Other Book Excerpts

Excerpts from Managing MS…

 

……remember that this is a chronic illness. This is extremely difficult when you have to work, raise a family, and do the other thousands of daily demands. You will have to adjust your lifestyle.  This change is slow and frustrating; it will try your patience and morale.  But trust me, it can be done.  Here’s an excerpt from my personal journal, December, 1985: “I hurt.  I’m so tired.  I feel like a mechanical robot breaking down. This disease really kicks it out of me.  I really start dragging after lunch, then it’s all downhill. I’m a real bitch. How do I keep on going?  My body feels like it’s fighting a virus day in, day out.  Will I ever get a break?  I don’t know what to do.”  If you’ve read My Ten Commandments chapter, I now know what to do.

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            If you are newly diagnosed, you obviously have seen a neurologist.  How was your experience?  One of your top priorities in getting started is to make sure you have the best doctor(s), that you like them, and trust them.  Take a look at the next chapter about doctors.

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To keep things simplified, there are three main groups of treatments, all with a different purpose: Medications, Corticosteroids, and Disease Modifying Treatments. In recent years, another group has emerged—Remyelination/Restoration……

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There is much to know about steroids, and unfortunately, the doctor and the pharmacist never tells it all.  The first experience with steroids is horrifying to say the least, and creates tremendous confusion and stress.  I hated them in the beginning, but after I understood my own body’s reactions and the fact that they did work for me, steroids became my friend.

What to know about steroids?

  • The purpose of steroids is to reduce inflammation.  Because the dosage is very high, the immune system will become suppressed.  Therefore, you want to …....
  • ……

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So, how is a DMT chosen?

Doctors will (or should!) first consider……Finally, doctors will discuss things with an MSer like: 

  • How the DMT is given – oral meds? injections? IV infusion?
  • DMT scheduling – at home? frequency?
  • Plans for pregnancy – none? near term? long term?
  • ………

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HSCT use adult stems taken from an MSer directly (bone marrow, fat tissue) and reintroduced later after the immune system is……

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“People look at me and just cannot understand why I get so tired.”                                                                              
                                                                               (MSer comment, March 2011)

            Out of all the symptoms I and others have experienced with MS over all these years, I truly believe this is the one symptom that is the most difficult one for everyone involved.  It is a universal complaint by over 90% of MS victims.  It doesn’t matter if the case is mild or advanced.  It doesn’t matter whether it’s one of the relapsing/remitting or progressive types of MS.  It doesn’t matter if you had a good night sleep or if your MS is not currently active. Fatigue is always present with MS, 24/7……You will get fatigued easily, whether other symptoms are present or not.  Simple activities like making dinner or talking on the phone too long can exhaust you. The slightest thing can make it worse, such as ….......

.......... Unfortunately, fatigue is extremely difficult for a non-MSer to understand. You can’t really see it…....… fatigue isn’t due to just being overworked or sleepy.  I describe it sometimes like when you have a virus; when you feel so run down and wiped out all you want to do is lie down. Or, I’ll give an example by saying that when trying to walk, each leg feels like it has a ten-lb. weight strapped to it.

So, what can be done about fatigue?..........

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“You look so Good!”

This phrase has irked persons with MS for as long as I can remember.

            That’s because on the outside so many of us do look good unless we have some kind of walking aid to indicate otherwise. We’re not bleeding, we have good color in our faces, we are not coughing or blowing our noses. When we look good, people automatically think that we are good.

            But we’re not because so many of the symptoms are invisible. Pain, tingling, numbness…....... interfere with everything we think, say or do……. are annoying; they hurt; they are frustrating; and they make us crabby.

            Invisible symptoms are difficult to describe, and when we tell someone about them it’s hard for them to understand or empathize…....... they forget that we have these symptoms because they are invisible.  If we talk about them, we sound like complainers….......they are uncomfortable and don’t know what to say.  This was a topic of discussion in almost every disability group meeting I had.  Peer-to-peer, we understood it, shared our stories, and how we coped….......

 

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The bad news is that almost everyone who is diagnosed with MS will develop bladder problems.  The good news is that it can be successfully managed and you will be able to control it.

            Bladder dysfunction occurs due to lesions in the spinal cord.  Simply put, there is one of three problems….......

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….. spasticity occurs when the muscles contract, tighten, stiffen, or go into uncontrollable jerky movements.  It doesn’t take much to the intensify the symptom so much as to cause pain from a muscle so tight or contracted that it “freezes” and is difficult to move.  Muscle or joint pain is usually in the legs, but can also be in the arms, hands, and lower back.

What to do?  

There are basically three things to help spasticity.  The first is to try one of the…...

 

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……Let’s make a list of things that can cause depression or wide range of emotions that we can have ……Could there possibly be more?  Unfortunately, yes.  The brain itself.  There are areas within the brain that control our emotions, depression and even certain types of cognitive functioning that can be scarred with lesions from demyelination, directly causing these symptoms…...

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“It’s not easy to deal with a person with MS.  They can be mean, cranky, and difficult to handle.  Do you have any suggestions?”  (a question by a nurse with hospital staff at a NMSS information session on MS, October, 1992)

            Very true, and quite often, it’s not easy to deal with a person with MS.  We are mean and cranky because we don’t feel well, we are tired, and we are scared.  Yeah, the person with MS is living with the disease, but so are the people who live with and interact with that person.

What to do?......

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……People with MS have a higher rate of abuse than average—perhaps as high as 50% of all relationships. Most emotional abuse goes unnoticed and unreported. When the abuse takes place in private, there are no witnesses to validate your experience. Calling the police doesn’t protect you like physical abuse would—there are no visible signs. Too often, family or friends can’t/won’t get involved. You and the entire family will “walk on eggshells” and adapt so as not to upset the abuser. Signs of depression, withdrawal, anxiety, etc. that result are blamed on the MS. It’s a bad spot to be in, and becomes another elephant in the room……

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            When newly diagnosed, people often wonder if they should tell their employer about their diagnosis. There are pros and cons to each side. Despite what folks tell you about your rights and protection under the law, we all know there are ways to get around discrimination.

What to do?......

...... Your right to accommodations depends on your specific employer and disability status…… Video - Social Security Disability Law Updates for the MS Community……

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Vitamins and supplements are not a replacement for healthy foods. But there are good reasons to take certain vitamins for an MSer, especially as you get older.

So, which ones to take and why?

  • Vitamin D--Research has shown that people with MS have lower levels……

 

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 Image courtesy of Stuart Miles at FreeDigitalPhotos.net