Eccedentesiast

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I have had the privilege to get to know a very lovely young woman at school who I am honoured to call a friend. I won’t mention her name in case she wants to remain anonymous. She has opened a side of life for me that I never even knew existed, and I am so glad she and I have gotten a chance to get to know one another. It will be fantastic when Bart and I move to Burlington, because she just so happens to live there too 🙂 Unfortunately, she suffers from an illness called “Dystonia” and is experiencing a rough private life right now. The last few months have been quite hard on her, and the last couple days her dystonia pain has flared, she she’s having major trouble walking, sitting, etc. let alone working on school work and taking care of her 2 little girls. She sent me the photo above when we were chatting the other day, and I loved it as soon as I saw it. I have been smiling behind the pain for over 20 years, and she unfortunately is learning to do the same. I almost teared up today when she mentioned that she now understands what I go through on a daily basis – although it’s nice to hear that someone else understands you, it’s also hard to hear because you know they are suffering, and that’s the last thing I want for someone I love and care about.

In case you aren’t aware of what dystonia is (I wasn’t until I met her), I have included some information here:

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Dystonia is a movement disorder in which a person’s muscles contract uncontrollably. The contraction causes the affected body part to twist involuntarily, resulting in repetitive movements or abnormal postures. Dystonia can affect one muscle, a muscle group, or the entire body. Dystonia affects about 1% of the population, and women are more prone to it than men.

Symptoms of dystonia can range from very mild to severe. Dystonia can affect different body parts, and often the symptoms of dystonia progress through stages. Some early symptoms include:

  • A “dragging leg”
  • Cramping of the foot
  • Involuntary pulling of the neck
  • Uncontrollable blinking
  • Speech difficulties

Stress or fatigue may bring on the symptoms or cause them to worsen. People with dystonia often complain of pain and exhaustion because of the constant muscle contractions.

If dystonia symptoms occur in childhood, they generally appear first in the foot or hand. But then they quickly progress to the rest of the body. After adolescence, though, the progression rate tends to slow down.

When dystonia appears in early adulthood, it typically begins in the upper body. Then there is a slow progression of symptoms. Dystonias that start in early adulthood remain focal or segmental: They affect either one part of the body or two or more adjacent body parts.

Most cases of dystonia do not have a specific cause. Dystonia seems to be related to a problem in the basal ganglia. That’s the area of the brainthat is responsible for initiating muscle contractions. The problem involves the way the nerve cells communicate.

Acquired dystonia is caused by damage to the basal ganglia. The damage could be the result of:

Idiopathic or primary dystonia is often inherited from a parent. Some carriers of the disorder may never develop a dystonia themselves. And the symptoms may vary widely among members of the same family.

There are several options for treating dystonia. The doctor will determine the course of treatment based on the type of dystonia and its severity.

A recently introduced treatment is botulinum toxin, also called Botox or Xeomin. The toxin is injected into the affected muscle. There it blocks the effect of the chemical acetylcholine that produces muscle contractions. The injection needs to be repeated about every three months.

When dystonia causes someone to become disabled, deep brainstimulation is an option. With deep brain stimulation, an electrode is implanted into a particular area in the brain. It is then connected to a battery powered stimulator implanted in the chest. The electrode transmits electrical pulses created by the stimulator to the brain region to reduce the muscular contractions. The person’s doctor regulates the frequency and intensity of the electrical pulses.

Medications can help reduce the “overdrive” messages that cause muscles to contract excessively in dystonia. Drugs used include:

Sensory trick is another option. With sensory trick, stimulation applied to the affected or nearby body part may reduce the muscular contractions. By simply touching this area, people can control their own contractions.

Speech therapy, physical therapy, and stress management may also be used to treat the symptoms of dystonia.

Please send her some healing prayers, as I think she could use some these days.

Thank you for being a truly inspirational friend – I hope our friendship lasts for many years to come. I’ll always be here for you.

Xoxo Lex

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