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.
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.
