Tag Archives: disability and sex

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.

 

 

 

disabilitymatch.co.uk blogger

News About Disabilitymatch Media Activity

disabilitymatch.co.uk websiteWell we have been busy this last month.  I have always enjoyed blogging about disability issues and over the years many websites and magazines have featured my articles.  This Summer has been particularly exciting with guest appearances ion a whole batch of top websites.  I was especially excited to have my articles published in Able Magazine which is the largest site/magazine for disabled living.  I even managed to get a podcast interview with Claire Foxton who runs their social media operation.   They published 2 of my blog pieces recently:  One about Autistic singles and further post about dating with a colostomy bag which is a topic that doesn’t get anywhere near enough coverage.

I was also published by independentliving site where I discussed the problems of dating after a spinal injury.  Their website fascinates me, there is just so much good information about adaptive living and today I interviewed their founder Frances Leckie about the site and how it functions.  It has been around for more than 20 years so it is a pioneer in the disability market.  Another hugely influential American website goodmenproject.com published a version of my spinal injury article which brings disabilitymatch to an even larger audience.

So why do I spend so much time blogging for different website?  Well, in this crowded online world sites like disabilitymatch have to stand out from the crowd and develop a presence beyond their own 4 walls.  We are without doubt the largest of the uK disabilitydating sites and much of that comes from blogging and maintaining a strong social media presence.  We have always tweeted @disabilitymatch and now we are doing more on instagram @disabilitymatch and of course our facebook page facebook.com/disabilitymatch.   That way we can stay in contacted with our members and the wider uK disability community.

Do please visit us, follow us  and participate in our growing success.

David

 

 

Advances in Parkinson’s Research Holds Hope For the Future.

 

Parkinson’s is a condition that is quite common amongst disabilitymatch members so we felt that this article that we came across on the Neurology website would be of general interest to you.   The evidence presented in this Swedish research is compelling and backs up stuff I have read elsewhere in recent months.

Scientists have found mounting evidence that Parkinson’s could start in the gut before spreading to the brain, with one study in 2017 observing lower rates of the disease in patients who had undergone a procedure called a truncal vagotomy.

The operation removes sections of the vagus nerve – which links the digestive tract with the brain – and over the course of a five-year study, patients who had this link completely removed were 40 percent less likely to develop Parkinson’s than those who hadn’t.

According to the team led by Bojing Liu from the Karolinska Instituet in Sweden, that’s a significant difference, and it backs up earlier work linking the development of the brain disease to something happening inside our bellies.

If we can understand more about how this link operates, we might be better able to stop it.

“These results provide preliminary evidence that Parkinson’s disease may start in the gut,” said Liu.

“Other evidence for this hypothesis is that people with Parkinson’s disease often have gastrointestinal problems such as constipation, that can start decades before they develop the disease.”

The vagus nerve helps control various unconscious processes like heart rate and digestion, and resecting parts of it in a vagotomy is usually done to remove an ulcer if the stomach is producing a dangerous level of acid.

For this study, the researchers looked at 40 years of data from Swedish national registers, to compare 9,430 people who had a vagotomy against 377,200 people from the general population who hadn’t.

The likelihood of people in these two groups to develop Parkinson’s was statistically similar at first – until the researchers looked at the type of vagotomy that had been carried out on the smaller group.

In total, 19 people (just 0.78 percent of the sample) developed Parkinson’s more than five years after a truncal (complete) vagotomy, compared to 60 people (1.08 percent) who had a selective vagotomy.

Compare that to the 3,932 (1.15 percent) of people who had no surgery and developed Parkinson’s after being monitored for at least five years, and it seems clear that the vagus nerve is playing some kind of role here.

So what’s going on here? One hypothesis the scientists put forward is that gut proteins start folding in the wrong way, and that genetic ‘mistake’ gets carried up to the brain somehow, with the mistake being spread from cell to cell.

Parkinson’s develops as neurons in the brain get killed off, leading to tremors, stiffness, and difficulty with movement – but scientists aren’t sure how it’s caused in the first place. The new study gives them a helpful tip about where to look.

The Swedish research isn’t alone in its conclusions. In 2016, tests on mice showed links between certain mixes of gut bacteria and a greater likelihood of developing Parkinson’s.

What’s more, earlier in 2017 a study in the US identified differences between the gut bacteria of those with Parkinson’s compared with those who didn’t have the condition.

All of this is useful for scientists looking to prevent Parkinson’s, because if we know where it starts, we can block off the source.

But we shouldn’t get ahead of ourselves – as the researchers behind the new study point out, Parkinson’s is complex condition, and they weren’t able to include controls for all potential factors, including caffeine intake and smoking.

It’s also worth noting that Parkinson’s is classed as a syndrome: a collection of different but related symptoms that may have multiple causes.

“Much more research is needed to test this theory and to help us understand the role this may play in the development of Parkinson’s,” said Lui.

If you suffer from Parkinson’s then do please comment on this article as we love to get feedback from our community.

 

 

At Last! Emojis for the Disability World. I Give That a Smile and a Wink!

It is while since I have blogged on this site.  Most of my activity has been on Facebook/Twitter and youtube recently.  But now and then i like to add some posts here.  One of the things that has bought me great pleasure recently is the introduction of emojis for the disabled community.

The introduction of image-based characters such as hearing aids, wheelchairs, prosthetic limbs and guide dogs will help redress the underrepresentation of disabled people on the emoji keyboard, while there will also be a wider range of mixed-gender and ethnicity couples for users to choose from.

Disability rights campaigners welcomed the new accessibility-themed icons. “Love them or hate them – emojis have become part of our everyday digital lives,” said Phil Talbot, the head of communications at disability equality charity Scope. “Social media is hugely influential and it’s great to see these new disability-inclusive emojis. Up to now disability has been greatly underrepresented.”

 

I have chatted about these emojis with several friends in the disabled world and reactions have generally been positive. For me, personally, the hearing aid emoji is very handy as I have a hearing problem and sometimes wish to express it graphically from my phone.   Also I can easily reference wheelchairs and guide dogs from the emoji list which is very cool.

Remember you can always reach me on twitter @disabilitymatch or  facebook/disabilitymatch

 

Have a great day

 

David

 

 

 

Your First Holiday Together

I am very happy to say that I have been writing for Posability magazine on the topic of having your first romantic holiday together.

Here is the link, i hope you find it interesting.  I write regularly about disability issues for various magazines and online sites.

Tips to enjoy your first holiday together

autism with disabilitymatch.co.uk

Autism and Romantic Relationships.

We seem to have more and more members joining the site who are on the autistic spectrum.  This is great since, by definition, these are the very members of the disabled community who need help in navigating the tricky dating footpath.  So I was very excited when the leading autism resource ambitiousaboutautism  to contribute an article about dating and autism.   I would encourage you to read it and share it with your friends and anyone who you feel might benefit from my comments.

autism with disabilitymatch.co.uk

I write for a quite a few of the main disability sites and if you check out the latest print version of Posability magazine you will find a piece from me on disabled holidays.  The article will appear in online format very soon.  I will then tweet it out and mention it her on the blog.  I am just editing our next podcast which has same great stuff on it and I will be writing to you when it is ready to download.

 

 

Disability Match Profiled in Datingadvice Review

Datingadvice.com is one of the most respected dating review sites on the internet and to get an endorsement from them is wonderful news for the team at disabilitymatch.   The review tells the history of our site since it was started 6 years ago and explores my motivation as webmaster in building the site and our positioning in the marketplace.

The review does emphasise how our site has distinguished itself as a real part of the UK’s disabled community.  They noted how special our podcast is and how we keep our community informed through our Twitter feed and Facebook fanpage.  It is always reassuring when an independent industry site features us in this way.  There are many sites that look similar to disabilitymatch, but we have the authenticity and command the respect of our 30.000+ membership.

We are planning some exciting innovations in the coming months which will keep us as the leading disability dating site in the UK.

David Miller

Webmaster

 

Preparing For Naidex.

 

I have just finished putting together my talk for the NAIDEX show.  I am giving 2 seminars at the show, one on Tuesday and the second on Thursday.  I never knew so much work went into doing a powerpoint show – its the first time I’ve used presentation systems.  In the past I always spoke with a flip chart but n ow its gone all high tech and I am using a laptop and a wireless pointer.

I found a friend who was pretty good at preparing thee sorts of slide show and I gave her my script and she worked it into something that looks really good.  I hope you will come along and enjoy it yourselves at the show.  I will be explaining how members of an online disabled dating site can get the best out of their membership and how to create a profile that gets results.  I expect most of the seminar will be dedicated to Q&A and I will also be available after the presentation to give personal guidance and advice to any visitors.

This is a great opportunity to put a ‘Zing’ in your dating skills so don’t miss my talks.

 

David

 

 

 

 

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