Spinraza (INN Neurinosen) is a drug produced and marketed by Biogen. It is the first pharmacological therapy ever to be given broad approval for use in the treatment of Spinal Muscular Atrophy (SMA).
Individuals with SMA experience a loss of motor neurons - the nerve cells responsible for the generation of impulses which produce movement in the limbs and body - in the spinal cord. This is due to a genetic defect affecting the SMN1 gene which produces the Survival Motor Neuron Protein (SMNP).
Over time, insufficient levels of SMNP lead to a decline in the number of motor neurons within the spinal cord, resulting a loss of movement, muscle weakness, and reduced function and independence. Individuals with SMA retain some movement due to the presence of a less powerful version of the SMN1 gene called SMN2 (Scientists like to keep things simple!) Spinraza, when injected directly into the central nervous system, effectively converts the less powerful SMN2 gene into SMN1, which produces normal amounts of SMNP and therefore prevents loss of motor neurons and the functional issues that come with muscle weakness in SMA. For anyone feeling confused at this point, that’s the science bit over, and the outcome is that this is ‘so far, so good’ for Spinraza as a treatment for SMA!
Therapeutic drugs have to pass through a multitude of hoops before they can be approved for license to use on actual human beings and, so far, Spinraza has managed to satisfy the criteria for safety and effectiveness. So much so that in December 2016 it was granted approval from the Food and Drug Administration in the USA for use in SMA, and additional funding incentive was provided.
An article published in the Lancet in 2016 demonstrated the effects of Spinraza on a group of SMA infants <7 months old, noting improvements in motor function and survival rates in the majority of participants (http:// thelancet.com/journals/lancet/article/PIIS01406736(16)31408-8/abstract)
Different conditions, different backgrounds and different experiences.
Monday 1 May 2017
A Drone at the NM by Mike Brown
After my FSD kicked in some fifteen years ago I lost my job in the hospital, and concentrated on my work as a professional photographer.
Many years and many weddings and portraits later, the condition was also to relieve me of that job too as the camera became too heavy to carry, and my legs did not want the workout any more. I turned to taking landscape images, as I had all the kit, and I could take my time setting up on a tripod, and perhaps do ten or twenty a day instead of a thousand. But I was also limited to where my stick or wheels could take me until along came drones. There can be hardly anyone who has not heard of them, if not seen them. But a camera drone would allow me to go where I could not with my legs, and still take the images I wanted to. It would also allow me to take my image taking to greater heights, literally.
The choosing of a drone and the legalities of it all could complete an article all on its own, so I will not go in to it here, but a chance conversation whilst at the NMC led me to photograph the building and its surrounds from the air. A “mission” as they are now popularly called, requires planning and luck. Planning what images you want to take, planning how you will take them, and of course planning around the weather. That is also where the luck comes in. The drone I have, a DJI Phantom 3Pro, will fly in winds up to around 15 knots. The lower the wind the better the pictures though. Lighting is important too. As you will see later. On top of that other things need to be checked and planned for. Is there any aerial activity nearby? Are there any power cables or trees? Are there any prohibited zones like schools or nuclear power stations?
On the day of the “mission”, the weather was very kind with patchy sun and little wind. Early fog had dissipated. However, there were a couple of problems before I could fly. The school next door firstly. They were most kind and co operative when informed about the flight , and requested an image from me. Secondly, there was a restriction on flying because of a nearby airfield, and I do not mean Speke or Manchester. I had permission to fly no higher than 120m, and always within sight.
So I trundled the drone in its converted suitcase on wheels down to the summer house, pulled up a chair and assembled it all. Yes it can all be done sitting down. Taking off from the wooden walkway
and then off to take the pictures. First the still images and then the movies. Some of the images are here, and others can be seen at https://mikeeaa6.myportfolio.com/disabledphotographer
Many years and many weddings and portraits later, the condition was also to relieve me of that job too as the camera became too heavy to carry, and my legs did not want the workout any more. I turned to taking landscape images, as I had all the kit, and I could take my time setting up on a tripod, and perhaps do ten or twenty a day instead of a thousand. But I was also limited to where my stick or wheels could take me until along came drones. There can be hardly anyone who has not heard of them, if not seen them. But a camera drone would allow me to go where I could not with my legs, and still take the images I wanted to. It would also allow me to take my image taking to greater heights, literally.
The choosing of a drone and the legalities of it all could complete an article all on its own, so I will not go in to it here, but a chance conversation whilst at the NMC led me to photograph the building and its surrounds from the air. A “mission” as they are now popularly called, requires planning and luck. Planning what images you want to take, planning how you will take them, and of course planning around the weather. That is also where the luck comes in. The drone I have, a DJI Phantom 3Pro, will fly in winds up to around 15 knots. The lower the wind the better the pictures though. Lighting is important too. As you will see later. On top of that other things need to be checked and planned for. Is there any aerial activity nearby? Are there any power cables or trees? Are there any prohibited zones like schools or nuclear power stations?
On the day of the “mission”, the weather was very kind with patchy sun and little wind. Early fog had dissipated. However, there were a couple of problems before I could fly. The school next door firstly. They were most kind and co operative when informed about the flight , and requested an image from me. Secondly, there was a restriction on flying because of a nearby airfield, and I do not mean Speke or Manchester. I had permission to fly no higher than 120m, and always within sight.
So I trundled the drone in its converted suitcase on wheels down to the summer house, pulled up a chair and assembled it all. Yes it can all be done sitting down. Taking off from the wooden walkway
and then off to take the pictures. First the still images and then the movies. Some of the images are here, and others can be seen at https://mikeeaa6.myportfolio.com/disabledphotographer
Glycogen Storage Disease (GSD) support group
People attending the NeuroMuscular Centre have numerous, but typically rare conditions. There are other focused support groups that offer something different and complimentary to the NMC. One such group is the Association for Glycogen Storage Diseases UK.
The group was formed thirty years ago in 1986 by two mothers who both had a child with a rare Glycogen Storage Disease (GSD) The group has grown over the years and has funded early research in to treatments and therapies. The Association is run, informed and supported by its members and they aim to provide a warm welcome to anyone diagnosed with a GSD including McArdles and Pompe . As with many neuromuscular conditions, the chances are they have had a long and difficult journey to diagnosis. The group has a Pompe Support Team, a group of people with Pompe who are willing to provide a listening ear or talk about common experiences. For more information visit www.agsd.org.uk.
Wins
The group was formed thirty years ago in 1986 by two mothers who both had a child with a rare Glycogen Storage Disease (GSD) The group has grown over the years and has funded early research in to treatments and therapies. The Association is run, informed and supported by its members and they aim to provide a warm welcome to anyone diagnosed with a GSD including McArdles and Pompe . As with many neuromuscular conditions, the chances are they have had a long and difficult journey to diagnosis. The group has a Pompe Support Team, a group of people with Pompe who are willing to provide a listening ear or talk about common experiences. For more information visit www.agsd.org.uk.
Wins
Assessment of Fitness to Drive by Gary Jones Centre Manager
Opening of an accredited driving assessment service for the Cheshire and Wirral region.
With increasing demand for drivers to undertake assessment of their Fitness to Drive following onset of cognitive or physical changes that could impact upon driving ability, a new accredited driving assessment service will begin operation in March 2017 to serve the Cheshire and Wirral regions.
Supported by The Department for Transport this new venture will be staffed by a team of experienced Occupational Therapists and Driving Advisers to ensure the most complete and robust assessment of cognitive, visual and physical abilities in relation to an individuals’ practical Fitness to Drive.
As an accredited member of Diving Mobility (www.Drivingmobility.org.uk), Chester Driveability is able to deliver assessments on behalf of DVLA, Motability and health professionals who are advising on the Fitness to Drive of individual patients.
Chester Driveability will be operated by The Wales Mobility and Driving Assessment Service (www.wmdas.co.uk) who have over 25 years’ experience of assessment of Fitness to Drive on behalf of DVLA, health professionals and individual service users.
With increasing demand for drivers to undertake assessment of their Fitness to Drive following onset of cognitive or physical changes that could impact upon driving ability, a new accredited driving assessment service will begin operation in March 2017 to serve the Cheshire and Wirral regions.
Supported by The Department for Transport this new venture will be staffed by a team of experienced Occupational Therapists and Driving Advisers to ensure the most complete and robust assessment of cognitive, visual and physical abilities in relation to an individuals’ practical Fitness to Drive.
As an accredited member of Diving Mobility (www.Drivingmobility.org.uk), Chester Driveability is able to deliver assessments on behalf of DVLA, Motability and health professionals who are advising on the Fitness to Drive of individual patients.
Chester Driveability will be operated by The Wales Mobility and Driving Assessment Service (www.wmdas.co.uk) who have over 25 years’ experience of assessment of Fitness to Drive on behalf of DVLA, health professionals and individual service users.
Never a Dull Moment When We Fly by Derek Garner
I have just returned from my fifth holiday in New Zealand visiting my son and his family.
I have always had problems with the transfer to and from my wheelchair to and from the aircraft seat and have suffered as a result and have always spoken to the companies at length to explain my needs with very limited success. This time I picked Qantas as a result of a website promoting wheelchair friendly travel. I spoke to Qantas staff and explained my situation and also my interest in their new Eagle hoist. At every stop on my journey I was met by staff who had obviously been told about my flight and were expecting me. I was handled with courtesy and respect and was looked after at all times.
Several staff members pointed out to me, unprompted, that they no longer used the hoist as two strong men were more efficient, which proved to be the case. Dubai was my worry after a bad experience there some years ago but they were excellent with one man allocated to my care during the time I was there. At Heathrow a special transporter machine was brought to the plane and I was moved from the plane via this machine from Term 3 to Term 5 by Gary and Omar. Brilliant. In the flight from Sydney to Heathrow on an Airbus 380 my wife and I finished up with two seats on the middle block of four the other two were unoccupied by accident or design, so my wife could lay down and have a sleep.
It was obvious to me that Qantas had told their staff at all points where I was due to be, of my disability. This is really all I have ever asked airline companies to do but Qantas actually have done it and I will use them again and would certainly recommend them.
The BA shuttle from Manchester was 90 minutes late leaving so we missed our Qantas connexion at Heathrow. Fortunately we were eventually offered a Virgin Atlantic flight to Auckland via Shanghai.
When we got to the plane my wife was told that they had found two seats together and we were put into business class. Ten hours in luxury, my how the other half live. We had a very pleasant trip I can assure you.
I have been to New Plymouth in New Zealand five times and the last leg from Auckland is in a twin prop small plane accessed from the runway. They transfer me from my chair onto the aisle chair on the runway then push me into a cage attached to a fork lift truck. They then raise the cage to the entrance of the plane and push me in. Sounds odd but it does work very well. Reverse the procedure at New Plymouth. Apart from losing both our suitcases, the flight there and back were as good as it gets if you are in a wheelchair. I can’t praise Qantas enough for their attention to detail.
Upgraded to Business class, presented with champagne and a large single malt, hoisted on a fork lift truck, lost cases, missed flights.
Never a dull moment when we fly.
I have always had problems with the transfer to and from my wheelchair to and from the aircraft seat and have suffered as a result and have always spoken to the companies at length to explain my needs with very limited success. This time I picked Qantas as a result of a website promoting wheelchair friendly travel. I spoke to Qantas staff and explained my situation and also my interest in their new Eagle hoist. At every stop on my journey I was met by staff who had obviously been told about my flight and were expecting me. I was handled with courtesy and respect and was looked after at all times.
Several staff members pointed out to me, unprompted, that they no longer used the hoist as two strong men were more efficient, which proved to be the case. Dubai was my worry after a bad experience there some years ago but they were excellent with one man allocated to my care during the time I was there. At Heathrow a special transporter machine was brought to the plane and I was moved from the plane via this machine from Term 3 to Term 5 by Gary and Omar. Brilliant. In the flight from Sydney to Heathrow on an Airbus 380 my wife and I finished up with two seats on the middle block of four the other two were unoccupied by accident or design, so my wife could lay down and have a sleep.
It was obvious to me that Qantas had told their staff at all points where I was due to be, of my disability. This is really all I have ever asked airline companies to do but Qantas actually have done it and I will use them again and would certainly recommend them.
The BA shuttle from Manchester was 90 minutes late leaving so we missed our Qantas connexion at Heathrow. Fortunately we were eventually offered a Virgin Atlantic flight to Auckland via Shanghai.
When we got to the plane my wife was told that they had found two seats together and we were put into business class. Ten hours in luxury, my how the other half live. We had a very pleasant trip I can assure you.
I have been to New Plymouth in New Zealand five times and the last leg from Auckland is in a twin prop small plane accessed from the runway. They transfer me from my chair onto the aisle chair on the runway then push me into a cage attached to a fork lift truck. They then raise the cage to the entrance of the plane and push me in. Sounds odd but it does work very well. Reverse the procedure at New Plymouth. Apart from losing both our suitcases, the flight there and back were as good as it gets if you are in a wheelchair. I can’t praise Qantas enough for their attention to detail.
Upgraded to Business class, presented with champagne and a large single malt, hoisted on a fork lift truck, lost cases, missed flights.
Never a dull moment when we fly.
Alicante Holiday August 2016 by Dawn Wilbur
Hi lovely people!
I’m Dawn…a little bit about my life with the Neuromuscular Centre which has played a major role for the past 22 years …. in a positive way, I hasten to add. I moved to Cheshire from Kent (my husband and I did not know a soul in Cheshire – scary!) and fortunately discovered the NMC - situated only 4 miles away! Lynne Groves, Gordon Styles, Woolley and Cundall family (“the originals”) soon made us feel welcome and had me organized with physiotherapy sessions (cannot express how euphoric those treatments felt considering I had not received any physiotherapy for 19 years prior!)….hydrotherapy, office work, fundraising events and incredible, lifelong, friendships soon blossomed :) with many, many more amazing friends connected to this unique, innovative centre of excellence!
Anyway, if anyone is still awake! ..…I’d like to tell you the practicalities/niceties of my holiday experience to Alicante in August 2016; from a mother of a teenager (woteva!) point of view … oh, also, forgot to mention! I use a dual controlled, powered wheelchair for mobility and hoists for transfers – here goes…
Alicante is the capital of the Costa Blanca with a mixture of historic buildings, beautiful beaches and serene harbour.
A superb shopping centre with a huge choice of fashion shops, department stores, restaurants, and bars. 90% of the Cathedral can be viewed from a chilled, seated, eye level. Santa Barbara Castle overlooks spectacular views of the City and Mediterranean Sea - accessible via a levelled tunnel and manned lift. Beaches have wooden slatted ramps for wheelchair/pushchair access and one beach has special aqua-chairs to take you in to the sea.
We stayed at a Melia Hotel TRYP Alicante Gran Sol - accessible rooms which catered for medium sized wheelchairs, lifts were not very particularly spacious, restaurant and all employees were extremely helpful when required.
MobilityEquipmentHireDirect.com T: 0800 994 9000 hired a portable hoist for hotel which was in situ on arrival.
WheelchairAccessibleHolidayTaxis.com T: 0800 622 6000 transfers ran smoothly: driver extremely helpful (took my headrest on the airplane)… dread being bobbed around in the back of a taxi like a nodding canine.
Manchester T3 changing room is at departures only (as far as I know) gate 53 around or that area. I am flying in June so I am trying to liaise with airport access team to provide a portable hoist for arrivals.
Home Farm Holiday Park Anglesey by Karen Pritchard
Set in scenic countryside on the East coast of the Isle of Anglesey. Located in a tranquil and quiet setting well away from any roads, making it extremely suitable for safe family holidays, yet only 5 minutes from several sandy beaches and stunning coastal walks.
Last year we purchased a caravan to travel on our holidays and short breaks during this year.
I have been to Home Farm a couple of times and I feel I must share this little gem of a place.
We try to locate our caravan near the disabled facilities, which are lovely and clean - the bathroom I visited, consisted of a shower area, toilet and sink. It is very spacious and very warm. They do provide a chair to sit on whilst showering but I would enquire about a sturdier chair if you require this.
On booking, I would confirm that all your needs are met. There have been times I have not done this at locations, and it’s a stress you don’t need whilst trying to enjoy your holiday.
Park Facilities
- Reception with an extensive supply of tourist literature plus a basic essentials and accessory shop
- Wifi
- Luxury award winning toilets - with free hot showers, hair dryers, separate disabled and toddlers and baby areas
- A fully equipped laundry room, with automatic washer, drier and iron
- Dish-washing sinks with free hot water.
- Electric hook-ups (16 amp)
- Safety surfaced outdoor/indoor adventure play area with TV and pool tables • Outdoor recreation and ball game area
- Tennis Court
- Pitches ranging from grass to gravel - and from basic electric to the fully serviced pitches
- Extensive off-site exercise area for dogs
- Free ice pack service
- Motorhome service station
- Park monitored CCTV system
- Secure barrier entry/exit
- Tourer storage with tow on/off facility
As a family, we enjoy the luxury of the quiet and rural setting.
New York - Here We Come by David Tucker
My wife has always wanted to go to New York, we have been to Florida but never the Big Apple.
We discussed our holidays and thought lets go for it. I have never taken a wheelchair on a plane before, but I booked my power chair on and away we went. I booked business class, and was worried about getting out of the seats. My condition is a weakening of the thighs and arms so it is difficult to rise from a sitting position. I have an up easy seat assist which I put in my power chair and I used this on the aircraft seat. It was a bit uncomfortable but I managed the 7hr journey ok.
On arrival at JFK I was met with my chair and assisted through homeland security. We had booked an adapted transfer vehicle for me and my chair, and taken to our hotel in Times Square. We were amazed at Times Square, the lights, noise etc . The accessible room in the Hilton, where we were staying was nothing special, only 1 pull down grab rail at the side of the toilet, disappointing, but I managed with my wife’s help.
The following morning we went across to the local Diner, for breakfast, wow more like
breakfast, lunch and tea all on one plate. We signed up for an open top bus tour 3 days for the price of 2. On checking this I found that most of the Buses had an automatic ramp that came out of the bus entrance for wheelchairs prams etc. This made life easy and we visited the Rockefeller Centre, Grand Central Station, and Central Park. We visited the John Lennon Memorial Strawberry Fields in Central Park, which was very moving. The tour also took us to the Empire State Building and we enjoyed the views from the top. I was advised to book the trip to the Statue Of Liberty and Ellis Island in the UK which I did and it was a good job i did as the queues for the Ferry went on for ever.
Another visit was to the Ground Zero memorial and this is a must for anyone visiting New York. We also managed to take in 3 Broadway Shows courtesy of reduced ticket prices via the half price ticket booth on Times Square. We were told to go to the front of the queue which we did and so had first pick of the shows.
We both fully enjoyed the trip, the locals were very respectful of me in my power chair and always insisted I went to the front of the “Line” as they call the queue. The only disappointment for me was that they didn’t have separate disabled toilets. They had disabled toilets, sure but these were either in the men’s or ladies, and this was a problem when I needed assistance from my wife, we had to get a security guard to stand in front of the main door and not let anyone in until we had come out.
We thoroughly enjoyed the week, the October weather was kind to us and apart from the traffic chaos everything went well despite our previous concerns and we can recommend the trip.
Where next to you might add, well we have booked a 2 week cruise in the Baltic ending up in St Petersburg in July so watch this space.
Useful Products - At Home
Hands free hairdryer stands
If you have difficulty holding a hairdryer this convenient stand holds the hairdryer steady with a flexible neck that can be adjusted to any angle from its tabletop base. An alternative version has a flexible arm and a strong sucker that can stick to your bathroom mirror.Shampoo Hair Funnel
Designed for washing hair in an upright position if you have difficulty tilting your head back.Wheelchair Umbrella
Being in a wheelchair it is easy to get caught out in a rain shower or in bright sun with no shade, but with this compact umbrella shelter is always at hand.
TP-Link Smart Plug HS100 Wi-Fi
This can be used from a smart phone or Alexa to operate lights or other appliances at home.Our thanks go to Jane Bradley and Stephen Clough for these suggestions.
Useful Websites - Days Out
Knowsley Wildflower Centre They state visitors are very welcome to bring a carer to assist them free – but to make the best of your visit, please contact them in advance www.nwc.org.uk
National Trust Their admission policy admits a necessary companion, or carer free of charge. ‘Access for All Admit One Card’ can be applied for and allows a carer free entry to support a person with a disability.
National Express Their Disabled Coachcard offers a great way to save 1/3 on standard fares to hundreds of UK towns, cities and airports. The majority of the fleet have a passenger lift, but you should contact them at least 36 hours before travelling. www.nationalexpress.com/offers/ coachcards/disabled-coachcard.aspx
Toll Concessions You may be able to pay a reduced rate or nothing at some river crossings, bridges and tunnels if you’re disabled. In most cases, you have to apply in advance to get a concession. www.gov.uk/driving-medicalconditions/toll-concessions
Rough Guide to Accessible Britain A free, online guide including over 200 inspiring ideas for worry-free days out, reviews, hints and tips by disabled visitors. Provides lots of accessibility information including disabled parking www.accessibleguide. co.uk
Bruce Trust Specially adapted canal holidays on the on the Kennet and Avon Canal, which flows through Berkshire and Wiltshire www.brucetrust.org.uk
National Trust Their admission policy admits a necessary companion, or carer free of charge. ‘Access for All Admit One Card’ can be applied for and allows a carer free entry to support a person with a disability.
National Express Their Disabled Coachcard offers a great way to save 1/3 on standard fares to hundreds of UK towns, cities and airports. The majority of the fleet have a passenger lift, but you should contact them at least 36 hours before travelling. www.nationalexpress.com/offers/ coachcards/disabled-coachcard.aspx
Toll Concessions You may be able to pay a reduced rate or nothing at some river crossings, bridges and tunnels if you’re disabled. In most cases, you have to apply in advance to get a concession. www.gov.uk/driving-medicalconditions/toll-concessions
Rough Guide to Accessible Britain A free, online guide including over 200 inspiring ideas for worry-free days out, reviews, hints and tips by disabled visitors. Provides lots of accessibility information including disabled parking www.accessibleguide. co.uk
Bruce Trust Specially adapted canal holidays on the on the Kennet and Avon Canal, which flows through Berkshire and Wiltshire www.brucetrust.org.uk
Getting Up Again by Jon Mcvey
I fall frequently, usually the fall isn’t the biggest problem for me, it’s getting up. I get around well enough using walking sticks, if a bit slow. but I don’t seem to have muscles in the right places to be of any use in getting me off the ground. This is where a clever inflating device called a Mangar Camel comes to my assistance.
Until I got my Mangar Camel, if I fell outside the only option I had was to call an ambulance. I have had to do this when I fell on the drive and was stuck and unable to get off the ground but it seemed that there should be a better solution. I am about 6’4” and none too scrawny, my wife is a lot smaller and although she is remarkably strong, lifting me is really not a feasible option.
Fortunately with the help of an occupational therapist I was able to get a Mangar Camel, although the process wasn’t straightforward as it was outside their normal purchasing practice. The Camel is basically a series of inflatable bags and a battery operated pump. It is laid out on the ground so that I can slide onto it.
The pump inflates the bags one at a time until I am raised into a sitting position. This can be inflated quite high which is an advantage as I’m tall. There is a smaller version called an Elk carried in Ambulances which does the same job, but the Camel has the advantage that it is a bit bigger and has a back support so I’m a bit steadier especially when there is one operator. Also being wider it is easier to push up from or transfer safely to my wheelchair. It is small and portable enough that it can be used anywhere in our house or drive and we can put it in the car when we go away.
Falling is literally a bit of a pain in the backside, but the important thing is to get up again. The Mangar Camel at least gives me confidence that I will be able to do this reasonably quickly and easily.
Until I got my Mangar Camel, if I fell outside the only option I had was to call an ambulance. I have had to do this when I fell on the drive and was stuck and unable to get off the ground but it seemed that there should be a better solution. I am about 6’4” and none too scrawny, my wife is a lot smaller and although she is remarkably strong, lifting me is really not a feasible option.
Fortunately with the help of an occupational therapist I was able to get a Mangar Camel, although the process wasn’t straightforward as it was outside their normal purchasing practice. The Camel is basically a series of inflatable bags and a battery operated pump. It is laid out on the ground so that I can slide onto it.
The pump inflates the bags one at a time until I am raised into a sitting position. This can be inflated quite high which is an advantage as I’m tall. There is a smaller version called an Elk carried in Ambulances which does the same job, but the Camel has the advantage that it is a bit bigger and has a back support so I’m a bit steadier especially when there is one operator. Also being wider it is easier to push up from or transfer safely to my wheelchair. It is small and portable enough that it can be used anywhere in our house or drive and we can put it in the car when we go away.
Falling is literally a bit of a pain in the backside, but the important thing is to get up again. The Mangar Camel at least gives me confidence that I will be able to do this reasonably quickly and easily.
Becoming Mr Sleek by Peter Marley
I decided to concentrate on my weight loss after my relationship ended. I also had a diabetic check up and was told that I may have to go on insulin. This made me determined to lose the weight I needed. I was 24st 12lb at the time.
To start with, I lost two stone alone with cutting out treats such as crisps. sweets, biscuits & chocolate. I was asked to go along to Slimming World to support a good friend of mine and then decided to join myself!
I joined in February 2016 weighing 22st 12lb and set a target to lose 5st with Slimming World (I reached this target within 12 months so 7st loss in all).
The support I have received from the group has been amazing! There have been some great weight losses within the group which has been an inspiration to me.
I have been voted “Young at Heart Slimmer of the Year”, “Man of the Year” and “Mr Sleek” of the group!
At the time of this interview I have lost over 7st and would like to get close to my 16st target - then I would have lost a total 9 stone!
I’m finding that I’m able to move more freely, and physio have said I have more flexibility in my legs. This has give me more confidence in myself.
To start with, I lost two stone alone with cutting out treats such as crisps. sweets, biscuits & chocolate. I was asked to go along to Slimming World to support a good friend of mine and then decided to join myself!
I joined in February 2016 weighing 22st 12lb and set a target to lose 5st with Slimming World (I reached this target within 12 months so 7st loss in all).
The support I have received from the group has been amazing! There have been some great weight losses within the group which has been an inspiration to me.
I have been voted “Young at Heart Slimmer of the Year”, “Man of the Year” and “Mr Sleek” of the group!
At the time of this interview I have lost over 7st and would like to get close to my 16st target - then I would have lost a total 9 stone!
I’m finding that I’m able to move more freely, and physio have said I have more flexibility in my legs. This has give me more confidence in myself.
Juice Diet by Mark Chapman
For the last 4 years I’ve been on a juice diet on and off. For the weeks when I’m on the juices I just have a juice for my breakfast and lunch, then soup and a sandwich for tea.
Over the 4 years I have lost 3 stone, which makes me feel so much better I no longer have to worry about how I look and my clothes fit better.
Most of the juices contain avocado, beetroot or banana as the main ingredient because that’s what fills you up. For the breakfast juice I usually have one with a banana, raspberries, blackberries and yoghurt. That’s good for breakfast as its light and it’s a good start to the day like cereal and cereal bars.
There are loads of juice recipes out there, I use a recipe book by Jason Vale who is known as the Juice Master.
My favourite juices are;
Many of the recipes contain lemon or lime, this is so that the juices stay fresh because the citric acid in the lemons and limes prevents the juice from oxidising, it also helps makes the juice taste good.
Since I’ve been doing the diet my health and well-being have improved, touching wood I haven’t had a chest infection or a bad cold in that time.
All the vitamins and minerals within the fruit and vegetables used in the juices have boosted my immune system; this with the weight loss has made me a lot more confident and happy with myself.
The juices have given me more energy. I never feel bloated because the juices are nice and light but they are still filling and you aren’t left feeling hungry. My skin and hair is healthier, it’s a lot smoother, feels and looks stronger.
Over the 4 years I have lost 3 stone, which makes me feel so much better I no longer have to worry about how I look and my clothes fit better.
Most of the juices contain avocado, beetroot or banana as the main ingredient because that’s what fills you up. For the breakfast juice I usually have one with a banana, raspberries, blackberries and yoghurt. That’s good for breakfast as its light and it’s a good start to the day like cereal and cereal bars.
There are loads of juice recipes out there, I use a recipe book by Jason Vale who is known as the Juice Master.
My favourite juices are;
- Carrot, orange and mint.
- Beetroot, blackberries, apple and lime.
- Avocado, kale, cucumber, apple and lime.
- Pear, parsnip, apple and lime.
Many of the recipes contain lemon or lime, this is so that the juices stay fresh because the citric acid in the lemons and limes prevents the juice from oxidising, it also helps makes the juice taste good.
Since I’ve been doing the diet my health and well-being have improved, touching wood I haven’t had a chest infection or a bad cold in that time.
All the vitamins and minerals within the fruit and vegetables used in the juices have boosted my immune system; this with the weight loss has made me a lot more confident and happy with myself.
The juices have given me more energy. I never feel bloated because the juices are nice and light but they are still filling and you aren’t left feeling hungry. My skin and hair is healthier, it’s a lot smoother, feels and looks stronger.
Help with your Energy Supply
Signing up with the Priority Services Register for older and disabled people available in England entitles you to a range of support such as advance notice if your supply is going to be interrupted and priority reconnection if your supply is interrupted. If they cannot connect you they will provide alternative facilities for cooking and heating if your supply is interrupted. If you own your own home you may be entitled to annual gas safety checks and they can also provide advice about being more energy-efficient.
If reading your meter is difficult they will move your meter free of charge or provide a free quarterly meter reading and if it helps copies of the bill can be sent to a relative, carer or friend. They will register you with a password protection scheme to keep you safe and protect you from cold callers. To sign up to the PSR you will need to contact your supplier. Remember if you have different suppliers for gas and electricity, you’ll need to call them both and you’ll need to register again if you change your energy supplier.
If reading your meter is difficult they will move your meter free of charge or provide a free quarterly meter reading and if it helps copies of the bill can be sent to a relative, carer or friend. They will register you with a password protection scheme to keep you safe and protect you from cold callers. To sign up to the PSR you will need to contact your supplier. Remember if you have different suppliers for gas and electricity, you’ll need to call them both and you’ll need to register again if you change your energy supplier.
NMC Titans Progress by Mark Chapman
We have been training regularly for over two months now, it’s going really well, everyone is enjoying it and developing well.
I have also enjoyed coaching the players, it has been a privilege and it is very fulfilling seeing them improve, develop and grow. Not only as players but as people as well, each week we train I have noticed a considerable increase in everyone’s confidence and in myself also. Being part of a football team also benefits everyone socially; we have all become good friends and I don’t think I just talk for myself here, but I look forward to each session. To have a catch up and banter with friends and have a kick about.
We have got eight players including myself that train regularly. Sessions consist of getting used to the wheelchairs, first by weaving in and out of cones with and without the ball. Learning to hit the ball for passing and shooting. Learning to take a touch and then hitting the ball. This is then put into practice during different drills such as; tennis, where we split in to two teams and each team works together to hit the ball over the baseline, then piggy in the middle, where we make a big circle around the hall and have to pass the ball between us trying to keep it away from the defender in the middle and then we play a game, where we work together to score against a goalkeeper.
The NMC have strong links with Manchester Metropolitan University (MMU), who have been working with the physiotherapy team for a while carrying out research on Muscular Dystrophy. Due to these connections they are letting us use their sports hall for training and have allowed us to place a storage container to store all our equipment.
Once we knew we had a place to train we started fundraising for the container and equipment, sports wheelchairs, goal posts and footballs. The fundraising went really well and we were able to order the equipment. Once we had all of this in place and we had five sports wheelchairs we could commence training and I could start coaching the players. We had our first AGM the other week, where we discussed the club moving forward.
Everything is going to plan. We plan to enter the North West championship regional league in October, which will give us a few months to be ready. We also plan to organise a few friendly matches, these matches will be our first competitively. We are in the process of getting a kit; we have decided that it will be blue with an orange stripe across. We have had discussions with MMU and we are going to have them as our shirt sponsor, to mark our thanks and gratitude for all their help. Another good thing to come out from us creating a football team is the research opportunities for Matt from MMU and his colleagues, on people with Muscular Dystrophy participating in sport, and how it has a positive effect on our health and wellbeing.
If you are interested in joining please contact Bryn bryn.edwards@nmcentre.com, James james.taubman@nmcentre.com or myself mark.chapman@nmcentre.com.
I have also enjoyed coaching the players, it has been a privilege and it is very fulfilling seeing them improve, develop and grow. Not only as players but as people as well, each week we train I have noticed a considerable increase in everyone’s confidence and in myself also. Being part of a football team also benefits everyone socially; we have all become good friends and I don’t think I just talk for myself here, but I look forward to each session. To have a catch up and banter with friends and have a kick about.
We have got eight players including myself that train regularly. Sessions consist of getting used to the wheelchairs, first by weaving in and out of cones with and without the ball. Learning to hit the ball for passing and shooting. Learning to take a touch and then hitting the ball. This is then put into practice during different drills such as; tennis, where we split in to two teams and each team works together to hit the ball over the baseline, then piggy in the middle, where we make a big circle around the hall and have to pass the ball between us trying to keep it away from the defender in the middle and then we play a game, where we work together to score against a goalkeeper.
“These are very exciting times for us and the future is looking bright!”
The NMC have strong links with Manchester Metropolitan University (MMU), who have been working with the physiotherapy team for a while carrying out research on Muscular Dystrophy. Due to these connections they are letting us use their sports hall for training and have allowed us to place a storage container to store all our equipment.
Once we knew we had a place to train we started fundraising for the container and equipment, sports wheelchairs, goal posts and footballs. The fundraising went really well and we were able to order the equipment. Once we had all of this in place and we had five sports wheelchairs we could commence training and I could start coaching the players. We had our first AGM the other week, where we discussed the club moving forward.
Everything is going to plan. We plan to enter the North West championship regional league in October, which will give us a few months to be ready. We also plan to organise a few friendly matches, these matches will be our first competitively. We are in the process of getting a kit; we have decided that it will be blue with an orange stripe across. We have had discussions with MMU and we are going to have them as our shirt sponsor, to mark our thanks and gratitude for all their help. Another good thing to come out from us creating a football team is the research opportunities for Matt from MMU and his colleagues, on people with Muscular Dystrophy participating in sport, and how it has a positive effect on our health and wellbeing.
If you are interested in joining please contact Bryn bryn.edwards@nmcentre.com, James james.taubman@nmcentre.com or myself mark.chapman@nmcentre.com.
Subscribe to:
Posts (Atom)