Hi friends. Time to give you some updates.
Physical
I have developed a few pressure wounds on my bottom, right heel, outside of the right foot and left clavicle. Fortunately, none of these are open wounds and most are healing well. I’m consuming extra protein to help strengthen the skin and the healing process.
Intrathecal Pump
Since starting the Prialt in place of the Baclofen, I have experienced improved muscle tone. ReachIng with my arms, especially the left, has improved. I am able to do fist bumps and pressing the handicap button for opening doors.
That being said, there is still a lot of tone and my arms remain rigid. The right hand is often clenched. I keep up on doing daily range of motion on my arms and legs.
By mid afternoon, my muscles are screaming with discomfort when being in the wheelchair.
Talking creates more muscle tone and spasticity. This interferes with me being more consistent in putting out blogs, which I enjoy doing and find it therapeutic. Hopefully, they are enjoyable for you to read.
I still go to the pain clinic in Chicago every three months to evaluate my progress and make any changes to dosages. We are In process of requesting a dosage increase.
Mental
My overall mental well-being is solid. The depression has improved. I haven’t had strong suicidal urges in several months. There will be occasional suicidal thoughts but I will use cognitive restructuring or distraction.
Cognitive restructuring is replacing negative thoughts with more balanced ones. For example, say I have a random thought such as “my life totally sucks!” A more balance thought is “my condition is not ideal. I have every day struggles but I’m learning coping skills dealing with them. I don’t have psychosis or suicidal thoughts. And I have more hope for my future.”
Anxiety is fairly persistent. Sometimes my tone and spasms makes it difficult for me to breathe. This has almost triggered occasional Panic attacks. Mostly I deal with distressing thoughts of what my future will be like.
Walking
I restarted the walking program with my physical therapist on 9/6. The endurance is lagging due to several weeks I took off due to calluses on my heels. The plan is to continue walking twice a week.
So there you have it. The thumbnail sketches in my latest developments. I appreciate you for reading these blogs and the encouragement you give every day. It means a lot to me!
Part of my range of motion program with PT. I’m happier than what I look here.
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