Welcome to all who visit this Blog whether you suffer from Multiple Sclerosis or have a loved one who does. Hopefully this will help all who read understand that they are not alone even though MS affects us all in very different ways. Maybe it can help open eyes of those around who do not know the unpredictability of daily life with MS.
The purpose of this blog is to offer support and inspiration. Please feel free to share any useful information that you have gathered along your journey and words of inspiration. It is hard to overcome all the obstacles we must face and it is nice to hear ways people have adapted. Inspirational stories and anectedotes are especially sought after.
If you post and suffer from Vision disabilities you are welcome to post in all capitals and no one will think that you are shouting.
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Monday, October 29, 2012

Hope springs eternal

A few days ago, my family and I went to a conference on MS titled "Is it Me or My MS?"  Their was a doctor answering questions and informing us on the symptoms and progression of MS.  Of course, it was sponsored by a drug company so the doctor was not allowed to talk about medications other than the sponsored medication.
When we first arrived, I looked around to what was a very small amount of people.  I was a little surprised for two reasons.  1.  There was a free dinner and who wants to do dishes right?  2.  I know the more I deal with this illness, the more questions I have.
We looked around the small conference room and at the corner back table, there was a lady in a wheelchair with two people on either side of her motioning me over to sit down at her table.  At first, I thought maybe she thought I was someone else, but I decided that would be our table.
Once we sat down, I realized how severely disabled she was.  She was very hard to understand.  She was confined to a wheel chair and was very inhibited in many other ways.  She was unable to drink out of a regular cup and was using a childs sippy cup.  Her two friends had to help her eat.  She dropped her fork at least 5-6 times during the meal.
I have to admit that at first I felt a little uncomfortable.  I am naturally pretty shy and have a poor comfort zone around new people, but this was not my main reason for being uncomfortable.  My main reason was related to her stage in the disease we share.  The first thought that came to my mind was is this my destiny?  Am I going to be like her?
Through our very broken conversation, I found out that the main reason she was there was to find out if there was any medication she could take to get out of the wheelchair.  I found out that she had only been in that wheelchair for a few weeks.  I also found out that when she was at my stage, she was not compliant with her medications.   Meaning she had no desire to take the medication (shots) she was prescribed.  I did not ask her why, but I did reflect on those days I skip my shot because I grow so tired and weary of taking it daily.
At the end of the conference, what I took home from this woman, is that no matter at what stage you are, you keep hoping.  One of the questions she posed to the doctor was if she could start taking the sponsored medication to help her get out of the chair.  I felt sad.  She was beyond the point for these medications as their purpose is to delay us to get where she is.  The doctor's response was to defer her to her doctor.  I understood what that meant and my husband mentioned it later as well.
Even though she was already progressed, she had hope.  She had hope to be able to walk again.  Hope to be independent again.  Hope for a cure.  Hope to heal.


Diane J Standiford said...

I'm secondary progressive, DX in 1990, use w/c (power chair now, I was always afraid to go to those seminars, even when I was just DXed. Flip a coin, those are your chances of never needing a w/c. Meds, no meds, PT no PT, it does what MS does...you are quite right, just stay as healthy as you can and hope for that cure that WILL one day come!

Unknown said...

Thanks for commenting. I was diagnosed in 2009, but had been symptomatic for years before that. I know use a cane and a walker at times. Confronting the disease head on is so scary. Sometimes I like to live in that little space called denial, but in the end I have to hope that this disease will be in the limelight and hope people in power will start advocating for us. I remain hopeful.