Tag Archive | Parkinson’s disease

Making rainbows

Hand-sewn triangle quilt

Hand-sewn triangle quilt

I have a new quilt in progress, but this time I am sewing it by hand rather than use my sewing machine.

This has turned out to be a good idea as I can do bits and bobs during my daily commute to work on the train, and over the last few days when I have been confined to bed with a nasty sore throat and sinus infection, I have been able to pick it up for short intervals.

001

Coming together triangles and hexies

I am still experimenting with simple patterns and shapes before deciding which more detailed project to do next. As well as doing this quilt by hand, I also have my next machine-quilt material in the form of a Moda Jellyroll, ready to put together when I feel better.

This is PB&J by BasicGrey for Moda Fabrics and I can’t wait to get going on sewing the strips together.

PB&J by BasicGrey by

PB&J by BasicGrey by Moda

Crafting, including quilting, is a great hobby to have for anyone who is restricted in the level of activity they can do. Before my M.E/CFS diagnosis I would spend most of my free time forcing myself to be active; swimming, golf, heavy gardening anything physical that I could manage. I would wonder then why I ended up totally exhausted.

These days, I have different hobbies. Thankfully my 18 year old son now has his own circle of friends he can play sports with, leaving me to focus on more gentle interests. I do miss the activity.I hate being so restricted and having to turn down team-building social events after work because it means late nights. I hate having to weigh up the pros and cons of doing any activity before I make a decision but there are compensations.

My wonderful friend Colleen who has early-onset Parkinson’s Disease has a fantastic approach to dealing with her illness. For every activity she finds herself unable to do anymore as a result of the PD, she finds something else she can do. As a result she”fills the gaps” and learns lots of new skills as a result. Good on Colleen and I’m learning to adopt her approach.

Whilst my golf clubs are gathering dust in the garage and my garden is not as immaculate as I would like, I now have a new quilt on my bed, my niece’s wedding scrapbook part completed, a handmade card for any occasion and a material stash that anyone would be proud of. I love colour and apart from my garden in full bloom, nothing provides such vivid and varied colour like a craft stash!

It’s like living with a rainbow everyday.

Creative thinking

My amazing friend Colleen, whom I have known since we were ten years old, has early-onset Parkinson’s Disease (PD).  One of the things that makes her so amazing is her ability to take the negatives, work around them and find some positives. In her case, she fills the gaps left by things she can no longer do, with new things that she can do. Simples! Of course it sounds simple, and of course it isn’t but she works hard at it and not only manages her own illness  in this way, but she also shares her inspiration and positivity with others and I am one of the lucky recipients.

Colleen started drumming lessons last year as it is said to develop those parts of the brain which have become dormant and are lacking in stimulation which in turn helps to replace those parts of the brain affected by PD. It seems to be working and Colleen is now an accomplished drummer!

I have been “talking” to Colleen on Facebook this weekand she quickly gathered, quite correctly, that I was struggling. This week hasn’t been great and after a few good weeks, my sleep patterns are again disturbed, I am extremely tired and as a result my brain has become foggy, uncooperative and forgetful. My GP has increased my medication and I can only hope that this helps. I forgot my hair appointment this morning but thankfully my lovely hairdresser Paul made a space for me later in the morning. So, Colleen suggested two potential remedies for these latest setbacks.  The first task is to start drumming and the second task was to make a memo board to help me to remember things on a daily basis (I will deal with the memo board in my next post)

Drumming my way out of depression sounds like fun (a good start) and so I duly visited the music shop whilst in town this morning. I now have the name and number of a local drumming teacher. I also viewed some electronic drums. I had visions of having a proper drum set like my brother did when he was younger and keeping everyone awake at night with the incessant thump, thump, thump of the drums and crash of the cymbals every now and again and being stuck out in the garage. Apparently not, apart from a little bit of tapping, all the sound form the electronic drums comes via your headphones 🙂 Now that’s progress.

I’ve done a bit of research about drumming and depression and there is overwhelming evidence that drumming can help to lift mood, adrenalin levels and endorphins. You may say that going for a run, swimming or a game of golf will achieve the same result but as I have been diagnosed with Chronic Fatigue Syndrome, I am looking for ways of making myself and my body work and feel better without the exhausting and debilitating effects of physical exercise.

Drumming could be the answer….I’ll let you know!

drumming

I am blessed

I am truly lucky to have a small band of very loyal and thoughtful friends who seem to know the right time to appear to provide support and encouragement just when I need it, even when I don’t realise it.  It’s always nice when someone goes that extra mile to brighten the day and reinstall my faith in humanity.

This week has been a brilliant week for friends on many levels. Firstly, I discovered a fellow spirit and made a new friend on Tuesday when I met the lovely Katie. We sat and talked for quite a while over an early lunch and when I kept breaking into laughter, Katie would ask what was so amusing. What was so funny was that I could have been talking to myself. The same interests,a  similar outlook on life and shared experiences meant that I connected with this feisty, sensitive girl straight away. Even more spooky is the fact that we share a birthday. It was clearly meant to be.

Secondly, Sue came along and painted me a picture. A watercolour of my beloved orange poppies arrived through the post, beautifully framed and wrapped. Clearly a labour of love.  This is already a much treasured gift from someone I have known for a mere two months but whom I feel will be a friend for life. In the beginning I helped her realise that she isn’t on her own, and that some people really do understand. Now, the relationship has developed to such an extent that she is one of my few confidantes and being a “typical” Brummie, we get on like the proverbial house on fire. Thank you Sue.

Then, along comes the indomitable Colleen and announces that she has finally bagged her man! She is engaged to the wonderful Philip who loves her with every bone in his body. They deserve each other. They are a fantastic couple and deserve every ounce of happiness that life throws at them. For those who don’t know, Colleen has early onset Parkinson’s Disease but you would never know. She deals with this illness with immense dignity, humour and an amazing zest for life which leaves even the fittest of people breathless and exhausted. Go Colleen and I’m so looking forward to the epic party in April 2012. London Olympics? Your party will be the real place to be and the golden ticket to have next year! (Don’t forget to invite me!)

My cousin Julianne has continued to supply me with information and photos about my family which is so very welcome and is helping me to piece together the jigsaw that was my early life. This has made such a difference to me that I can’t thank her and her mum enough for spending the time in doing this. I am happier and more secure of my being as a result and it is not too dramatic to say that I feel a different person as a result of finding my family.

Nicolas continues to read my Blog and provide intelligent and sensitive comments on my posts. I truly appreciate this and again feel that although we have never met, we connect on many levels and in respect of various topics. In return, I love reading his weekly Blog which provides a quality of eloquent writing and deep understanding of his topic rarely seen in the professional arena, let alone in a Blog written as a hobby.

Judith has yet again come up trumps with her information on colour inhalation. As an alternative health practitioner she is able to tune in to my emotional state of mind without effort. She always provides simple and easy to follow alternative solutions to my agitated and confused persona and to me it all makes perfect sense. I now understand why I changed my Blog to “blue” and with a butterfly as my latest logo. Yes, I do wish to be calm and yes, I am ready for change.

So, along with Andrew, Caroline, Steve, Ian, Glen, Mand and Jenny may I take this opportunity to thank all my friends who make a difference.

XXXX

Why did I start my Blog?-Part 1

I wasn’t going to bore any more people by retelling my battles fought with depression over the last 30 years or how my life has changed dramatically in the last 8-9 months but, when confronted with this Blog topic suggested by WordPress and with my readership increasing daily, I feel it is time to put it all together so that you understand how it all started.  I hope it makes sense.

“From little acorns mighty oaks grow”

Apologies for the length of this post but if I’m going to tell you how Poppyposts was born needs must. I created Poppyposts as a result of everything that has happened in the last few months and the build-up is critical to understanding the initial purpose of my Blog.

My experience with depression started more than 30 years ago but my story doesn’t kick-off until Spring 2010 as you will see.

Last April I was lucky enough to attend a course for “talented women” run by Aspire. The course was an intensive experience and I spent two days with 19 of my colleagues being inspired, motivated and encouraged to fulfil my potential regardless of the barriers, real or perceived I felt were in my way.  Unlike some others I have never felt that being a woman, working part-time, or having children has been a barrier to my career progression. My biggest enemy was and is depression. I didn’t feel able to communicate this during the two days but I left the course with an amazing feeling of being freshly empowered with the endorsements of both the tutors and my colleagues ringing in my ears. I was truly humbled by their appraisal of me. I went into that course wondering what was missing from my life and how little me could possibly make a difference and I came out thinking I could rule the world!

To give you an idea how humbled I was here are some of the words spoken about me on the course.

Focussed, determined, driven, confident, open, strong, enthusiastic, energetic, committed, intuitive, giving, generous, a leader and a role model with a pioneering spirit.

I was advised to put all my previous concerns aside and to “Be who I am” and “Go for it”.

Having been emotionally repressed out of self-preservation for so many years I found this public outpouring of openness a little unsettling. Unbeknown to me at the time a chink had appeared in my armour and the floodgates were about to open. My defences were breached and I had no control over what was about to happen.

Soon after the course came a public holiday and I remember thinking that I was going to use that extra time to reconnect with old friends and focus on my relationships. Relationships and a strong support network are key to a happy life and I had neglected them for too many years.

Friends are the mirror reflecting the truth of who we are


Suffering with bouts of depression with mood swings, periods of self-induced solitary confinement, unpredictable behaviour and general lack of energy and interest resulted in a drop-off in the number of people I could truly call my friend. I must emphasise that this was at no time their fault or their responsibility. More, it was me feeling that I was an inadequate friend. I hadn’t the energy to help others with their problems. I couldn’t be bothered to make an effort. Sometimes getting out of bed in the morning was a major achievement.  If I couldn’t reciprocate or learn to live with my guilt therefore, then friends had to go. Some faded away gradually and some remained, understanding my quirks and foibles completely and accepting that I would help out and turn up when I felt well enough, but respected my condition so as not to put any pressure on me at times when I was more withdrawn.

A friend is one of the nicest things you can have, and one of the best things you can be

That weekend along with others,  I traced an old school friend Colleen Henderson-Heywood who I first met when we were ten years old  trying to find our feet at boarding school. It is probably one of the most significant things I have ever done. You can find out more about Colleen here, but suffice to say she is an amazing person, inspirational, creative and ready to “kick-ass” at any given opportunity! I would not be doing this today if Colleen hadn’t challenged me to get off my arse and fight back like she has done against the Parkinson’s Disease that struck 6 years ago.

Cue Janet Street-Porter (JSP). I have often admired JSP for her outspoken approach and even if I disagreed with her opinions she was at least making an impact and stimulating debate about any number of important topics. That was until she wrote her incredibly insulting article about depression in her Daily Mail column. Her article was called ” Depression? It’s just the new trendy illness!” and you can read it here although I warn you that your blood pressure may rise as a result just as mine did.

After a few days of ranting and raving to anyone who would listen, Colleen suggested that instead of wasting my energy moaning and complaining, I might care to do something more proactive.

Aha! Why didn’t I think of that?

So, after work one evening I explained to my husband that I was taking my glass of wine upstairs to write my response to JSPs article-I remember saying that “I may be gone for sometime”. Unlike Captain Oates however, I was back within 20 minutes, article written. It was there composed in my subconscious just waiting for me to put pen to paper. I didn’t have to make any amendments. It appeared as if from a magic article-writing pen.

Unfortunately, I was too late to publish my response on-line as so many complaints were received that the Daily Mail had to close their in-box. But the process of purging my thoughts onto paper had been therapeutic and calming and since then I haven’t stopped.

That was only the start of my journey culminating in Poppyposts in November  but 8 months on, I still feel like a volcano that has erupted after laying dormant for hundreds of years with an unending flow of larva pouring from my core.

Will it ever stop?

To be continued.

Inspiration for 2011

Heading into 2011, if it’s inspiration you want you need look no further than one of my best friends, Colleen Henderson-Heywood. Motivational speaker, artist, Parkinson’s Disease ambassador, rock band manager, photographer and designer and all-round fantastic person.

I have known Colleen since she was 10 years old and despite suffering what others may think of as a major “set-back”, fundamentally she hasn’t changed one bit. At the age of 47, this is testament to her resilience, determination, wonderful sense of humour and sense of humilty, creative, quirky mind and inspirational attitude towards life. We can all learn from Colleen.

Colleen has always been different and even at the age of 10  had two words seemingly tattooed across her forhead…”Kick-Ass”. The world is a much better place as a result.

Colleen was diagnosed with early-onset Parkinsons Disease 5 years ago but instead of surrendering to her illness her characteristically indomitable spirit came into its own and this uniquely talented woman set about transforming her life as well as those of her fellow Parkinson’s Disease sufferers. Colleen has achieved more in the last 5 years, than many accomplish in their whole lifetime and her positive attitude and proactive approach to life has touched so many.

How has she done this?

In many many ways but the essence of Colleen is her creativity. In an era dominated by corporate protocol, dull politicians and even duller celebrities, Colleen stands out like the Pole Star. Creativity is often underestimated and undervalued but you only have to take a look at what Colleen has achieved to realise what an impact doing things differently can make. Her attitude and approach to life is expressed in the following excerpt taken from an article Colleen wrote back in the Spring.

A bad day :: I can’t afford to loose a single day every moment is precious so when a bad day happens along I do everything I can to turn it into a good one. So I don’t sit back and let the day collapse around me I take some positive steps… I play some great music, I contact my lovely friends, I make something from nothing a cake a poem a painting.. and whatever dark forces are at play soon vanish..

Fill the gap :: My condition means I have to let go of a lot of things I used to do. This has been a big change as it has affected my lifestyle, my interests and my fun. So I decided never to leave a gap, if I loose something I simply fill it with something else… and now I have re-discovered painting, cycling and photography and its fabulous.

Zero tolerance :: I have become very focussed and find now that I don’t wait for things to happen I just do them. I have zero tolerance for ‘rubbish’. If you walk past something everyday like a plant wilting in the corner of the office just because maybe its not your plant don’t keep walking past it! Do something about it! You, the plant and its owner will welcome a bit of TLC!

I soon learned that the person who can really turn their life around using change is you! SO be bold, seize the day, say ‘I can’ and do it

Below is my beautiful picture “Spirit” painted by Colleen in May 2010.

So, just a few of Colleen’s projects which deserve a closer look;

Blog by Boo– follow Colleen’s adventures on her Blog. Inspiring, open, honest and always entertaining.

Take One Minute-A series of inspirational films on youtube.

80eight-Photography & Design (including the fabulous “Jaw-drop” Experience)

Colleen has an enviable ability to change people’s lives for the better. She is full of ideas and hope and instinctively knows how she can best live her life whilst dealing with a chronic illness.  The greatest thing however is that Colleen selflessly shares her experiences and ideas with anyone who cares to listen. So take my advice, spare a moment to have a look at her projects and I will be amazed if you don’t find something here which inspires you to help yourself or others.

Dare to be different in 2011.

It might make all the difference.

Take one Minute

Take one Minute is a series of pod casts devised by Colleen Henderson-Heywood especially for people seeking inspiration, motivation and support whilst coping with illness. Not only can you benefit from the films already made you can also film your own and send it to Colleen to publish as part of the series. Below you will find the first two videos as examples of what you will find on this truly inspirational site. So go on, take a peep, it will only Take one Minute.  

Epidode 1 “Better the Devil you know”

Episode 2 “Only one bad day”

Inspiration

If it’s inspiration you want, you surely need look no further than one of my best friends, Colleen Henderson-Heywood. Motivational speaker, artist, Parkinson’s Disease ambassador, rock band manager, photographer and designer and all-round “good egg”

I have known Colleen since she was 10 years old, and despite suffering what others may think of as a major “set-back”, fundamentally, she hasn’t changed one bit. At the age of 47, this is testament to her resilience, determination, wonderful sense of humour and sense of humilty, creative, quirky mind and inspirational attitude towards life.  Colleen has always been different and even at the age of 10  had two words seemingly tattooed across her forhead…”Kick-Ass”. The world is a much better place as a result.

Colleen was diagnosed with early-onset Parkinsons Disease 5 years ago but instead of surrendering to her illness her characteristically indomitable spirit came into its own and this uniquely talented woman set about transforming her life as well as those of her fellow Parkinson’s Disease sufferers. Colleen has achieved more in the last 5 years, than many accomplish in their whole lifetime and her positive attitude and proactive approach to life has touched so many.

How has she done this? 

In many, many ways but the essence of Colleen is her creativity. In an era dominated by corporate protocol, dull politicians and even duller celebrities, Colleen stands out like the Pole Star. Creativity is often underestimated and undervalued but you only have to take a look at what Colleen has achieved to realise what an impact doing things differently can make. Her attitude and approach to life is expressed in the following excerpt taken from an article Colleen wrote back in the Spring.

A bad day :: I can’t afford to loose a single day every moment is precious so when a bad day happens along I do everything I can to turn it into a good one. So I don’t sit back and let the day collapse around me I take some positive steps… I play some great music, I contact my lovely friends, I make something from nothing a cake a poem a painting.. and whatever dark forces are at play soon vanish..

Fill the gap :: My condition means I have to let go of a lot of things I used to do. This has been a big change as it has affected my lifestyle, my interests and my fun. So I decided never to leave a gap, if I loose something I simply fill it with something else… and now I have re-discovered painting, cycling and photography and its fabulous.

Zero tolerance :: I have become very focussed and find now that I don’t wait for things to happen I just do them. I have zero tolerance for ‘rubbish’. If you walk past something everyday like a plant wilting in the corner of the office just because maybe its not your plant don’t keep walking past it! Do something about it! You, the plant and its owner will welcome a bit of TLC!

I soon learned that the person who can really turn their life around using change is you! SO be bold, seize the day, say ‘I can’ and do it

So, a few of her projects which are well worth a closer look include;

Blog by Boo- follow Colleen’s adventures on her Blog

Take One Minute-A series of inspirational films on youtube

80eight-Photography & Design (including the fabulous “Jaw-drop” Experience)

Colleen has an enviable ability to change people’s lives for the better. She is full of ideas and hope and instinctively knows how she can best live her life whilst dealing with a chronic illness. The best thing however is that Colleen shares her experiences and ideas with anyone who cares to listen. So take my advice, spare a moment to have a look at her projects and I will be amazed if you don’t find something here which inspires you to help yourself or others.

Dare to be different.

It might make all the difference.