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Multiple Sclerosis affects the whole family

11/25/08

Permalink 05:55:53 pm, by eleanor Email , 1229 words   English (US) latin1
Categories: my life, Thoughts, Adapting Activities, information

Multiple Sclerosis affects the whole family

When Michelle Obama talked about her father and his living with Multiple Sclerosis she mentioned his difficulty walking. She remembered him struggling with two canes just to cross the room to kiss his wife.  But what she talks about the most is the fact that he had to get up 1 hour earlier to allow him to get ready to go to work.

 

  People with multiple sclerosis and other disability's can relate to this.  Everything takes longer and with multiple sclerosis the fatigue itself not just the decreased strength, coordination, vision loss etc. makes it more difficult.  You and your family find that you can't do it all. With time MS can become  progressive and what you can do becomes less and less. Many of your children's, spouse's and family events as well as special events of your own are canceled or given up due to your multiple sclerosis and it's disabilities. 

 

But going to work and using your skills to do something worthwhile is well worth the effort. It's being part of society, it's providing for yourself and for your family too. And if that means giving up other things you'd like to do and  having to go to bed earlier also, it's worth it.

 

But what Michelle and other children with a parent who has MS know is that time is a big factor in their family.  And for the parent who has MS choosing how to use their limited time it is critical.  That extra hour of her father's day was so he could go to work to bring home the necessary income for his wife and two children. Because of this these two children were successfully sent to college.

 

The sad fact is that MS is a debilitating disease that starts early when an individual is starting a career and a family.  As disability increases income decreases. Sending your child to college when you have become disabled can be nearly impossible.   In fact the MS Society does have a scholarship fund for this knowing the difficulty MS patients and their family's can financially face. "Do you take expensive drugs or get an appropriate wheelchair that allows you to get out of your house to go to you're child's event at school or send your child to college?"

 

Now, I do not know if Michelle's father could have worked longer if accommodations had been made in his work place.  And I do not know if even working with accommodations would have made it possible for him to continue to work due to the progression of his multiple sclerosis. I don't know if he experienced the hassle that  applying for disability can be. (This hassle is something I just don't understand! One does not live well or allow your family to live well on disability insurance!! )

 

  But what I do know is that before the ADA passed in 1990 many many people with multiple sclerosis who could have worked with the proper accommodations were denied the opportunity to work. This was a lose-lose situation.  A loss for the person with MS and a loss for the workplace's that would have benefited from their being there.

 

And as you know the ADA did not totally solve the problem of people with MS and other medical conditions of being denied the opportunity to work. When lawsuits were brought to companies that were not allowing them the proper modifications, people with disabilities were losing in court.  Then when the issue was  brought up to the Supreme Court people with disabilities were losing there also. Unfortunately our Supreme Court was reading the Congressional ADA Act in a very narrow fashion. But the amendment to the ADA that was just recently unanimously passed by Congress and signed into law by the president should correct this problem.  Now people with conditions like MS,Diabetes and Epilepsy that were not being covered prior to the amendment should  be covered.

 

Our new president- elect Barack Obama was a co-sponsor of the ADAA (the amendment to the ADA bill).  And he is a very strong advocate for the disabled.  This was even apparent in an excerpt from his victory speech November 4th.  When he was listing all the varied people in our country he included the termed disabled along with all of the others.   " It's the answer spoken by young and old, rich and poor, Democrat and Republican, black, white, Latino, Asian, Native American, gay, straight, disabled and not disabled -"   I have been listening for years to political speeches wanting to hear the word disabled included and this is the first time ever!!  I almost couldn't believe I heard it.

 

Now, this may not seem to be very important.  But the ease with which the disabled were included was momentous to me.  When people automatically feel that the disabled should have equal rights just as all of our other citizens we've made progress.  At 73, I remember when I graduated from college as a Physical Therapist in 1957 this was not the case. And for too many years we've continued to deny people with disabilities their civil rights. It was easier to continue to put children in Homes for Crippled Children, soldier's with disabilities in The Old Soldiers Home, and others into Homes for The chronically Ill.  Or just keep them in their homes and forget about them.  Or when we close down many institutions especially for mental conditions just let them be the street people.

 

  However, we should never forget how much progress has been made for people with disabilities.  In many states  children with  disabling conditions have special schools or can be mainstreamed with appropriate modifications in regular schools.  There is also this big emphasis on early identification to start therapy programs for these children.  And adults with Strokes, Parkinson's, MS, Spinal Cord injuries etc. have a lot better equipment to help them be more independent.  This way they can take advantage of the ADA's rulings on work and accessibility to public places. I can not under estimate the importance of this. The world has been opened up to so many people that were just not part of our society. 

 

Unfortunately there is still more work to do .  See the article about Texas http://www.dallasnews.com/sharedcontent/dws/dn/opinion/viewpoints/stories/DN-boatright_15edi.ART.State.Edition1.4a2b60c.html be warned, it's upsetting.  Also the current article in the Wall Street Journal on how the economic problems today are affecting the disabled and the elderly.    http://www.careerjournal.com/article/SB122714130153442755.html

                                                                                                               But there is still much to be happy about.  Remember we will soon have a President in the White House and legislators in Congress (there is an MS Caucus in both the House and Senate) that are very much behind improvements for the disabled.  Indeed even with this current economic crisis I feel it still does look promising.

imageHere are Barack Obama and Tammy Duckworth, a disabled Iraq war veteran who is now Illinois Veterans Affairs Director. The picture was taken in Illinois after Barack laid the wreath on veterans day. Tammy is an Iraqi veteran who lost both of her legs.  Due to advancement in prosthetics Tammy is up and about walking and very employable. Check out Barack Obama's  transition website.  Here you will see his commitment to the disability community.  http://www.careerjournal.com/article/SB122714130153442755.html

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