Word flies around the NMC...’What, leaving us! It must be just a rumour!’’. Sue laughs. “Well” she says “I am reaching that certain age now, and can’t be here forever! “ Sue’s role within NMC has changed tremendously over the years. She has managed to bring a whole new meaning to ‘support worker’, not just supporting people with neuromuscular conditions, but also their carers. She has the ability to listen and bring out the needs of a person in order to provide appropriate assistance, so what does she attribute this to? “ Instinct”’ she says. “I think some instincts are natural, but I think years of working at the NMC gives experience to understand what people and carers are coping with”. She has been their point of contact, bringing together help from everyone in the NMC community. “ I couldn’t do this alone.”
Sue’s great ability is to be able to think outside the box, and one of her proudest achievements is that of the Retreat. “ When people come to the NMC for the first time, they are often very worried, having been given a diagnosis which it is difficult to learn anything about. They also have to deal with a vast array of emotions - not just their own but also their families. They need somewhere to off-load, away from the Centre. It is good to have a quiet place, with beautiful grounds surrounding it. Just to sit back, take a deep breath and so face the world again.”
“I’m a very practical person, and realise that people need practical things in place in order to move forwards. This ranges from equipment and adaptations to benefits, work and volunteering, using skills they already have or learning new ones. Finding these things can be very difficult but when we work together as we have in the shed club then practical skills can be used with others who have been on the same journey.”
“The hardest part of the job?” Sue has no hesitation. “It’s losing friends and colleagues. This has a ripple effect not only on colleagues but also their families. I have to support people in a professional way but also deal with my own feelings. The emotional toll is difficult but at the Centre everyone is willing to give a bit of themselves to support others and on balance we have more laughs and positive experiences.”
So what does the future now hold for Sue? “ Well’ I’ve just moved house, so there are things to do there,” she says, “and I plan to spend more time with my family.......there’s my Mum, and my sister and of course there’s Mike and our children and grandchildren. I love art and used to print and embroider pictures in the past so it will be lovely to take this up again. I also love to travel - I’m not a beach person, but we have lots of friends in various countries around the world who we are planning to visit. I am also hoping that we will have time for ourselves”. Hm, lots of sitting around then!
Final words on the Centre? “I realised it would be difficult whenever I chose to retire, but it was important that support services would continue with a good cross-over. Denise has settled well and we have until Christmas for her to further settle. I have loved my time here and can’t imagine not working at the NMC, but I’ve not moved too far away and so will keep in touch. I’ve met some amazing people - people with this condition are some of the strongest people I know, getting on with life and so motivating me”.
Different conditions, different backgrounds and different experiences.
Showing posts with label Profiles. Show all posts
Showing posts with label Profiles. Show all posts
Monday, 30 November 2015
Steve Bebe on the Radio
Many people have said over the years that you should be on the radio. How did you get the opportunity to be on the radio? I was asked by our Community Fundraiser Amy Swatkins to join her on the “Charities Today” show on RedShift Radio to talk about the NMC, and after the show I asked the presenter about how you go about becoming a DJ on RedShift. She told me to email Liz Southall who runs the radio station. So I emailed Liz and we arranged a meeting at the station to discuss what type of show I would like to do and straight away she offered me a time slot - which was fantastic. So I went back the following week for my training which including showing me how everything works and then I went on air for a short 20 minute trial, firstly talking to her on air and then leaving me on my own for about 10 minutes to play a couple of songs and do a few links, and then after that I was told i could start my own show!
What does it involve and what do you actually do? I present a community news and music show called ‘What’s Happening with Steve Bebe’ which initially started on a Monday afternoon between 2 and 3 pm before moving to a new slot. In my first few shows I spoke about the different areas of the NMC and now I talk about upcoming fundraising events every week. I also did a spot about Nantwich Cricket Club (where i do the cricket scoring) during the cricket season, talking about the previous weekends results. I promote events going on in Crewe and Nantwich and also Redshift Radio events and other Redshift shows.
What have you learnt? I’ve learnt how a radio station works and how to set up shows with music, hub sweepers (which play over the start over an intro to a song before the vocals start) commercials and community highlight news at the top of the hour. I’ve also learnt about how to speak properly on air including remembering to give time checks and learning how to talk over songs, especially how to get the fader levels right - all very technical and very radio geeky things...Haha!!
What do you get out of it? The opportunity to finally fulfil a boyhood dream to be a radio DJ, following in the footsteps of my radio heroes like Steve Wright, Mark and Lard, Terry Wogan and Chris Moyles. It’s a lot better than playing your tape cassettes and CDs at home while talking to yourself (which is exactly what I used to do as a kid....and in recent years using my iTunes if I’m being honest...Haha!!) Also the fact that I get the opportunity to spread the word about the fabulous work that we do here at The NeuroMuscular Centre.
Has it impacted other areas of your life? Like I said above, giving me the chance to talk about the work that I do at the centre, and also promote The NMC on radio, gives me a huge sense of pride. Also it’s made me an even more confident person (and those of you that know me know I’m a very confident person)
Tell us about the new things you’re learning about radio editing and production? At the end of August, Redshift Radio relocated studios from Crewe to Nantwich and Liz asked me if I was interested in getting involved with the production and editing side of RedShift in addition to doing my radio show. I was only too happy to do so. I started doing my additional role at the end of September, editing the community news and also adding backing tracks to our new Jingles...including my own....a very proud moment.
How and when can people listen in, make requests, and how can they catch up with shows they’ve missed? Since we relocated I’ve moved my show so now I’m on air every Tuesday evening between 6 and 8pm. We are an internet station so you can listen online at www.redshiftradio.co.uk/player or you can download the RedShift Radio app for free from your mobile app store (just search for ‘RedShift Radio’). You can also find us on the ‘Tune-In Radio’ app. You can send requests to my Twitter account which is @StevenBebe or www.twitter.com/ StevenBebe or message me on Facebook www.facebook. com/steven.bebe but you may
have to add me as a friend if you’re not already. Alternatively you can call or text the RedShift studio on 01270 262 262 when I’m on air.
If you cannot catch me live, I always upload my show to Mixcloud for people to listen to the following day www. mixcloud.com/steven-bebe/ (you may have to create an account to do so, but it is free
What does it involve and what do you actually do? I present a community news and music show called ‘What’s Happening with Steve Bebe’ which initially started on a Monday afternoon between 2 and 3 pm before moving to a new slot. In my first few shows I spoke about the different areas of the NMC and now I talk about upcoming fundraising events every week. I also did a spot about Nantwich Cricket Club (where i do the cricket scoring) during the cricket season, talking about the previous weekends results. I promote events going on in Crewe and Nantwich and also Redshift Radio events and other Redshift shows.
What have you learnt? I’ve learnt how a radio station works and how to set up shows with music, hub sweepers (which play over the start over an intro to a song before the vocals start) commercials and community highlight news at the top of the hour. I’ve also learnt about how to speak properly on air including remembering to give time checks and learning how to talk over songs, especially how to get the fader levels right - all very technical and very radio geeky things...Haha!!
What do you get out of it? The opportunity to finally fulfil a boyhood dream to be a radio DJ, following in the footsteps of my radio heroes like Steve Wright, Mark and Lard, Terry Wogan and Chris Moyles. It’s a lot better than playing your tape cassettes and CDs at home while talking to yourself (which is exactly what I used to do as a kid....and in recent years using my iTunes if I’m being honest...Haha!!) Also the fact that I get the opportunity to spread the word about the fabulous work that we do here at The NeuroMuscular Centre.
Has it impacted other areas of your life? Like I said above, giving me the chance to talk about the work that I do at the centre, and also promote The NMC on radio, gives me a huge sense of pride. Also it’s made me an even more confident person (and those of you that know me know I’m a very confident person)
Tell us about the new things you’re learning about radio editing and production? At the end of August, Redshift Radio relocated studios from Crewe to Nantwich and Liz asked me if I was interested in getting involved with the production and editing side of RedShift in addition to doing my radio show. I was only too happy to do so. I started doing my additional role at the end of September, editing the community news and also adding backing tracks to our new Jingles...including my own....a very proud moment.
How and when can people listen in, make requests, and how can they catch up with shows they’ve missed? Since we relocated I’ve moved my show so now I’m on air every Tuesday evening between 6 and 8pm. We are an internet station so you can listen online at www.redshiftradio.co.uk/player or you can download the RedShift Radio app for free from your mobile app store (just search for ‘RedShift Radio’). You can also find us on the ‘Tune-In Radio’ app. You can send requests to my Twitter account which is @StevenBebe or www.twitter.com/ StevenBebe or message me on Facebook www.facebook. com/steven.bebe but you may
have to add me as a friend if you’re not already. Alternatively you can call or text the RedShift studio on 01270 262 262 when I’m on air.
If you cannot catch me live, I always upload my show to Mixcloud for people to listen to the following day www. mixcloud.com/steven-bebe/ (you may have to create an account to do so, but it is free
Award For Bob
Bob Blaney has been volunteering at the Neuromuscular Centre for almost 15 years. He is a vital member of our physio team here at the centre and has helped many people over the years. He also has a very good listening ear and is very approachable!
Bob discovered the NMC when he was a carer to Frank Carter, a physio client. At the age of 65 Bob retired and It was from that point in his life Bob asked if he could join the physio team as a volunteer. Bob volunteer’s with us on a Monday and Thursday and also helped out at our open days. Bob tells me it was his wife, a carer by profession who inspired him into a caring role and volunteering.
Lynne Groves our senior physiotherapist recently nominated Bob for the Cheshire Voluntary Service Outstanding Volunteer Support and Service Award. He was awarded this at a gala evening in the presence of his wife, members of our physio team, Lynne Groves, Paul Orme and Gill Storey. This award is a fantastic validation of Bob’s work within the NMC community. Bob speaks very highly of all his colleagues at the NMC. He would especially like to thank Lynne, Paul, Gill and Helen for all their support over the years.
Bob has received recognition for many things, throughout his life. In 2007 he was nominated for the Siemens Care and Share Team Award and was also recognized by Cheshire County Council with a certificate of commendation. He was also a Director for the Disability Resource Exchange.
A proud moment for Bob was when he was successful in nominating Frank Carter to carry the baton in the Queen’s Jubilee Baton Relay when it came through Nantwich prior to the Commonwealth Games.
Bob also felt inspired by a poem called “A Crabbit Old Woman”. A piece of poetry close to his heart.
We would like to wish Bob many congratulation’s on his award from us all here at NMC!
Well done Bob!
Bob discovered the NMC when he was a carer to Frank Carter, a physio client. At the age of 65 Bob retired and It was from that point in his life Bob asked if he could join the physio team as a volunteer. Bob volunteer’s with us on a Monday and Thursday and also helped out at our open days. Bob tells me it was his wife, a carer by profession who inspired him into a caring role and volunteering.
Lynne Groves our senior physiotherapist recently nominated Bob for the Cheshire Voluntary Service Outstanding Volunteer Support and Service Award. He was awarded this at a gala evening in the presence of his wife, members of our physio team, Lynne Groves, Paul Orme and Gill Storey. This award is a fantastic validation of Bob’s work within the NMC community. Bob speaks very highly of all his colleagues at the NMC. He would especially like to thank Lynne, Paul, Gill and Helen for all their support over the years.
Bob has received recognition for many things, throughout his life. In 2007 he was nominated for the Siemens Care and Share Team Award and was also recognized by Cheshire County Council with a certificate of commendation. He was also a Director for the Disability Resource Exchange.
A proud moment for Bob was when he was successful in nominating Frank Carter to carry the baton in the Queen’s Jubilee Baton Relay when it came through Nantwich prior to the Commonwealth Games.
Bob also felt inspired by a poem called “A Crabbit Old Woman”. A piece of poetry close to his heart.
We would like to wish Bob many congratulation’s on his award from us all here at NMC!
Well done Bob!
10 Years producing One Voice - Andrea Duckworth
After ten years and hundreds of articles, Andrea is moving to new projects. We couldn’t let Andrea go without celebrating this achievement and asking her to offer some advice for the future.
One Voice began in 2005. There was a newsletter for supporters of NMC but I felt that there was an unmet need, and that physio clients and their families could benefit from one too. Being diagnosed with muscular dystrophy or an associated neuromuscular condition can often be very isolating and frightening. The purpose of this newsletter / magazine was to share ideas and experiences of living day to day with a disability and empower people to make the most out of their lives. I felt that having a disability should not prevent you from doing this. I wanted to get people talking and sharing their life experiences. I put forward a proposal to Sarah Kelly, the Chief Executive of NMC at the time, and she loved the idea. The rest as they say was history!
I encouraged clients, carers, volunteers, staff, and in recent years the Trustees and others in the NMC community to share their experiences. Through that, we have supported each other through the good times and reassured each other through the challenging ones! It has been wonderful to see, that having contributed an article to One Voice, how much people have grown in confidence. In so many cases it has boosted their self-esteem and self-worth. We have covered so many aspects of living with a disability including, pregnancy, parenthood, transition, life in a wheelchair, accessible days to mention just a few. One Voice has also inspired clients to try new things and some have started to learn to drive, something they never thought possible. In other instances when we covered some very sensitive subjects such as depression and bereavement, it was really important to actively listen and support clients through very difficult periods in their lives. As we celebrate One Voice’s tenth birthday, and look forward to the next ten years I would like to share a recent quote that I received from a client . “Thank you for making a big difference to all of us. You have no idea just how important the magazine is, in communicating, informing, cheering us all up and reassuring us”. So that leaves me to wish the new “One Voice Team”, Jon, Karen, Sanjay , Mark and Moyra the best of luck! How did you manage to do One Voice on your own? I guess it was like having a minibusiness! It was like having to do a dissertation at University, three times a year. Roughly 12,000 words per edition. I am a driven and motivated person and saw each edition as a new opportunity. The hardest part was chasing articles if they had not met your deadline. You would ask / send gentle reminders but sometimes you had to go without them, jig things around and change the content at the last minute. It always worked out in the end! As Editor, I felt fully responsible even when we had printing and technical errors which were completely outside of my control!
What tips would you give to the new team? Talk to different types of people, be really interested in what they have to say or are doing in their lives. Be approachable and friendly and offer support to people writing their articles. Be motivated and have an ability to see the bigger picture. It is also important to cope with pressure eg. Deadlines - several articles coming in at the same time or articles not coming in, so having to find alternative material at very short notice. What was your vision for the future? I firmly believe that life is there for the taking. Yes, you might need some support from a pa , friend, family member, colleague. That enables you so that you can achieve in every aspect of your life be that in your leisure time or work time. Generally the greatest barrier is yourself. Sometimes, we are our own worst enemies. With my professional experience of disability through NMC - One Voice and Advocacy, and my personal experience through my own disability and my son’s, I am in the process of setting up my own business as a Motivational Speaker / Life Coach / Advocate. I passionately believe that anybody can achieve in all aspects of their lives, whether they have a disability or not.
I am very excited about this venture and looking forward to working with NMC on projects in 2016. A Pharmaceutical company has asked me to speak later this month in Copenhagen at one of their events. They have asked for a patient to explain how they manage day to day living with Pompe disease. I am really looking forward to this opportunity but it will also be a bit daunting talking in front of 60 medical and commercial delegates from all over the world!
I see this as the beginning of a new chapter in my life. I always like to challenge myself, and as someone recently said to me, “you will not succeed until you move outside your comfort zone”.
One Voice began in 2005. There was a newsletter for supporters of NMC but I felt that there was an unmet need, and that physio clients and their families could benefit from one too. Being diagnosed with muscular dystrophy or an associated neuromuscular condition can often be very isolating and frightening. The purpose of this newsletter / magazine was to share ideas and experiences of living day to day with a disability and empower people to make the most out of their lives. I felt that having a disability should not prevent you from doing this. I wanted to get people talking and sharing their life experiences. I put forward a proposal to Sarah Kelly, the Chief Executive of NMC at the time, and she loved the idea. The rest as they say was history!
I encouraged clients, carers, volunteers, staff, and in recent years the Trustees and others in the NMC community to share their experiences. Through that, we have supported each other through the good times and reassured each other through the challenging ones! It has been wonderful to see, that having contributed an article to One Voice, how much people have grown in confidence. In so many cases it has boosted their self-esteem and self-worth. We have covered so many aspects of living with a disability including, pregnancy, parenthood, transition, life in a wheelchair, accessible days to mention just a few. One Voice has also inspired clients to try new things and some have started to learn to drive, something they never thought possible. In other instances when we covered some very sensitive subjects such as depression and bereavement, it was really important to actively listen and support clients through very difficult periods in their lives. As we celebrate One Voice’s tenth birthday, and look forward to the next ten years I would like to share a recent quote that I received from a client . “Thank you for making a big difference to all of us. You have no idea just how important the magazine is, in communicating, informing, cheering us all up and reassuring us”. So that leaves me to wish the new “One Voice Team”, Jon, Karen, Sanjay , Mark and Moyra the best of luck! How did you manage to do One Voice on your own? I guess it was like having a minibusiness! It was like having to do a dissertation at University, three times a year. Roughly 12,000 words per edition. I am a driven and motivated person and saw each edition as a new opportunity. The hardest part was chasing articles if they had not met your deadline. You would ask / send gentle reminders but sometimes you had to go without them, jig things around and change the content at the last minute. It always worked out in the end! As Editor, I felt fully responsible even when we had printing and technical errors which were completely outside of my control!
What tips would you give to the new team? Talk to different types of people, be really interested in what they have to say or are doing in their lives. Be approachable and friendly and offer support to people writing their articles. Be motivated and have an ability to see the bigger picture. It is also important to cope with pressure eg. Deadlines - several articles coming in at the same time or articles not coming in, so having to find alternative material at very short notice. What was your vision for the future? I firmly believe that life is there for the taking. Yes, you might need some support from a pa , friend, family member, colleague. That enables you so that you can achieve in every aspect of your life be that in your leisure time or work time. Generally the greatest barrier is yourself. Sometimes, we are our own worst enemies. With my professional experience of disability through NMC - One Voice and Advocacy, and my personal experience through my own disability and my son’s, I am in the process of setting up my own business as a Motivational Speaker / Life Coach / Advocate. I passionately believe that anybody can achieve in all aspects of their lives, whether they have a disability or not.
I am very excited about this venture and looking forward to working with NMC on projects in 2016. A Pharmaceutical company has asked me to speak later this month in Copenhagen at one of their events. They have asked for a patient to explain how they manage day to day living with Pompe disease. I am really looking forward to this opportunity but it will also be a bit daunting talking in front of 60 medical and commercial delegates from all over the world!
I see this as the beginning of a new chapter in my life. I always like to challenge myself, and as someone recently said to me, “you will not succeed until you move outside your comfort zone”.
Friday, 31 July 2015
Thiara Begum
In 2006, shortly after giving birth to my son, I was diagnosed with Pompe Disease, a rare progressive metabolic disease. This led to the break-up of my marriage and depression.
In 2006, I began using a wheelchair whilst outdoors. I was also using sticks and a walking frame.
Even before the diagnosis and particularly when I was pregnant, I was struggling to climb the stairs and get up from the floor. I think I knew that something wasn’t quite right. After my son Adil was born I found things very hard both physically and mentally. I suffered from post-natal depression. Eventually I found a childminder for Adil for a few hours which gave me a break.
Over the years I have tried my best to give my son the best childhood I could, but this was not easy. As time has gone on, my health has continued to deteriorate. I never thought of myself as “normal” and I had no self-confidence at all. Day after day I would continue to fear for my future, as I knew that I would continue to get weaker.
Furthermore, I felt that because my family had been so protective of me, I had never gone out of my “comfort zone”.
I have had muscle weakness in my legs for many years and although I struggled to stand up, at one time I was able to walk holding onto things. However, I was not given the opportunity to have a go in case I fell, and instead things were done for me. I feel that this had a real impact on my health and as a result I became weaker much quicker as I was not using certain muscles.
In my opinion, sometimes, parents although well-meaning, can actually be hindering and / or making things worse.
In 2011 I came to the NMC for an assessment and I now receive regular physiotherapy and hydrotherapy which really help alleviate some of the symptoms of my condition. By 2012 I started using a wheelchair indoors as well.
In 2014, I met a lady called Sue Barker, at a fun day in my local park. Sue runs her own business under the umbrella of a local company called “Forever Living” which specialises in Aloe Vera. I was attracted to her stall and went over for a chat.
After talking to her I decided to try the products. She visited me at home and after taking the products I felt amazing. I used to have to go to bed for 2/3 hours each day. Now I don’t need to and I feel more alert, alive and active. Having benefitted from the products myself, I decided I wanted to take the opportunity to help others too.
So, with the help and support of my new husband, I now have my own Forever business and I have achieved beyond my imagination.
Thanks to Sue, I have turned my life around. I am no longer confined to four walls. My confidence and skills are growing every day and instead of fearing my future, I am looking forward to it.
Just because you have a long term condition it doesn’t mean you can’t do something.
In 2006, I began using a wheelchair whilst outdoors. I was also using sticks and a walking frame.
Even before the diagnosis and particularly when I was pregnant, I was struggling to climb the stairs and get up from the floor. I think I knew that something wasn’t quite right. After my son Adil was born I found things very hard both physically and mentally. I suffered from post-natal depression. Eventually I found a childminder for Adil for a few hours which gave me a break.
Over the years I have tried my best to give my son the best childhood I could, but this was not easy. As time has gone on, my health has continued to deteriorate. I never thought of myself as “normal” and I had no self-confidence at all. Day after day I would continue to fear for my future, as I knew that I would continue to get weaker.
Furthermore, I felt that because my family had been so protective of me, I had never gone out of my “comfort zone”.
I have had muscle weakness in my legs for many years and although I struggled to stand up, at one time I was able to walk holding onto things. However, I was not given the opportunity to have a go in case I fell, and instead things were done for me. I feel that this had a real impact on my health and as a result I became weaker much quicker as I was not using certain muscles.
In my opinion, sometimes, parents although well-meaning, can actually be hindering and / or making things worse.
In 2011 I came to the NMC for an assessment and I now receive regular physiotherapy and hydrotherapy which really help alleviate some of the symptoms of my condition. By 2012 I started using a wheelchair indoors as well.
In 2014, I met a lady called Sue Barker, at a fun day in my local park. Sue runs her own business under the umbrella of a local company called “Forever Living” which specialises in Aloe Vera. I was attracted to her stall and went over for a chat.
After talking to her I decided to try the products. She visited me at home and after taking the products I felt amazing. I used to have to go to bed for 2/3 hours each day. Now I don’t need to and I feel more alert, alive and active. Having benefitted from the products myself, I decided I wanted to take the opportunity to help others too.
So, with the help and support of my new husband, I now have my own Forever business and I have achieved beyond my imagination.
Thanks to Sue, I have turned my life around. I am no longer confined to four walls. My confidence and skills are growing every day and instead of fearing my future, I am looking forward to it.
Just because you have a long term condition it doesn’t mean you can’t do something.
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