Staying Healthy & Active

There has been much reported over the last 12 months about how the benefits of keeping active can help improve both your health and your emotional and mental well-being.  Whether you are training for a marathon, attending a yoga class or spending a few hours gardening, being active can bring many benefits.

Age is also no limitation to the activities that you can take part in.  Many schools have introduced more physical education classes and after school clubs offering activities and those in their ‘golden years’ are taking up more activities than ever before – often so they can keep up with their grandchildren!

In the past someone with a disability, complex learning need or in need of additional support would not have been able to take part in being active, however over recent years this has changed; the Invictus Games now offers ex-serving military personnel who have been wounded in action the opportunity to complete & the awareness for the Paralympics has grown (watch out for the next Games at the end in Tokyo in 2020!  The is encouraging the next generation of sportsmen and women to pick up a javelin, put on a pair of swimming goggles or lace up a new pair of running shoes!

Why Stay Active?

Cancer Research UK reported that 4 out of 10 cases of cancer could be prevented by a change in lifestyle – that’s 135,000 lives that could be saved.  The charity Mind explains why taking up an activity can help those with mental health issues.  Many charities offering support to those that have a ‘visible’ disability report that individuals become more confident once they take up an activity, which can lead to them taking a greater responsibility for their overall well-being.

However, it’s not just about staying active.  Sometimes it can be about changing several elements of your lifestyle in order to help your physical and mental well-being.  The NHS has a great resource that gives advice and guidance on making changes across the different aspects of your life – eating well, quitting smoking, maintaining a healthy weight and taking exercise are just a few of the different areas.

There is also the social side of taking part in an activity.  We all have days when we feel our energy levels are low and we would rather sit with a good book or the TV remote control, but if a group of people are relying on you as part of an activity, then this motivation can get you out of the door and into a place of positive energy.  Meeting up with people who have a shared interest is often one of the strongest bonds outside of a family unit – it can bring you close to like-minded people who have gone through similar experiences to you and you can share your stories.

How to Stay Active

You don’t have to train for the Special Olympics or take up long-distance running as part of the England Athletics team – although you could if you wanted to!  Even the smallest of changes now can start to reap rewards in a matter of weeks.

Having a disability, whether it is visible to other people or not, may have stopped you in the past, but please don’t let it stop you in the future.  A member of the MyLiferaft team was invited to attend the National Junior Games at Stoke Mandeville Stadium last year and was amazed at the different activities that are now available and the positive, almost electric, atmosphere!

Staying Active also doesn’t have to mean you build up a sweat!  Walking and gardening have both been recognised as having great benefits to both your physical and mental well-being, and being outside is an added bonus – even with our Autumn weather approaching!  There is no sport that isn’t available to people with a disability; Some of the lower impact sports you might consider include yoga, pilates, swimming, aqua aerobics & bowls.

To pick up the pace, dancing, cycling, athletics and court-based activities are just a few of the ‘higher intensity’ activities that you can take part in and being in a wheelchair doesn’t mean you have to sit on the side lines as a spectator.  The British Wheelchair Athletic Association (BWAA) has the pentathlon as a discipline which involves completing 5 different sports and Wheelpower will put you in touch with organisations that can have you using your wheels for table-tennis, basketball, bowls, curling & rugby!  Fencing, tennis, ice-hockey, rowing, gymnastics, cricket, canoeing, archery and angling are also available so finding an activity to suit you is easier than you think!

MyLiferaft supporting Sports, Activities & Well-Being

As well as using MyLiferaft to keep a record of medical appointments, treatments and medications, you can also use it to help motivate you to stay active and healthy!

• Use our Goals to help you set sporting or physical achievements or if you are trying to lose weight, use the Goals to set up a weight loss target
• You can track your progress using our Trackers which can be personalised to match your Goals
• The Calendar allows you to set up a training schedule if you are taking part in an event
• Create a food diary in our Journal so you can monitor what you are eating and how often
• You can Share all of this information with family, friends and professionals within your care circle, so when you achieve your goals, you can tell everyone!

To try MyLiferaft now, click here.

To find out more about MyLiferaft, click here.

For more information, see our Subscriptions page.

Resources

There are now so many different organisations offering sporting opportunities and activities that it is difficult to get all the information in one place!  Below are several of the organisations that we have found that specialise in offering activities to the disabled and those with additional needs.  You can find even more in the Sports & Activity section in the MyLiferaft Resources on our website.

Challenged Athletes Foundation

Sport England 

England Athletics

British Wheelchair Athletic Association

Mencap Sport

Back to School – Tips For Parents

You will probably know already that several of the MyLiferaft team are parents and like you, are spending the last few weeks of the precious summer holidays having their children’s feet measured for new school shoes, hunting down that elusive last piece of uniform and hurriedly filling pencil cases and rucksacks!

Starting school for the first time, moving into a new class, transitioning from primary school to secondary, or secondary school to higher education, is a scary and stressful time for parents and children alike.  Will they find new friends? How will they react to new environments and new levels of authority?

In the MyLiferaft team, our children are all at different stages within the education system, but we still sit over a cup of coffee having the same worries! All these worries can be multiplied if your child has special educational needs (SEN) or a long-term condition. As parents we want to support them the best way we can and the team here recognise that, so we’ve put together a list of our favourite Top Tips that have helped us and many others along the way. We cannot promise that you won’t need extra tissues on that first day, but hopefully a few of these tips will mean less of those tissues!

Top Tips

• Make a big deal out of buying a new lunch box and water bottle. Whether it be pink, blue or has extra sparkles, if it is dishwasher proof, go with the flow.
• Are you able to get your child involved in making the packed lunch the night before so they won’t be shocked or surprised the following day? This will head off any lunchtime traumas and hopefully they will come home with a full tummy and an empty lunch box.
• Remember to pack the homework the night before or immediately before you walk out of the door if the homework is done in the morning. You do not want to go to all that effort and then leave it at home.

• Work out how much time the whole family needs in the morning. Do you and your partner need to get through the bathroom first? Work backwards from the time you need to be in the car on the way to school allowing 20 minutes each for getting changed/teeth brushing etc. and then eating breakfast. Then add another 10 minutes for back-up time in case someone is a little behind that morning.
• If the new school requires a new journey by either car or bus, this could cause stress to all involved in the school run, so try and do a couple of ‘dummy runs’ in the weeks leading up to the first day to alleviate any negative feelings.
• For children with special educational needs, the school may be able to arrange a visit for you and your child before the start date so that new classrooms etc. have a familiar feel when your child officially starts and you can note any need for specialist equipment or aids.

• Even if you take your child into the playground in the mornings, going those final few metres on their own can be daunting. If you know of another child (or parent!) who is also worried, agree to meet up a few minutes early so that the two children can walk in together. So far, one of our children has been walking in with the same friend for two years!
• Your child’s age will direct you to how much sleep they need a night, but those first few weeks at school may mean a slightly earlier bedtime whilst your child gets used to a new school routine.
• If you have any additional needs or a long-term condition, talk to the university disability advisers and have a student support plan in place.  It’s important to make the university aware of your condition – they will suggest ways they can help.
• Email each of your lecturers personally, explaining in your own words how your condition may affect their classes and what they can do to help.

MyLiferaft Resources

At MyLiferaft, we aim to give you everything you need in once place and this includes where to go for advice, information and support.  Our extensive list of resources has a specific section for going Back To School giving ideas and details of organisations to help with activities for all weathers!  We also have links through to organisations that support Parent Carers, Learning Disabilities, Accessibility, Bullying, Going Back to School, Bereavement, Mental Health, Autism, Epilepsy, School Holiday ideas, Benefit information and various NHS information websites.

You can also be part of the MyLiferaft community and receive our regular newsletter which gives you up-to-date information on health, care & well-being. Sign-up here to join our ever growing network!

About MyLiferaft

MyLiferaft is a free resource which gives a parent of a disabled child, and those who care for them, one central online place where they can add, manage and share information about health, care and well-being. Using MyLiferaft reduces the need for repetition and explanation every time someone new comes in to the care circle, helps improve consistency and is truly centered around the person and their needs.

Other benefits of MyLiferaft include:

• Telling members of your child’s care circle best way to interact you’re your child to reduce levels of stress
• Let others know how to support you and your child i.e. what are their likes and dislikes
• Set reminders so you worry less about forgetting appointments or your child taking their medication
• Try keeping track of your child’s mood so you can spot trends
• Keep a record of what works well for you and your child and what doesn’t, so you can pass this on to others within the care circle
• Set yourself and your child some goals and track how you are getting on with achieving them
• Share your goals with others so they can help you reach them
• Keep a record of meetings/consultations you have with professionals and write down what was discussed so you can refer back to it at any time or share it with others in your child’s care circle
• Share information with others e.g. doctors, family friends, social workers, therapists, teachers etc

Try our Free Account now to discover the many ways in which MyLiferaft can help

Summer Holidays!

In the infamous words of Alice Cooper…..schools out for Summer!!  No more school run, no more missing pencil cases, no more cry’s of ‘where is my sports kit / recorder / packed lunch / homework’ – tick as appropriate!

Activities

You’ve made it through the school year and now you have a long, hot (hopefully!) Summer trying to think up activities to keep everyone happy – including you!  Whether you are a working parent, or a stay-at-home parent, it pays to plan ahead if you can.  Lots of the activities we talk about are suitable for children with additional needs or learning difficulties.  Be led by your child’s imagination – and of course the weather!

MyLiferaft have a great section in their Resources for ideas and suggestions to help you through the next few weeks, however here are a few more to add to the list!

• Have a Mini-Masterchef competition and make sure you include tidying up as part of the end result!
• Create some puppets out of old socks and let the children make up a puppet show for you

• If the weather is not so great, pull the curtains, get out the pop-corn and have a movie afternoon at home
• If you have a garden, vegetable plot or allotment, get the children to help with the digging, weeding and collecting your harvest
• Use the internet to find what you have in your kitchen to make up science experiments (this one is a favourite with one of the Dad’s in the MyLiferaft team!)

Keeping Cool

Hopefully the sunshine that we experienced in June and July will continue into the school holidays….!  There have been lots of Top Tips on the television, radio and in newspapers about keeping cool, however here are a few more from the team here:

• • Half fill children’s water bottles with ice-cubes so they stay cooler for longer
  • Use freezer ice sachets in picnic and packed lunches to keep food cold if freezer blocks are too large
  • Keep sun-tan and after-sun in the fridge (this is a favourite of the team!)
  • Join your children in the paddling pool, even if you just dip your feet in! The water can also be used for watering plants, so you are even recycling as well as staying safe!
  • Fill a hot water bottle……wait for it……….with ice cubes & cold water!

MyLiferaft Resources

At MyLiferaft, we aim to give you everything you need in once place and this includes where to go for advice, information and support.  Our extensive list of resources has a specific section for School Holidays giving ideas and details of organisations to help with activities for all weathers!  We also have links through to organisations that support Parent Carers, Learning Disabilities, Accessibility, Bullying, Going Back to School, Bereavement, Mental Health, Autism, Epilepsy, School Holiday ideas, Benefit information and various NHS information websites.

You can also be part of the MyLiferaft community and receive our regular newsletter which gives you up-to-date information on health, care & well-being. Sign-up here to join our ever growing network!

What Is MyLiferaft?

MyLiferaft is a free resource which gives a parent of a disabled child, and those who care for them, one central online place where they can add, manage and share information about health, care and well-being. Using MyLiferaft reduces the need for repetition and explanation every time someone new comes in to the care circle, helps improve consistency and is truly centered around the person and their needs.

Other benefits of MyLiferaft include:

• Telling members of your child’s care circle best way to interact you’re your child to reduce levels of stress
• Let others know how to support you and your child i.e. what are their likes and dislikes
• Set reminders so you worry less about forgetting appointments or your child taking their medication
• Try keeping track of your child’s mood so you can spot trends
• Keep a record of what works well for you and your child and what doesn’t, so you can pass this on to others within the care circle
• Set yourself and your child some goals and track how you are getting on with achieving them
• Share your goals with others so they can help you reach them
• Keep a record of meetings/consultations you have with professionals and write down what was discussed so you can refer back to it at any time or share it with others in your child’s care circle
• Share information with others e.g. doctors, family friends, social workers, therapists, teachers etc

Try our Free Account now to discover the many ways in which MyLiferaft can help support those with a learning disability and their care-circle.  If you are caring for someone you can set up and manage an account for them which allows both you and them to be fully involved i.e. filling in information together can be a great way to get a conversation going.

Are you a Parent Carer?

• Are you the parent of a disabled child?
• Are you fed up with the amount of information you have to repeat to health care professionals, therapists, teachers, friends and family?
• Do you wish that all the information about your child was held in one central and secure location?

Created by a mother who answered Yes to all of the above questions, MyLiferaft came from her experiences as a parent-carer and the challenges she and her daughter faced:

• disparate information being held in different places
• constant repetition of information
• not having all health, care and well-being in one place that was accessible 24/7
• lack of transparency between all those within the care-circle

If the challenges above sound familiar and resonate with you, then MyLiferaft could help you care and support your child.

Nicola & Faith’s Story

The founder of MyLiferaft is Nicola Murgatroyd.  Her daughter Faith had Spina Bifida and Hydrocephalus so Nicola found herself in the role of a parent carer.  Together they faced an uphill struggle managing Faith`s different care needs. Not one to sit around grumbling about this, Nicola created MyLiferaft for the benefit of everyone caring, or being cared for.

`My personal experiences gave me a first-hand insight into the problems and challenges faced by people who live with a long-term condition. I realised that gaps in shared information across health and social care existed. However, there are ways to make life easier for everyone whatever their circumstances, and that`s what we have created with MyLiferaft – a tool which helps you to let others know what you want`.

Read more about Nicola and her daughter Faith in My Secret Life.

What is MyLiferaft

MyLiferaft is a free resource which gives a parent of a disabled child, and those who care for them, one central online place where they can add, manage and share information about health, care and well-being. Using MyLiferaft reduces the need for repetition and explanation every time someone new comes in to the care circle, helps improve consistency and is truly centered around the person and their needs.

Other benefits of MyLiferaft include:

• Telling members of your child’s care circle best way to interact you’re your child to reduce levels of stress
• Let others know how to support you and your child i.e. what are their likes and dislikes
• Set reminders so you worry less about forgetting appointments or your child taking their medication
• Try keeping track of your child’s mood so you can spot trends
• Keep a record of what works well for you and your child and what doesn’t, so you can pass this on to others within the care circle
• Set yourself and your child some goals and track how you are getting on with achieving them
• Share your goals with others so they can help you reach them
• Keep a record of meetings/consultations you have with professionals and write down what was discussed so you can refer back to it at any time or share it with others in your child’s care circle
• Share information with others e.g. doctors, family friends, social workers, therapists, teachers etc

Try our Free Account now to discover the many ways in which MyLiferaft can help support those with a learning disability and their care-circle.  If you are caring for someone you can set up and manage an account for them which allows both you and them to be fully involved i.e. filling in information together can be a great way to get a conversation going.

MyLiferaft Resources

At MyLiferaft, we aim to give you everything you need in once place and this includes where to go for advice, information and support.  Our extensive list of resources has a specific section for Parent Carers with links through to organisations that support Learning Disabilities, Accessibility, Bullying, Going Back to School, Bereavement, Mental Health, Autism, Epilepsy, School Holiday ideas, Benefit information and various NHS information websites.

You can also be part of the MyLiferaft community and receive our regular newsletter which gives you up-to-date information on health, care & well-being. Sign-up here to join our ever growing network!

MyLiferaft recently won the Naidex Professional Award 2019 that recognises the innovation that has made an immeasurable contribution towards the healthcare, profession both now and into the future.  (Naidex is Europe’s most comprehensive trade, professional & consumer event dedicated to independent living).

Learning Disability Week

In 2015, Mencap surveyed over 300 18 to 35-year old’s with a learning disability to find out how they felt.  Of these, 18% felt alone and cut off from people, and more time spent outside was the wish of 49% of those surveyed.

Sport and physical activity have been shown to reduce loneliness and isolation across all of society, however there are also the added benefits of improved health and well-being, great inclusion into society and empowerment for those that have a learning disability.

They are also great levelers between people with and without a learning disability in improving attitudes, blowing away stereotypes portrayed in the media and challenging negative views towards people with a learning disability.

So, whether you have a learning disability or not, if you know someone with a learning disability or not, we think the theme of Sport and Inclusion for this year’s Learning Disability Week should be embraced by everyone!

What is a Learning Disability?

The answer is that it’s different for every person who has one. But there are some things that are true for everyone with a learning disability, and some common (and not so common) conditions that will mean you have a learning disability.

A learning disability is a reduced intellectual ability and difficulty with everyday activities – for example household tasks, socialising or managing money – which affects someone for their whole life.

People with a learning disability tend to take longer to learn and may need support to develop new skills, understand complicated information and interact with other people.

The level of support someone needs depends on the individual. For example, someone with a mild learning disability may only need support with things like getting a job. However, someone with a severe or profound learning disability may need full-­time care and support with every aspect of their life – they may also have physical disabilities.

People with certain specific conditions can have a learning disability too. For example, people with Down’s syndrome and some people with autism have a learning disability.

It’s important to remember that with the right support, most people with a learning disability in the UK can lead independent lives.

How Can I Support Learning Disability Week?

If you know someone with a learning disability and you have the time (and the energy!) to take up a new activity, then find out together what activities are available to you locally.  You can also offer your support via Mencap who are encouraging as many people as possible, with and without a learning disability, to get involved in inclusive sporting activities in their local communities.

To find out what is happening around the country, click here.

You can also find out more about their other fundraising and awareness activities that include the Hyde Park 5k/10k run, their Round the World Challenge and being part of #TeamMencap for the 2020 Virgin London Marathon!

About MyLiferaft

The founder of MyLiferaft is Nicola Murgatroyd.  Her daughter Faith had Spina Bifida and Hydrocephalus so Nicola found herself in the role of a parent carer.  Together they faced an uphill struggle managing Faith`s different care needs. Not one to sit around grumbling about this, Nicola created MyLiferaft for the benefit of everyone caring, or being cared for.

`My personal experiences gave me a first-hand insight into the problems and challenges faced by people who live with a long-term condition. I realised that gaps in shared information across health and social care existed. However, there are ways to make life easier for everyone whatever their circumstances, and that`s what we have created with MyLiferaft – a tool which helps you to let others know what you want`.

Try our Free Account now to discover the many ways in which MyLiferaft can help support those with a learning disability and their care-circle.  If you are caring for someone you can set up and manage an account for them which allows both you and them to be fully involved i.e. filling in information together can be a great way to get a conversation going.  Other benefits of MyLiferaft include:

• Telling others the best way to interact to reduce your levels of stress
• Let others know how to support you, what you like and don’t like
• Set some reminders so you worry less about forgetting appointments or taking medication
• Try keeping track of your mood
• Keep a record of what works well for you and what doesn’t
• Set yourself some goals and track how you are getting on with achieving them.
• Share your goals with others so they can help you reach them.
• Taking medication? Set a reminder to take it and if you need help, taking it, ordering it, picking it up, let others know.
• Keep a record of meetings/consultations you have with professionals and write down what was discussed so you can refer back to it at any time or share it with others.
• Share information with others e.g. your doctor, family friends

MyLiferaft are excited to be supporting Learning Disability Week and are offering the first 100 carers that sign up for our Newsletter, a FREE Premium Account for life!  Visit our website and type the keyword LEARNING into the comments box.

MyLiferaft Resources

At MyLiferaft, we aim to give you everything you need in once place and this includes where to go for advice, information and support.  Our extensive list of resources has a specific section for those with learning disabilities with links through to organisations such as Mencap, The HF Trust & Scope.  There is also a full list of resources on a wide range of topics including Bereavement, Mental Health, Autism, Epilepsy, Alzheimer’s & Dementia, Benefit information, Bullying, Going Back to School and various NHS information websites.

Click here to see our full list of Resources.

Carers Week

If you ‘look after’ someone, do you see yourself as a carer?  If the answer is No, then reading the following may change your outlook – a carer is someone who provides unpaid care and support to a family member or friend who has a disability, mental or physical illness, substance misuse issue, or who needs extra help as they grow older.

Did you know:

• There are around 6.5 million carers in the UK – that is one in ten people.
• Three in five people will be carers at some point in their lives in the UK.
• Out of the UK’s carers, 42% of carers are men and 58% are women.
• The economic value of the contribution made by carers in the UK is £132bn a year.
• 68% of young carers are bullied in schools.
• On average, young carers missed 48 school days because of their caring role.
• Many services are only funded to work with young carers up to the age of 18.

What is Carers Week?

Carers Week is an annual campaign to raise awareness of caring, highlight the challenges carers face and recognise the contribution they make to families and communities throughout the UK.

The campaign is brought to life by thousands of individuals and organisations who come together to organise activities and events throughout the UK, drawing attention to just how important caring is.

The focus for this Carers Week is to help and support carers to stay Healthy and Connected as the impact on caring for someone should never be under estimated.  Caring can be a hugely rewarding experience, but sometimes carers find it challenging to take care of their own well-being whilst caring.  So, this Carers Week is looking to share examples of good practice from supporters who have helped carers to stay Healthy and Connected.

To find out more, click here.

How Can I Help?

The team at Carers Week would like you to pledge your support for carers around the UK by recognising and celebrating the huge amount of work that carers do every day.  Whether you are an individual, an organisation, a carer, someone from the within the health care profession or even a politician, click here to shout about your pledge.

About MyLiferaft

The founder of MyLiferaft is Nicola Murgatroyd.  Her daughter Faith had Spina Bifida and Hydrocephalus so Nicola found herself in the role of a parent carer.  Together they faced an uphill struggle managing Faith`s different care needs. Not one to sit around grumbling about this, Nicola created MyLiferaft for the benefit of everyone caring, or being cared for.

`My personal experiences gave me a first-hand insight into the problems and challenges faced by people who live with a long-term condition. I realised that gaps in shared information across health and social care existed. However, there are ways to make life easier for everyone whatever their circumstances, and that`s what we have created with MyLiferaft – a tool which helps you to let others know what you want`.

MyLiferaft Supporting Carers

MyLiferaft is a free resource which gives an individual and those who care for them one central online place where they can add, manage and share information about health, care and well-being. Using MyLiferaft reduces the need for repetition and explanation every time someone new comes in to the care circle, helps improve consistency and is truly centered around the person and their needs.

Try our Free Account now to discover the many ways in which MyLiferaft can help support you and those that care for you.  If you are caring for someone you can set up and manage an account for them which allows both you and them to be fully involved i.e. filling in information together can be a great way to get a conversation going.  Other benefits of MyLiferaft include:

• Telling others the best way to interact to reduce your levels of stress.
• Let others know how to support you, what you like and don’t like.
• Set some reminders so you worry less about forgetting appointments or taking medication.
• Try keeping track of your mood.
• Keep a record of what works well for you and what doesn’t.
• Set yourself some goals and track how you are getting on with achieving them.

• Share your goals with others so they can help you reach them.
• Taking medication? Set a reminder to take it and if you need help, taking it, ordering it, picking it up, let others know.
• Keep a record of meetings/consultations you have with professionals and write down what was discussed so you can refer back to it at any time or share it with others.
• Share information with others e.g. your doctor, family friends.

MyLiferaft are thrilled to be supporting Carers Week this year and are offering the first 100 carers that sign up for our Newsletter, a FREE Premium Account for a year.  Visit our website and type the keyword CarersWeek into the message box & tick ‘Allow MyLiferaft to contact me’.

MyLiferaft Resources

At MyLiferaft, we aim to give you everything you need in once place and this includes where to go for advice, information and support.  Our extensive list of resources has a specific section for those that care for someone with links through to organisations such as the Carers Week, Carers UK and Carers Trust.  There is also a full list of resources on a wide range of topics including Bullying, Going Back to School, Bereavement, Mental Health, Autism, Epilepsy, Alzheimer’s & Dementia, Benefit information and various NHS information websites.

Click here to see our full list of Resources.

Dementia Action Week

Many of us worry about ‘saying the wrong thing’ to someone with dementia, yet a friendly face or listening ear can make the world of difference.  This Dementia Action Week, the Alzheimer’s Society are encouraging everyone to take action by starting a conversation – young or old, friend or family, over a cup of coffee or during a car journey on the way to somewhere – it’s time to start talking!

Becoming a dementia friend this week simply means learning more about dementia, putting yourself in the shoes of someone living with the condition and turning your understanding into action.  Start that conversation today and Ask Us Anything!

One of the most common questions that is asked in varying ways is ‘what is the difference between dementia and Alzheimer’s’ disease’.  To put it simply, dementia is not a disease in its own right.  Dementia is the name for a group of symptoms that commonly include problems with memory, thinking, problem solving, language and perception.  Dementia is caused by different diseases that affect the brain.

Some other common types of dementia include vascular dementia and dementia with Lewy bodies.  While there is a relationship between dementia and Alzheimer’s disease, there are key differences between the two.

What is dementia?

When a person receives a dementia diagnosis, they should also learn what type of dementia they have.  This is not always the case, and sometimes the term ‘dementia’ is used to describe the symptoms they may be experiencing. These symptoms might include memory loss or difficulties with language or concentration.

Dementia is caused by diseases which damage the brain by causing a loss of nerve cells.  Alzheimer’s disease is one specific cause of dementia (and the most common).  Some other causes of dementia include:

• Vascular dementia – where a lack of oxygen to the brain causes nerve cells to die. This can be caused by a stroke, a series of mini strokes or a disease of the small blood vessels in the brain.
• Mixed dementia – where someone has more than one type of dementia and a mix of symptoms.
• Dementia with Lewy bodies – where abnormal structures (know as Lewy bodies) form in the brain and cause the death of nerve cells.
• Frontotemporal dementia – where clumps of abnormal protein form in front and to the side parts of the brain and cause the death of nerve cells.

The symptoms that someone with dementia experiences depends on the damaged parts of the brain and the disease causing the dementia.  Dementia is progressive which means it will get worse over time.

What is Alzheimer’s disease?

Alzheimer’s disease is a physical disease that affects the brain.  Abnormal structures called ‘plaques’ and ‘tangles’ build up inside the brain. These disrupt how nerve cells work and communicate with each other, and eventually cause them to die. There is also a shortage of some important chemicals in the brain of someone with Alzheimer’s disease. Reduced levels of these chemicals mean that messages don’t travel around as well as they should.

Alzheimer’s disease is the most common cause of dementia and usually begins gradually with mild memory loss. The person may have difficulty recalling recent events or learning new information. Other symptoms may include difficulties finding the right words, solving problems, making decisions, or perceiving things in three dimensions.

As Alzheimer’s progresses, problems with memory loss, communication, reasoning and orientation become more severe.  The person will need more day-to-day support from those who care for them.

There is currently no cure for Alzheimer’s disease.  However, treatments may temporarily ease some symptoms or slow down their progression in some people.

Can I help a family member or a friend with dementia?

YES!  Whether you are a full-time carer for a someone with dementia or you are part of a larger care-circle, there are lots of different ways you can help a friend or loved-one that has dementia.  Start by having a conversation and don’t forget to Ask Us Anything!

Being a full-time carer can be a rewarding experience, but it can often feel lonely, tiring and as though you are never doing enough.  These feelings are all normal and are felt by most carers at one time or another.  The Alzheimer’s Society has a great resource on their website offering advice, guidance and real-life stories.  They also talk about looking after yourself as well as the person you care for and if you are experiencing feelings of guilt, how to manage those feelings.

Dementia affects people in different ways and research is continuing on how best to support everyone, however it has been recognised that the following does bring comfort (and a smile!) to those with dementia and those supporting them!

• Looking at old photographs of people and places can sometimes jog a memory.
• Listening to music together and if you can remember the words, sing!
• Playing with sensory items such as blankets, beads and certain toys.
• If you have a child or young person in your family, involve them in a conversation with the person who has dementia; the outcome is often unexpected, but joyous!
• Being outdoors whether it’s pottering in the garden or going to a ‘safe place’ such as a local garden centre or park.

MyLiferaft Supporting Dementia

MyLiferaft is a free resource which gives an individual and those who support them one central online place where they can add, manage and share information about health, care and well-being.  Using MyLiferaft reduces the need for repetition and explanation every time someone new comes into the care circle, helps improve consistency and is truly centered around the person and their needs.

• Try our Free Account now to discover the many ways in which MyLiferaft can help support you and those who support you.  If you are caring for someone with dementia you can set up and manage an account for them,  but they can be fully involved and filling in information together can be a great way to get a conversation going.  Add details about yourself that will help others understand you, maybe share a bit about your life, jobs, family, childhood.
• Tell others the best way to interact to reduce your levels of stress
• Let others know how to support you, what you like and don’t like.
• Set some reminders so you worry less about forgetting appointments or taking medication
• Try keeping track of your mood

• Keep a record of what works well for you and what doesn’t.
• Set yourself some goals and track how you are getting on with achieving them.
• Share your goals with others so they can help you reach them.
• Taking medication?  Set a reminder to take it and if you need help taking it, ordering it or picking it up, then let others know.
• Keep a record of meetings and consultations you have with professionals and write down what was discussed so you can refer back to it at any time or share it with others.
• Share information with others e.g. your doctor, family friends.

MyLiferaft Resources

At MyLiferaft, we aim to give you everything you need in once place and this includes where to go for advice, information and support.  Our extensive list of resources has a specific section for those with dementia with links through to organisations such as the Alzheimer’s Society, Dementia UK and Dementia Action.  There is also a full list of resources on a wide range of topics including Bullying, Going Back to School, Bereavement, Mental Health, Autism, Epilepsy, Benefit information and various NHS information websites.

Click here to see our full list of Resources.

Epilepsy Awareness Week 2019

Today marks the start of Epilepsy Awareness Week with activities going on around the country raising awareness and funds for research.  Approximately 600,000 people in the UK have epilepsy and 87 people every day will be diagnosed with it (Epilepsy Action).  Did you know that St Valentine is the patron saint of epilepsy and that Roman Emperor Julius Caesar and the artist Vincent Van Gogh had epilepsy?!

What is Epilepsy?

Epilepsy is a condition that affects the brain. When someone has epilepsy, it means they have a tendency to have epileptic seizures.  Anyone can have a one-off seizure, but this doesn’t always mean they have epilepsy. Epilepsy is usually only diagnosed if someone has had more than one seizure, and doctors think it is likely they could have more.  Epilepsy can start at any age and there are many different types. Some types of epilepsy last for a limited time and the person eventually stops having seizures. But for many people epilepsy is a life-long condition.

What are Epileptic Seizures?

Electrical activity is happening in our brain all the time, as the cells in the brain send messages to each other. A seizure happens when there is a sudden burst of intense electrical activity in the brain. This causes a temporary disruption to the way the brain normally works. The result is an epileptic seizure.

There are many different types of seizure. What happens to someone during a seizure depends on which part of their brain is affected. During some types of seizure the person may remain alert and aware of what’s going on around them, and with other types they may lose awareness. They may have unusual sensations, feelings or movements. Or they may go stiff, fall to the floor and jerk.  For more on the different types of seizures, see the Epilepsy Action website

What Causes Epilepsy?

Sometimes, doctors can find a clear cause for a person’s epilepsy. Possible causes of epilepsy include:

• Stroke
• A brain infection, such as meningitis
• Severe head injury
• Problems during birth which caused the baby to get less oxygen

However, in over half of all people with epilepsy, doctors don’t know what caused it. Some may have a family history of epilepsy, suggesting that they may have inherited it. Scientists are trying to find out more about how epilepsy might be inherited.

The main way doctors diagnose epilepsy is by taking a detailed description of the seizures. They may also arrange for some tests to help give them more information about the possible type and cause of the epilepsy. This can also help rule out any other conditions that could be causing seizures. These tests can include blood tests, an EEG (recording of the brainwaves) and brain scans. But there isn’t a single test that can prove if someone does or does not have epilepsy.

Can Epilepsy be Treated?

The main treatment for epilepsy is epilepsy medicines. These are sometimes called anti-epileptic drugs or AEDs. The medicine doesn’t cure epilepsy but helps to stop or reduce the number of seizures.  If epilepsy medicine doesn’t work well for someone, their doctor might suggest other types of treatment – these can include brain surgery, another type of surgery called vagus nerve stimulation, and a special diet called the ketogenic diet which is sometimes used for children.

How can MyLiferaft help?

Within MyLiferaft there are many features to support collection of information that can help those with epilepsy and those looking after them.

• Add a diagnosis of epilepsy.
• Describe each different type of seizure experienced.
• Use the seizure tracker to record each seizure, using notes to give more detailed information.
• Keep a record of all tests and the results.
• Keep a record of all consultations and what was discussed.

Sharing the information with health, care professionals will help ensure individualized treatment and care options can be developed.

For more information on MyLiferaft and to try a free Standard Account, click here.

• Create a goal related to reducing seizure frequency.
• Share information with your doctor, family friends.
• Add medications including emergency meds.

MyLiferaft Resources

At MyLiferaft, we aim to give you everything you need in once place and this includes where to go for advice, information and support.  Our extensive list of resources has a specific section for those with epilepsy with links through to organisations such as the Young Epilepsy, Epilepsy Society and Epilepsy Research.  There is also a full list of resources on a wide range of topics including Bullying, Going Back to School, Bereavement, Dementia, Autism, Mental Health, Alzheimer’s, Benefit information and various NHS information websites.

Click here to see our full list of Resources.

World Mental Health Day

Being mentally healthy doesn’t just mean that you don’t have a mental health problem.  If you’re in good mental health, you can:

• make the most of your potential
• cope with life
• play a full part in your family, workplace, community and among friends.

Some people call mental health ‘emotional health’ or ‘well-being’ and it’s just as important as good physical health.  Mental health is everyone’s business. We all have times when we feel down or stressed or frightened. Most of the time those feelings pass. But sometimes they develop into a more serious problem and that could happen to any one of us.

Self-Care; Looking after YOU

Everyone is different and your mental health doesn’t always stay the same. It can change as circumstances change and as you move through different stages of your life.

There’s a stigma attached to mental health problems. This means that people feel uncomfortable about them and don’t talk about them much. Many people don’t even feel comfortable talking about their feelings. But it’s healthy to know and say how you’re feeling.

Good mental health is not simply the absence of diagnosable mental health problems, although good mental health is likely to help protect against development of many such problems. Good mental health is characterised by a person’s ability to fulfill a number of key functions and activities, including:

• the ability to learn
• the ability to feel, express and manage a range of positive and negative emotions
• the ability to form and maintain good relationships with others
• the ability to cope with and manage change and uncertainty

It’s important to take care of yourself and get the most from life. Below are 10 practical ways to look after your mental health. Making simple changes to how you live doesn’t need to cost a fortune or take up loads of time. Anyone can follow this advice. Why not start today?

• Talk about your feelings
• Keep active
• Eat well
• Drink sensibly
• Keep in touch with friends & family

• Ask for help
• Take a break
• Do something you are good at
• Accept who you are
• Care for others

Every Mind Matters

A brand new initiative has been launched this week from Public Health England and the NHS, in conjunction with several mental health charities, called Every Mind Matters.  It’s aim is to help people take simple steps to look after their mental health, improve their mental well-being and support others.  You can find out more about this initiative here.

MyLiferaft Supporting Mental Health

MyLiferaft is a free resource which gives an individual and those who support them, one central online place where they can add, manage and share information about health, care and well-being. Using MyLiferaft reduces the need for repetition and explanation every time someone new comes on board, helps improve consistency and is truly centered around the person and their needs.

Try our Free Account now to discover the many ways in which MyLiferaft can help support your mental health.

• Add in details that will help others understand you and your world
• Tell others the best way to interact to reduce your levels of stress
• Let others know how to help you if you are feeling stressed
• Try keeping track of your mood
• Keep a record of what works well for you and what doesn’t
• Set yourself some goals and monitor progress

• Share your goals with others who can help you achieve them.
• Taking medication? Keep a track and include if you need support to manage your medication
• In education and need extra support? Document this in the education section and monitor progress
• Keep a record of all meetings with professionals and track what was discussed
• Share information with others e.g. your doctor, family friends, school

MyLiferaft Resources

At MyLiferaft, we aim to give you everything you need in once place and this includes where to go for advice, information and support.  Our extensive list of resources has a specific section for those with mental health with links through to organisations such as the Mental Health Foundation, Every Mind Matters, MIND and the Samaritans.  There is also a full list of resources on a wide range of topics including Bullying, Going Back to School, Bereavement, Dementia, Autism, Epilepsy, Alzheimer’s, Benefit information and various NHS information websites.

Click here to see our full list of Resources.