MS

   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

I've been thinking a lot about balance lately. Probably because I feel that I'm fighting hard to stay in balance.  When we think of multiple sclerosis and balance safe mobility is what comes to mind.  But the balance I'm talking about is more than just safety in mobility, although that is critically important.

I have found over the years that to successfully cope with the ups and downs and more downs of Multiple Sclerosis having control of balance in all spheres of your life is critical. Control of your mobility, energy, emotions, and being able to do the activities that you want to do make such a difference in your life.

And the latter is what I want to talk about here. With loss of mobility and decreased energy (and that insidious MS fatigue) you lose time to do all you want to do. You find that how you spend your time, what you read, go to see,things you do is so dependant on MS.  When I was young and raising a family and working, gradually I was able to do less and less of what I wanted. My time was eaten up by my family and my work. Before I retired fully at 61 I had no energy left to do much of anything else even when working part time.

When I first retired I suddenly had all that missing time. I found myself reading books that I had to wanted to for years. And to take up activities and hobbies I had given up that I had no time for like gardening.  I also took up learning how to use the computer.I've gradually been writing my family history which I share online. This family history was very helpful when we lost both a younger sister and an older brother within a year.  We share photographs, old family stories and memories. I also use the computer to make my own cards so their more personal.And of course there is e-mail.

These activities are ones I am able to pick up and do when I'm good (in a remission and my energy is up)and when my energy lags the project will still be there to pick up again.  

But the one area I found that wasn't as easy was going back out and being part of a group again or picking up with old friends.  As MS is inconsistent from day to day or hour to hour making plans was and still is difficult .  I was also losing mobility. In 15 years I went from using a cane to a walker to a manual wheelchair then an electric wheelchair.

A former patient of mine who had Multiple sclerosis called me when she heard that I too had multiple sclerosis and asked if she could be my friend.  In our conversation she mentioned that I should not to be surprised if I lost friends. She was right.When you can't plan, are in and out of the social scene and so tired so much of the time it becomes a problem.

Late last winter I changed doctors and meds. Then in the spring I went into a marvelous remission. I was able to go back to using a cane or walker for short distances.  I also had much less fatigue.  This new me decided to use my increased energy to do more with people like visiting my family, trying to renew old friendships and to meet new people.  I never understood the Barbara Streisand song " People who need people are the luckiest people in the world".  Being more isolated and away from people due to MS I now understand.

 

So when I went into a relapse again in the end of September I fought it. I tried to keep doing things the same as when I was in that wonderful spring-summer remission. Of course I couldn't and I just made myself more tired, achy and miserable. I was walking or wheeling around the house saying I'm just so tired ..I'm so tired. Then I began to think to myself just saying it had to make me more tired! 

Recognizing that a change of attitude was needed I decided to take up meditation again. And while meditating I remembered the Buddhist philosophy of unhappiness. They state that many times we cause our own unhappiness when we cling to what had been  making us happy and can no longer be.

Admitting to myself that yes I was in a relapse ( and the thought that maybe I would never get back to where I was in the summer is what was really bumming me out).  But as I meditated the reality that even though I was in a relapse I was still better than I had been for years. I certainly had survived being much worse. I knew I could use what I have learned during those years when I was not as good.. 

This realization really helped me. I felt I could work on  starting to get back into balance again. And without the baggage of fear of what might be, I knew things would be much easier.

So when I felt that fatigue coming I stopped what I was doing and rested. I didn't wait until I was collapsing. I found that just as little as 15 to 30 minutes could help.  Then I could get up and do some more things.  To be honest I'm not doing as much as I'd like. I'm trying to prioritize what's really important to me and what I can let slip. But the one very big plus is I'm not walking around in a state of exhaustion ready to snap at people all day!  I'm enjoying more what I'm able to do.

A perfect example of how well this can work and help                               you to do what is really  important to you was when I went to church this past Sunday.  We go to an Episcopal church with a sung- Eucharist service.  We stand and  kneel and sit and stand and kneel and sit again and again.  We sing hymns and response's as well as praying  and listening. It's a beautiful service in a beautiful church with wonderful people but it's a physical event for me.  This spring and summer I was able to stand and sing out those lovely hymns I love as well as  participating more fully in the rest of the service.  But the last few times I went I tried to do this which I couldn't. And because I wouldn't admit to myself that I was becoming totally exhausted by trying I missed a part of the service which was important to me. That was "fellowship" going to coffee afterwards and talking to other members of congregation

So last Sunday I listened to my body and when the fatigue started I stopped and sat till it passed.  I still participated in the church service I just didn't do as much standing and sitting, kneeling  etcetera. And I made it over to coffee to chat and reconnect with people.  And then when I came home I took a nap.

 

We're having my nephew his wife and their two children over for Thanksgiving.  I'm putting this whole rest properly and prioritize routine in place.  If something doesn't get done it doesn't become an epic event. What matters is that I'm rested and there is food on the table(thanks to my son's) and we have a happy day with family and were all rested.

I hope all of you will do the same thing knowing your priorities and what's most important to you and then follow through. Have a wonderful Thanksgiving with your family and friends.

Stay well rested!!    Ellie

 

 

 

 

 

 

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

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

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

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

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

 

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

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

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

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

                          ellie

Pain and fatigue can have many causes in MS. The primary cause of pain is due to nerve pain. And the primary cause of fatigue is also due to MS itself. But  pain and fatigue in MS can also be due to orthopedic problems caused by overuse or over exertion. This is where posture comes in. Posture itself is usually not the primary cause but is very often a secondary cause. And unless checked it can develop into a chronic secondary problem.

Our body has been built to be upright.  To stand erect, to walk erect and to sit with our trunk erect.  And the most efficient use of our body is to follow the design with which we were made.  When we deviate from this our body has to work harder. And we are much more apt to develop muscle soreness and fatigue just for starters.

I have been thinking about this and my own posture a lot lately.  I became acutely aware of this about a month ago when I was in a relapse.  My relapse started in my trunk muscles and I had pain not just discomfort.  As I exercise daily I was aware that the repetitions I was able to do with my trunk muscles was dramatically less than it had been. In contrast the repetitions of the exercises I could do with my legs and arms had not changed at all. So when I was standing,walking or doing activities with my arms I was doing so with poor trunk support. This was a strong lesson and a reminder to me on the importance of a strong trunk in maintaining the upright position.

It was also a reminder on the importance of being aware of my body and my posture. It helped me to understand part of my fatigue in walking even though my legs had shown no loss of repetitions.  When your trunk is weaker your body works harder to keep yourself up right when you are walking. Therefore I gave myself a break and used my wheelchair a little more and was able to maintain my functional level a little bit better.

Eventually my leg and then my arms also lost the ability to do as many repetitions as my trunk had. So I was walking less and doing less and my back pain did decrease.  Now I am certain that some of the pain I had in my trunk muscles and my fatigue was related to my MS relapse. But I also firmly believe that standing and walking etc,with weaker muscles was also a factor.

As those of you who follow my blog know I had a wonderful remission in January.  Since that time I have been able to walk with my wheeled walker in my home and sometimes outside short distances. For several years before that I used mostly my electric wheelchair in my home as walking was limited to five or six steps.

As a physical therapist I am very aware of the importance of trunk muscles in maintaining an upright position and good posture. When I bought my wheelchair I made sure it had a good solid back and seat to maintain me easily sitting with good posture. But when I was able to walk those four or five steps many times I would use the wall or furniture as an assist.  And at the  time I had noted that this is when my back hurt if I overdid this. Which I then tried to avoid. Helping to avoid this was making sure that I did not lean forward but that I stood up right when I took my 4-5 steps.  And of course my morning exercises always have included strengthening my trunk muscles.

When I was working as a physical therapist I was always very aware of not hurting my back and I believe that it has carried over into my coping well with MS.  I also think my early experiences of being a very tall girl(5'11&quot has been influential.  My mother was afraid of my developing round shoulders so I used to have to walk around the house with a book on my head to remind myself to stand up tall. And then my college experience also centered on good posture.

As a freshmen in college in 1953 at a school of physical therapy and physical education we all had posture pictures taken of us in our underwear.  We then had our posture analyzed and given any remedies needed to improve it.  And our ability to maintain good posture all day was reinforced by posture spies to report our misdemeanors.  I'm sure that seems archaic and it certainly would never happen today.  But there are some good lessons I learned on ways to assist myself in maintaining good posture.

What I find helpful in maintaining good posture and preventing back pain and fatigue are:

1. Keep your trunk muscles as strong as they can be-do trunk exercises.
2. Maintain good flexibility - have a good stretching program. 
3. Be really aware of your body and how you are sitting, standing and walking.
4. Made a habit of checking  yourself out periodically (are you slouching, leaning forward when you walk, is your chin jutting forward ? 
5. Use the appropriate assistive devices and make sure that your assistive devices your walker,cane or crutches are of a proper height and that you are using them appropriately.
6. Sit only in well supporting chairs and that definitely includes your wheelchair. 
7. When you stand up take a  moment to be sure you're  standing erect. And if your back feels stiff, lean back for a stretch then back upright and then take that walk . 
8. And not to be forgotten -don't push yourself and take that nap when you need it !

These lessons that I have learned over the years have been very helpful to me.  I think if you try them you'll find that they can really truly make a difference with secondary pain.  And you'll have an added bonus of feeling better about yourself. Your going to look better, and you'll find your whole life will improve.

                                                                  ellie