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THIS WEBSITE HAS INFORMATION ON VARIOUS FORMS OF MUSCULAR DYSTROPHY INCLUDING MYOSITIS, FOR COMPARISON PURPOSES.  FOR INFORMATION ON MYOSITIS IN ITS VARIOUS FORMS SEE MY BLOG http://livingwithmyositis.wordpress.com/




GO TO    http://livingwithmyositis.wordpress.com/  A more interactive blog about Myositis

 

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  Home of muscular dystrophy, myositis, myopathy, MS and neuro muscular disorders and any other disability for that matter.

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This is not a medical forum and is merely for discussion and sharing. For medical opinion please see your doctor.


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http://www.dlf.org.uk/
disabled living foundation
Excellent site for advice on equipment and daily living



CONTACT THE MUSCULAR DYSTROPHY FOUNDATION OF SOUTH AFRICA HERE: http://www.mdsa.org.za/


Facts about disability

  • Around 10% of the world’s population, or 650 million people, live with a disability. They are the world’s largest minority.
  • 80% of persons with disabilities live in developing countries, according to the UN Development Programme.
  • Only 1-2% of children with disabilities in developing countries receive a formal education.
  • 80% of people with disabilities are unemployed.
  • Only 2% of people with disabilities in developing countries have access to rehabilitation and appropriate basic services.
  • For every child killed during conflict, three more are permanently disabled.
  • Mortality of children with disabilities can be as high as 80%.
  • 20 million women are disabled as a consequence of pregnancy and childbirth per year.


  • CHRONIC DISEASE


The arrogance or ignorance of the healthy.


http://www.wikipedia.org/

In medicine, a chronic disease is a disease that is long-lasting or recurrent. The term chronic describes the course of the disease, or its rate of onset and development. A chronic course is distinguished from a recurrent course; recurrent diseases relapse repeatedly, with periods of remission in between. As an adjective, chronic can refer to a persistent and lasting medical condition. Chronicity is usually applied to a condition that lasts more than three months.

 I recently read an article written by a doctor in England who also has a chronic disease, where he talks about the arrogance of the healthy.

 He says-------"It really didn't help when people sent me magnets, elixirs, and books on astrology, while other demoralizing  contributions were, this or that medicine and what I should have done earlier to avoid catching the disease, or various remedies and exercises to cope with or cure the problem."------ It is the unspoken belief of those who have never suffered from a chronic disease that it is somehow the patients fault that they have the disease.

 This is natural because people don't want to believe that disease can randomly come to them. That somehow they can prevent it.

 I am sure that most advice is well intentioned but I for one am growing tired of people advising me to eat lots of protein or other weird and wonderful foodstuffs and join a gym when I can barely pick up a spoon to feed myself and would require a hoist to get me onto a gym machine. (No, not because I am overweight) but because I have little to no muscles where it counts. I am sure that most disabled people have researched every possible avenue in search of the miracle cure, drug, diet or exercise. Not that we have suddenly become fountains of information but generally we are pretty clued up, after a while, as to what is good for us and what is not.

  I am wheelchair bound, yes, but I am not mentally challenged or deaf, so it is not necessary to pronounce your words more clearly, speak slowly, shout or speak over my head to my care giver as if I'm not there.

 It is a joy for me when people just offer to help and then wait for me to reject their offer or to tell them what I need, and in some cases, how to do it. There are times when I can manage "slowly" or when the maneuver is particularly complex and requires the help of someone who knows the procedure. We do need to feel comfortable and safe while carrying out certain drills, especially when transferring to or from the wheelchair.

 In my short life in a wheelchair I have experienced a few problems that I would like to share with healthy friends that could help with communication.

 Try to stand or preferably sit in front of the wheelchair. It is difficult to maintain eye contact if the person is behind or to the side. Craning the neck to look up is also very tiring.

 Be careful with "advice".  We have probably heard it all before. Most of us know as much and in some instances, with rare disease, we know more than our doctors. After having the disease for a while we would have exhausted most avenues of information in order to beat or subdue it.

 Please offer to help. First offer, and then wait for directions. Most of us have a particular way of holding or doing things to suit our various degrees of disability. If you offer first you don't have to run the risk of hurting or embarrassing us or yourselves. Just be natural. In most cases we won't break.

 Over the years I have collected some thoughts from people that I correspond with from around the world (some positive, some negative, some sad) these quotations shed some light on how some of us feel at times.

  •  "You look fine" is only external. You have no idea how I'm really feeling
  •  I am scared about this thing that we know nothing about
  •  My biggest help was remaining positive
  •  This disease can control your mind. I want to be free of its power
  •  People around me have such perfect lives. I feel so alone.
  •  It is so hard to deal with this problem and live a normal life. I want so much to be as I once was
  •  If it wasn't for the inconvenience and frustration of this damn thing it could almost be considered an honour to be a member of such a small, elitist group.
  •  I thought I could handle anything but I never considered this.
  •  The wonderful friends I have made make up for having this lousy disease.

 All of us whether healthy or sick need support from friends and family. It only needs 2 people to start communicating and encouraging others to join and before you know it, you will be encouraging, helping and sharing advice with each other.

http://livingwithmyositis.wordpress.com/


Submitted by: Roly Clulow 09-10-09


RATHER CALL ME KATE


My name is Kate.

I attended a conference on students with disabilities in Melbourne in 2008, and the following is based on a report I wrote for the University of South Australia after the Pathways 9 conference.

I find the words disability and disabled insulting, patronizing and humiliating, and even more so as my disease progresses because it undermines who I am, and seems to be defining me as a person. And so, I would prefer you to just call me Kate… a person with some different needs to others.

Overview of the word ‘disabled’ and its derivatives.
The following are dictionary definitions of the word disabled, and its many derivatives. On dissecting the word(s), it is easy to see why I feel these words are inappropriate, and also probably highly offensive to many individuals who learn differently or operate mentally or physically in other ways to the general population. They were of course, a refreshing change to words such as ‘deformed’, ‘crippled’, ‘mental’ or ‘incurable’, but I believe it is time for another review to the way we are ‘labelled ’.

Disabled:
•Unable to perform particular activities - describes somebody with a condition that makes it difficult to perform some or all of the basic tasks of daily life
•Unable to operate - incapable of performing or functioning
•People who are physically challenged

Disability:
•Restricted capability to perform some or all of the daily tasks - an inability to perform some or all of the tasks of daily life
•Medical condition restricting activities - a medically diagnosed condition that makes it difficult to engage in the activities of daily life
•Legal disqualifier -something that causes somebody to be regarded in law as ineligible to perform a specific transaction

Disable:
•Restrict somebody in some activities - to make somebody unable to perform the activities needed to earn a living or carry out the basic tasks of daily life without difficulty
•Rendered inoperative
•Stop something from working - to prevent a device or system from working by disconnecting a part of it

Able:
•In position to do something - physically or mentally equipped to do something, especially because of circumstances and timing
•Capable or talented - having the necessary resources or talent to do something
•Good at learning - education quick to learn in an educational environment

Abled:
•Having particular abilities
•Not physically or mentally challenged – U.S. having all physical or mental functions

Dis:
•Roman underworld - in Roman mythology, the region of the dead; Greek equivalent HADES
•Treat disrespectfully - to treat somebody without respect, e.g. by being purposely rude – ‘You are dissing me’
•To criticise somebody or something

The notion of discrimination.
And so I thought I would bring my discussion to the notion of racism and prejudice; most people understand racism as an attitude or set of attitudes towards individuals or groups and prejudice to be the acts of discrimination. While this may be an easy way of clarifying the terms, closer examination highlights different aspects of racism, and therefore of discrimination.

The focus on racism [discrimination] being grounded in the prejudicial beliefs of individuals of some irrational and fanatical persons tends to focus our attention on the beliefs and actions of individuals. However, if we view discrimination as social and cultural rather than individual, our focus leads us to the way discrimination works behind our backs, which is often unseen through social and public policy.

In so doing we can as a group or community participate in racist practices or actions without necessarily holding racist beliefs. This form of racism focuses on discrimination and often is described by the term Institutional racism, which can be defined as highlighting the systemic processes which reproduce disadvantage. However, while institutional racism draws our attention to the workings of the state and other institutions and therefore its actions, we should continue to recognise individual racism and the role of beliefs, which transfer to actions of discrimination. We often think with our beliefs but very rarely think about them.

Conclusion.
I believe there is a sense of what Martin Luther King described as the ‘de-generating sense of nobodiness’ amongst many ‘disabled’ people, especially those who are struggling with mental illness of any kind. It is therefore imperative we aspire to change views about disability, and in my view, even the terms applied to us, and to fight for complete dignity and equality within the social systems through transformation of services and attitudes.

There is often a feeling of disconnection as this group struggle with the notion of a level playing field, as well as the feeling of ‘otherness’ as we reach out for services that are labeled in ways that make us feel even more different and therefore marginalised. We must continue to battle against the stereotypes, to break with the traditions that are steeped in bias and discrimination that most certainly ensure there still remains a lack of equity between the disabled and other groups.

Submitted by: Kate 15-10-09


Americans with Disabilities Act

No this is not Dave he's probably better looking


 

I use the ADA definition, which I unfortunately can't quote off the top 'o my head. This is what google is for! :)

A little while back there was a comment about British origins of the Social Model ... my understanding is that the SM does indeed have British origins.

I think of myself as impaired by my disease. It took a long time for me to get to grips with the word 'disability' though

 

... and 4 days later I step back a bit from my endorsement of the ADA definition. I'm impetuous like that :)

I was thinking about it, and the ADA more defines impairment than disability. It is also more of a functional thing, saying who qualifies for certain services and such ...

But, I'm pressed for time (like usual :/ ) so theory later. How 'bout some history instead?

The first time I was defined as disabled was in 2007 when my driver's license was canceled. Part of the state's justification was the statutory definition of 'disabled', and the fact that I fit it. (The biggest justification was my inability to operate a motor vehicle within the requirements of public safety, as evidenced by totaling my car in what I refer to as 'the incident' :) )

The second time was later that year when I applied for paratransit services (remember, I now had no license). I was given a little ID card to demonstrate that, yes, I did qualify (was disabled) per the Americans with Disabilities Act.

The third time, which is really the only time I couldn't rationalize away as 'just following procedure' came months later and wasn't really the product of a conscious thought process. It just sort of happened. I was writing a blog post for my personal blog (dempls.blogspot.com) and referred to myself as disabled. I was just writing along and it came out. I didn't even notice until I had posted it. This was the first time I had ever used that word myself for myself. OK a little bit of more theoretical stuff: I firmly believe that the only one that can define me as disabled, as an identity, is me. By corollary I can't define anyone else. Which makes this whole definition business a bit of a brain scratcher :)


Submitted by: Dave Ebaugh 18-10-09


Learning to live all over again


We, with a debilitating disease, like Myositis or MD know all about side issues. They are an integral part of the disease but are quite often lumped into the description and symptoms of the disease. Headaches, stiffness, high blood pressure, elevated cholesterol levels, lung infections, itching, swallowing difficulties, high sugar levels, arthritis, foot drop, swelling, body fat gain, back pain and the list goes on and on.

These side effects could be caused by the medication being prescribed for the disease, or due to the fact that our immune systems have been compromised by the disease.
I can remember just such a case when I was put on high dose Prednisone for 6 months. My personality changed from passive to aggressive, I put on weight all over, I developed a bump at the base of my neck at the back (sometimes referred to as a buffalo hump), swollen feet and hands, dizzy spells, headaches and mood swings second to none. At that time I felt like I could quite simply just chew paint off walls I was so highly strung and on edge ready to attack at the drop of a hat, then just as suddenly could burst into tears. There just didn't seem to be a happy medium.

I had to come to terms with the fact that I had an incurable disease with the added stress of the side effects of the prescribed drug.

After it was ascertained that these drugs were not having their desired effect on my disease I was weaned off it, much to my satisfaction, although I never returned to my old self. I kept the weight, swollen feet, headaches, edginess and occasional mood swings but the buffalo hump got smaller. I have also heard of incidents where drugs were administered for, say, high cholesterol, only to cause patients to have such severe counter reactions that it would necessitate hospitalisation.

Now added to the side effects of medication are the other ones like aches and pains in joints and muscles, itches that cannot be scratched, limbs that cannot be moved without help, eating or drinking are difficult and may require assistance, getting into and out of bed, turning over once there, sitting down or standing up, walking, opening doors and windows, personal hygiene, toileting, cooking and cleaning all pose the problems of having any debilitating disease. The norm is no longer. (It has become abnormal), which in turn is our normal. In fact virtually everything that we once considered normal becomes abnormal and basic living skills have to be relearned. It is like being reborn in an adult body. (A battered and broken body for sure, but still a body). Walking, eating, washing, sleeping, sitting and everything else has to be approached from a different angle or has to be relearned from scratch. Even simple tasks like scratching an ear, brushing of teeth and hair present new challenges to us.


Connected to this is the fact that some normal activities can just no longer be carried out and we then have to concede defeat and reluctantly add this activity to the "No can do list" which steadily gets longer and longer despite our best efforts. There are numerous disabled aids and equipment on offer at exorbitant prices from various equipment suppliers but sometimes these items also become redundant over time. They often serve their purpose very well for a time but then the old body deteriorates further and renders them useless.

The struggle of rebirth and the relearning of new "old" skills will continue indefinitely while there is still debilitating disease undermining our once healthy bodies.

http://livingwithmyositis.wordpress.com/

Submitted by: Roly Clulow 29-10-09


Acceptance before progress


If you speak to any recovering alcoholic or drug addict who has attended any form of rehabilitation, they will tell you that the therapists all want the admission and acceptance that there is a problem, before the healing process and rehabilitation can begin. If I as an alcoholic deny that I have a drinking problem or merely give verbal agreement to it, I may just as well never attend any rehab meetings. You see, the healing and rehabilitation process cannot begin or will be ineffective unless I as the alcoholic admit that I have a drinking problem and then accept the fact that help is required.

 

In the same vein, I as a disabled, otherwise abled or what ever you wish to call it, person, will struggle with rehabilitation and experience great difficulty with coping with the disease or disability. Denial and negativity are equally as damaging to the alcoholic as to the disabled person. Before any form of rehabilitation can take place we have to first ACKNOWLEDGE that there is a problem.

 

Then we need to ACCEPT that we have a disease or disability that can be lived with even if we cannot beat it. It took me three years to accept that I had an incurable disease called IBM Inclusion Body Myositis, and that no mistake had been made in the diagnosis. I visited every possible doctor or specialist that gave me any hope of a change in diagnosis, searched the internet for hundreds of fruitless hours, swallowed all sorts of potions and pills and read all the literature I could lay my hands on. Why I thought that the books or internet would give me any different information I don’t know. The rarity of my disease meant that in a lot of instances I knew more about it than my doctors. After my first visit with them they would hastily read up on the disease. Now I am not pointing fingers at any doctor because there is no man that could memorise all about the thousands of diseases that infest our planet.

 

Once acknowledged and accepted we need to ADAPT or lives and life styles to accommodate the disease or disability. It is a pointless exercise denying the problem and refusing to adapt your style of doing a particular thing. As an example, by persisting in holding a pen in the same way as you have always done just because you are too stubborn to change, you will succeed only in frustrating and annoying yourself and others. Adapt to a new style that accommodates the problem. You succeed in writing without the frustration, irritation and aggravation just by burying your pride in some available pocket. I kept having sudden unexpected falls while I persisted in denying that I needed walking aids. A walking stick, crutches and a wheeled walker all played their part, even though I still fell on the odd occasion, until I felt that my body could not take any more abuse and decided to use a wheelchair. I can still enjoy my life in a wheelchair providing that my attitude is positive.

 

Now to make all of this work for you, you need to have the correct positive ATTITUDE. A positive attitude will breed success and your trips to the “depression dungeon” will become fewer and shorter in duration. We may not be able to change the direction of the wind but if we adjust our sails we can certainly go where we want to go. I know that it is difficult to be positive all the time but as soon as you feel the negativity bug, you need to busy yourself with an interest like painting, writing, reading or whatever grabs your fancy. Doing this will take your mind off the negativity and remove the stress of the situation.

 

The happiest of people don't necessarily have the best of everything; they just make the best of everything that comes along their way.

 

 Remember

 

ACKNOWLEDGE

ACCEPT

ADAPT

ATTITUDE

http://livingwithmyositis.wordpress.com/

Submitted by: Roly  28-11-09





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