Dave's ActiveMSers Blog: Imitating Humpty, Mr. Humpty Dumpty

Dave's ActiveMSers Blog: Imitating Humpty, Mr. Humpty Dumpty: In the fall of 2009 I had what I consider my first official MS fall—almost four years to the day of my first relapse. Now I’d had falls befo...

MY BIGGEST FEAR

As I come out of the preverbal broom closet with my MS it means admitting to myself what it is about this disease that I fear the most.  For the most part I feel I have a very good attitude even with all of my challenges.  Every day that I wake up I feel blessed even though I know that 80% of my day will be painful.  I deal with vision loss and the spasms in my face.

My sense of humor keeps me smiling while talking to many on the computer and if there is a typo I calk it up to rented fingers and put no more than that into the numbness in my hands arms and legs.  I know of so many in wheel chairs now and I have been asked what about when I can’t walk?

What about when I can no longer see?  I thought this was my biggest fear.  My children and my grandchildren are my life.  We have been through so much together with my divorce, my cancer and now MS.  But then I stopped and really thought about this.  When I loose my sight it’s going to be okay, I will still hear them and share with them I just won’t be able to see them and I looked at it from the perspective of I don’t see them everyday I talk to them or I communicate with them via the computer.

Just because I don’t see them doesn’t mean that I won’t share in their lives so this no longer was a fear.  So then what is it?  What is it I fear the most?  Everyone that lives with MS, lives with many complicated choices everyday from new medications to finding the right doctors, the testing and the side effects that go along with all of this.

So let me try to break down my biggest fear. It’s simple really, I’m afraid of loosing my mind.  Depression absolutely terrifies me.  Depression is very common in people with multiple sclerosis (MS). In fact, symptoms of depression severe enough to require medical intervention affect up to half of all people with MS at some point during their illness.

Why Do People With Multiple Sclerosis Also Have Depression? 

1.   Depression may be the result of a difficult situation or stress. It is easy to understand how having MS, with its potential for progressing to permanent disability, can bring on depression.

2.   Depression may be caused by MS. MS may destroy the insulating myelin that surrounds nerves that transmit signals affecting mood.

3.   Depression is also a side effect of some drugs used to treat MS, such as steroids or interferon.

This is what I know, Feeling hopeless and helpless are part of the disorder, and so depressed people are prone to believe there is nothing they can do to help themselves. That is flatly untrue. When people educate themselves and take proactive and deliberate steps to get help, including self-help, the probability of overcoming depression is high.

I'd suggest that you completely ignore the disempowering interpretations people give you about the meaning of your depression. Instead focus on 1) learning what your particular risk factors and vulnerabilities are and 2) then learning the strategies you'll need for skillfully managing your mood.

Even when depression eventually lifts, you will need to manage your mood with self-awareness and skill. It's a life skill everyone needs, not just those prone to depression.

Therapy can be of great help and should feature somewhere in your plans to overcome your depression. You can't effectively treat yourself when you don't know much about what you're up against.  For me, my biggest challenge is a healthy attitude. Knowledge is power.  While I may not be able to cure MS, I can, concur my fear.  I wish good health to everyone.

"THE IMPORTANCE OF A GOOD DOCTOR"

My name is Karel and I live with MS.  I said it, my doctor would be so proud.  I was diagnosed with MS back in the early 90’s.  I spent many years listening to people tell me how I was in denial with this disease and maybe I was, after all it’s my personal war.

 

Dr. Surendra Gulati

At the time of the diagnosis, I was going through what is called exacerbation, flare up or relapse.  Let me just say, I am the worst patient that walks this planet and Dr. Surendra Gulati was up for the challenge after all he has 35 years experience as a Neurologist.

Those who live with MS knows, having the right doctor means absolutely everything to your prognosis. Now as I walked or rather stumbled around Dr. Gulati's office trying to explain some of the things I was experiencing feeling absolutely foolish to what I was saying. 

He tells me I need to be in the hospital so he can run some test and depending on the results he was going to schedule me for Solu-Medrol treatment.  He tells me this is an IV steroid treatment and that I should plan to be in the hospital for at least 5 days.  This is when it began. 

Before completely going off the deep end here I first calmly asked what kind of test did he need to run?  He explained I needed an MRI, that didn’t sound to difficult.  MRI is a test that produces very clear pictures of the human body without the use of X-rays. It uses a large magnet, radio waves and a computer to produce these images.

MRI can often detect damaged areas in the brain or spinal cord that would be missed by other imaging techniques such as a CAT scan.  The other test we talked about was a spinal tap.  So I asked How Does a Spinal Tap Help Diagnose Multiple Sclerosis and is this going to hurt?  The Doctor is lucky he has a nice smile.  He tells me as far as the Spinal Tap goes I won't even feel it.  He then explains that a spinal tap that reveals a large number of immunoglobulins (antibodies) as well as oligoclonal bands (the pattern of immunoglobulins on a more specific test) or certain proteins that are the breakdown products of myelin is suggestive of MS. These findings indicate an abnormal autoimmune response within the brain and spinal cord, meaning that the body is attacking itself.

Okay, so I’m up for the MRI, not to big on the Spinal but I’m going to do this however I can not be in the hospital for 5 days with this IV treatment so we would have to work around that if possible.  Dr. Gulati explains I can have an IV piggy back and do the treatment as an outpatient but as far as the Spinal goes I had to be admitted and needed at least two days in the hospitsl for MRI and spinal.  I agreed, and so I went to St. Joseph Hospital and admitted myself.

I was admitted in the early afternoon, I remember settleing in my room and having my MRI before dinner.  After dinner about 7:00 p.m. Dr. Gulati was doing rounds and came into my room to check on me.  He is truly blessed, a kind and gentle man with so much compasion and understanding to his patients, at least this is how I see him.  He sat in my room and asked how I was feeling and all the basic questions a doctor usually asks.  He explained that he would be doing the Spinal within the hour. 

Wow, I was not ready for that.  So soon I asked?  You sure this needs to be done?  Are you sure you wouldn’t want to do this in the morning after a good night sleep?  Like I said he does have a nice smile.  No time like the present my friend, says Dr. Gulati.  Yes, I’m sure this needs to be done and as far as doing this in the morning, let’s just get this out of the way shall we?  I’m here, you’re here we might as well just do this, besides like I told you before you’re not even going to feel it.  However, you do have to stay in bed for at least 24 hours, would you do that for me?  Who could argue with a nice smile?

Of all the MS tests, the spinal tap is the most invasive and seems to generate the most anxiety and anxious I was as I laid on my side waiting for this ungodly pain in my spine from an needle.  I felt something cold as Dr. Gulati cleaned my lower back and applied a numbing medication around the needle insertion so that I would not feel much pain.

He kept his word, I didn’t feel a thing.  Nothing says I trust you more than when a doctor keeps his word.  When he finished the procedure he left the room and I was made comfortable in my bed.  About 30 minutes later to my surprise Dr. Gulati came back to check on me, to see if I was okay, in any pain or just wanted to talk.  As he said good night he explained that I was going to be okay and that I would start my IV treatment in the morning and since I was so quiet if I had any questions write them down and we could discuss them when he came back.