Sunday, January 16, 2011

Well, at least the demon has a name... Dystonia!

48 hours of the worst constant pain I've ever experienced...

"Because of my sufferings, I will appreciate (in heaven) the scars of Christ and also the scars of other believers. (In heaven) I will see men and women that in the world were cut in pieces, burnt in flames, tortured and persecuted, eaten by beasts, and drowned in the seas - - all for the love they had for the Lord. What a privelege it will be to stand in their ranks! But what a shame it would be if, in conversing with them, we could only shrug our shoulders and prattle Me? Suffer?...... Perhaps we would bite our complaining tongues more often if we stopped to picture this scene in heaven. The examples of other suffering saints are meant to inspire us upward on our heavenly journey home." Joni Eareckson Tada

Understanding Parkinson’s disease
When we think about the symptoms of Parkinson’s disease people often associate it with the more common symptoms such as stiffness in the joints, slowness of movement and poor mobility. There are however other symptoms which can be just as debilitating but which don’t show outwardly, pain is one of them.

Most sufferers of this disease will admit to having painful symptoms and have some form of painful discomfort on a daily basis, in fact this symptom can become so severe that other symptoms of the disease are overshadowed, yet it is a symptom which is very often overlooked by people in general.
Pain and discomfort associated with Parkinson’s disease is brought about either due to musculoskeletal problems brought on by poor posture, or brought on by Dystonia which is the twisting of a muscle group or body part and discomfort due to severe restlessness.

Musculoskeletal pain
Aching muscles and joints are a common side effect in someone with Parkinson’s disease, lack of movement and abnormal posture all contribute to this. One of the most common forms of musculoskeletal pain is stiffness in the shoulder which is often termed frozen shoulder; hip, back and neck pain are also common symptoms in the disease.

Pain caused by Dystonia
Pain associated with Dystonic spasms are usually amongst the most painful symptoms that sufferers of Parkinson’s will encounter. This type of pain is brought about due to the forceful, twisting posture which Dystonia bring about. Dystonia will affect the limbs, trunk, neck, face, jaw, swallowing muscles and vocal chords of the sufferer, one of the most common and painful symptoms is the curling of the toes and feet.

The most important step in diagnosing pain which is due to Dystonia is establishing its relationship to dopaminergic medication prescribed for Parkinson’s. For example does this occur when the medicine reaches peak effect or when it is wearing off?

Treatment for pain relating to Dystonia will vary; early morning treatment can be exercise or be relieved by taking medication. People who suffer from intractable Dystonia may benefit from deep brain stimulation which involves implanting electrodes in the brain and activating them.

"Share each other’s burdens, and in this way obey the law of Christ." Galatians 6:2


  1. My prayer is that the DBS will come soon, and be exactly what you need to relieve you of this indescribable pain!

  2. thank you for sharing where you are at. I feel bad for you and your sister. so much going on within your lives and your family. Keep fighting!!

  3. So sorry, Merv! You're a trooper and an inspiration!!!