I recently sent off my message to Gov. Patterson via the MS Take Action e-mail. I mentioned the issue to a neighbor who asked me to send her the info as she wanted to do the same. Then I thought maybe some of my readers should know about this too and would also like to take action.

-------- Original Message --------

Subject:
Take Action Today: Voice your Opinion

Date:
Wed, 1 Sep 2010 10:59:31 -0500 (CDT)

From:
National MS Society <Info@MSNYC.org>

Reply-To:
National MS Society <Info@MSNYC.org>

Organization:
National MS Society

To:
elenor@wiltonnewyork.com

Dear Eleanor:

Governor Patterson is considering a piece of legislation that is vital to people living with MS. This legislation helps keep expensive medications, like those used to treat MS, more affordable under private health insurance plans. Across the country, private health plans have started creating a new tier within their prescription drug formulary. With the new tier, they abandon the traditional arrangement that has plan members pay a fixed amount, like a $10, $25 or $50 co-pay for a prescription, regardless of the drug's actual cost. Instead, they are charging plan members a percentage of the cost of certain high-priced drugs, usually 20 to 33 percent, which amounts to between $600 ad $800 for the MS disease modifying drugs.

Fortunately, New York has not yet allowed plans that they regulate to adopt this system. However, that could change at any time. This legislation, A.8278B/S.5000B, introduced by Assembly Member Micah Kellner and Senator Tom Duane, and passed by both houses of the legislature earlier this year, would make it illegal for private health plans to create these specialty tiers.

Take Action Today. Ask Governor Patterson to sign this crucial piece of legislation into law.

For more information about this legislation, visit Assembly Member Kellner's website.

Early and ongoing treatment with an FDA-approved therapy can make a difference for people with multiple sclerosis. Learn about your options by talking to your health care professional and contacting the National MS Society at http://www.nationalmssociety.org/ or 1-800-344-4867.

Our postal address is:
National Multiple Sclerosis Society
733 Third Avenue
New York, New York 10017

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                                                                                                                                                   ellie

Two weeks ago I started using a new MS drug AMPYRA. For information about this drug click on the site below.

http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=2586

Wow, you should see me move now!  This is been the most dramatic change for me since I was diagnosed with MS.

Actually I have changed medication or added new drugs before but nothing has had the immediate effect to increase my mobility like this has.

When I first started using Betaseron there was an improvement over time. Then I was given Provigil which has helped my fatigue and Nortriptolene (Pamelor) helped with pain. But eventually Betaseron was not effective and a wheelchair was becoming my principle means of mobility. I had even purchased a transfer board as standing to transfer was becoming more of a problem.

It was around this time that my long time neurologist left the area. I saw a new neurologist and then a nurse practitioner but I was not happy with either of them. I was actually told by the latter that I was too old for the ABC drugs and I was going to ruin my liver.

It was time for another change. I had been researching Neurologists in the area so I decided to try someone I had been interested in but his office had been at a distance to visit. But now that he had a local office he was the natural choice.

I have to admit that he made a first good first impression when he stated that age has nothing to do with the decision on the ABC drugs. He had had good results with changing patients to another drug and I started on Rebif.  He also changed me from Pamelor to Cymbalta for pain and started me on 3 months of 1 time per month 500ml sol-u-med. As I am a Diabetic too that had to be added carefully. For information about the prescription drugs for MS click onto:  http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/treatments/index.aspx

I started getting better and using my walker more again. Then I treated myself to a new flowered decorated cane for short distances when I used my wheelchair for longer ones. I was even climbing stairs. I was doing so well that my Neuro stopped the sol-u-med. But after a time I had a relapse and when I saw him he put me back on monthly sol-u-med.

After a few weeks I was back to where I was before. And feeling good.That was this past spring and I was busy putting my garden in order. Luckily I was better and able to actively weed,plant etc. But over the summer I began to lose my ability earlier in the day and was more tired. It could have been the heat but I was back in the air conditioned house as soon as it got hot.

Then gradually I found that I was back into losing my mobility,cognition and increasingly fatigued earlier and earlier in the day. I would be essentially good first thing in the morning then I would lose it. Essentially I was spending more time sitting on the seat of my walker pushing it backward and then more time in the wheelchair.  I was also having more cognitive problems. My difficulty recalling names was becoming more obvious as well as my being overwhelmed more often.

I was due for my appointment with my neurologist. When I saw him I told him what was happening and he felt that using the drug AMPYRA would very definitely improve the length of time that I could be more mobile during the day.  As AMPYRA had already been denied by my Medicare Part D Insurance Co. we restarted the procedure. He told me to call my Representative from Congress and the NY State Insurance Commission and he would fight for me to have the prescription drug Ampyra .  He also had me make an appointment with the neuropsychologist to assess me for cognition problems.

I did call my Congressman's office and then as there was a delay I decided to call Ampyra to see if they knew  what was going on. And I then also had a week of relapse where my morning mobility was lost too!

To make a long story short I did finally get an approval from my Medicare D Insurance Co. However  there was a bit of a hitch as they only use a mail order pharmacy that is not in NY State.  I use Epic as my secondary insurance which enables me to be able to afford these high priced new wonderful MS drugs.

As I could not use Epic because the pharmacy was out of state I decided to bite the bullet and take advantage that I was now in catastrophic coverage. This meant that I would only be responsible for 5% of the over $1000.00 monthly cost. This I can afford. In January if it's goes up to 25% that could be a different matter.

Well after many phone calls talking to different people each time and promises of it being shipped the next day(I suspect they use call centers but I guess that's our future) I talked to a supervisor and they did ship it the next day.

So I finally started taking AMPYRA. By the first day I was moving faster and by a week I practically ran across our living room.  I essentially walk with no assistive device  now in the house unless I have to lug something from room to room. As my balance isn't all back yet I do use my walker when I get up at night. Outside in the garden I use my walker or I also just walk with nothing. Occasionally, if it's a longer walk I might use a Canadian crutch. But sometimes I can't find where I put it and end up walking around the garden with no assistive device to look for it. To me this wonderful and funny at the same time.

Will this last? I'm not going there. But right now I can see myself getting steadier walking around every day!

All I can say is  Thank You- Thank You- Thank You.

                                                    ellie

I turned on the Today Show last week and listened to a report about the NY Yankees and their HOPE WEEK.  I was just so impressed that I wanted to share it with everyone.

HOPE Week is when every Yankee player, Manager Joe Girardi and his coaching staff and the front office staff reach out each day of a designated week to an individual, family or organization who they felt should be recognized and supported.

This outreach many times took place away from the Stadium. This was done purposely so the Yankees could personally connect with the selected individuals in the setting of their greatest personal accomplishments. And the fact that they did this in this way instead of having a cocktail party or bringing them to a game even with special recognition is what impressed me the most. Many people are uncomfortable with the disabled or underprivileged and keep their distance. But what they miss is the connection made thru empathy (not sympathy) that can change their perspective dramatically.

Below are the individuals. Be sure to click on the link below each picture to read their amazing courageous history.

13 YEAR OLD JORGE GRAJALES SURPRISED WITH A POOL PARTY 

/yankees.lhblogs.com/2010/08/16/hope-week-begins-with-jorge-grajales/

JANE LANG TRIP TO YANKEE STADIUM WITH YANKEE TEAM AND THEN A TRIP AROUND THE BASES

 http://www.mycentraljersey.com/article/20100817/SPORTS0101/8170351/Yankees-take-HOPE-Week-to-Morris-Plains-woman

IT'S THE NY STOCK EXCHANGE, CITY HALL AND THE UNITED NATION FOR KAMARA  FROM SIERRA LEONE

http://sports.yahoo.com/mlb/blog/big_league_stew/post/The-Grandstand-Hailing-our-heroes-during-Hope-W?urn=mlb-263681

THE "BEAUTIFUL PEOPLE" PLAY A GAME AT YANKEE STADIUM

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http://yankees.lhblogs.com/2010/08/16/hope-week-begins-with-jorge-grajales/

HARD WORK PAYS OFF ?2 former homeless sisters are surprised and whisked off for a shopping spree by several Yankees

http://www.nypost.com/p/sports/yankees/hope_week_honors_persevering_girls_YtSq1jQ4ljXtMTZC850GNM

  Let's all do something special for other people who are trying so hard this year.                                                                                                                                

                                                                                                                                          ellie

The ADA covers prevention of discrimination for all kinds of disability issues on employment for people with disabilities. This can and has presented quite a challenge for people with conditions that don't fit neatly into categories.  This was why the amendment to the ADA was past in 2OO8. People with MS are beneficiaries of this amendment. A practical summary of this and the changes in employment accommodation  can be found at:http://hr.cch.com/news/employment/091709a.asp

I am no longer working.. However I did work until I was 61 although mostly part time.  I also had years where I did not work. So I am not currently able to take advantage of the new provisions against discrimination thru the ADA. Over my working years I definitely could have used more  understanding and more flexibility.

I was diagnosed with MS later in life. However, I did have problems that were due to MS years before my official diagnosis. Over the years I  continued to make a lot of accommodations myself so I could continue to work.  I feel the fact that I was able to accommodate my losses myself made a big difference.

  I was a Physical Therapist and I eventually worked as a contract PT so I could set my own schedule. As I was never good in the late afternoon which eventually became early afternoon then late morning I was forced to make changes.

I did a lot of Home Care and would try to have patients close to where I lived so I could pop home take a nap then go out and see a couple more patients.  If I wasn't up to seeing patients even after a nap then I re-scheduled them in on Saturday.

When I worked in Home Care before I became a contract therapist, I made sure that  I could go home after my last patient and do my paperwork at home.  Thus forgoing the trip back to the office when I was usually exhausted.  With other work, I made sure I worked part time (Mostly in the morning.)

When I was finally diagnosed with MS the neurologist stated that yes I had had MS for years, and not to be surprised if I seemed to be losing function faster as I had fewer reserves left. However, he was also sure I would adapt. After I told him my history he stated I had been successfully making many appropriate changes as I needed to on my own.

Not everyone is fortunate like I have been to have a more moderate case of MS and find employment they could find ways to adapt.  In fact in the US only about 40% of people with MS are currently employed. And the current estimates are that only 20 to 25% will continue working until age 65.

The very nature of MS with it's inconsistently from day to day can make it difficult for the employer to hire someone or can limit the jobs that could accommodate inconsistency at work. And a person with MS may not feel confident about applying for positions that they feel they may need to ask  accommodations for.

Another problem is that MS can affect every person differently. Some people may have more problems with vision, pain, balance, tremor, cognition, incontinence or side effects from medications. But the one problem that most people with MS will have is fatigue. This unfortunately can be invisible and is poorly understood yet it is debilitating.  Then there's also the problem of having a relapse and  how can that be handled.

Another obstacle is the fact that it can be a progressive disease. This brings up the longer term question. Will the physical environment eventually no longer be adequate etc. When do you disclose that you have MS?  When might it be time for a career change ?

It is not always easy to be employed when you have MS. Like the disease itself it is a very complex issue around the world as well as here in the US.  Luckily we now have the recent amendments to the ADA.

The current issue of the MS International Federation's publication's is about Employment and MS. It's an excellent issue and I feel that it is a good place to start your research on employment issues and MS.The link to the issue is below.

MSinFocusIssue16EN.pdf

Then I suggest going to the National Multiple Sclerosis Society. They have an outstanding collection of articles to help you with your understanding and decision-making on this issue.

http://www.nationalmssociety.org/living-with-multiple-sclerosis/employment/index.aspx

But above all don't make a quick decision to leave employment. Please don't get discouraged and give in.

Find a career you can really love and fight to stay employed in it. Fulltime, part-time, working from your home, do whatever works best at the time. Do not give  up easily. Being paid to do something your really interested in and your good at is an important part of life. Do not let society cheat you out of it.

                                                   ellie

 20 years ago lives changed enormously for the 54,000,000 people with disabilities in our country.  With the passage of the ADA  legal support and provisions mandated by law in employment, transportation, accommodations, telecommunications and more has helped open doors that were once shut for people with disabilities.  And equally important is the changing of the attitudes of society.

Now that people with disabilities are able to be out and mix with the non-disabled a new understanding is emerging. People are beginning to understand the value of the disabled being fully included in our society.  For more information about the ADA and its amendments go to my former blog at:

 Bush signs ADAA into Law 

For the past two weeks there have been celebrations by all of the societies that are involved with the disability community.  There have also been serious symposiums regarding the status of where we are now and what are the next steps to narrow the gap to have full inclusion of the disabled in our society.

These celebrations and symposiums have also included our government. There was a celebration in the Rose Garden on Monday July 26 featuring prominent people who fought for the ADA.  There were also speakers and many in the audience who are involved in the current    ADA and the disability community.  For more information and opportunity to see the video of the whole ceremony or  just President Obama's speech go to the I'm an MS Activist blog site at:  http://msactivist.blogspot.com/

President O'bama signed an executive order on Monday to increase the number of disabled workers hired by the Federal government.  And the government involvement was not just at the executive level.

The Justice Dept is also heavily committed and involved in equalizing opportunities for people with disabilities.

The Justice Dept has placed a renewed focus on enforcing the ADA.  There is an with awareness that new regulations and updated compliance goals are now needed. Therefore it is going to publish advance notices of proposed rulemaking regarding accessibility requirements for web sites, movies, equipment and furniture and 911 call -taking technologies. These are all appropriate changes in our society .http://www.justice.gov/opa/pr/2010/July/10-crt-850.html

Also wanting to ensure that all Americans can participate fully in a democracy Attorney General Holder said that is why this administration is committed to fundamental voting rights of Americans.

Attorney General Holder also pledged aggressive  enforcement of the supreme court's decision in (" the Olmstead decision&quotOlmstead v LC  a 1999 decision recognizing the right for individuals with disabilities to live in their own communities. http://www.worksupport.com/resources/printView.cfm/376

He also stated that he was firmly committed to holding the Department accountable for encouraging the contribution of employees with disabilities and working to attract qualified candidates with disabilities.

And in the House of Representatives on this 20th anniversary of the ADA Congressman James langevin became the first person in a wheelchair to presided over the house. The speaker's rostrum has recently been made wheelchair accessible through a series of lifts.                   

THE PROGRESS CONTINUES THANKS TO MANY MANY PEOPLE !                                  ellie