ELLIE'S BLOG on Living Well with MS

A few weeks ago I was doing so well. I was making all these plans and then "bam" down again- plans cancelled. But after my monthly sol-u-med this month I was back up making plans again.

What a crazy life! No wonder people look at me perplexed sometimes. I can be dragging myself around too tired to think then suddenly I'm better. I'm not a person you make plans with easily.

Today I celebrate my 75th Birthday. And the idea that I have been here for 3/4 of a century just blows my mind. Also the fact that for more than half of this time I have been living with MS, a disease that afflicts my CNS.

Yet,especially at the beginning of the disease I had not always felt ill. There's no doubt there is an importance difference  between an illness and a disease. Organs have diseases, people have illnesses.  Physicians diagnose disease, patient's suffer illnesses.

Illness is the way a disease complicates the life of the person who has it. Its seriousness depends upon the impairments it causes and how long it lasts.  MS is a chronic disease and it can over time also become a chronic illness that can really complicate your life.

Somewhere along the time line of living with MS most people have that gut wrenching moment that this is chronic and there is no cure in sight. I can remember when fatigue and walking any short distance was becoming a real problem. I felt scared and bewildered. "How could this could be happening to me? "

I had a least a week when I couldn't stop crying and asking why,why me? Since then I have found out that most of us who are successfully living with MS have usually had that moment. The moment when the intellectual awareness that MS is a chronic disease becomes a gut realization that it's not going to go away and you know you have to learn to live with it.

This is when we stop waiting for the cure and reorganize our lives to live within new parameters to manage our illness due to our disease of MS. This is not a negative time.This is a time when we retake charge of our life.

Indeed this is when I started to learn how to live on the MS See-Saw.  I found that to handle fatigue I had to handle my time well and organization was key. I promised myself that I would no longer waste time and energy looking for things or starting too many projects at once. And if I took up some new activity that would take time I had to give up something already on my docket. Everything had to have its time and place .

As problems with cognitive processing (mostly memory retrieval)annoyed me to no end I started using lists and other aids and I am still continuing to find ways to help myself with that. 

I also decided that I was no longer going to be the person who told my neurologist "I would never ever need to use a wheelchair" when he recommended I use one for longer distances. Indeed over the years I have welcomed the decrease fatigue and bodily discomfort with the use of the appropriate assistive device when I needed it cane,walker,wheelchair etc.

And along my timeline I adapted my environment with ramps,wider doors,shower seats etc.as I needed them. And doing so became natural and appropriate.

I also began to truly appreciate the value of rest.  The afternoon nap, resting before events, and planning ahead for a large event absolutely had to include rest before and after.

Lastly but importantly I have found pacing myself with the activities I do throughout the day has enabled me to live a much fuller life.

This doesn't mean that I haven't "fallen off the wagon" so to speak as I'm only human.  But it really hasn't worked to push myself or deny reality so I always come back home to respecting my limitations.

One other factor that's been very helpful in my managing the MS See-Saw and live well has been the advance of science.  The value of the knowledge gained about MS through research and the advent of pharmaceuticals to help us manage our illness better cannot be understated. It seems that it all started with the development of the first interferon drug  Betaseron  to reduce the severity and the amount of MS relapse's and hopefully disability.

I used Betaseron and it was helpful for years then as it became less effective I was switched to Rebif and had a pronounced turn for the better.  I also have had other drugs that have been helpful. For fatigue Provigil, for pain Pamelor then I was switched to Cymbalta which was even more helpful.

Right now my monthly infusions of sol-u-med are also helping.  And I'm looking forward to being able to use Ampra to help with my walking.  But even if it's embarrassing I can't forget my bladder. With the use of Oxybuytnin I don't have to worry about wetting my pants and intermittent catheterization has saved me from repeated bladder infections.

As I now enter the last ¼ of my century I feel very positive.  There is no doubt that knowing that the research in MS is continuing and that new medications are on the horizon is encouraging.  And If getting better is not in the cards for me I do hope and pray that I keep most of what I have now physically and mentally.

I think what's most important remains a loving, supportive family and friends who understand and are willing to pitch in and help when you need it. And of course have things you have yet to do, places you have yet to visit, folks you have yet to meet, books I've yet to read etc..

My message for those younger people starting to live with MS and those who feel like your now on the MS See-Saw remember you still can have a good life. It may not be what you thought it would be but you can make it a good life. A life well worth living maybe for a whole century.

                            Live your life well         ellie

Today 65 countries across the globe are celebrating the second World MS day.  The Multiple Sclerosis International Federation (MSIF) and it's MS society's established last year that the last Wednesday of May every year would be World MS day.

The reason for this is to increase the awareness worldwide of the number one disabler of young people MS. As the average age of which MS is diagnosed is 29 the economic impact of this disease is great.  Total cost varies widely across countries but are substantial in all countries.  The average annual cost per person with MS in 2OO7 was $41,334.  Over a lifetime in high income countries like ours the U.S would be $1.2 million per person. Loss of employment or early retirement is considered the single largest cost factor contributing to this financial cost.  To read more and the Summary report of the Global Economic Impact of MS go to:

http://www.msif.org/en/get_involved/world_ms_day_2010/economic_impact.html

  And for more information on employment and the results of the latest survey click on the link below:   http://www.msif.org/en/get_involved/world_ms_day_2010/survey_results.html

To understand the in-depth commitment and goals of the MSIF and the MS society's a reading of the "Principles to Promote the Quality of Life of People with Multiple Sclerosis" would be a beginning.  This document starts with the Forward by J K Rowling the author of the Harry Potter books. In the Forward she explains her mother's difficulties with MS and the effect that it had on the family.                                                                      Her quote,"Quality of life is something we must all fight for in every country around the world, and to fight we need tools that are appropriate to battle ahead."To read the document go to the link below:

http://www.msif.org/en/resources/msif_resources/msif_publications/quality_of_life_principles/principles_to_promote_the_quality_of_life/index.html

This indeed is what is being promoted by the MSIF and its MS Societies around the world.  In the United States the MS society has worked hard to encourage Congress to have an MS Caucus in both the House of Representatives and Senate.  These caucus's are where our legislators can gain information about the impacts legislation can have on people with MS or other disability's.

Representative Michael Burgess of Texas (Co-Chair) of the congressional MS Caucus speaks to his colleagues about MS In the USA and marking World MS Day 2010.

For more information on World MS day and Multiple Sclerosis go to the National Multiple Sclerosis Society web page::     http://www.nationalmssociety.org/get-involved/events/world-ms-day/index.aspx

                                                                                                                                                                          ellie

Is our glass half full or half empty ?

My neurologists recently submitted a request for Ampyra to my Medicare D Prescription Drug Plan  This is a new drug to help people with MS walk better by assisting the nerve message to go along damaged myelin sheaths. I was denied this coverage because it was not on their formulary.

As this drug costs over $12,000 a year it's obviously out of my budget. Therefore I will not be able to reap the benefits from this drug without some help to purchase it. As it's just been approved I understand that it may take time for it to be approved by prescription providers.  I'm hoping that they will fast track it on their formulary's.

This issue brings me to the core issue of drug costs especially for people with Multiple Sclerosis. There has been a drop in the costs for the average person who takes prescriptions drugs due to the increase use of generics. For the family budget this is a very big plus.

However, it's only in the past 10 years that prescription drugs have been developed specifically for MS. And these prescription interferon drugs (disease modifiers), Betaseron, Avonex, Copaxone and Rebif are widely used by those who can afford them($20-30,000/year) thru their drug coverage.

These drugs are all Biologics. Developing generics for these biologic drugs has been very slow. And an additional problem for those of us with MS is that these drug companies also have a very long extended time with a drug to be exclusive.  So generic drugs are not available. And I should add that these drugs as generic's  will not come cheaply.

For the first time people with MS had hope that they could moderate the downside of MS with these interferon drugs. And they have been so helpful to many people with Multiple Sclerosis. I myself have benefited from Betaseron and now from Rebif.

Now because of more understanding of the biology underlining Multiple Sclerosis with advanced technology more drugs to help us are coming onto the market.

The latest Drug is an antibody Tysabri which is also used for Crohn's Disease. In both cases it's used only when the 1st line drugs are not effective. This is a once a month intravenous infusion therapy in a clinic, hospital or MD's office.The cost is about $32,000 a year plus the cost of the center where the infusion occurs.

Yes,this is a very exciting time for people with Multiple Sclerosis. Just thinking of the positive improvements in  lives that these new drugs can bring to us is mind-boggling. Yet there is no doubt that our glass is half full.

The downside to all this is their costs. When you think of the way our Healthcare System is structured a person with MS is at a real disadvantage.

Our Health coverage comes through the workplace.  If a person with MS is working for a large company the cost of their drugs is spread out over all the employees. But if they are working for a small company there's more of a problem. Small companies do not have the numbers to absorb the higher costs easily. And many small companies do not offer Health Care coverage at all.  And if part time work seems like that's all a person can handle the chances of having Health Insurance Coverage is very rare. To insure yourself would be prohibitively expensive if you can get the insurance coverage at all.

I'm hoping very sincerely that this new Health Care Bill that passed will help to even things out.  We have such a indiscriminate way of giving people Health Insurance in our country. If you work for a large company you are usually covered. And even here how much you have in co-pays or limits varies. Working for a small company is iffier and self employed even more so.

Of course at age 65 or two years after you have been approved for social security disability there's Medicare. However that certainly does not cover all the costs. A lot of States have a program that helps seniors with limited income with the expense of Prescription drugs like Epic in N.Y.. Once you've lost all your assets trying to pay for these drugs or you can no longer work there's Medicaid.  This also varies from state to state . This last line of defense is good to have but wouldn't it be better to have help before you lose all trying to pay for the drugs?

This situation is very depressing and this is why I personally was in favor of the recent Health Care bill that passed.  This bill has much to offer us.  However, the details of how it will be implemented are being formulated right now within each of the agencies involved in it's implementation.

And of course the Health Care lobbyist's are in overdrive. The drug companies, the healthcare plans, the hospital's, the doctors etc. all want to protect their income. Which I respect. What I don't respect is gross profits made on the backs of people not being able to have healthcare. I personally feel that it's immoral.

But there are things we can do to help to make the implementation of this new legislation benefit us. We have our own lobbyist the MS Society. And the NMSS is really working hard lobbying for us at this critical time.

For example people living with MS could save thousands of dollars a year on their needed prescription medications through the legislative bill H.R. 3799. This bill would cap monthly out-of-pocket costs for prescription drugs at $200 per prescription, or $500 per month for those taking more than one medication. The National MS Society participated in a national call-in-day on April 13 along with many other patient advocacy groups.

If you have concerns like I have and if you are not an MS Activist you must become one. The  MS Society is on top of what's going on in Congress and will lobby for us and our needs.They will keep you informed and you can participate on many different levels to assist their efforts in helping us. For example you will be asked to call or e-mail your legislator on these critical issues.

They make it very easy. You are encouraged to comment on how the issues personally affect you or people you know.  Or you can just sign it after you have read it of course. But this is something positive you can do.

So go to  www.nationalMSsociety.org/MSactivist       and sign up become involved and do it at the level you are capable of . That's all anybody would want.

                                                      ellie

   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