Deep Brain Stimulator Died!

I depend my DBS system (Deep Brain Stimulator) greatly.  It smooths out motor movement to some degree and helps preserve urinary function, swallowing mechanism, and keeps my body from being rigid and in pain.  

Last week I started noticing I could no longer stand up straight and my joints and muscles were aching and burning. I felt as though my head was spinning.  

If you have read my book, FURTHER ALONG, you know where the brain implants are located and the purpose they serve.  They generator in my chest is connected to these brain implants.  

In addition to my very curved, down facing posture, I was struggling to make my bladder muscles work and urinating has become very painful and, at times, nearly impossible.  My voice has been weak. 

Then it occurred to Karrie and I that we needed to check my generator power. We have a hand held device that we place over my generator, located beneath the skin on my upper chest. Karrie placed this over my generator and it indicated that it was no longer functional. 

We are in the process of working with my movement disorder neurologist to get surgery scheduled as soon as it is possible. This needs to be done by a neurosurgeon.  

In the meantime, I will just have to find a way not to let it depress me as the change or lack of stimulation can severely affect my basal ganglia function. This part of my brain is located in my midbrain, and can play havoc with my sense of well being.  Also, the stimulator going out has caused intractable hiccups that have continuously returned for 3 days straight.  They are very difficult to stop and the constant jerking of my abdomen is painful for my stomach G-tube.  

I would appreciate your thoughts and prayers as they will be of great help! 

 

Drawings by Mark M. Brooks

Walking Is Increasingly Hard this Week

Note: Our friend Lori is home after a successful hip replacement surgery.  We pray that her recovery will be smooth and timely.  Our best to you and Pastor Brad!

Multiple System Atrophy is a syndrome which causes such a variety of issues that as a patient you will forget the difficulty of one serious symptom while several others have risen to the fore. I live with balance and walking/gait difficulty always, and have since this came on just over 10 years ago.  Due to blood pressure being low (orthostatic hypotension) makes it hard to rise and begin to stride because of either a grey out moment or weakness in muscles.  Once I going, my balance due to brain changes in the cerebellum contributes to the struggle to walk with much balance, and my pace is very slow due to parkinsonism as I attempt to go get the mail from the mailbox or take the trash to the garage.  Even with a cane or walker, it is a rocky road.

These last several days, it has been worse.  I am stooped over more and moving very slowly, with an exaggerated shuffling gait.  I went in the grocery store with my wife and found the size suggests a wheelchair rather than a walker next time.  I may get my next DBS adjustment and find that it brings improvement in this area.  It is hard to say, but often the electrical stimulation that is continuously flowing to both sides of my brain, when targeted to improve a symptom can actually do something close to that!  Always Hope,  Dan

Pain in MSA

Pain is a part of Multiple System Atrophy.  Does that come as a surprise?  The same is true of Parkinson's Disease.  I have stiffness in my arms, legs, feet and hands.  My neck is moving downward, slowly, over the years growing closer to my chest.  When I walk I feel the stiffness and cramping of my neck and upper back as my shoulders and head pull down involuntarily. The medicine Gabapentin is a big help in treating pain.  It relieves nerve pain, which is generated by the rigidity of parkinsonism that is a part of MSA. 

Dystonia is a related condition that causes involuntary contractions, postures and tremors, such as my head which bobs or shakes most of the day and night.  My Deep Brain Implants and generator work together to reduce some of this stiffness and twisting movements, along with the Sinemet which is a wonder drug that is a must for all Parkinson's patients, along with PSP and MSA patients who have Parkinsonian issues along with their central symptom issues.  So, yes, pain is an issue and those who care for MSA victims need to know this and keep it in mind at all times.  In closing, thank you to my spouse, Karrie, and all caregivers that make such a difference in alleviating pain and in lengthening our lives!  -- Dan