Living Well With MS & Disabilities: Ellie's Blog

   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