Living With Spina Bifida

Spina bifida affects the entire family. Meeting the complex needs of a person affected by spina bifida involves the whole family and can be challenging at times. However, finding resources, knowing what to expect, and planning for the future can help. I'm sure it could be very challenging but rewarding at the same time, don't be afraid to ask for help from any of the great groups out there, a friend introduced me to Shine, a charity for Spine Bifida, seems to be a great resource you can find it on facebook as well as it's website.

Learning about Spina Bifida

When parents find out they are going to have a child with spina bifida, it can be overwhelming. It’s important that they know that most children born with spina bifida reach their full potential.

It is very important for parents to take an active role in managing their child’s care. Parents need to know about spina bifida and understand the health issues and treatment options to make the best possible choices for the health and happiness of their child.

Parents should talk with a health care provider about any questions or concerns they have.

Parents can start learning about spina bifida by reading CDC’s Facts and Health Issues and Treatments spina bifida pages.

The Spina Bifida Association provides information on spina bifida, and can be helpful in recommending clinics or health care providers who are experts in the care of children and adults with Spina Bifida

Physical Health―What to Expect

No two babies with spina bifida are exactly alike. Health issues will be different for each baby. Some babies have issues that are more severe than other babies. With the right care, babies born with spina bifida will grow up to reach their full potential.

Open Spina Bifida

When a baby is born with open spina bifida, in which the spinal cord is exposed (myelomeningocele), doctors will perform surgery to close it before birth or within the first few days of the baby’s life.

Hydrocephalus

Many babies born with spina bifida get hydrocephalus (often called water on the brain). This means that there is extra fluid in and around the brain. The extra fluid can cause the spaces in the brain, called ventricles, to become too large and the head can swell. Hydrocephalus needs to be followed closely and treated properly to prevent brain injury.

If a baby with spina bifida has hydrocephalus, a surgeon can put in a shunt. A shunt is a small hollow tube that will help drain the fluid from the baby’s brain and protect it from too much pressure. Additional surgery might be needed to change the shunt as the child grows up or if it becomes clogged or infected.

For more information, please visit the Spina Bifida Association website:

Hydrocephalus and Shunts in the Person with Spina Bifida

Mobility and Physical Activity

People affected by spina bifida get around in different ways. These include walking without any aids or assistance; walking with braces, crutches or walkers; and using wheelchairs.

People with spina bifida higher on the spine (near the head) might have paralyzed legs and use wheelchairs. Those with spina bifida lower on the spine (near the hips) might have more use of their legs and use crutches, braces, or walkers, or they might be able to walk without these devices.

Doctors can start treatment for movement problems soon after a baby with spina bifida is born. A physical therapist can work with parents and caregivers to teach them how to exercise a baby’s legs to increase strength, flexibility, and movement.

Regular physical activity is important for all babies, especially for those with conditions that affect movement, such as spina bifida. There are many ways for babies with spina bifida to be active. For example, they can:

Play with toys, such as activity mats.

Enjoy parks and recreation areas.

Participate in community programs, such as the Early Intervention Program for Infants and Toddlers with Disabilities, which is a free program in many communities.

Do exercises recommended by a physical therapist.

Babies with spina bifida can develop sores, calluses, blisters, and burns on their feet, ankles, and hips. Parents and caregivers can help protect the baby’s skin by:

Checking the baby’s skin regularly for redness, including under braces.

Trying to avoid hot bath water, hot irons and hot or unpadded seatbelt clasps that may cause burns.

Making sure the baby doesn’t stay out in the sun too long.

Making sure the baby is not sitting or lying in one position for too long.

Latex (Natural Rubber) Allergy

Many babies with spina bifida are allergic to products that contain latex, or natural rubber. This means they should not use items made of natural rubber. For babies, this would include rubber nipples and pacifiers. The baby can wear a bracelet to alert other people of the allergy. Parents and caregivers should discuss this with their baby’s health care providers.

Health Checks

Every baby needs a primary health care provider (for example, a pediatrician, family doctor, or nurse practitioner). The primary health care provider will want to make sure that the baby is healthy; developing normally; and receiving immunization against diseases and infections, including the flu.

In addition to seeing a primary health care provider, shortly after birth the baby will be checked and treated as needed by doctors who specialize in different parts of the body. These doctors might suggest treatments or surgeries to help the baby.

These specialists might include:

An orthopedist, who will work with the baby’s muscles and bones.

A urologist, who will check the baby’s kidneys and bladder.

A neurosurgeon, who will check the baby’s brain and spine.

Finding Support

Having support and community resources can help increase confidence in managing spina bifida, enhance quality of life, and assist in meeting the needs of all family members. It might be helpful for parents of children with spina bifida to talk with one another. One parent might have learned how to address some of the same concerns another parent has. Often, parents of children with special needs can give advice about good resources for these children.

Remember that the choices of one family might not be best for another family, so it’s important that parents understand all options and discuss them with their child’s health care providers.

A Spina Bifida Association (SBA) Chapter is a great place to connect with other families. The SBA website can provide information on how to find a local chapter.

The Spina Bifida Association Parents ListServ bring people together online to discuss topics such as parenting a child with spina bifida and growing up with spina bifida.

National Resource Center: Get information and find clinics or health care providers who are experts in spina bifida.

Preparations Website: Resource about becoming an Adult Living Successfully with Spina Bifida

Life with a toddler or preschooler is both fun and challenging. These young children experience huge mental, social, and emotional changes. They have a lot of energy and enthusiasm for exploring and learning about their world and becoming independent. Developing independence can be especially challenging for children with spina bifida. Parents should start helping their child develop independence early in childhood.

Encouraging Independence

For toddlers and preschoolers with spina bifida, there are many ways that parents and other caregivers can help them become more active and independent, such as:

Teaching the child about his or her body and about spina bifida.

Encouraging the child to make choices, such as between two items of clothing.

Asking the child to help with daily tasks, such as putting away toys.

Children with spina bifida might need extra help at times. But it is very important that children be given the opportunity to complete a task before help is given. It is also important that parents give only the help that is needed rather than helping with the entire task. Parents must learn the difficult balance between giving the right amount of help to increase their child’s independence and confidence, while at the same time not giving the child tasks that cannot reasonably be completed―which might decrease their child’s confidence.

Starting school brings children into regular contact with the larger world. Friendships become important and physical, social, and mental skills develop rapidly during this time. Children who feel good about themselves are more able to resist negative peer pressure and make better choices.

This is an important time for children to become more responsible and independent. This is also a good time to start exploring potential lifetime interests such as hobbies, music, or sports. Developing independence can be challenging for people affected by spina bifida. It is important to begin working on this process early in childhood.

School

Many children with spina bifida do well in school. But some can experience difficulties at school, especially children with shunts that are used to treat hydrocephalus (often called water on the brain). These children often have problems with learning. They might have difficulty paying attention or work slowly, be restless, or lose things. They also might have trouble making decisions. There are activities that children can do both at home and at school to help with these problems. Healthcare professionals can provide information about these activities.

Individualized Education Plan (IEP)

An Individualized Education Plan is important because it will help children develop skills at school. Children who participate in special education classes will have an IEP. An IEP is a legal document that lets the school know what kinds of assistance will be needed by a child during the school day. An IEP is created by parents and school personnel, such as a psychologist, teachers, a school nurse, and a physical education teacher, as well as any other professionals that parents think might be helpful.

504 Plan

If a child does not qualify for an IEP, parents can request a 504 Plan be developed for their child at school. Usually, a 504 Plan is used by a general education student who is not eligible for special education services. By law, children may be eligible to have a 504 Plan which lists accommodations related to a child’s disability. The 504 Plan accommodations may be needed to give the child an opportunity to perform at the same level as their peers. For example, a 504 Plan may include the child’s assistive technology needs, such as a tape recorder or keyboard for taking notes and a wheelchair accessible environment.

Many physical, mental, emotional, and social changes are associated with the adolescent and teen years. Teens and adolescents develop their own personalities and interests and want to become more independent.

This transition period can be challenging, especially for people affected by spina bifida. It is important for the parents and caregivers of adolescents and teens with spina bifida to take active steps toward making them independent starting in childhood, so that by the time they are older they can develop the necessary skills to help them reach their full potential.

Physical Health

As people with spina bifida mature, they will perform more and more activities themselves. Most teens will dress and bathe themselves, manage their bathroom plans, and move about independently in their homes and communities. They might begin to make their own doctor appointments and continue to participate in updating their own Individualized Education Plan (IEP) or 504 Plan, if they have one. They also should participate in a seating or wheelchair evaluation at least once each year if they use a wheelchair. This will help the wheelchair to fit better and make moving about easier.

Mobility and Physical Activity

People with spina bifida higher on the spine (near the head) might have paralyzed legs and use wheelchairs. Those with spina bifida lower on the spine (near the hips) might have more use of their legs and use crutches, braces, or walkers, or they might be able to walk without these devices.

A physical therapist can work with adolescents and teens to teach them how to exercise their legs to increase strength, flexibility, and movement.

Regular physical activity is important for all teens and adolescents, but especially for those with conditions that affect movement, such as spina bifida. CDC recommends 60 minutes of physical activity a day. There are many ways for teens and adolescents with spina bifida to be active. For example, they can:

Engage in physical activities with friends.

Roll or walk in the neighborhood.

Lift weights.

Participate in sports activities (for example, swimming) and on teams for people with and those without disabilities.

Attend summer camps and recreational facilities that are accessible for those with disabilities.

The transition from adolescence to adulthood can be a time of growth and success, as well as difficulty. For people with spina bifida, it is especially important to begin planning for transitions in childhood so they are able to lead independent lives as adults.

Young adults affected by spina bifida can face challenges, such as:

Learning to take care of their own health needs.

Working.

Going to school.

Volunteering.

Finding and using transportation.

Living outside their parents’ home.

Developing healthy relationships.

Young adults with spina bifida can provide or manage much of their own care. Some examples include:

Finding new doctors that care for adults affected by spina bifida.

Obtaining medical insurance if they are no longer covered under their parents’ health plan.

Talking to health care professionals about their condition.

Making doctor appointments.

Ordering or reordering medications and supplies.

Seeking immediate medical help when needed.

Managing their own bathroom plan

Physical Activity

Regular physical activity is important for all people, but especially for those with conditions that affect movement, such as spina bifida. CDC recommends 60 minutes of physical activity a day. There are many ways for people with spina bifida to be active. For example, they can:

Roll or walk in the neighborhood.

Lift weights.

Participate in sports activities (for example, swimming) and teams for people with or those without disabilities.

Living With Hearing Loss

Some May think being in a wheelchair or missing a limb one of the worst forms of disability, but for me losing my hearing is high up on my list, as music is for me a way to not think of pain, or hearing a bird song or a babies cry. 

Most who can hear don't even think of deafness or partial hearing as a disability, as people who are don't seem to let it ruin their lives or hold them back in any way.

In our world there are many things to help, signing, lip reading as well as hearing aids and lots of other assisted hearing tools available.

Here are just some of the assisted hearing aids out there 

• Alerting devices. These devices alert you to a particular sound (such as the doorbell, a ringing telephone, or a baby monitor) by using louder sounds, lights, or vibrations to get your attention.
• Television closed-captioning. Television closed-captioning makes it easier to watch television by showing the words at the bottom of the screen so that you can read them. Most newer TVs have a closed-captions option.
• Text messaging. You can type messages and send them from your mobile device to someone else's.
• TTY (text telephone). A TTY (also called TDD, or telecommunication device for the deaf) allows you to type messages back and forth on the telephone instead of talking or listening. When messages are typed on the TTY keyboard, the information is sent over the phone line to a receiving TTY and shown on a monitor. A telecommunications relay service (TRS) makes it possible to call from a phone to a TTY or vice versa.

Analogue or digital

Analogue and digital hearing aids look very similar, but they process sound differently.

Analogue aids amplify electronic signals, while digital aids use a tiny computer to process sound. This means it is possible to customise the aid to suit your hearing loss very precisely. Many digital aids can be programmed with different settings for different sound environments, for example a quiet living room or a crowded restaurant. Some even switch settings automatically to suit the environment.

Digital hearing aids are designed to reduce background noise, which makes listening in noisy places more comfortable. They are also less likely to 'whistle', or give feedback.

Digital hearing aids on the NHS are available as standard on the NHS. This was not always the case – and we played a large part in Making It Happen(external link, opens new window). Our large-scale lobbying campaign saw members send 50,000 letters to MPs and helped persuade the NHS to increase funding for audiology services, especially the provision of digital hearing aids.

Behind the ear (BTE) hearing aids

BTE aids have an earmould that fits snugly inside your ear, while the rest of the aid rests behind your ear. Some models have twin microphones, which let you switch between all-round sound and a more directional setting that helps you focus on what you want to hear in noisy places.

BTE hearing aids with 'open ear fitting' have a small, soft earpiece at the tip of the tubing instead of an earmould. This type of fitting can be less noticeable than an earmould but is only suitable if your hearing loss is mild or moderate. It can give you a very natural sound.

Receiver in the ear (RITE) hearing aids

Receiver in-the-ear (RITE) (or loudspeaker in-the-ear) aids are often smaller than BTE aids because some part of the device sits inside the ear. Like open ear BTEs, they can be easier to put in than an earmould if you find fiddly tasks awkward.

There are different RITE hearing aids for different levels of hearing loss. If your hearing loss is severe, you may need a type where the receiver sits in an earmould.

In the ear (ITE) hearing aids

These fit entirely into your ear. The working parts are either in a small compartment clipped to the earmould or inside the moulded part itself. ITE aids tend to need repairing more often than BTE aids.

Completely in the canal (CIC) hearing aids

These are even smaller than ITE aids, so they are less visible. They are unlikely to be suitable if you have severe hearing loss or frequent ear infections.

Body worn hearing aids

These have a small box that you clip to your clothes or put in your pocket. This is connected by a lead to the earphone. Some people find the controls less fiddly than those on smaller hearing aids. Some body-worn aids are very powerful.

Bone conduction hearing aids

These are for people with conductive hearing loss or people who can't wear conventional hearing aids. They deliver sound through the skull via vibrations. Find out more about them in pur factsheet Bone conduction hearing aids(PDF 368, opens new window).

So there seems to be lots of help out there for people with full or partial hearing loss, but those who are fine, and can hear well shouldn't accept that, I think sign language should be taught as a standard language, it is a universal language that seems to cross all borders. With so many people with hearing problems why is the owners on them to fit in rather than everyone learning to sign, seems a simple answer that would make people feel more part of communities.

Living With Epilepsy

One of the biggest concerns for people with epilepsy and their families is how it affects day to day life. Do they need to restrict their activity and if so, how? Other concerns may arise such as how seizures may affect family life, other relationships, school, work or recreation.

Coping with epilepsy is different for everyone. People with well-controlled seizures may have different issues or concerns than people with poorly controlled seizures. Also, having a lot of seizures and taking seizure medications may affect how people think, feel and their ability to cope with the effects of their epilepsy. Experiences and concerns will also be different if you are a young person, parent, adult with seizures or senior. Gender also plays a role in how we view epilepsy, how we cope, and what issues we may face.

While there is no ‘magic bullet’ on how to live with epilepsy, consider these questions. They’ll help you think about your needs and where to start.

How does epilepsy affect you and your family?

Do you know your rights and responsibilities to manage your health?

Do you know your rights and responsibilities in preventing or coping with possible discrimination?

Do you know how to balance the need to stay safe and live life the way you want?

Do you need information on safety tips and resources?

Do you know how to find supports and resources you may need?

Do you talk about living with epilepsy? If not, would it help to hear others talk about it? How about talking with others, right here on epilepsy.com, at talkaboutit.org, or in person with people at your Epilepsy Foundation affiliate?

Being diagnosed with epilepsy can be upsetting and make you feel isolated and alone. Or you’re a parent or spouse of a person with epilepsy and you are just hearing about seizures for the first time. You feel like you’re the only one. The good news is - you're not alone! Chances are there is a community of people in your area going through the same challenges that you are.

Look for a support groups.

Ask your doctor or other health care professionals for help.

Look for a local affiliate of the Epilepsy Foundation.

Check with the nearest epilepsy center. Maybe they have a support group, educational sessions, or can connect you with other families.

Yet maybe you’re shy or not yet ready to talk in person. You found your way here and now you can talk to people online!

Wherever you are, one of the most important things to help you live with epilepsy is to find a support network - a community of people you can talk to, share the good times and the bad. Get help when you need it and give help when you can do that too.

Talking about it can help in other ways too. Each time someone with epilepsy or a family member shares their story, they are teaching others about epilepsy. One person or one fact at a time

Epilepsy can put a strain on families in many ways. Everyone is in it together. Yet they experience it differently. The person who has the seizures will feel one way, but a parent or spouse may feel quite different. Maybe a family member feels helpless as they watch the seizures because they can’t make them stop. Maybe they are angry that this is happening to their loved one and that their lives have changed. They may be scared and try to protect their family member who has the seizures. But the person with the seizures may feel quite different. They may feel overprotected and want some space and independence. They may be afraid that they are a burden to their family and pull away.

The first step is to realize that people will react differently. When reactions aren’t addressed or talked about, relationships between family members can get strained.

Each member of the family needs to understand what epilepsy is, how it's treated, and what to expect. (The level of understanding will depend on each person's age and abilities, of course.)

Families can be a great source of support for someone with epilepsy-but it might take some work. Encourage all members of your family to learn as much as they can. Then you can share with each other your feelings, fears, and hopes

Most people with epilepsy can participate fully in school. At times, seizures or side effects of seizure medicines may interfere with schoolwork. Some children and adults may be at risk for learning difficulties from the way seizures affect the brain or from other neurological problems. Seizure medicines may make students feel tired, have difficulty paying attention, or forget things more frequently. It may be hard to stay focused during the school day or get homework done at night. Or maybe having seizures at night are causing problems for you at school during the day. You may find that you are falling behind.

If problems at school happen, don’t wait.

Talk to the doctor and tell him or her how you (or your child) feel and what trouble you or your child may be having.

Tell the teachers what is going on. Ask for help, such as extra time, tutoring, whatever it takes.

If problems keep up and simple changes don’t help, ask the doctor for a referral to an epilepsy specialist. Improving seizure control or changing medicines to lessen side effects may help the school problems. Detailed testing may find diagnose learning problems so you can get the right kind of help.

Talk to the school counselor and see if other help can be set up.

Know your rights! Every student should get the help they need to get the most out of school.

Involve the school nurse- make sure she or he knows what to do if a seizure occurs in school. They can also help the teachers understand seizures and the way they affect you.

And don’t forget that social life in school is important. If you, or your child, are having problems making friends, getting along with others or feeling bullied, tell someone! Don’t let epilepsy stand in your way!

Having seizures may make it more difficult to find a job or do certain types of work. If you can’t drive due to seizures, then getting to work can be a challenge. This is one of the biggest problems for so many people! If your job depends on being able to drive, then suddenly you may not be able to keep that job. Others may need vocational counseling or training to learn new job skills or find a job where the seizures won’t be a problem.

In the United States, the Americans with Disabilities Act makes it illegal to deny someone a job because of a medical condition if they can perform the essential duties of that job. People who feel they are being discriminated against because they have epilepsy should consider seeing a lawyer who understands disability law.

Some Good Advice

Learn about epilepsy and jobs before you apply for a job or if you start having problems at work.

Talk to your doctor or nurse if seizures happen at work or are causing problems. You may need your treatment plan revised to get better seizure control. Or look at possible seizure triggers in the workplace or other parts of your life.

Talk to someone at your local Epilepsy Foundation affiliate (link to find an affiliate) for one-to-one help and to find a vocational counselor. Learn about the laws protecting you in the workplace.

Find out what and when you should tell your employer about seizures. In some situations you may not need to disclose anything. Yet people with uncontrolled seizures will want someone to know.

Develop a plan on what people should do if you have a seizure at work.

Find out if simple accommodations at work may are needed.

If you are having problems with an employer or others in the work place, talk to the protection and advocacy staff of the state human rights commission, the Equal Opportunities Commission (EEOC), or a social worker who specializes in employment issues.

If you know someone with this condition make sure they know they have friends, ask if they need help, or just to talk, as with all disabilities knowing your not alone or isolated is half the battle.

Living With Motor Neurone Disease

Motor Neurone Disease (MND) is the name given to a group of similar illnesses. These illnesses all cause damage to the nerves called motor neurones. These are the nerves that carry the messages which control our muscles. A common early sign of MND is increasing muscle weakness. This can show up in many different ways such as not being able to do something you could easily do before. Depending on which muscles are affected this early weakness could perhaps cause you trouble walking or lifting your arms. In about one case in four, it can start in the muscles we use to speak, chew and swallow; this can cause slurred speech and eating difficulties for some people.

There are many different kinds of problems that motor neurone disease can cause. However, it is important to remember that not everyone is affected in the same way. Just because something is mentioned here it doesn’t mean it will definitely happen to everyone who is affected by MND. Some people with MND never lose the use of their hands, others never lose the use of their voice and others are always able to walk.

The damage caused by MND is progressive. This means that the damage gets worse with time. As the disease progresses any affected muscles will weaken until, perhaps, the muscle can no longer do its job. As well as this, the effects of the disease will normally spread to other muscles in the same area. This can often cause the loss of use of that limb or part of the body. Motor Neurone Disease is a fatal muscle-wasting illness, MND strikes people in the prime of their lives and there is currently no cure

MND is diagnosed usually by a neurologist there is no specific laboratory test. Electrical tests are carried on the muscles and nerves. If you need a more information about diagnosis you should contact a neurology department.

There are four main types of MND, each affecting people in different ways. There can be a great deal of overlap between all of these forms, so, while it is useful to separate the various types of the disease, in practice, it is not always possible to be so specific.

Amyotrophic lateral sclerosis (ALS)

This is the most common form, with both upper and lower motor neurone involvement. This form of the disease is characterised by weakness and wasting in the limbs. Someone may notice they are tripping when walking or dropping things. Average life expectancy is from two to five years from onset of symptoms.

Progressive bulbar palsy (PBP)

This form affects about a quarter of people diagnosed, and involves both the upper and lower motor neurones. Symptoms may include slurring of speech or difficulty swallowing. Life expectancy is between six months and three years from onset of symptoms.

Progressive muscular atrophy (PMA)

PMA affects only a small proportion of people, mainly causing damage to the lower motor neurones. Early symptoms may be noticed as weakness or clumsiness of the hand. Most people live for more than five years.

Primary lateral sclerosis (PLS)

A rare form of MND involving the upper motor neurones only, PLS mainly causes weakness in the lower limbs, although some people may experience clumsiness in the hands or speech problems. Life span could essentially be normal, although it may be life-limiting, depending on whether it remains as pure PLS or develops into ALS.

Prognosis varies depending on the type of MND and the age of onset. Generally, life expectancy is 3 to 5 years, but it can be shorter or a lot longer. Stephen Hawking has had MND for 50 years

Some MNDs, such as PLS, are not fatal and progress slowly. People with SMA may appear to be stable for long periods, but improvement should not be expected. Some MNDs, such as ALS and some forms of SMA, are fatal.

Many theories have been proposed – viral infection, environmental poisons, metabolic disturbance and genetic defects. In the vast majority of cases of MND, there is no history of the disease in any of the immediate family members (grandparents, parents, brothers or sisters). This is called “sporadic MND”, because the disease appears for no apparent reason. However, in about 10% of cases, family history of the disease indicates that inherited genetic damage causes the condition; this is termed “familial MND”.

MND itself is not curable, but the symptoms that come with it can be managed in different ways. The only drug available to directly affect MND is called Riluzole or Rilutek. It is thought this drug slows down the progression of MND. The symptoms of MND can often be managed by drugs or in other ways. In general MND tends to affect the following areas, although not every person with MND will have problems in all of these areas, nor in this order.

Mobility (walking can gradually get more difficult), Hand and Arms (may become difficult to move and control), Speech (can become slurred), Swallowing (may become difficult), Muscles of the Trunk (tummy and chest may become weak), Weight Loss, Changes in Mood or Thinking, Breathing (may get breathless easily), Things can be done to help with each of the areas above through community health professionals, Occupational Therapist, Speech & Language Therapist, Dieticans, Physicos etc.

Each person who is diagnosed as having MND will be given the opportunity to meet an MND clinical specialist. This person has many years’ experience of dealing with MND and is an expert in the management of the disease. The clinical specialist might be introduced to you at a neurology clinic after diagnosis, or should make contact with you within a couple of days.

The clinical specialist will assess what help needs to be pulled in from community and health services in order to give you the support you need to live at home. Once the initial issues are dealt with the clinical specialist will keep in contact. If your circumstances or symptoms change it is important that you let the clinical specialist know about this change as soon as possible.

You will be looked after by a team of professionals which can include a neurologist, MND clinical specialist, occupational therapist, speech and language therapist, dieticians and district nurses amongst others. Members of this team will change depending on your symptoms and needs as the disease progresses.

I mention this condition because of the success of The Ice Bucket Challenge, which has gained unbelievable notice for this condition and raised an awesome amount of money for The ALS charity, I am going to post few facts and history of this challenge

Former Boston College baseball player Pete Frates, who has ALS began posting about the challenge on Twitter.[14] Frates is a patient advocate who was awarded the Stephen Heywood Patients Today Award in 2012 for his fundraising and advocacy work.[15] Frates' Boston College and sporting connections became an initial focus of the challenge and strengthened its focus on ALS.[16]

The President of the United States, Barack Obama, was challenged by Ethel Kennedy but declined, opting to contribute to the campaign with a donation of $100.[17] Justin Bieber,[18] LeBron James,[19] and "Weird" Al Yankovic[20] also challenged President Obama after completing the Ice Bucket Challenge. Former president George W. Bush completed the challenge and nominated Bill Clinton.[21] The Prime Minister of the United Kingdom, David Cameron, was challenged by both Alex Salmond[22] and Russell Brand,[23] but also declined in favour of a donation.

In mid-2014, the Ice Bucket Challenge went viral on social media and became a pop culture phenomenon, particularly in theUnited States, with numerous celebrities, politicians, athletes, and everyday Americans posting videos of themselves online and on TV participating in the event.^[4][17]

According to The New York Times people shared more than 1.2 million videos on Facebook between June 1 and August 13 and mentioned the phenomenon more than 2.2 million times on Twitter between July 29 and August 17.^[26] Mashable called the phenomenon "the Harlem Shake of the summer".^[11]

Prior to the challenge, public awareness of the disease amyotrophic lateral sclerosis (ALS) was relatively limited; the ALS Association state that prior to the challenge going viral only half of Americans had heard of the disease,^[26] often referred to as "Lou Gehrig's disease", after the famous baseball player Lou Gehrig, who publicly revealed his diagnosis back in the 1940s.

After the Ice Bucket Challenge went viral on social media, public awareness and charitable donations to ALS charities soared. The New York Times reported that the ALS Association had received $41.8 million in donations from July 29 until August 21. More than 739,000 new donors have given money to the association, which is more than double the $19.4 million in total contributions the association received during the year that ended January 31, 2013.^[27] Similarly, the ALS Therapy Development Institute reported a ten-fold increase in donations relative to the same period in 2014,^[28] with over 2,000 donations made in a single day on August 20, 2014, while Project ALS reported a 50-fold increase.^[29]

The ALS Association, which had raised $64 million in all of 2013, raised more than $10 million on Thursday, August 21, 2014 alone.^[30]

In the United Kingdom, people have also been facing the challenge for the Motor Neurone Disease Association, the only national charity in England, Wales and Northern Ireland focused on MND care, research and campaigning.^[3]

So can I say to all who are taking the challenge, great work, not only are you all doing something fun, you've helped raise a staggering amount of money for a very worthy cause, and in spite of criticism have brought a condition to the forefront, I'm sure everyone who suffers from MND is welcoming the press interest to their disability, some are taking the challenge themselves, the power of people proven again 

Mental health

Mental illness is common. It affects thousands of people in the UK, and their friends, families, work colleagues and society in general.

One in four people will experience a mental health problem at some point in their lives.

Around one in ten children experience mental health problems. 

Depression affects around one in 12 of the whole population.

Rates of self-harm in the UK are the highest in Europe at 400 per 100,000.

450 million people world-wide have a mental health problem.

Most people who experience mental health problems recover fully, or are able to live with and manage them, especially if they get help early on.

But even though so many people are affected, there is a strong social stigma attached to mental ill health, and people with mental health problems can experience discrimination in all aspects of their lives.

Many people’s problems are made worse by the stigma and discrimination they experience – from society, but also from families, friends and employers.

Nearly nine out of ten people with mental health problems say that stigma and discrimination have a negative effect on their lives.

We know that people with mental health problems are amongst the least likely of any group with a long-term health condition or disability to:

find work

be in a steady, long-term relationship

live in decent housing 

be socially included in mainstream society.

This is because society in general has stereotyped views about mental illness and how it affects people. Many people believe that people with mental ill health are violent and dangerous, when in fact they are more at risk of being attacked or harming themselves than harming other people.

Stigma and discrimination can also worsen someone’s mental health problems, and delay or impede their getting help and treatment, and their recovery. Social isolation, poor housing, unemployment and poverty are all linked to mental ill health. So stigma and discrimination can trap people in a cycle of illness.

The situation is exacerbated by the media. Media reports often link mental illness with violence, or portray people with mental health problems as dangerous, criminal, evil, or very disabled and unable to live normal, fulfilled lives.

This is far from the case.

Research shows that the best way to challenge these stereotypes is through firsthand contact with people with experience of mental health problems. A number of national and local campaigns are trying to change public attitudes to mental illness. These include the national voluntary sector campaign Time to Change.

The Equality Act 2010 makes it illegal to discriminate directly or indirectly against people with mental health problems in public services and functions, access to premises, work, education, associations and transport.

Mental health problems range from the worries we all experience as part of everyday life to serious long-term conditions. The majority of people who experience mental health problems can get over them or learn to live with them, especially if they get help early on.

Mental health problems are usually defined and classified to enable professionals to refer people for appropriate care and treatment. But some diagnoses are controversial and there is much concern in the mental health field that people are too often treated according to or described by their label. This can have a profound effect on their quality of life. Nevertheless, diagnoses remain the most usual way of dividing and classifying symptoms into groups.

Most mental health symptoms have traditionally been divided into groups called either ‘neurotic’ or ‘psychotic’ symptoms. ‘Neurotic’ covers those symptoms which can be regarded as severe forms of ‘normal’ emotional experiences such as depression, anxiety or panic. Conditions formerly referred to as ‘neuroses’ are now more frequently called ‘common mental health problems.’

Less common are ‘psychotic’ symptoms, which interfere with a person’s perception of reality, and may include hallucinations such as seeing, hearing, smelling or feeling things that no one else can.

Mental health problems affect the way you think, feel and behave. They are problems that can be diagnosed by a doctor, not personal weaknesses.

Mental health problems are very common. About a quarter of the population experience some kind of mental health problem in any one year.

Anxiety and depression are the most common problems, with around 1 in 10 people affected at any one time. Anxiety and depression can be severe and long-lasting and have a big impact on people’s ability to get on with life.

Between one and two in every 100 people experience a severe mental illness, such as bi-polar disorder or schizophrenia, and have periods when they lose touch with reality. People affected may hear voices, see things no one else sees, hold unusual or irrational beliefs, feel unrealistically powerful, or read particular meanings into everyday events.

Although certain symptoms are common in specific mental health problems, no two people behave in exactly the same way when they are unwell.

Many people who live with a mental health problem or are developing one try to keep their feelings hidden because they are afraid of other people’s reactions. And many people feel troubled without having a diagnosed, or diagnosable, mental health problem - although that doesn’t mean they aren’t struggling to cope with daily life.

Caring for Disabled Relatives

For me I wouldn't get each day itch out the care of my husband, but I can imagine it must be hard for him. I would find it hard if things were the other way around, the hard bits would be not able to take away whatever the problem is, watching someone you love suffering, watching them unable to do things they used to do, things they enjoyed doing. On the plus side it must be good to watch them cope, or to change the way they do things or to change their frame of mind, it must be gradual, for me it has been, but rewarding to see someone evolve in front of you.

In another view to care for a child is normal, as parents we do it anyway, even when they have grown and left home, to care for a disabled child must bring different challenges as a parent, you probably want to protect them even more yet still have to let them develop into independent people as every mother must, but you have to teach them how cruel some in the society they will live in can be, how to deal with it, how to have an even thicker skin than most but without making them feel cold, or not wanting to inter grate into that society, there seems to be a lot more role models out there for disabled children to see, someone like David Weir, Dame Tammy Johnson or Alex Brooker, people who have used their disabilities to their advantage.

The carer who has the hardest job for me is the child who looks after a disabled parent, whether an adult with a parent with disabilities or a teenager, the challenges they must face is enormous, I worked in an old peoples home before my back became bad, and your heart broke for some of the people, some might have been teachers, doctors all brought down by old age and having to rely on others to eat, sleep get dressed, imagine how heartbreaking if that person was your parent, for sure there must be heart warming moments and even funny moments, my nana said everyone's name, including pets, I'd say you'll get to me in the end, but the dog can't make a cup of tea. Most of our parents or Grandparents are our heros when we are small so to see them suffer is painful to say the least, but still has it's rewards in just seeing them smile or knowing they feel comfortable.

Cannabis for Pain Relief

We hear loads of medical breakthroughs concerning cannabis for the use of some disabilities and pain, now while we shouldn't set out to break the law, surely this should be investigated fully without prejudice.

In my region a lady who suffered arthritis, in a lot of pain and taking lots of chemical based medication, I'm not sure where she heard about cannabis but she started growing one plant on her kitchen window sill, using it as a herb on her food, shepherds pies, scones, gravy and lots of her daily foods. She noticed that she'd stopped taking as many of her meds straight away, eventually cutting it to no chemical meds and just the cannabis as a herb, because some of her friends joined in eating her cottage pies and other meals she was treated as a criminal and given a suspended sentence. While she agreed that breaking the law was wrong, surely the crime not allowing someone to use a natural source for pain control.

Wales in England has now approved the use of cannabis for the treatment of MS. Another disability that the plant has proved to be a great help, 

There are also studies in the treatment of depression, and other conditions.

It seems the only reason this is not legal is because the drug companies that provide doctors with the chemical anti depressants, pain killers and all the other drugs would stand to loose a lot, not only the vast amount of cash they get from them, but also the fact that a lot of the so called legal medicines leave you needing something else to counteract the first drug your on.

Cannabis has been used for medicinal purposes for approximately 4,000 years. Writings from ancient India confirm that its psychoactive properties were recognized, and doctors used it for a variety of illnesses and ailments. These included a whole host of gastrointestinal disorders, insomnia, headaches and as a pain reliever frequently used in childbirth.

AIDS - Marijuana can reduce the nausea, loss of appetite, vomiting from the condition itself and the medications as well. Glaucoma - Marijuana relieves the internal eye pressure of glaucoma, and therefore relieving the pain and slowing or even stopping the condition. Cancer- Many side effects of the medication to stop cancer can be relieve with Marijuana, some studies suggest that Marijuana tends to slow down the progress of some types of cancer. Multiple Sclerosis - Muscle pain, spasticity, tremors and unsteadiness are some of the effects caused by the disease that can be relieved by Marijuana. Epilepsy - in some patients, epileptic seizures can be prevented with Marijuana use. Chronic pain - Marijuana helps to alleviate the pain caused from many types of injuries and disorders. Anxiety, Depression or Obsession - Even though mild anxiety is a common side effect in some users, cannabis can elevate your mood and expand the mind 

Disabled Kids

As an disabled adult you face lots of issues aside from the condition you have, pain for some, missing limbs for others, mental disabilities to name a few, but I always find myself wondering how much more difficult it might be for children, first they have to face the challenge of whatever might be wrong with them but on top of that can you imagine being a teen with all those hormones and social requirements to fit in, to be one of the crowd, but from a wheelchair, or as a blind, deaf person, or mental disabilities, the weight of it must be hard to say e least. 

When your middle aged, you may have kids of your own before becoming disabled, so dealing with whispers or stares or misunderstandings of why you use a stick, limb or walk slowly or even in a chair is manageable, as the saying goes, I've raised a teen you don't scare me, but if your 14 you think the worst if people stare or whisper anyway. 

I understand there is a lot of help for young disabled people, which is much needed, the parents should be offered loads of support too, support to help their child still feel normal even though society has very strict rules for normal.

Whizz Kidz, a charity I like to donate to, provides help and much needed aids for children with disabilities, aids that make life more bearable and easier for them, I think disabled mentors would be a great idea, successful people who have achieved their desired goals in spite of their disabilities, people in the business world, art or creative as well as sports people, young people need to know their possibilities are endless disabled or not.

Living independently while disabled

Not everyone who is disabled has people around them, not everyone wants people around them whether disabled or not, not as impossible as people may think.

For example in and around London this scheme is available

Independent Living Alternatives (ILA) is a social enterprise established in 1989 that enables disabled people to live independently. Many disabled people want self-control over their own lives and hire personal assistants to support this. ILA provides innovative and flexible alternatives to institutional and domiciliary “care” provision through a flexible range of personal assistance services informed by disabled people mainly but not exclusively in and around London.

Which offers help and support for anyone who wants to live on their own, there is also dog aid, which provides a dog home help, which offers companionship as well as lots of daily help, they can be found at www.dogaid.org.uk , www.support-dogs.org.uk/ is another group with dog partners who also offer seizure alert dogs vital for anyone living alone who suffers seizures.

There is another group that offers support, advice and practical help for anyone wishing to live independently, The Disability Living Foundation, seem to be a great place to get all that is needed.

If I wasn't married I think I'd rather live on my own than in care facility or at parents, these options aren't always the best ones and it's nice to know you can live as normal a life as you can with help from these groups that know what to do to achieve this. It would help you fulfill your life as everyone else, maybe even work, if your disability allowed it.

Exercise for Disabled

The best exercises for disabled people would depend upon what type of disability the person has. For instance, if the person uses a wheelchair, simple arm exercises might help strengthen the muscles of the forearm. Breathing techniques can be beneficial for disabled people. Using equipment such as hand weights or a simple ball can be other forms of exercises for disabled people.

Hand cycling may increase the heart rate while strengthening arm and hand muscles. This specialized equipment is known as an upper body ergometer or hand cycle. This can improve strength in the arms, shoulders, and upper back. It is also a good method of toning.

If the physically disabled person has some mobility, swimming is an excellent form of exercise. This will provide muscle strengthening as well as cardio fitness. In addition to swimming, water aerobics may be beneficial to some disabled individuals. A swimming instructor can offer instruction and supervision.

Wheelchair exercises for flexibility and toning can provide activity and fun. Bicep curls are a good starting point. The person will hold a soup can in each hand, bend arms slightly, while tucking elbows in close to the side. He will then lift the cans or hand weights slowly, while holding for a count of five seconds. A set of 10 repetitions should be sufficient.

Other chair exercises for disabled people include the use of resistance bands. A resistance band is made to stretch and, as the name suggests, provide resistance. This will help to strengthen arm muscles. The person simply secures one end of the resistance band to an object such as a door knob. Once the band is firmly secured, the person pulls the band toward himself, then slowly releases.

There are several variations for this type of resistance training. If the individual is able to do so, extension exercises for the feet and legs are another excellent choice. It is helpful to purchase a couple of sets of resistance bands to work on the arms and legs simultaneously.

Look for disability exercise support groups or start one yourself. They may be available through local hospitals, clinics, gyms or community centers. Search online and on community boards, or put out a flier and see if there is a need in the community.

If you do find you have a number of other disabled people who want to start an exercise group, contact local pools, gyms or community centers to see if they would be interested in holding classes. This route will not only help your fitness, but also help other people in need.

                                                

Chair-bound exercises are ideal for people with lower body injuries or disabilities, those with weight problems or diabetes, and frail seniors looking to reduce their risk of falling. Cardiovascular and flexibility chair exercises can help improve posture and reduce back pain, while any chair exercise can help alleviate body sores caused by sitting in the same position for long periods. They’re also a great way to squeeze in a workout while you’re watching TV.

If possible, choose a chair that allows you to keep your knees at 90 degrees when seated. If you’re in a wheelchair, securely apply the brakes or otherwise immobilize the chair.

Try to sit up tall while exercising and use your abs to maintain good posture.

If you suffer from high blood pressure, check your blood pressure before exercising and avoid chair exercises that involve weights.

Test your blood sugar before and after exercise if you take diabetes medication that can cause hypoglycemia (low blood sugar).

If you want to add competition to your workouts, several organizations offer adaptive exercise programs and competitions for sports such as basketball, track and field, volleyball, and weightlifting. See Resources section below.

Chair aerobics, a series of seated repetitive movements, will raise your heart rate and help you burn calories, as will many strength training exercises when performed at a fast pace with a high number of repetitions. In fact any rapid, repetitive movements offer aerobic benefits and can also help to loosen up stiff joints.

Chair Yoga

Most yoga poses can be modified or adapted depending on your physical mobility, weight, age, medical condition, and any injury or disability. Chair yoga is ideal if you have a disability, injury, or a medical condition such arthritis, chronic obstructive pulmonary disease, osteoporosis, or multiple sclerosis.

There is a wide selection of exercise for disabled, more than I knew, seems to be a great way to meet new people also, make friends in a similar situation to yourself, staying fit and healthy is an added bonus, give something a go

Getting around

Nearly every city have disabled access to lots of places, Glasgow in Scotland was rated as very good by disabled athletes at The Commonwealth Games, with smooth paths and easy ramps up and down from paths, some areas in the UK still have cobbles, which are horrible from a wheelchairs point of view, doubt it's great for anyone who partially sighted or completely blind either.

The EU has a great scheme ongoing since 2010, called Access City Award, the award recognises cities that have made an effort to remove barriers, highlighting cities that help people with disabilities to participate fully in society and enjoy their rights as equals, the award has four main requirements,

        The built environment and it's public spaces

        Transport and related infrastructure

        Information and communication, which includes new technology

        Public facilities and services

In 2010 66 European countries joined the completion, the winner was Avila, Spain

By 2013, 102 cities applied to join this scheme, the winner this time was Gothenburg, Sweden.

This is a great idea, anything that makes disabled people feel less isolated and inward is a great plan in our world, if people feel they can go out or visit a cinema or the football ground gives us a normality in everyday living.

I find buses hard work, yes they lower if a wheelchair needs to board, but have heard people being refused because seats for disabled already in use by a pram or a buggy and to wait for next bus, most of the time I would just go home, too cold to sit and wait on next bus.  A lot of shops have better access but some have still steps on entry and small aisles, doctors should be the best but ours still has carpet and it just doesn't work. Why are paths not all Tarmac, can't be cost, but in Newcastle a lot of streets have paving slabs, which are useless, but in some areas of the same city there is Tarmac roads and paths.

It's a legal requirement for cities to have disabled access so why they need a completion to make them do so is baffling, making enough car parks or bus stops seems easier, some places have park and rides at train stations in their capital city why not mobility scooter hire also.

Disability changes things

The hardest thing to accept when it hits the fan is not being able to do things you used to, the little things you took for granted or those things you did to relax and exercise.

For me it was gradual, at first not being able to bend over or telling my daughter don't fall over as I can't pick you up, but as she has had it all her life it's normal to her, strange. You kept trying to do those things though as if testing yourself or proving there's nothing wrong, living in denial, I remember trying to do a usual household chore once and my daughter telling me to sit down because I was raining, I was dripping sweat :)

Then begins the long process of accepting that things have changed, you have, now you can keep fighting or finding new things you can do, adapt to the new you, it's hard and gets you down from time to time but you know when you do adapt you feel better,.

Because my issue is chronic back pain, I have trouble standing, in pain all the time and use a chair to go out, so after help off friends and family I found something I could do, crafting takes not much energy and can be put away at any time, so I started making butterflies, just out of card, with glitter, amazing how it helps I send them all over in the hope to make others smile, which in turn makes me smile, I have finally adapted to my situation, I can't do what I used to but I can do this.

Whatever your disability is if you sit down and totally wipe that slate clean, think what you can and want to do, write that book, draw, paint, design a website, take some of the skills you used to use and re use them in a new way, I wonder how many para athletes thought of doing the sport they do before their disability, mind some have theirs all their lives but still adapt, society tells you it can't be done.

Society needs to adapt too, when I was small people with Down's weren't given a chance but things have changed, same goes for a lot of disabilities, we all have to adapt, us with the disability and societies views on it, why isn't sign language or Braille options in schools, little things like that help

    

Discrimination towards disabilities

Most of the time I brush this off, say can't be true or isn't true, surely in our modern world people aren't treated worse because they happen to use a stick, wheelchair or have prostheses, but then I noticed a question on a group, The Last Legs group in fact, the question was does anyone using wheelchair faced problems with the ambulance service, as in not allowed  to take their chair on the ambulance due to health and safety, I was stunned, this can't be true, just saw on the news that they adapt ambulances, a small amount for obese patients so adapting for wheelchairs can't be an issue.

As the debate went on I learned it wasn't just wheelchairs, people have been refused their sticks, this is bizarr, what if when your discharged and you have no aid to help you into a taxi to get home, the worst part of the debate was ambulance staff confirming this, what the heck.

It doesn't end there, mores the pity, if you complain to councils about the paths being highly unsuitable for wheelchairs your told as long as paving is under an inch it's fine, but even a small lift of paving can take wheels off, jolting you and causing more pain, one user asking if I had loose wheel syndrome, that's how common a problem that is. I suggest a councillor put into a wheelchair and taken round his areas bad paths with all the bumps along the way and see how quickly Tarmac becomes an answer.

Then you have people who talk to the person pushing a wheelchair, not the person in it, last I checked, a bad back, lack of lower limbs or other issues placing a person in a chair doesn't make them daft or deaf, those same people seem to think a persons invisible also though, hitting you in the face with a shopping basket or their bag.

Now I understand most people don't want to have a disability or any of their loved ones, but just put yourself in their shoes for a little while, try and think before you stare or speak, making a few adaptions to an ambulance is not a huge deal if you can for other groups of people, changing a path is a sensible idea, anyone, not just wheelchair users, abled bodied too could break their ankle or nose on a dangerous paving. None of these things are a difficult thing to do but could make someone's day who's going through enough as it is.

Disabilities in sport

http://en.m.wikipedia.org/wiki/Paralympic_Games

The Para Oylmpics proves that disabilities, although may not be fixed can be overcome to a degree,

Watching some of these athletes is quite amazing, inspiring and motivating, just goes to show we really can put our minds and bodies to anything and achieve anything we want to, like the blind runners who seem a little less blind when dash don the 100m track, or those guys who do field events. I love watching the swimmers missing a limb doesn't seem to hold any of them back.

I must admit I have enjoyed the commonwealth games more, seeing all athletes performing on the same stage, not separated, a great boost to those watching with a disability seeing everyone treated as an equal, I would love to see it in the Olympics but told far to many competitors to do so, I think that's such a shame, as a society it would do us all good if equality crosses race, gender and ability. 

Disability & Humour

Now we can become down and depressed with whichever disability we are dealing with but in my experience a little humour, no a lot of humour takes a lot of clouds away.

There is no great medicine than laughter and no greater way of feeling better or making others feel better, life is far too short to let these things get to us.

I have been told I should decorate my wheelchair with my butterflies, which at first I thought was a bad idea as it just brought me unwanted attention, on second thoughts it may be a wise thing, would make me smile and might just make those who stare think twice and smile with me.

We must realise this is what we have, stuck with it or whichever word you'd like to describe your disability, make the most of it, make a joke of it, as Alex Brooker of The Last Leg does, he makes me laugh every time I watch him, manages not to be held back by his disabilities but uses them to make him and all of us laugh, and you know after some time you forget his disability and just see the guy.

Catch The Last Leg on Channel 4 on Fridays at 10pm, they are also on facebook and twitter