Tag Archives: politics of disability

What You Need to Know About Muscular Dystrophy.

muscular dystrophy is common on disabilitymatch.co.uk

Muscles are protected by proteins. These proteins protect your muscles from damage. The genes in your body are bundled DNA used to make proteins that help keep your muscles from damage. More than thirty genetic diseases have been identified to impact the genes and cause damage to muscles.

The genes that make up the DNA are crucial to the entire body and specifically to the muscles. Those who suffer from Muscular Dystrophy (MD) have one or more of these genes that are faulty. Due to these damaged genes, the proteins that would normally create protective fibers malfunction and may even be missing. When this crucial protection is missing from the body, muscles get weaker and will have an impending impact on those who suffer from MD.

There are many types of Muscular Dystrophy and the particular type one has determines much of the factors the person will deal with as they battle this disease. The particular group of muscles in the body that are affected and when the problem is detected is really determined by the type of MD the person suffers from. Many of these factors differ from person to person and it’s not easy to categorize the responses.

One example is a condition termed autosomal recessive titan myopathy, which is an uncommon form of muscular dystrophy. This particular condition is the cause of progressive degeneration of muscles and causes lots of pain in the joints and muscles, atrophy, hyper mobile joints, and even heart problems.

Because titan myopathy is mostly misunderstood, it will take quite a long time for people to research and study how it impacts people. Dealing with a rare disease is quite a challenge, but there are ways to offset the pain and discomfort when people are sad or down. It is beneficial for people to raise pets, enjoy music, and engage in various hobbies that will lift up the person’s spirit.

Although there is much research going on dealing with the treatment of Muscular Dystrophy, more is needed and more awareness is crucial. This is one area where we all can get involved. Increasing the awareness and learning more about the disease goes a long way. Here are a few important factors you need to know about Muscular Dystrophy.

1. Understanding the symptoms

doctor explains muscular dystrophy symptoms

To get a clear grasp of the symptoms, we’ll look at the common indications for Duchenne muscular dystrophy, which is the most common form of this illness. For those who suffer from Becker muscular dystrophy, the symptoms are similar and may start in their twenties or later.

 

Here are some of the earlier symptoms:

  • Wading gait
  • Muscle stiffness and pain
  • Running and jumping with difficulty
  • Walking on toes
  • Problem standing or sitting
  • Late speech development coupled with learning disabilities
  • Falling frequently

As the conditions worsen:

  • Unable to walk
  • Shrinking of muscles and tendons
  • Breathing difficulty
  • Spine curvature
  • Cardiac problems due to weakened heart muscles
  • Eating and swallowing becomes difficult

These are the most common symptoms that need to be followed up with a doctor’s care. Proper testing and diagnosis will assist health professionals to begin treatment and help the person live a better life and a long life.

2. This disease gets passed down through the generations, but not always.

genetics for muscular dystrophy

Alterations in the genes which cause muscular dystrophy are commonly passed down through the family. So when someone is suspected to have MD, doctors will closely examine the family medical history of the patient to see if this condition can be traced. But some people get MD even without any family history, thus being the first in their family line to have this disease.

Duchenne muscular dystrophy is undoubtedly the most common form of the disease. It mostly affects young boys. But there are many forms of MD and it affects males and females. Here are some of the more common types:

Becker MD

Congenital MD

Distal MD

Emery-Dreifuss MD

Oculopharyngeal MD

Facioscapulohumeral MD

Limb-girdle MD

3. Some with muscular dystrophy never see their first birthday, but others live long lives.

wheelchair woman

Of course, the type of muscular dystrophy one has determines the symptoms. Whichever type of the disease a person has, there will be weakness and deterioration of the muscles and this continues to get worse as time goes on. Other symptoms are difficulty walking, respiratory problems, and curvature of the spine. There are even more symptoms such as heart problems, behavioral issues, swallowing difficulty, differences in the foot and contractors which are the shortening of muscles or tendons surrounding the joints. Some even suffer hearing loss and changes in facial appearance.

There is no type of muscular dystrophy that can be considered as common or classic. Some people begin to experience the symptoms as late as their middle age, and some suffer from it from birth. There are some who continue to walk throughout their lives, but most are not able to continue walking. Then there are those who are able to live a long life as well. Children often begin to suffer during their teen years and some babies cannot survive their first year.

4. Reaching a diagnosis requires several tests.

This rare condition shares its presentation with a host of other diseases. If a doctor begins to suspect that a patient has MD, a certain number of tests are required to rule out other factors. This doctor will also investigate your medical history and inquire about your family history as well.

Young patient is getting a diagnose from doctor

The doctor will search for markers of the disease in the bloodstream through blood and urine tests. A more thorough screening may be conducted through genetic testing to reveal any gene changes that might have caused the condition. Exercise tests will help to assess the patient’s muscular strength. Using a thin needle, muscle biopsies will help the doctor assess how the condition is progressing. Heart tests will measure the strength and the condition of the heart. There are even neurological tests that look for contractions and test reflexes. Along with this, an MRI can reveal additional information that helps the doctor to come to a better conclusion.

5. The treatment is to slow down MD, as it cannot be cured.

Health professionals work hard to help sufferers of Muscular Dystrophy to live comfortably and slow its growth. Unfortunately, there is no cure for muscular dystrophy and the attempt is to maintain a comfortable and functional life.

child rehab

A regular regimen of physical therapy helps to maintain muscles lissome and healthy. Those who have weakened face and throat muscles are helped through speech therapy. Some even opt for alternatives such as voice synthesizers to help them to speak clearly. Therapy on the respiratory system helps those with breathing trouble caused by MD. But if the person has late stage muscular dystrophy, they will need assisted ventilation.

Some patients require the help of a pacemaker for weakening heart muscles, and others require corrective surgery to repair contracture. Scoliosis sufferers can opt for the attachment of a metal rod to their spine when the pain from their curving spine becomes unbearable. Some drugs have been identified to help slow the progress of several types of muscular dystrophy and some amount of occupational therapy will help patients to move around their home and workplaces.

To make their condition more manageable and bearable, there are several additional things that can be done. Investing in a good bed or additional padding helps patients who are unable to find a good comfortable position to sleep. This improved comfort will help them to get better sleep. For those who can, swimming and some low intensity exercises will help with muscle strength.

6. Continuing research must be encouraged.

Genetic engineering

Muscular Dystrophy has been a daunting condition for many. It has caused disability, making it difficult to perform even their daily tasks. And for some, it has been fatal. There is a positive outlook due to the development of new therapies. These approaches help people to improve their lives as they live with MD.

A cutting edge therapy called Gene Replacement Therapy has the possibility of helping doctors to give new genetic materials to the cells. This would allow for the replacement of missing proteins that protect the muscle cells. This will result in restoring muscles that have been damaged as a result of MD.

There are two types of gene modification therapy that are being explored. One would help the defective gene to produce the protein that it previously could not produce. The other attempts to alter the production process of protein and change the patient’s Duchenne muscular dystrophy to Becker muscular dystrophy, which is easier to manage. Up to 80% of those who suffer from this condition could benefit from these new therapies.

Such cell-based therapy could be the answer to treat all the different types of muscular dystrophy. The result of this shows up as new healthy muscle stem cells allowing the person’s body to produce healthy muscle for better living.

Although muscular dystrophy is a very difficult disability many sufferers lad full and vibrant lives and use our site to find love and fulfilment.

 

 

 

New Hope for Multiple Sclerosis Sufferers

 

It has been a long time coming BUT it looks as if scientists have finally come up with a  drug that alters the immune system which has been described as “big news” and a “landmark” in treating multiple sclerosis, doctors and charities say.  If this is the case then Disabilitymatch enthusiastically welcomes this news and hopes that it will be quickly available for our members and the wider disabled community at the earliest possible date.

Trials, published in the New England Journal of Medicine, suggest the drug can slow damage to the brain in two forms of MS.

Ocrelizumab is the first drug shown to work in the primary progressive form of the disease.

The drug is being reviewed for use in the US and Europe.

MS is caused by a rogue immune system mistaking part of the brain for a hostile invader and attacking it.

It destroys the protective coating that wraps round nerves called the myelin sheath.

The sheath also acts like wire insulation to help electrical signals travel down the nerve.

Damage to the sheath prevents nerves from working correctly and means messages struggle to get from the brain to the body.

This leads to symptoms like having difficulty walking, fatigue and blurred vision.

The disease can either just get worse, known as primary progressive MS, or come in waves of disease and recovery, known as relapsing remitting MS.

Both are incurable, although there are treatments for the second state.

Ocrelizumab kills a part of the immune system – called B cells – which are involved in the assault on the myelin sheath.

In 732 patients with progressive MS, the percentage of patients that had deteriorated fell from 39% without treatment to 33% with ocrelizumab .

Patients taking the drug also scored better on the time needed to walk 25 feet and had less brain loss detected on scans.

In 1,656 patients with relapsing remitting, the relapse rate with ocrelizumab was half that of using another drug.

Prof Gavin Giovannoni, from Barts and The London School of Medicine and Dentistry, was involved in the trials and said: “The results shown by these studies have the potential to change how we approach treating both relapsing and primary progressive MS.”

He told the BBC: “It’s very significant because this is the first time a phase three trial has been positive in primary progressive MS.”

More than 100,000 people are diagnosed with MS in the UK, around one-in-five are progressive.

Dr Aisling McMahon, the head of clinical trials at the MS Society, commented: “This is really big news for people with the primary progressive form of multiple sclerosis.

“It’s the first time a treatment has shown the potential to reduce disability progression for this type of MS, which offers a lot of hope for the future.”

The drug is being considered by the European Medicines Agency and the US Food and Drug Administration.

But Prof Giovannoni warned that patients in the UK may be disappointed as it may be hard for the NHS to fund everyone getting a drug that is likely to be expenseive.

He told the BBC: “I would expect a narrow group of people to be eligible.”

Dr Peter Calabresi, from Johns Hopkins University in Baltimore, added: “This is the first drug to show a significant effect in slowing disability progression in a phase three trial in primary progressive multiple sclerosis and therefore represents a landmark study in the field.”

But he warned doctors to “stay vigilant” because of the risk of side-effects.

Weakening the immune system increases the risk of infection and of cancer emerging.

Via bbc.co.uk

Great End to 2016, Looking Forward to an Amazing 2017.

This year finished for me on a high note after a period of ill health and a bit of surgery. I decided to go off to Majorca, Spain to recuperate and rest and whilst I was there I had the great pleasure of meeting up with our dear friend Martyn Sibley from disability horizons who was attending a Handisport conference to promote accessibility for the disabled.  When i saw Martyn he confided in me that he had been voted as the 3rd most influential disabled person in the UK.  This is an honour he truly deserves.  Nobody has done more for campaigning on accessible travel and normalising disability  in our country.

My next trip is to other side of Europe – up north in Finland where i have many friends and family.  Funnily enough a really cool video promoting a Finnish dating site  just passed across my desk and frankly it is so much better than the usual cheaply presented dating videos from Finland which is the poor man of dating promotions in Europe.

I enjoy looking at how other niche dating sites promote their offers and this offering from flirttideitti.fi is visually very nice indeed.  OK. that was a ‘shout out’ now back to disabilitymatch which has been adding new members at a rate of knots. I have also been delighted at just how well our podcast has been doing.  we have had hundreds of downloads for our episodes and, not just in the UK.  We have podcast subscribers in Canada and Australia and we get social media coverage for the podcast all around the world.

I do recommend that you follow me on twitter @disabilitymatch where I tweet every day about things that are happening in the world of disability and in the wider worls of medical innovations.  Finally we have rebuilt our store http://shop.disabilitymatch.co.uk and we are starting to get orders.  We will be giving 15% of our shop profits to disability charities so if you need to buy a wheelchair or a disabled bed or a commode and many other things do buy from us because we will donate profits to a good cause.

Back soon

 

David

Paralympics Coming to Rio 2016

Well, we have just been through an incredible 16 days of Olympic excitement in RIO.  I have been glue to my sofa every night watching niche sports into the early hours on BBC.  I had never shown any interest before in women’s hockey events BUT when we have a Team GB match with medals at the end of it then it takes on a whole new dimension.  I guess that is the whole point of the Olympic games – it makes us aware of sports we might never otherwise watch and so we learn and get engaged emotionally with the result.

Hopefully the Paralympics will be the same.  In London 2012 we all watched with fascination at blind football and wheelchair archery, we all discovered a whole new group of athletic heroes.  This has had a longterm effect on the disabled community.  Not just a sense of pride but an increased desire to participate and get fitter.  Not everyone can be an ‘Olympic’ athlete but all people disabled and fully able can improve their physical activity, health, flexibility and spirit of achievement.   We are worried, of course, about how the Rio Paralympic games will turn out.  There are money worries and some countries will not have the funding to travel to the games.  The Russian drugs ban will remove a large swathe of great olympic talent which will affect a whole range of sports.  Already the Brazilian organisers have warned of low ticket sales and closing venues.  This is a real pity since the Brazilian squad are rated quite highly within the Paralympic movement.

We have interviewed Michelle Weltman, events organiser the London Marathon on our upcoming podcast episode and she tells us which UK athletes we should be looking out for and cheering on from our sofas.  In 2012 Channel 4  did a great job on presenting the Paralympics, hopefully their presentation in RIO this year will be at the same level at excellence.

Latest Disability Podcast Available for Download

Very happy to announce that the latest episode of our disabilitymatch podcast is ready for free download. To enjoy this broadcast click here to download.   We have interviews with an autistic film maker, a adventure holiday centre for the disabled and a fun chat with ‘sexpert’ Robin.

The podcast is unique in its regular coverage of disabled living issues in the UK.  We have hundreds of downloads every month.  You can subscribe at iTunes or any of the main podcast download sites.   We really appreciate it if you share our podcast link on Twitter/Facebook and all your regular social media.  Our podcast is a free service designed for the disabilitymatch dating community.

Just a reminder that Valentine’s Day is coming soon so get active on the site and start flirting to find a date for Valentines.

Gogglebox Couple Have Disabled Son.

2F16F48300000578-0-image-a-15_1449340420324

I must admit that of all the couples on Gogglebox Stephanie and Dominic are by far and away the most entertaining.

Hard-drinking Gogglebox couple Stephanie and Dominic Parker have revealed a more serious side to their life by speaking about their disabled son.

The pair, who have become firm public favourites on the hit Channel 4 show due to their outspoken views have spoken about their son Max, now 15, who can have 150 epileptic seizures a month.

They noticed that there was something wrong with their eldest, when he was just four months’ old.

Stephanie and Dominic Parker, pictured, the ‘posh ones’ on Channel Four’s Gogglebox have spoken about their disabled son for the first time, who has on a bad month some 150 epileptic seizures and has autism

The couple, pictured, are known for their outrageous views and posh accents on the hit TV show

Steph told Deborah Ross in the Times Magazine that they noticed Max had these ‘little jerky movements’.

She said: ‘We took a video of him and showed it to the GP, who immediately referred us to the paediatric consultant at the local hospital who said, “I think we have a problem and I need you to come in first thing Monday morning. Bring a bag”.’

The youngster also has autism and spends term time in a special residential school.

Steph said that Max’s condition has had a profound effect on their lives and has made them better people, even though they do try to enjoy themselves.

Steph and Dom have won a cult following for being plummy, outspoken and never without a drink on the Channel 4 show, in which the reactions of families are filmed as they watch TV together in their homes.

 

New Podcast Episode is available for download.

Our latest podcast is ready for fee download from the podcast.disabilitymatch.co.uk site or from iTunes or most other podcast platforms.  We hope you enjoy it.  If you have 40minutes to while away then this is the podcast for you.  It is an upbeat discussion on a variety of disability issues and our guests are shown in the video above.

Hope you enjoy it.

 

David

3rd Episode of disabilitymatch Podcast

Very happy that we have released our 3rd podcast episode!  I am getting into the flow of things now, also we are getting great guests agreeing to be interviwed because they like our style.  We are upbeat and communicative.  Anyway you judge for yourselves

 

We have almost 100 downloads on our first day and we have high hopes of reaching 300 downloads by the end of the week.  We have great guests on the show and our twitter following is amazingly supportive.  We depend on you to share our podcast links and help get it widely known on all social media.  Disabilitymatch is a vibrant community and we are thrilled to be able to help you get the most from it.

 

 

Disability and Sexuality Negative Viewpoints

There was an interesting article in the Independent newspaper

Here is an important quote from the article.
Research has shown that disabled people are less likely to have a long-term partner or marry than non-disabled people (although this is dependent on impairment type). When a 2014 newspaper poll asked Britons if they had ever had sex with someone who had a physical disability, 44 per cent said: “No, and I don’t think I would.”

Disabled people’s sexuality has been suppressed, exploited and, at times, destroyed, over many centuries. It has been seen as suspect, set apart and different from the sexuality of non-disabled people. So how can we shift the negative images of disability and sexuality that still dominate society’s attitudes? Well, disabled people and their allies have been campaigning for change for decades and, while it is not going to be easy, change is on the way. But with it comes new controversies.

Dr Tom Shakespeare, a disabled academic, wrote The Sexual Politics of Disability nearly 20 years ago, and it remains one of the few evidence-based studies in the field. “Images of disability and sexuality either tend to be absent – disabled people being presented as asexual – or else perverse and hypersexual,” he says.

He believes that, in the wider community, disabled men (and, to a lesser extent, women), are rendered impotent and sexless by disability, and thus are seen as unattractive and vulnerable to mockery and exploitation. (As Cicero wrote: “In deformity and bodily disfigurement, there is good material in making jokes.”) And this may explain an assumption often made in the past – that it was better to shield disabled people from reaching out for sexual relationships rather than risk the chance of them being rejected. There was an expectation that disabled people’s sexual desires should be set aside and ignored, because they should not – or could not – be satisfied.