ELLIE'S BLOG on Living Well with MS

With a little creative thought and some ingenuity anyone with a disability can find a way to adapt their environment so they can successfully have a garden that they will love.  Whether it's a beautiful garden with shrubs, flowers(annuals- perennials) or vegetables you can realize your dream.  A small medium or large garden can be done in pots, raised beds or in the ground.  All you need is the desire and some seeds or bedding plants, good soil, mulch and of course the sun.

However, heat from the sun for people with MS can be the first problem to be conquered. It's a result of the damage to your myelin sheath creating a neurological problem.  So when the temperature increases causing your body to heat up your functional physical ability lessons or just totally goes.

I know this personally. Just the other day I was standing picking lettuce in my raised lettuce bed at 3:00 PM and the temperature was getting close to 90.  My legs told me "you need to sit in the shade now".  But I pushed myself and got up the steps to my bridge-ramp and luckily my wheeled walker with a seat was right there. I was able to push myself backwards into the house.  I then flopped into my wheelchair and cooled myself down with cold water. But it took a few hours before I was up and walking again.  I had no business picking my lettuce in the afternoon in the hot sun I know better.  I usually pick it early morning before its hot then I'm fine.

The point of having a garden is to be able to enjoy what you've decided to plant. Whether it's the smell or beauty of your flowers or the taste of fresh vegetables right out of the garden. You don't want to ruin it by becoming overtired through too much heat or unnecessary effort.  So be sure you have a shady area on a deck or just a grassy area that you block off as your haven to relax and refresh yourself while watching the birds and butterflies visiting your garden.  This time nourishes the soul and revises the spirit!  In fact planning your shady retreat areas must be a central part of your garden plan.  And if your garden is part of a whole family adventure like mine is make sure that they know how critical it is for you.  This is not the time to put up the big front or get into that I don't want to bother people  mode.

And again I am going to use my new garden as an example.  I'm sitting on my chaise on the deck in the upper right hand side of the picture.  It is a very shady area.  Thanks to the branches of the  old evergreen trees  of my next door neighbor which hang over our deck.

Notice the umbrella over the table for shady eating.  To the far left is a brick patio with raised beds for vegetables and flowers.  Behind that is a very shady area under a big old maple tree that's perfect for potting  plants and staying cool.  There are other areas further forward that are not visible in this picture.  But  you can see in the next picture far back on the left on the side of the house there is another old evergreen tree and  the area under it is also very very shady.  And the next picture below which shows my herb bed and my raised lettuce bed to the side of my bridge ramp from the deck to our house.  Close to the house is a very shady area where we keep a lot of our utensils for gardening.  My son plans to put a roof over it which will also make it shadier.  He also plans to put a roof over the other side of the shed which you can see in the other picture.

As well as having shady areas available and planning your garden time early or late in the day when it's not hot you can't forget to use cooling device's.  I had been using headbands and wrist bands as well as neck scarves in which there were crystals .  When you soaked these in cold water they expanded and retained the cold for quite awhile.  But this year they're just not as effective  so I'm purchasing other devices. Naturally I went to Google and after checking sites I found the  USA Tech Guide site.  On it they have 28 web sites that you can check things out  to find sources.http://www.usatechguide.org/techguide.php?vmode=1&catid=187     I decided to go with gel inserts.  I used two different sites. On one I purchased a loose fitting inexpensive vest. On the other site I purchased head ,neck and wrist bans with gel inserts. I'll let you know how they work.  Of course ice cubes or a spray from the garden hose helps too!

On my next blog which I going to put under Disability I'm going to show how my sons made my raised  lettuce bed. This has been absolutely marvelous for me and could be for you too!                        Ellie

March 12-18, 2012

I always like to do something for Multiple Sclerosis Awareness Week. This year I  sent in to my local newspaper The Saratogian an article I wrote to be submitted to their Readers View section. The following is the article I submitted.

As a retired physical therapist living with multiple sclerosis over many decades I have found that most people do not understand the disease and how it affects people who have it.

I find this very understandable as it is a complicated disease that affects each person differently. You may know a person that has trouble walking or someone else who uses a cane, walker or wheelchair. Or maybe it's a person who has vision or cognition problems. Or all of those problems and more.

We can seem to be very inconsistent from day to day. Yet at another time we may not be doing well at all for weeks (an exacerbation) then the next time you see us were doing much better (a remission). It can be confusing but it's hard on us too. We do not like not being able to control what's happening with our body. But we do try to do what we can when were able.

Sadly most people with MS will become more disabled over time. It's a lifelong disease that's first diagnosed in people between the ages of 20 and 50. Women are affected more than men by a 2 to 1 ratio. And it lasts for the rest of a person's life.

MS is an auto- immune disease where the white cells attack the protective covering (myelin) over the nerves in the Central Nervous System (the Brain and Spinal Cord). It disrupts the normal conduction of energy to the peripheral nerves which activate the muscles. The attack on the nerve insulation may be one for vision, cognition, bladder or anywhere on the motor or sensory nerves. Usually speech, swallowing and bowel problems come later as the disease advances. However, fatigue as well as pain is present in most people with MS from the beginning no matter where it's located.

A person with MS can eventually be limited in their working ability due to fatigue or many of their other symptoms. As MS is also a very expensive disease this is a double whammy. Assistive equipment and adaptations in their home as disability advances must be purchased and made to increase their function. Health care costs including newly effective prescription drugs can also increase. Yet Hospital admissions for MS have decreased thanks to the new drugs especially the Biologic Interferon's.

Unfortunately, these drugs can be very expensive especially the Biologic Interferon's which are most important to use if you have relapses. The average cost of one of these drugs is $41,000 a year.

Now of course this is where the type of Health Insurance that you have makes all the difference in world. And having a prior health condition preventing you from getting insurance is a killer. Unfortunately not everybody who has MS has great health insurance and can afford to have these drugs to help slow down relapses and progression of the disabling effects of MS. Hopefully this can be changed.

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