First the talking, then the eating,
Then the descending, floor by floor,
Turn the power off, dowse the heating,
Shut the door.

Cannot stop him, he’s a jobsworth,
Solid, stolid Union type;
Only doing what he’s told to.
Musn’t gripe!

Who employed him, dreadful sentry?
Middle management for sure,
Once they make the hapless entry,
There’s no cure.

You take more of my loved one away each day,
I fill the spaces you leave empty and I stay.
I have no choice it is so unfair my strong person is no longer there,
As he disappeared so did I, becoming invisible to the human eye.
We blend together perfectly, I am him and he is  me, 
I slipped into my role as carer with ease though I often think “what about invisible me”?

I had friends and family until MND came along,
Now all I have is isolation, responsibility and trying to be strong.  
Life will never be, the same as before,
only loneliness now knocks on the door.                                                              
My needs and wants take second place because MND invaded my space.

Don’t let me cease to be seen or think I’m not there,
I want to be here I want to care.
I want to exist in your world and mine,
With you all around I know I’ll be fine.
I fade into the background of everyday life,
If you look you too will see, and I’ll no longer be invisible, even to me.

The early effects of Motor Neurone Disease can often be barely perceptible. Many people feel that it’s mad to visit their G.P. Tim Lester from Spey Bay in Aberdeenshire was enjoying a last minute deal in Egypt with his family when he first noticed mild symptoms. He remembered, “I sometimes found that my flip-flops dropped off. At the time I just dismissed it as being a problem with the footwear rather than my foot.”

Soon after returning to work, Tim started to find symptoms could strike at any time. He said, “leg cramps often occurred at work, whilst driving or even in the middle of the night. I just thought I wasn’t getting any younger and I simply needed to get fit”. He finally realised that it was time to see his G.P. and was referred for physiotherapy but it made no difference. Tim caught sight of his notes during a follow up appointment with his doctor, “I had been diagnosed with depression. Little wonder with the way I was feeling.”

In October 2006 following a stressful move to the north of Scotland, things finally came to a head. He felt exhausted and family members said he looked dreadful. So off to the G.P. he went again. Twitches in his arms and deterioration in the muscle of his left leg had begun. Tim said, “private health insurance speeded up the medical process for me. In the space of three weeks, following trips back and forth to specialists, my world fell apart. I had been diagnosed with MND.”

Not being one to sit still, Tim found out about MND Scotland and decided to raise funds for us. He has been travelling the Spey Way Challenge at his own pace, coming home to take breaks and returning back to the route to carry on. He has raised nearly £10,000 through direct donations and via his fundraising website page at www.justgiving.com/timsspeywaychallenge

Tim continued to pursue his passion for travel with trips to Egypt, Jordan, Ireland, Paris and Munich. His mobility difficulties didn’t stop him enjoying new experiences. Tim relished the freedom of movement by scuba diving for the first time in Egypt. He also found a re-kindled passion for music through a chance encounter at an Elgin drop-in centre. Tim became the drummer for ‘The Sheddies’, playing local gigs and performing traditional Scottish music.

Life was tremendously different for Tim but he seemed to be the type of person with a ‘half full glass’ attitude, “I once had too many things in the way, trapped behind a steering wheel, driving 35,000 miles a year”, he said. “Don’t try to get a hold of me now on a Wednesday morning because I’ll be sat behind my drum kit at the Moray Resource Centre enjoying myself with the band.”

Tim passed away on 30th May 2009.

John reflected on his physical deterioration and the effect it had on his freedom. His balance became worse over time and his ability to speak was severely impaired, and he became partially paralysed. John said, “During my RAF career I participated in 30 full marathons over ten years, including the London Marathon five times, Washington DC twice as part of the RAF team, Berlin, Frankfurt and being a Scot my first was Edinburgh.”

John first met apprehensively with the local MND community at the MND Christmas Lunch where he was made welcome by the late Dave Chambers, Chairman of the Perth Branch, and Stephen Lang, the donor of MND Scotland’s Lang Break Caravan. John said, “Dave amazed me. He had almost no use of muscles from the neck down yet was still in high spirits and his enthusiasm was incredible. He was my mentor. I have never looked back.”

John was stimulated to get involved in raising awareness of MND so at every opportunity he would display stickers and discs on his wheelchair , electric scooter or trike. It prompted people to stop him in the street to ask about MND including a lady whose brother was newly diagnosed with MND and did not know much about the illness.

He became chairman of the Perth Branch of MND Scotland, following in the footsteps of Dave Chambers. The branch consists of a group of volunteers committed to raise awareness and funds locally and offer one another support. John said, “It is a great group and the backbone is the ladies of the Perth shop. We are very well supported by head office. It’s a pleasure to meet others at the AGM to catch up with staff and renew acquaintances with others affected by MND in Scotland.”

John was an avid communicator. He had a laptop computer and emailed family and friends and sent jokes to head office and others with MND to lighten their mood. He also had a light-writer another electronic piece of equipment that allowed him to have conversations with others.

John had a positive outlook on what life held for him, he said, “I hope to carry on raising awareness and lead a busy life. I would like to thank Shuna my Specialist MND nurse from MND Scotland the staff at my respite centres and health and social care professionals for their support. I would not have met so many fantastic people allowing me to follow the Scottish Rugby Team at Murrayfield, compete in the Great North Run, go gliding and have days watching golf including the Open Championship.”

John is not unusual amongst many supporters of MND Scotland. He believed his diagnosis with MND did not have to inhibit his life, and he knew that people with MND can make new friends while raising awareness. He wanted people with MND to know that they do not have to be imprisoned by the illness.

John was honoured to receive an MBE for services to the Royal Air Force and to charity in 1999.

John Mackie deceased July 2009

The late Nancy Baird, from Drongan took part in an interview for Aware in 2009 which allowed readers of our official newsletter to get a taste of life with MND from the viewpoint of a sufferer.

Nancy worked at a local hairdressers for 55 years when she began to feel the ‘drop foot’ symptoms associated with Amyotrophic Lateral Sclerosis (ALS), the most common form of MND. Her doctor told her it was a trapped nerve which is a frequent misdiagnosis made by health professionals. Two years later she arrived at Ayr Hospital, unconscious in an ambulance, and immediately put on a mechanical respirator.

Nancy’s niece, Helen, vividly remembers the phone call she received. “Nancy came on the phone and asked, can you come round I’m not feeling very well. She never complains about anything” said Helen. “I knew it was serious, so I got to the house immediately and phoned for an ambulance.” When Nancy arrived at the hospital the doctor told the family that she wasn’t stabilising and gave them the choice to switch the respirator off. Helen said, “I began shouting at her to open her eyes.” Nancy laughed, “I came round and wondered why she was shouting at me.” She spent seven weeks in hospital before she was told that she had MND.

Nancy had a deep affection for Roland Preston, an intensive care nurse from Gartnavel Hospital. She said, “He made sure I got a respirator on loan, to take home when I left hospital. He pushed it through for me to get my own as soon as possible.” However, she had to wait a long time, like many people with MND in need of specialist equipment.

Nancy lived at home, with her son Ross and husband Alec, who were her carers. She used a respirator overnight and when she felt tired, but she still enjoyed an active lifestyle using her motorised wheelchair to go shopping and out for lunch. “We went caravanning for over 40 years”, said Alec. “Nancy was always the driver and our favourite breaks were in the Highlands. Ross comes with us these days and we use a modified Renault Kangoo to allow Nancy to take her wheelchair anywhere. Last year we went to the Black Isle and Oban on holiday.”

The financial and practical dilemmas associated with MND require facing a new approach to life. The family invested £6,000 on a specially made stairlift to give Nancy access to her bedroom and the toilet. However when it was installed it blocked her access to the house. Sadly a refund was not an option because the stairlift was specially made for their home, and it now sits in the shed outside. Luckily Nancy had a very resourceful and caring family. Her brother Andrew stayed a few doors away and brought in the papers and milk in the morning. She had nephews who helped build a wheelchair ramp at the front door and a modified shower downstairs.

Nancy once felt the benefit of the drug Riluzole, which is used to treat people with MND. She said, “I’m feeling OK just now, but I know that can all change. My family has been very supportive and I’m determined to still make the most of life.” At the time of writing Nancy and her family were well aware of what the future might bring, but it seemed that together with her close band of relatives, she was able to face it head on.

To share your own story, please email bryan.carroll@mndscotland.org.uk

Do something special.  What does that mean to you? To me, it means my pledge to MND Scotland for 2012.  I am already planning & hosting an Alternative Race Night & Disco at the King’s Park Hotel on 6^th October, BUT I can never resist the emails from Sara to say what is happening in the fundraising stakes.  Hence why I am swimming with sharks.  Yes you heard it right.  I’m swimming with sharks on June 23^rd, during MND Awareness week.  I think I’m mad!  Last year it was walking over hot coals at the Firewalk!

My fundraising life began in 2005, when my 81 year old Gran was diagnosed with MND, after suffering 6 months of mobility problems and not knowing what was wrong.  That day will always be with me because even though I didn’t know what MND was, I knew that it wasn’t good.  The 8 days that followed were the worst of my life, ending with me losing my wee Gran Mac.

Leanne at the Firewalk 2011, front row far right

In the year that followed I knew I wanted to do something to remember my Gran.  I finally came up with a Trivia Quiz and Disco night and no sooner that you could say Quiz, I had the venue booked, a DJ had donated his time as his father-in-law suffered from MND and I had my first prize.  I also found that I could set up a tribute fund under my Gran’s name and could add stories and photos of her and keep a record of what I raised in her name.

I raised £2000 that night.  And this set me on my MND fundraising travels.

I have since hosted another 3 charity nights and my fund is at just under £11,000.  I did set out to have a charity night every 2 years, but people just keep asking when I’m hosting my next night.  So not to let anyone down I am now hosting one a year!

Games at the first Alternative Race Night

I have learned a lot about MND over the years and I’m still saddened by the fact that they rely on public donations and fund raising to support people suffering from this devastating disease as well as those caring for them.  I just want to help anyone I can and this is what spurs me on in my fundraising.  It’s the fact I know that the money I raise is going directly to sourcing equipment, providing support to families and even giving someone a chance to go on a wee break.

I don’t fundraise to receive praise from people.  I do it to help those who were in the same position as my Gran.  No matter what you do to raise money for MND – it counts!

So go on and Do Something Special this year.  Every little bit counts to someone,  somewhere in Scotland.

You can donate to Leanne’s tribute page here: http://christina.mcinanny.muchloved.com/

If you’d like to Do Something Special this year, we’ve got more information about all our events here: http://www.mndscotland.org.uk/fundraising/new-year/

If you’d like to Swim with Sharks too, you can find out about the event here: http://www.mndscotland.org.uk/event/take-the-plunge-shark-dive/

Since 2004 we’ve operated the Lang Break caravan near St Andrews (more information here: http://www.mndscotland.org.uk/services/holiday-facilities/lang-break-caravan/) which offers a specially-adapted short break facility for those with MND and their families. 

Last year our Board of Trustees made the decision to grow this area of our operation, and we purchased a chalet at Tralee Bay Holiday Park near Oban. 

With the help of the RS Macdonald Charitable Trust, who’ve funded many projects of ours in the past, we’re currently in the process of adapting the property.  It sleeps up to 6 and it’s in a fantastic location – you can read a bit about the park and the facilities available nearby here: http://www.mndscotland.org.uk/services/holiday-facilities/tralee-bay-chalet/

Click here to view the video on YouTube.

Fully-accessible property adaptations don’t start and finish with a wheelchair ramp.  We’ve had the gravel in the car park replaced with tarmac, added a wet room (in addition to another bathroom), installed an electric ceiling hoist (with tracking that goes from the bedroom to the wet room), a shower chair, a collapsible hoist (in case you’re not comfortable with the electric one), a fully adjustable bed, a riser-recliner chair, a panic button, a Closi-mat toilet, as well as changing the width of the doors to allow wheelchairs in… it’s a fair bit of work but it’s going to be worth it.

It’s not quite finished yet, and we’ll be back here in a couple of weeks with an update.  In the meantime, we are taking bookings – and reductions are available for those affected by MND.  If you’d like any more information then drop Mairi a line – mairi.hughes@mndscotland.org.uk who’ll be able to help! 

Booking is now open at http://www.mndscotland.org.uk/services/holiday-facilities/tralee-bay-chalet/ – ring 0141 945 1077 if you’ve got any questions