Demyelinated not Destroyed

While updating my blogroll, I stumbled across something that could be extremely beneficial to people living with CIDP. Northwestern University is presently recruiting participants for a stem cell based treatment for CIDP. It’s important to note that this clinical trial is for people who are not responding well to traditional CIDP treatments. You also have to be 65 years or younger in order to be considered for the clinical trial.

More information concerning the clinical trial through Northwestern University can be found here.

I know the use of stem cells is a hot-button, political topic. I don’t want to get into a debate of whether or not stem cells should be used here. Everyone is fully capable of examining their own moral code to determine whether or not they would feel comfortable participating in such a clinical trial. I’m merely posting information about the clinical trial in case it can benefit any of my readers presently living with CIDP.

One of the greatest tools a person with a demyelinating disease can use when it comes to treating their disease is keeping a medical journal. It’s simple and quick to do, yet the impact it can have on how your demyelinating disease is treated is astounding.

What does it do?

Keeping a medical journal allows you to track your symptoms.  There are two approaches to keeping a medical journal.  You can:

1. Track just your symptoms and how they change on a daily basis
2. Track all of the following:
   • Amount of food eaten, what kind, and when
   • Amount of water drunk
   • Activities (grocery shopping, doctor’s appointment, gardening, etc… )
   • Amount of exercise
   • Amount of sleep
   • Medications and supplements taken
   • Severity of symptoms
   • Any observations on what made your symptoms immediately worse, better, etc…

Obviously the second choice, while being a little bit more time consuming, would give you and your doctor the best overall view of your health, what makes the symptoms for your demyelinating disease worse, and what makes them better.

Why is it important?

The biggest problem that faces people with demyelinating diseases is how often their symptoms can change.  For some people, their symptoms will get noticeably better or noticeably worse fairly quickly.  For others, the changes will happen gradually over time.  Gradual changes can be especially difficult to deal with when you have a demyelinating disease.  Because you get steadily worse over a long period of time, it can be extremely difficult to pinpoint when your symptoms began to worsen.

Also, most people with demyelinating diseases have a lot of doctor appointments.  If you try to rely on solely on your memory when your doctor asks for details about your symptoms and how you’ve been feeling since the last appointment, you can forget to tell them something important.  If your doctor doesn’t have all of the information on your overall health, they can’t come up with the best plan of care for you and your demyelinating disease.  Even the smallest details can have a large impact on your treatment plan.

Things to keep in mind

Keeping a medical journal doesn’t have to be a time consuming experience.  Take 15 minutes, each day, before you go to bed to jot down the things you’ve done that day, rate how your symptoms are, and make note of any significant changes or odd feelings.

When you go to your doctor appointments, bring the journal with you.  Better yet, make copies to give to your doctor of the medical journal entries you’ve made since your last appointment.  Those copies can then become part of your medical record.

My experience

I try to chronicle any significant changes in my symptoms on my computer.  I’ve found it extremely helpful for me to read over past entries in order to get a gauge of how my CIDP and various CIDP related symptoms are doing.  Admittedly, I could get much better about making my journal entries every day.

As a special note, I decided to file “Keeping a Medical Journal” in the Treatment category because it can impact how your doctor treats you and your demyelinating disease.

One of the things a person with a demyelinating disease can do to help themselves and their condition is to exercise.  It seems like such a simple thing but it can have a huge impact.

What does it do?

Exercise is extremely beneficial for those who are in good health and those that are not.  Exercise keeps your body and cardiovascular system strong and in good shape.  It can also strengthen your immune system, making you less inclined to get sick.  Regular exercise can make you stronger and more agile, also.

Why is it important?

For people with demyelinating diseases, exercise is crucial.  When in the middle of a relapse or other worsening of symptoms, it can be easy to get in a habit of laying around.  Unfortunately, muscles begin to atrophy if they aren’t used enough.  This leads to even more weakness and loss of balance.  It can become a vicious circle of further weakness and other problems if left unchecked.

Exercise provides many other benefits, as well.  Many studies have proven that people with Multiple Sclerosis experience shorter relapses and less flare ups if they follow a steady exercise regime.  No or low impact exercises are perfect for a wide variety of individuals and are less likely to cause strained on already overtaxed muscles than higher impact exercises.  Since exercise can also strengthen a person’s immune system, it stands to reason that exercise can help in the fight against autoimmune diseases.

Things to keep in mind

Before starting any exercise regime, it’s important to contact your doctor ahead of time.  Discuss what kinds of exercises are right for you and your individual circumstances.

Many insurance companies are now starting to cover the cost of gym memberships.  Talk with your doctor or one of the customer service representatives to find out whether or not your insurance will cover the cost.  If they do, ask if there are any special forms you need to fill out to get your gym membership covered.

It is especially important to not overdo any sort of exercise.  Any muscle injuries can be complicated by a demyelinating disease.  Overdoing it can also lead to severe fatigue as your body tries to rest.  Severe fatigue can also lead to increased muscle spasms and muscle cramps.

My experience

Admittedly, I haven’t been very good getting the exercise I need.  I know I would probably have more energy and more endurance if I exercised regularly.  I did notice that the times I followed a steady exercise regime, I felt better.  My symptoms were less and I had more energy.  I also noticed that my overall attitude was better.  I was less stressed and happier.  Just an improvement in my mental state makes daily exercise worthwhile, in my book.