I go to a specialty clinic in New Jersey for Multiple Sclerosis called the Linda E. Cardinale Center. Here I visit with my favorite Doctor who deals with MS and only MS. He is the head of the center and is well renowned.
I see him every 3 to 6 months depending on how I’m feeling. I was past due for a visit but landed up in the hospital which delayed my visit with him yet again.
It was a beautiful day for a drive out there which takes us about 45 minutes. The nice thing about the drive as well, is that it locks my husband and I of nearly 30 years of marriage into a small compartment (car) where we talk about issues we normally don’t give ourselves time to.
After talking to my Doctor for awhile, I was remonstrated for not being on my therapeutic drug for MS. To be honest, I don’t know that it helps, but he thinks that it at least keeps things stable or slower.
I told him about my hospital stay and my visit to Chicago, and he told me that I wouldn’t come back to the me that I was before the hospitalization and the stress of Chicago for at least 6 to 8 months. I already knew this from previous setbacks. He also indicated that it will take longer and longer to come back as time moves on, if I come back to normal (for me) at all.
You know what? I just hate getting slugged around with bad news one after another. He poked around on me, as usual and with his little hammer knocked me in the arms, they went flying, then he poked me in the knees and as before, could not illicit any movement whatsoever.
He told me my head was starting to lean over more and that I should move up my appointment for my Botox injections in my neck.
Did you know that? They use Botox in muscles using ultrasound to strengthen muscles. That’s what keeps my head up from the dystonia that I have.
Ok, I hear you. What is dystonia?
Definition: n dystonia: your muscles contract involuntarily — causing uncontrollable repetitive or twisting movements of the affected body part. Your symptoms may be mild or severe, and may interfere with your performance of many day-to-day tasks.
Doctors divide dystonia into categories including generalized, focal, segmental and other less common categories. In focal dystonia, the most common category, one part of your body is affected. Generalized dystonia affects most or all of your body. In segmental dystonia, two or more adjacent areas of your body are affected. Some types of dystonia are inherited.
Medications can sometimes improve dystonia symptoms, but inconsistently. In some more-severe cases, surgery may be used to disable or regulate certain brain regions or nerves. (Mayo Clinic)
There you go! My dystonia is in my neck. So it hangs down and to the side. That’s why you usually see my holding my head up in pictures or leaning. I get to see lots of feet and introduce my head to lots of wall bumping because I can’t see ahead. My walls know me very well.
When I got back into the car with my David, I had all these instructions for starting up Aubagio again, and blue slips of paper for medication adjustments etc…..
I am bogged down by pills.
Here is the great thing that happens on these visits! You will have to applaud my David for this.
He knows I’m always down in the mouth when I come out of these visits, so he took me to AC Moore (craft store), where he allowed me to shop for whatever I wanted! He always turns it into a treat day for me.
So hey drugs, you trying to drag me down? You can’t beat my support of my husband who will defeat you each time by having me come home with a huge smile on my face.
Thank you David.