Tag Archives: Coping (psychology)

MDA Study Reveals ‘Cost of Illness’ for ALS, DMD, MMD | Quest Magazine Online


MDA Study Reveals ‘Cost of Illness’ for ALS, DMD, MMDMDA has supported a total cost-of-illness study for three common neuromuscular disorders that may affect drug development and social and economic policiesChronic, debilitating diseases like amyotrophic lateral sclerosis and muscular dystrophy take a toll on families and society that goes beyond medical expenses. Putting a dollar amount on this toll will help guide the drug development industry and policymakers.Article Highlights:MDA has funded the first-ever study in the U.S. estimating the annual cost of illness in terms of medical costs, nonmedical costs and loss of income for families affected by amyotrophic lateral sclerosis, Duchenne muscular dystrophy and myotonic muscular dystrophy.The study has implications for companies seeking to develop drugs for neuromuscular disorders; for the design of social and economic policies that pertain to families with these disorders; and for individuals seeking insurance or government program coverage of treatments for ALS, DMD or MMD.”This valuable study provides us with a way to translate the adverse effects of our diseases into dollar terms, the universal language of decision-makers and the policy arena,” said Jane Larkindale, MDA vice president of research.In a two-minute video, MDA Senior Vice President of Advocacy Annie Kennedy explains the value of the study for individuals.BY MARGARET WAHL ON AUGUST 14, 2013 – 4:00AM

via MDA Study Reveals ‘Cost of Illness’ for ALS, DMD, MMD | Quest Magazine Online.

via MDA Study Reveals ‘Cost of Illness’ for ALS, DMD, MMD | Quest Magazine Online.


Posted by on September 15, 2013 in Disability, health, IBM


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Bioethicist: I see what you do and I know who you are. on bloglovin

How dare you, in your neat scholarly papers and clean academic discussions, seek to valuate my daughter’s existence on a scale of “compatibility” with life. How dare you attempt to rate her life at all. How dare you challenge her personhood based on your arbitrary and normative assessment of what that might mean. If, in this day and age, you did that to women, black or Jewish people, you would be stoned in the streets. Deservedly.

How dare you stand before a frightened young couple whose child is born with disabilities and force them to choose, from your narrow, utilitarian views, with no checks or balances in place, to decide the fate of their child. 

Bioethicist: I see what you do and I know who you are. on bloglovin.

via Bioethicist: I see what you do and I know who you are. on bloglovin.

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Posted by on August 8, 2013 in Disability, Reblog


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disABILITY Information and Resources


Visit this very informative website it’s well worth it

disABILITY Information and Resources.

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Posted by on July 26, 2013 in Disability


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Depression and I

Depression and I


I really hate this disease and what it’s doing to my body, my life and my family. I can’t go on with the pain and the mental anguish. The uncertainty and the fear are crushing my spirit. I don’t want to be here anymore. Please take me away Lord. I know I’m being selfish by wanting to leave this planet because my family and friends will miss me when I’m gone. (I hope)

Then I wake up to reality.

Thank you Lord for another day that I can see my loved ones, see the sunshine or rain, see the beauty of creation, play with my doggy companions. Chat to my friends online.

Ever felt like you’re carrying the world on your shoulders or that you couldn’t care less if the world comes to a sudden end right now, this minute, or have you felt like bursting into tears for no apparent reason.

We all have down days throughout our lives and some have more than others, when we feel that we just can’t carry on anymore. The disease, people, hurt and challenges that we must face become overwhelming and we want to implode under the pressure.

Many people who suffer from depression prefer the idea of finding a natural treatment for their condition rather than taking prescription anti-depressants.

Yes, maybe, if your depression is in the mild to moderate range of severity. A more severe or long-term depression should be treated by a qualified professional. If you are already taking prescription anti-depressants, do not also take any natural remedies at the same time without first consulting your doctor! In some cases, there can be dangerous interactions. Just because something is natural does not mean it is always safe for everybody.

Remember that before antidepressants were invented, people mostly relied on talk therapy to try to get better. This can still work really well, if you have a good therapist, and if paying for therapy isn’t a problem for you.

Not all types of psychotherapy work for depression. Cognitive therapy teaches the patient new, more realistic ways of thinking. Cognitive therapy has a record of curing depression that appears to be just as good as the rate of cure of most antidepressants.

Also remember that before therapists were invented, people talked over their problems with trusted friends, family members and spiritual advisors. So, if good therapists aren’t easily available where you live, you can try to look for other people to talk to that might help. Join online groups that have the same or similar problems. Discuss your feelings, fears and phobias with people who have “been there, done that”. It helps tremendously to realise that you are not the only person with these problems. But there is little point in joining a group if you don’t participate in the discussions. If you are a private person that has difficulty in disclosing your innermost fears and thoughts, you can use a pseudonym. Nobody needs to know your true identity.

I personally prefer to go the full disclosure route because I might be able to help someone else by revealing all. I also prefer to place my trust in people I can identify with rather than some false picture or icon. But that is my preference, and does not mean that these people are any more sinister, secretive or threatening than thousands of others. You will connect with some and avoid others, as is human nature. We don’t connect with everybody, but nurture the friendships you make.

Generate other interests like painting, reading, TV, crochet, woodwork, writing, photography etc. With the key word being interest.

As soon as you start feeling down, immerse yourself in your interest, rather than allow yourself to wallow in self pity. Remember that the longer you stay at the pity party, the more difficult it is to shrug it off and get on with the happy part of your life. I see self pity as a drug like alcohol, the more you drink the less stable you become and the longer it takes to reach sobriety, so likewise with self pity, the longer you stay at the party, the more difficult it becomes to say goodbye. I prefer to think of the many blessings that I have received throughout my life, rather than all the stupid things that I have done. Positive outlook breeds positive response. A negative attitude has the tendency of clouding your vision and perception of life and encourages negativity in others.

Life is a series of choices.

You can:

Choose to be positive or negative.

Choose to stay poor or to achieve riches

Choose to be clean or dirty

Choose the language you speak

Choose where you want to live

Choose to accept a marriage proposal or remain single

Choose your profession

Choose to accept or reject

Choose to fight or not

And the list goes on and on. Sometimes we make the wrong choices and end up in catastrophic situations, but wrong or right, it was or is a choice. You can stay as you are for the rest of your life or you can change. Change the way you do or see things. Change your outlook on life. The choice is yours.

So, consider incorporating some of these ideas into your life if you are feeling a bit depressed.

Serious depression may need much more intervention. There is no quick fix.

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Posted by on July 16, 2013 in Disability, IBM


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Zip solution


Caused by …………

Weak fingers?

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Hand and arm weakness?

Try This simple solution

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Posted by on June 22, 2013 in Uncategorized


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Special eating utensils for disabled


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Posted by on June 19, 2013 in Disability, IBM


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EZ-UP Assistive step climb

portablestep EZ-UP

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Posted by on June 18, 2013 in Disability


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