, unknown to many is also on Alamny where they pass only the finest quality to their stable, and he has an incredible 1000 plus images and his ranking is up there. His latest batch from the weekend taken at The Warehouse Announcement gig….. scream quality, they represent in my opinion the finest rock band photography I have seen, and fitting too for the finest rock band. Phil goes quietly and unassumingly about his work, he is accommodating, professional hugely funny and a hell of a nice guy. I am seriously impressed, hold him in the highest regard and frankly am blown away by the standard he produces. So bravo to him…. funny thing is, he’ll never see this… he doesn’t do face book and he avoids my blog like the plague. Still I didn’t write it for him, I wrote it for me.

Trying too hard….. better then not trying at all…….

August 1, 2011

I have been accused of ‘trying too hard’ and to be patient it will come…. too hard at What? you might ask. Many things I guess, and I do many things. To someone who feels that right time is now, occasionally its a hard place to be in. Frustrating. Sometimes isolating. Always slightly disappointing. Rarely demoralizing, but rarely nonetheless.
Its not for pinpointing, its simply an observation,and always good to park words.
Its merely a consequence of wanting change, of making little waves, of well simply trying…. and it is firmly in my hands.

And how do I feel about it, well despite everything its better to try too hard than not try at all 🙂 …

The only Announcement worth making….

July 31, 2011

Its not very often I expect you can say that Berwick (Upon Tweed) was the place to be last night, and specifically the Album launch of The Warehouse Announcement, frankly anything else going on would have paled (sorry er, Mrs Philip’s?) Now I am not a music critic, I am not in the music industry, I am simply a music consumer, but I appreciate quality, talent, melody and great composition. However music is all about delivery, in the way a great story is destroyed by a poor storyteller, you need performers to make a song come alive. TWA, are 5 men who I am just getting to know a little, and they will forgive me for my impertinence here I hope. Paul, front man, show man, and maniac, has the charisma of the rock n roll god Placebo, his energy is infectious his delivery is faultless and oh he can really sing. Bob, is one of the nicest people I know. His drumming is just perfection but he is not a drummer, he is the balance with razor sharp wit and a soul that sings before he even opens his mouth. Scott is tall and handsome with a smile that no doubt his son will inherit, and break hearts with. His joy of performing is not limited to his guitar but his crazy backflips. Stephen, who’s Mum, little sister, and Nan I had the pleasure to meet, has a sparkle in his eyes. The sort that you know a huge intelligence lies behind. And finally Goldie, I know less about guitar playing than I do music, but I understand passion and I am lucky to know a lot of gifted people, enough to see that his guitar playing is frankly world class. And I mean world class.
Put that all together with high jinks, fabulous song writing, love and respect and you have something quite quite wonderful. As I and 150 others were witness too.
I was blessed to have a very special gift from TWA many moons ago, the use of Sound of Drums in a vocational video, and that song has a very special place in my heart. (www.takeoneminute.co.uk) It was therefore especially poignant last night that just before the struck the first chord, Pauls eyes locked mine for a second and he gave me a thumbs up, one which I returned. Sound of Drums will stay in me for ever and is a song that heals me every time I hear it. I am sure they don’t really know what they have given me, and I am sure that I cannot quite tell them, perhaps this will…

I am working on a project in New York with a young Dancer, its about movement and music and we have just been engaged by Mohammed Ali’s daughter, and we were invited to write her Dad, the opening is as follows::

Dear Mr. and Mrs. Muhammad Ali,
“My foot points to the floor, I feel the tension, it arc’s my body, I have to focus otherwise a tremor will come. I shut my eyes; I can feel the ground swell with sound, like a wave when it hits something magical happens….. The flood stills my shaking body and suddenly I am fluid, I am free….I am normal again. My name is Colleen I am 48 and when I dance, Parkinson’s leaves my body, and for that moment my spirit can soar….”

Colleen’s story is one of many other million stories of people with Parkinson’s who struggle as many others but don’t let this disease take over their soul, rather their soul takes over Parkinson’s. Personally to me music and dance are just like food and air for our soul, and research has proved as [article] says [quote from the article].

I wish TWA everything they dream for, and they can count on my support, such that it is, for a very long time.

I eat broad beans because I like them….

July 30, 2011

How two people deal with the same situation can be at opposite ends of the scale and yet it can still work either way. Thats the joy of mankind our uniqueness and individuality. Its what fuels my interest in people and engagement. In the same vein solutions to problems are multiple at worst its defaulting to the only ones you can think of and at best you can choose to opt for ones that suit you and your personalty the most. How I deal with Parkinson’s I find increasingly differs from most, thats neither good nor bad but I find it interesting. I don’t read anything, forums don’t work for me, I avoid groups, I don’t believe in a cure (not in my lifetime) I hate the word ‘hope’, I get frustrated at negativity and those who focus so much on their illness and not themselves. This doesn’t make me popular but its who I am.
Illness just doesn’t appeal to me. I find it dull and tedious. Why therefore would I want to spend anything but the minimum amount of time I need to with it front of mind. So I don’t. Taking my meds 3 times a day is one of the unavoidable in your face reminders, but I do that with as little fuss as possible. (I learned to take them without water so I can be discrete) Am I able to stand back from my condition because I don’t really have too many symptoms…. well you tell me my walking is badly impaired and on a really bad day I can’t go anywhere, I am slower, more confused, slightly incontinent, loosing some taste and smell, have terrible leg pain, right hand is hard to control, I forget things, I am untidy, my confidence can go ….. I would carry on but I am a victim of my own dullness. I choose however to be well, and I focus on absolute wellness. I do spend time in the PD Community but I spend as much time away from it as possible. I have projects going all the time with massive diversity, I love music, fashion, writing, photography and dance. I don’t have time for this condition so I only give it the bare minimum. So whats in my life…. joy, fun, laughter, music, friends, cooking (oh and eating) doing radio, painting,……. oh and did I mention I have Parkinson’s Disease? I nearly forgot! I was told today that Broad Beans contain natural dopamine…. and that it would be a good thing to encourage PWP to eat them. They are in season at the moment and I have been eating loads…… why? simply because I like them.

its ok….

July 30, 2011

for a number of reasons, it has to be ok. mainly because you can’t change it. so if it isn’t ok, well you’re in a bit of a sticky mess. who wants to be there for the next 25 years or so? thing is you can change your ‘status’ from mess to ok and maybe beyond, not in a flippant facebook way, but by really trying. yes trying. and I don’t mean that all smiles braver than brave happy clappy stuff, I mean some real deep proper thinking about your life. what are you going to do, what do you need, what really helps, how are you going to prepare, what shakes you up, what can you deal with. truly. it helps to know. it helps to know who you are. it helped me.
living with Parkinsons.

Intoxicated….

July 29, 2011

Compared to music, alcoholic intoxication is a primitive form of escape, if indeed it is one at all. However exotic the cocktail, my personal favorite and well documented Drambuie it’s indulgence still bypasses my soul. Something that 6 bars of the right track can never fail to do. Music swims in my head all day long, and I make no apologies for it, nor do I my sometimes unashamed love of complete cheese… some days only a real cheese medley will do. I have rituals with music; such as the complete destruction of a track through over playing or the stretch of road from home into Duns which, when alone cannot be driven without the car so filled with sound that the windows vibrate.
However what is really going on here is the way my body responds to tempo. It is not hot news that dance is a magnificent therapy, especially for those with a condition affecting your motor capabilities. I may trip stumble and ungainly arrive on to the dance floor, but once there a spell weaves its magic and I am prisoner. Such is the liberation and my feeling of normality that I am almost addicted to the lure of a beat. I dance in the kitchen, in the hall, in Tesco, in the car, in the rain …. alone, day or night…
Intoxicated, yes, lost in music, always. Happy? delirious…. come dance, come dance with me.