March 8-14th is MS Awareness week. This is the week here in the United States where people with MS or those who are committed to the MS Cause try to raise awareness of the disease. With spring coming the traditional Walk and Bike for MS events will take place. These will call attention to the need for money for research and assistance to those who have MS.

Advocacy in person and online is year-round. These are events and issues that we all can do to increase awareness. To learn more about this click to visit the national multiple sclerosis website.

We can also increase the awareness and understanding on a daily basis by simply explaining as needed to the people we know and meet.  No need for a special occasion to share understanding.

As MS is a complex disease and most people know zilch about how our body works you have to be patient with lack of understanding.  Remember it took you time to understand MS yourself. Don't stop trying to explain  because if you do they'll never understand. And that's important because understanding is what we need!

If we are going to explain it to other people we have to understand the ever expanding knowledge ourselves.  MS can be difficult to simplify and explain.  Especially since it's symptoms vary from person to person so much. But don't be afraid to explain, it will often help you understand your own symptoms and MS itself better. Plus questions can sometimes lead you to new understanding.

I have found that a lot of people think of MS as being a muscular problem which throws them off from understanding it.  I have had people tell me that they did not know vision could be involved with MS.  And I've also had people absolutely adamant that cognition is not involved in MS.  I think this is because mobility is visible. And the other areas that MS affects in people are not always readily seen.  Even in my own family I'm not sure the full explanation always gets through.  So I usually like to go to the fact that MS is a nervous system problem right away.

      And my explanation goes something like this: "think of  the big guy in that skull of ours (the brain ) which controls everything.  In order to do this it has to send out it's messages down transmission lines (nerves) to different parts of the brain as well as down the spinal cord out to the different parts of the body its controlling. And of course there are also transmission lines (nerves) to send messages back and forth in the brain and back up the spinal cord from the various parts of the body.

As these transmission lines are critical they are very well protected. As well as being protected by the vertebrae bones in the spinal column they are also insulated by being surrounded by a fatty substance called myelin. which also help in the transmission down the nerve.

In a person with Multiple Sclerosis the immune system  goes awry and attacks the insulation covering of these transmission lines ( the myelin ) and interrupts the transmission.      Depending on how severe the attack (relapse,exacerbation) is it causes a slowdown or glitch in the function of the area the nerves are controlling.

Over time the body will usually repair itself(remyelinate) and the person can seem like nothing ever happened. If the repair is not as complete the person will be left with a residual problem of loss of function in that area. Even if they seem to be repairing it well after each attack there is a gradual loss from the repeated attacks. 

You will have to find different ways to explain it to everybody just as I have. For some people it can be compared to a computer or to an electrical system. And if you see their eye's glazing over you know you've either given them too much info or there're confused.

But I do know that they have to understand it is complex and it is The Central Nervous System( the brain and spinal cord) . And also it's called Multiple for a reason-it affects different body systems not just one.   Then I think they could begin to understand more about its many varied symptoms in different people.

We also need people to understand that there is no cure, but that the current research is constantly increasing our understanding of the disease. There are now more drugs to modify and decrease the attacks (relapses) we have and the progression of disability. As well as drugs to relieve some of the symptoms  All thanks to research increasing our knowledge.

For knowledge's sake, here are the 12 most common symptoms:

 1.Visual impairment is the most common 1st symptom.and temporary blindness can occur but recovery is usual. Although 70% of us have some loss of acuity in our vision.

2. Cognition is also a problem with 60-70 % of us- some mild some more impaired . Recall is the biggest problem, and for many of us it takes longer to process material. We will often need more time and more repetitions to learn something new.  But we can learn it just as well as anyone else, we just need more time.

 

3. "Bone-Tired Fatigue" that has no apparent cause but is unique to MS is a real bummer for most of us! It can cause us to cancel out on events and make us unreliable, and it's not something we can push through.  Lesser fatigue often dogs us through the day, especially in the afternoon.  Some of our fatigue is caused because are bodies are working harder to compensate for our losses.  So you may see us picking up a walker or a wheelchair when we can feel the fatigue coming. By doing that we can push back the fatigue and save energy for better things.

4.  Depression is quite common and it can be due to biological reasons related to MS or to just the situation.  Some people have a euphoric type of mood change. This is not as common but that can be a problem also.

 

5. For some of us speech ( a dysarthia)  can also be involved. Sometimes temporary or when we're tired but for others the condition remains. When speech becomes more of a problem just understanding the person is more difficult and it does limit a person's socialization.

6. Occasionally in a relapse swallowing problems (dysphagia) can occur and the person recovers. However, more permanent swallowing problems can occur usually in more advanced cases of Multiple Sclerosis.

 

7. The most visible symptom is walking problems.  Often due to weakness,spasticity or ataxia.

8.Our arms can be involved too. Handwriting as well as other fine motor activities .

9.  Numbness and tingling are quite common and many times are the early symptoms of MS. 

10. Pain is also a factor with MS.  Pain occurs when a nerve impulse is being transmitted across damaged Myelin. This does resolve with time but it is painful.  There also can be pain from musculoskeletal compensation.

11.  The bowel can also be affected but it is usually in more advanced cases of the disease.

12.  Urinary tract involvement of urgency is more common in the earlier stages of MS.  However retention which can lead to UTI's can develop with progression of MS.

 

                                                         ellie

Last Sunday morning I woke up and staggered to the bathroom and went past the clothes all laid out on the dining room table. I thought oh boy where am I going this morning?  Oh yes I remembered Church.  It was late but I grabbed a cup of coffee and tried to wake up and  clear the fog.  But it did not work.  So I crawled back into bed.

Later that day I felt better so I decided to get up and try to finish what I wanted to finish in January as this was the 31st.  I needed to put up the Christmas pictures on face book.  These were something I really wanted to share.

So I opened up my picture file and face book.  Needless to say my foggy brain wasn't very cooperative. It seemed to me that they had changed how you put pictures up!  So after some frustrating attempts I called on my younger son who helped me a bit through my problem with my neural fibers in my brain in slow mode.

And we did put up a couple of pictures with proper identification of them. I also wanted  identification of everyone in the picture of my niece Gale's Christmas Family Dinner.  But when I looked at the picture it seemed to me it had shrunk and was so blurry that to identify people was out of the question.  And to be honest at that point I was so tired I could hardly remember my own name. So when my son said," Let me finish this up for you mom and you can add to it tomorrow or the next day". I gratefully took him up on the offer,

I swear everybody is getting faster and smarter and I'm getting slower and slower and dumber and dumber! At least that is how I felt then. So as that was my big event of the day I crashed early and had a long sleep.

The next morning when I woke up and walked to the kitchen to get my cup of coffee-- 10 steps was it.  So I sat on the seat of my walker and pushed myself backwards to my wheelchair. Then I went into the kitchen and  poured my coffee. Well this feels like relapse I thought and too tired to get angry or finish my coffee I crawled back into bed. 

The next day when I got up I wasn't better- now I was angry!  A week ago I was using my cane for short distances. I had started back walking outside with my wheeled walker. I was able to go 2/3 of the way around my short block. Inside the house I was mostly walking with no assist with a few wall touches here and there unless I needed to carry things that were heavy or awkward.  And I wasn't as tired !!!

I was making plans to go to the theatre, movies, out to dinner.  We were also discussing that we might do a coffee hour at church. Damn! Damn! Damn!

It just doesn't seem fair. It seems I spend more time in a relapse than I do in remission!  Of course I did have a lousy cold when I was in my remission which might have triggered the relapse. However, I didn't make myself get a cold.

I thought when I made my box for the Haiti Relief  I was going to have a problem finding reasons to put money in  that related to my being upset about MS .  Not so, that  box is starting to fill up real fast with IOUs.

Oh I know, I'm 74 and I should be mature as I know this is what happens with MS.  But you know my age and the fact that this has happened many many many times  doesn't make it any easier. Disappointment is disappointment. And yes I always get better, that knowledge helps, but it still takes too damn long to get better.

But then I look at the Haiti box I made and sighing I think putting things into perspective I'm still dam lucky. I'll get better! I have a great family. I can rest when it's is needed, I have the right equipment, good medicine,and good doctors.

I'm not saying all this is OK it's not!! But it is what it is. And it could be so much worse as it would be if I was in Haiti or I was a person who didn't have a good support system, good healthcare, or a nice home to be crashing in.

When I wake up tomorrow morning I'm going to spend  time looking at the shelf near the bottom of my bed.  Then start my day meditating on that prayer which my son made, framed and gave to me. Then I'll go online and find the relief agency list that helps the disabled in Haiti and send some money.

Grant me the Serenity to accept what cannot be changed

The Courage to change what can be changed

And the Wisdom to know the difference

                                               Be well, ellie

This high volume talk about health care reform that we hear on television, read in newspapers and the Internet and its possible negative effect on us can be very fearful.  Sometimes we hear things that we're certain are not true. But we are not always sure how to find the facts to ascertain what is the truth. We with MS as well as those with other disabling conditions are a very very vulnerable group of people. "We have pre-existing conditions!"

Unfortunately we need Health Care!  We do not have the luxury of feeling nothing could ever happen to us that would require us to need Health Care.  We are not the people who have Healthcare Coverage but have never had to give it a test of what they really cover. We are not the people that the Health Care Insurance Industry is looking for.   We have healthcare needs that are expensive and in the future may be even more expensive. Therefore they feel they cannot make a sufficient amount money on us.

Ironically it was for this reason that Medicare was originally  passed by Congress and signed into law by President Johnson in 1965. (To see the archival document go to  http://www.ssa.gov/history/tally65.html  ) 

Elderly people could not get insurance coverage because they had or could possibly develop conditions that would require medical intervention.  They were not like healthy younger people and therefore were more expensive to cover.  Remember in our country our Health Insurance Industries are mostly for-profit companies.  Their major goal is to make as much money as possible for their Stockholders. And for some reason their board of directors feel required to reward their executives lavishly .

We who have MS take very expensive drugs to allow us to function at a higher level and to control the impact that MS has on us now and to prevent increasing disability in the future.  Now the drug companies can make a lot of money on us- but not if we can't afford the drugs.  So without some changes in our Healthcare System we're back to square one!

 

However as we live in a country that is a democracy we can change things. First we must seek the truth and get a variety of opinions.  Then we must advocate for what we think is right. This is what I have been trying to do for months.  But now that we're coming down to the wire I'd like some input from some of my readers on their views on healthcare issues.  So I plan for some of my blogs to take a current healthcare issue, do my research and share my research with you.

The first issue I'm raising is one that's important to all of us.  Will people with disabilities suffer if health reform becomes a reality? 

  I have found that The New Republic Magazine site has an excellent article.  It is an interview with Lisa Iezzoni, M.D., MSc . by Harold Pollack.  Dr. Iezzoni is a professor of medicine at Harvard Medical School and is the director of  IHP ( Institute for Health Policy ).  She has written many articles and books on disabilities and Multiple Sclerosis. She brings understanding and expertise as a Physician who is also a wheelchair user.  She's "walked the walk not just talked the talk" as she has had multiple sclerosis for 33 years.  I feel this is a must read! Even if you don't agree with her you can't help but be inspired.                                       http://www.tnr.com/blog/the-treatment/the-truth-about-disabilities-and-health-reform 

And while your on the site do check out some of the other informative articles.

                          ellie

 

Dear Friend,

World MS Day GOAL:
50,000 letters to Congress
by midnight on
Wednesday, May 27th!

Demand quality, affordable health care for Americans living with MS.

Click here to send a letter to your elected officials:

your U.S. representative

your U.S. senators

May 27 marks the first-ever World MS Day and over 100 nations around the globe are joining together to build awareness for multiple sclerosis. One of the greatest overarching needs around the world is for quality, affordable health care to ensure all people with MS can lead a life of possibility, dignity and fulfillment.

Here in the United States, for the first time in nearly 17 years Washington leaders appear serious about fixing our broken health care system. Tell Congress that now is the time to fix health care. Help us reach our goal: 50,000 letters to Congress by midnight on May 27th!

We have an incredible opportunity to make our voices heard in support of accessible, affordable health care coverage for all. Our legislators need to know that it is time for the right reforms right now.

As I write this, National MS Society staff and volunteers are meeting with members of Congress about the Society's health care reforms principles. These principles need to be incorporated into new health care policies if people with MS are going to be able to move forward with their lives.

In honor of World MS Day, let us unite to support these efforts with a national wave of grassroots action. Will you help? Write your legislators and speak out for quality, affordable health care by midnight on World MS Day, May 27th.

Decisions your elected leaders are about to make will impact how we receive our health care for generations to come. We can't miss this opportunity!

Below is the set of health care reform principles developed by Society volunteers and activists. With your help, we can put these principles in front of our policymakers. They include:

• Accessible health care coverage
• Affordable health care services and coverage
• Standards for coverage of specific treatments
• Elimination of disparities in care
• Comprehensive, quality health care available to all
• Increased value of health care
• Access to high-quality, long-term supports and services

Take action now - tell your legislators to create health care policies that work for people living with MS and their families.

If we can deliver 50,000 letters to Congress by midnight on World MS Day, we will send the message that we are united on behalf of all people affected by MS.

Thank you for standing with me at this important moment,

Scott Hanson MS Activist, diagnosed in 1998

I've sent my e-mail to my legislators.  Won't you send your e-mail to your legislators too!

                                                                      Ellie

National MS Society                                                 

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As my remission is continuing with a little help from the change of medication I'm on, I'm out and about much more. Living here on Caroline street in Saratoga Springs I'm close enough to pop in my electric wheelchair and go downtown to the library, city center, restaurants or shopping.  And now that I can walk a little bit and with my cell phone I'm also safe to do it alone. As this is a walking city I should fit right in.  However I now notice the lack of curb cuts again.

Interestingly a recent article in USA today mentioned the lack of curb cuts hampering people with MS and other disabilities from safely crossing the street to access the new Mets stadium.

                             " NEW YORK (AP) ? Some disabled Mets fans have marked Opening Day at Citi Field with a pregame protest over the nearby subway station.

They say the Mets-Willets Point station is not fully accessible for the disabled, despite a recent $15 million upgrade by New York City Transit. It included some accessibility improvements.

But some 22 members of the National Multiple Sclerosis Society say it was even difficult to cross the street from the subway to the stadium. There were no curb cuts to accommodate canes, walkers and scooters.

A New York City Transit spokesman says there are no plans for a fully accessible station.

City Councilman John Liu (LOO') says the lack of accommodations appears to be a flagrant violation of the federal law.

Pictured above : to the left are New York City Council Member John Liu and New York State Assembly Member Micah Kellner. Seated are MS activist Alexis Alexander (right) and Todd Kreisler from the NYC Center for Independence of the Disabled.  

 

  

Picture to the left shows MS Activists Protesting Inaccessible Subway in NY and lack of curb cuts to safely cross the street.

 

 

 

 

 

 

 

I was personally very pleased to see them protesting.  I'm not a protesting person by nature. I don't like discord. I'd rather accommodate, go along, find another way but. . .  Never to protest or stand up is not right either. Sadly I've come to believe that if people don't protest and complain vigorously many times change will never never happen. And if all it takes is to put in curb cuts that allows wheelchair or walker dependant people to be able to safely get out like other people I don't understand why it's not being done.

I know the feeling of needing to cross the street and there being no curb cut at an appropriate crosswalk site.  Or crossing the street in a crosswalk and finding no curb cut on the other side. And then having to go down the street looking for a curb cut to get up onto the sidewalk. And not finding one having to go back to the original crosswalk and re-cross the street. Then you start looking for another crosswalk with a curb cut hoping that there is a curb cut on the other side. 

I understand that it was only in 1990 that the ADA finally was past by Congress and signed into law.  And that people have difficulty changing but c'mon now!  If you have a disability and you can't walk like a non-disabled person can but you can use a cane,walker,or wheelchair then all you need is curb cuts to be out and about like everyone else!  So why is there a problem putting in curb cuts?  The law is the law never mind the morality of allowing people to get out of their homes and move about if they can't walk.

But there's also a safety factor too!  To have a crosswalk with a curb cut on one side but not on the other creates a total unsafe situation for that person.  I just don't understand how a crosswalk or an intersection would not automatically have curb cuts on both sides!!

 

Here in Saratoga Springs we also have some areas where curb cuts are on one side of an intersection and not on the other.  This is really a matter of public safety.  For example, I went down to the city center from my home on Caroline Street in my electric wheelchair with my orange flag and my son concerned for my safety.  There are two areas of major concern I'd like to talk about.  

                    

The lack of curb cuts at the intersection of Circular Street and Lake Avenue. This is a major intersection it is just below the Lake Avenue School and before the Fire Department.

 

Going downtown on the Lake Avenue side of the street I came to the intersection of Circular and Lake.  I could not continue down Lake as there was no curb cut on the Circular Street side.  There was a curb cut on the Lake Avenue side so I crossed Lake Avenue. However, there was no curb cut on the other side. I then had to go down Circular Street until 

I I found a driveway on the other side of the street to enable me to get up on a sidewalk.  I then preceded down Circular to Lake and then down lake Avenue.

 

   The other area of concern is the City Center. There is no curb cut on Broadway in front of the main entrance (the entrance for the disabled) at the City Center. In order for a person with a physical disability( a wheelchair,walker user) to access the City Center from Broadway they would have to go down further on Broadway with major traffic to go up onto a driveway to get up onto the sidewalk in the front of The City Center. Or go down the side street(Ellsworth Jones PL) quite a distance before they would be able to get up onto the sidewalk in front of City Center.

If a person with a physical disability was coming down Maple Avenue they would also have a problem with curb cuts.  There is no curb cut on Maple Avenue on the City Center side.  In order to be able to get up onto the sidewalk in front

of the City Center They would have to go up the side street (Ellsworth Jones Pl) toward Broadway to find a curb cut.

 

 

Or they could go back down Maple Avenue to Lake Avenue  to Broadway take a right on Broadway and go down the sidewalk to the crosswalk with a curb cut on both sides on Broadway to cross Ellsworth Jones Pl to the City Center.

 

This is  really is inexcusable!!  I plan to buzz around the city in my electric wheelchair now that I'm feeling great with my remission.On days when it's not too hot I'll map and take pictures of the areas  that limit accessibility for people with disabilities . Then I'll try to do something about it.  Want to join me?                     Ellie