Living Well With MS & Disabilities: Ellie's Blog

Cures?..  Total relief from  MS Symptoms?..  Progression prevention? The answer is no to all of these. 

We with MS do get a shorter duration and decrease frequency of a relapse which is helpful.  And there does appear to be a decrease in the progression of the disease  and irreversible damage from these drugs. But the response is individual. Some people get more help from them than others. But when it comes to a cure these drugs are not it. It looks like the "cure " is a long way away.

So why are these Interferon's and other drugs so expensive if they're not curing us or keeping relapses and progression totally under control?  People with MS are taking these drugs every 1-3-7 days or every month for years and years. And the costs are increasing yearly on all the drugs.Whenever a new drug comes onto the market of course the price is higher.  But then all the others increase their prices too. It's like a cartel.

There is finally increased reporting in the National Media as well as Professional Journals and web sites regarding this issue.

If I mention to someone that my MS drug costs (especially my interferon) are awfully high. Their response sometimes is to question me why I don't take generics. When I explain to them there are no generics and tell them the cost of these drugs ($35-45,000 a year)some people don't believe me. They can't understand how a drug could cost so much if it wouldn't be a cure or at least prevent relapses or progression by taking them.

I myself started on the MS interferon drug Betaseron in the late 90's when it cost $10,000.a year.  It didn't cure me but it did decrease the length, severity and frequency of my relapses.  However gradually over a 10 year period it became less effective and I was progressing.  I happened to change neurologist's at this time and was switched to a different MS interferon drug Rebif .

This again slowed down my progression, decreased the frequency and severity of my relapses and I was able to gain back some the functional ability that I had lost.  So to me these drugs are a miracle!!  They do give me and my family a better life. A life which I do not want to lose. However, when I stop to think of the cost of these drugs I am beginning to question how cost effective are they for what they are giving me.

By the time I had reached the age of 60 I found working even part time  with MS very difficult.  So I stopped and went on Social Security Disability. Then two years later I was in Medicare.  I read in one of the MS magazines that Betaseron was offering people who did not have prescription drug coverage like those on Medicare financial help. The cost of the Drug Betaseron was then $1200 a month with the last two months free.  This was wonderful and as I was also taking some other expensive drugs it helped immensely.  Then when I turned 65 I received a phone call from the Betaseron Financial Assistance program. I was told they could no longer cover me because I was now available to receive NY State EPIC program for Seniors. And from my financial statements they felt I would fit into the EPIC program.

I did apply and from then on until January 1 of this year I received  total coverage of all of my drugs at an extremely reasonable co-payment price. This was offered along with either a quarterly fee or a deductible dependent on your income.  And as drug costs were skyrocketing and my need for prescription drugs increased as I also became a diabetic I would thank God for Epic in my prayers at night. 

There was a lot of talk when Medicare D was passed that Epic would not be able to be used with Medicare D.  This was a quandary but Epic continued to cover us until it  was determined that all State's Prescription Drug programs for seniors would be able to wrap around the Medicare D program.  And when I joined Medicare D my costs went down slightly. But Epic's cost for my drugs would have gone down dramatically.

As cuts were occurring in States across the country due to the recession I did wonder if we might have to pay a larger co-pay or fee . But Epic kept saying we will always be here for you. However this year Governor Cuomo's budget dropped a bomb by essentially gutting Epic. They are now only offering help in the doughnut hole not a wraparound. The first prescription drug I filled this year was Rebif. I was immediately in the donut hole.

All the articles I read reported that seniors would only have to pay $1000 more a year for their drugs.  They certainly weren't talking about people with expensive drugs like MS or Cancer.  My drugs will now cost me over $5,000.00 a year.  And most likely  more because the prices keep going up. The AARP Bulletin had a long and thorough article on this in their Dec. 2011 Bulletin . aarp.org/bulletin .  They stated they plan to address this and try roll back the cuts when the NY state legislature reconvenes in January . Meanwhile they suggested people check out NeedyMeds.org  or the assistance programs of pharmaceutical companies or charities.

My research on alternative ways to lower my drug costs is bringing up more questions than answers. This could become a full time job for a person with 2 chronic diseases and who take many drugs. You have to look for help for each drug on different sites as requirements for eligibility are all different and having Medicare D doesn't help. For me my MS interferon drug  Rebif is foremost as it is the most expensive.  If it was just my Diabetes drugs that would be manageable. But it's the MS drugs that just bust the budget .

There is research going on now where they are using 2 drugs together to increase effectiveness. And they are speculating that a cost of $100,000 might be too high for most patients with MS.  You think so...Really!!

In my research for checking my Medicare D plan I also researched what could be done about the outrageous costs. I knew most European Countries and Canada pay much much less for these drugs. And I had heard that the VA costs and retired federal workers too pay less for these drugs. So why are the disabled, seniors and disabled seniors on Medicare paying so much?   If is competition that bring down prices it's not working . The prices in the private sector are all going up!  And as they are manufactured for all countries the same why are we paying so much more than everyone else?

I've read many articles about this. But the article that seem to cover all my questions was a recent article by  Tom Valeo in the American Academy of Neurology Medical Journal.

A recently published study by the ANN concluded that the cost of the MS drugs in the U.S. lowers their cost effectiveness scores significantly.  They were not saying they were not effective or that they shouldn't be used by people who need them . But it's the costs of these drugs that are the problem.  They did a study of 910 patients for 10 years and determined cost effectiveness using a complex formula . They found that lowering the price of drugs to the levels in other countries would improve cost effectiveness markedly here in the United States.

Dr. Corboy of the University of Colorado School of Medicine and a Fellow of the ANN reported that the cost of these drugs have almost doubled since 2008. (I look back to 1998 where it's a 3-4 times increase).   Dr. Corboy feels one of the reasons for the high cost of medications is the fact that Medicare is prohibited from negotiating prices with the drug companies as other nations do.

But here in the United States  the Veterans Administration, the Department of Defense, the Public Health Service, and the Coast Guard may negotiate. And they do receive dramatic discounts. "For them glatiramer acetate and the interferon's cost about $14,000 as opposed to $41,000 per year" Dr. Corboy says.  And he goes on to state that the costs are even lower in Canada and in Europe. And even if you do qualify for financial assistance the cost to you can still be too high for you to be  able to afford the drug. The last remark in the article by Dr. Corboy sums up my feeling exactly.

" It's like reverse capitalism.  In other businesses, when competition goes up, prices usually go down but it's the opposite with drugs." -_JOHN CORBOY.M.D. To read the informative article that much of my information came from go to:

<http://patients.aan.com/resources/neurologynow/? event=home.showArticle&id=ovid.com:/bib/ovftdb/01222928-201107060-00005

This is a problem that needs fixing.  Up until 15 yrs. ago there was no specific drug to slow down relapses and progression in MS. Then we had Betaseron, followed by Copaxone, Avonex, Rebif and Tysurbi and now Gylenia. This is so promising. And there are many more drugs in the pipeline. But will their costs prevent many of us to be able to take them and live better productive lives? With all my heart I hope not!

Well it's time to take my expensive interferon injection:

It's too expensive but I don't want to give up what it does for me!

Have a good 2012 everyone.

ellie 

It's hard to stay up when MS is pulling you down.  Whether it's pulling you down due to lack of energy including that terrible MS fatigue or because you haven't come out of an exacerbation speedily yet. Lets be honest you can be upbeat and positive for only so long and then it's gets to be difficult. And your veneer is coming off and  you know you're not any fun to be around. 

I find that at this time I gravitate to a little more spiritual reading and my poetry  books are open again as well as trying to take time to just be quiet and meditate.  It does help. What also helps is trying to look extra nice every day  adding favorite jewelry or scarfs to my wardrobe which I coordinated nicely with color.  Of course I'm not going anywhere. I'm just trying to look nice for myself and maybe my husband too.

This morning when I woke up it had snowed and covered the  very tall old evergreen trees around our area. The snow was wet and it was just clinging and dripping from the big branches. After a snowless dark winter it quite took my breath away. And as the local kids were going to school they were joyfully scooping up the wet snow and rolling them into big balls.

Then I went on to my computer and looked through my messages and found the MSIF mailer.  They had a new edition on fatigue which was both interesting and depressing.  But the next article was very uplifting. The MSIF World MS Day film "Beautiful Day" won second prize in the Social Spot award in Germany.  If you haven't seen this short film do it now!  It helped make my day today. It could help make yours too!

Beautiful Day

And to add to your enjoyment go to my son Sean's video 1st episode of  "Sage The Mage". Then invite some children to watch it with you. I guarantee your mood will be lifted!

Sage The Mage

enjoy,  ellie

RELUCTANCE

To go with the drift of things.

To yield with a grace to reason.

And bow and accept the end.

Of a love or of a season.

Robert frost

This is one of my favorite poems and many times I refer to it.  I remember all the lines and repeat them to myself when I need them. 

I think it keeps coming back to me because in many ways people with MS live in many different seasons.  It also reminds me of my mother.  And then I think of the summer season's we spent in our cottage on the beach.

Here I am with my younger brother Bill and sister Ruth

Every year when we arrived after school closed we would rush to see what the Fall, Winter and Spring seasons had done to the landscape. Had the ocean storms and the winds drifting the sands changed it. Was the sand dune in front of our cottage higher or lower?  We played all kinds of childhood games on that dune in front of our house. And the height of the dune affected those games we played.

Then we would rush to see how  the brook that ran from the pond to the ocean had changed. When we were young the brook was very important. We learned to swim in it. When we could swim safely in the brook we could accompany an older brother or sister to the ocean to swim. But the big thing with the brook was how deep would it be as it opened onto the ocean. There were times when it's mouth opened onto the ocean with deep water.And then we could dive from the sand banks into the brook. At other times it was just a profusion of rivulets.

So depending on our age the situations could be perfect or disappointing for each of us. And if they were disappointing we would moan and complain until my mom would sympathetically point out we couldn't change what nature does. And maybe we should put our energies into getting around the situation with a little creativity.

We who have MS also have seasons in which we are at natures whim.  And the season's of MS can be very different in each of us and in how it effects our lives. This requires us to be patient and also learn to be creative to help us to go with the flow.

In my case with my current meds I usually have a best ever season which can last for a month or two . I can walk 400-500 steps, my arms and trunk are great and my thinking is good. At this time I can do so much more it's amazing.  I'm in a full remission.

Then I have another season where I can only take a step or two,  sometimes the arms and or trunk are really bad also. And I'm just plain exhausted, cognitively spent as well as really achy.  And that can last 2-3 days or a week or more. I'm in an exacerbation.

Then  a third season where basically I start to get better but it's kind of of 12 to 20 steps, and the arms and cognition get better as well as the fatigue level.  But it doesn't last if I do any activity all.  Rest will help the return of some of what I've lost but never all of it. 

And then there's the fourth season where I slowly get better up to 80 to 300 steps but then the next day I could be down to two steps. But then it's back up again . The same happens with my arms,trunk,cognition and fatigue levels. I call it my up and down season .

I have found that if I try to be as active in my great season when I'm in an up and down season I only  defeat myself. This is the season where I really can't plan ahead. And the one where I probably can have the most disappointment in my life socially.

If I am in the real down season I know I just have to rest and I'm too fatigued to do anything else anyway. However, I know it doesn't last that long and I will eventually get better.

When I'm in my middle type of season where I'm better but not all better I can plan ahead many times to go out and do things if I rest the day before and before I go out.

When you have MS you have to learn to adjust and go with the flow of the season your in. At times this can be very difficult.  Not only in the activities that you normally do but those special extras you hoped to do. It also has a big effect on your family, friends and on planning socially.

I remember talking to an old acquaintance at a preview of an art show at our local college. She knew I had MS (I was in my WC) and confided in me the concern she had of the difficulty she had in maintaining her friendship with 2 old friends who also had MS. She stated she did not want to lose their friendship but they varied so much from time to time it made it difficult to plan. One friend sometimes was walking and the next time in a wheelchair. And with her other friend it was her cognition that varied that made it just as difficult to plan . And of course there was the question when they were good when would the fatigue kick in.

I felt she wanted me to tell her how she could handle it better. I tried to but there's no special way. I suggested to try to understand and go with the flow or drift of her friends disease. Try to be there when they were really not good and let them know you understand and you'll be back when their better. Also let them know that when they're in a really good season you'll try to be there to do things with them.  She looked at me and said: " It's not easy for you and other people with MS is it? "

It's true it isn't.  I was out lately for dinner with my husband and his tennis friends. It was a good season and day for me I was walking with my walker and it was nice. And then a couple mentioned to us that they would like to go out to dinner with us some time. Of course we said we would love to. And we would.  Then of course a couple of days later I went back into a relapse. So I'm hoping they won't call until I'm out of it. Then I don't have to decline and not be able to set a definite date. And if I feel up to it but need my wheelchair they will be people who can just go with the flow of what nature's doing to me.

Have a creative and happy New Year 

ellie

My recent blog is about socializing well with people with speech  problems during this holiday season.Over the past few years I have talked of other people affected by disabilities. I have listed them below for all to re-read or read for information.

REMEMBER THE CAREGIVERS OF THE DISABLED THIS HOLIDAY SEASON

BE SURE TO REALLY INCLUDE PEOPLE WITH PHYSICAL DISABILITIES THIS HOLIDAY SEASON

BE SURE TO REALLY INCLUDE THE HEARING AND VISUALLY IMPAIRED THIS HOLIDAY SEASON

Thanksgiving with family 

Have wonderful Holiday's with family and friends.

ellie

The Holiday Season is a time for meeting with new and old friends in your home or at outside events.  Whether it's a family, community or other special holiday event chatting and talking is what we mostly do at these events. This year you may meet someone new or someone that you might not have seen for awhile that has changed since you last met them. And as my blog is about disability of course I'm talking about someone with a specific disability.

In this blog I want to talk about people with a speech disability.  Actually to be more correct : a speech disorder or a language disorder.  A speech disorder is when a person has difficulty pronouncing sounds or articulating. Stuttering is an example of a speech disorder like in the movie "The King's Speech".

Recently there was an article and video in the news by a courageous young man who has a stuttering problem. When Philip was told by his teacher that he was not to talk in class as she felt that his speaking was disruptive he didn't do what most people with a stuttering problem would have done, kept quiet. He fought back.

For more information see the article  from the NY Times .   <http://www.nytimes.com/2011/10/11/education/11stutter.html?hp        

And when you do be sure to click on his YouTubechannel .

The other speech disorder category is  Articulating Disorders. This  can be a simple childhood difficulty in saying certain vowels or consonants. But in adults it is most likely a motor speech disorder (Apraxia) . Here the persons brain and their oral muscles required to make sounds are not in synch. This can be due to a stroke,traumatic brain injury,dementia,tumors and progressive neurological disorders like Multiple Sclerosis.

The language Disorder category can be divided into a receptive or expressive disorder.

A receptive language disorder is when a person has trouble understanding others . This is caused by a severe injury to the brain by trauma or disease.

An expressive language disorder in a person means that for them sharing thoughts, ideas and feelings in a fluent manner is difficult. This can be due to a medical problem like a brain trauma or stroke resulting in a fissure. Or the cause can be unknown. It can mildly affect them or be more severely limiting.

A recent example is that of  Rep.Gabrielle Gifford who was shot on Jan 8, 2011.  As a result of the gunshot to her head her speech as well as her motor ability was affected. Below is a video from the Huffington Post with Rep.Gifford speaking. Remember she has come a long long way with hours of therapy. And she is very lucky to be alive.

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As a physical therapist I have worked with many patients or clients who had speech problems for many decades of my life.  People with strokes, multiple sclerosis, ALS, Parkinson's,traumatic head injuries and young children with developmental disabilities. Many of them had speech disorders and or language disorders. I wish I could tell you that I found it very easy and did a wonderful job in understanding and working with them.

The truth was I had a lot of difficulty at first and had to learn to listen carefully and not be afraid to say would you repeat that? I want to understand you.  It's my fault not yours. And over time I did much better.

I remember going to a lecture where a lawyer who had cerebral palsy also had a speech disorder. Her lecture was about the disabled and the legal system.  At first I couldn't understand her and felt angry, frustrated and annoyed. But I wanted to hear what she had to say .  So I basically zeroed in (Zen like) and listened very carefully. And 10 minutes into her lecture I heard everything she said and understood it all. In someway it's similar to listening to a person with an unfamiliar accent.

When the lecture was over I went to lunch with the other people at the lecture. We discussed her speech disorder and many of the members there also had the same problem I did.  Some of the people were not able to understand her as well as I did.  Others didn't have a problem at all. Those that had no problem  were the people who worked with the developmentally disabled and had accustomed  themself to listening and understanding people with this particular speech pattern.

But they all felt the lecture was well worth it. And everyone had the greatest admiration for her. In fact this was 50 years ago and is still very much in my mind.  I guess she made a lasting positive impression on me.

I also have a son with a mild neurological problem that affected his motor skills and his speech. The motor skill's are hardly visible now that he's become an adult. But except for bike riding he's not into sports. But speech can still be a problem.  His problem is in expressive language. He's very bright took advanced placement courses in high school and graduated from a top college. But he can not fluidly express his views or opinions easily unless he prepares ahead of time. The place where it's most frustrating to him is when he's at social events which he does go to. And it's because you  converse many times in groups where you are expected to speak fast back and forth. If you have to organize your thoughts before you speak so your speech is fluent people have moved on.

Ironically with my multiple sclerosis I can also have a speech problem called dysarthria. Because of weakness in the oral muscles the co-ordination with thoughts being expressed in speech become slower and can actually start to slur. But my biggest problem is word finding which to me is really disruptive in a social situation. It's beyond the "senior moment" category.  One of the things I found that large noisy groups tired me and made my speech and word finding worse. Discussing this with a Neuropsychologist affirmed my decision to look for small groups and rest always before I go out and need to converse.

I do understand my son so much more now that I have a problem myself and have greater respect and admiration for how well he's done with his life.

Being able to handle your own speech problem is critical to a full life. Just as the person with stuttering did most people with speech problems have years of speech therapy. Which is very helpful for them like with Rep. Gifford. But it is not always a cure. Therefore learning how to handle your speech idiosyncrasies is critical. It is important for both the person with a speech problem and the person your talking to. To communicate you must work together to improve interactions. Here are some tips for both speaker and listener.

    Tips for the Person With A speech problem

 Introduce your topic with a single word or short phrase before beginning to speak in more complete sentences
    Check with the listeners to make sure that they understand you
    Speak slowly and loudly; pause frequently
    Try to limit conversations when you feel tired, when your speech will be harder to understand
    If you become frustrated, try to use other methods, such as pointing or gesturing, to get your message across, or take a rest and try again later

Children may need additional help to remember to use these strategies.

Tips for the Listener

    Reduce distractions and background noise
    Pay attention to the speaker
    Watch the person as he or she talks
    Let the speaker know when you have difficulty understanding him or her
    Repeat only the part of the message that you understood so that the speaker does not have to repeat the entire message
    If you still don't understand the message, ask yes/no questions or have the speaker write his or her message to you.

  I also asked my son to write a little about his own experiences with his speech  problem, here's what he had to say.

These are my main problems: when I'm trying to talk while working out what I'm going to say, I can have a tendency to insert filler words and sounds when the specific words aren't coming together right. Alternatively when I have exactly what I want to say worked out, (like when the topic is one I'm familiar with) I can start talking faster and louder than is appropriate.

The main thing I've learned in trying to improve how well I can talk, is the importance of listening well. I've had to practice condensing what I say into smaller bits of speech, which helps me avoid both cascading filler words, and creeping volume. The only advice I can think of if you're talking to someone who has a problem like mine is not to be afraid to say, "You're sounding a little incoherent, do you need a moment to compose your thoughts?" or "Could you talk a little quieter?"

When dealing with someone with a speech problem, don't be afraid to talk about the problem if it will help you understand each other. Remember, speech is only the method. The goal is communication.

Have a wonderful Holiday Season!

ellie