Essential/Familial Tremor, Dystonia, Parkinson’s Disease

This is a subject near and dear to me and I thought it would be a good time to bring it out on the blog.

Your brain is a fantastic part of your body, but when things go out of whack, they really go out of whack!

Essential/Familial Tremor, Dystonia, and Parkinson’s Diseases are all neurological conditions that drastically affect the people who are afflicted. They are all debilitating and make life situations sometimes impossible.

Essential Tremor (ET) affects the person’s ability to use utensils when eating, pens/pencils when trying to write, cooking utensils when trying to cook or bake, buttons when trying to dress/undress, and sometimes affects how a person is able to speak, to name a few issues.

Over the years, my handwriting has suffered tremendously. As a young student, I had amazing handwriting and was most usually praised by my penmanship teacher in high-school. However, as I approached my mid-50’s that all changed. I can now only write when it is absolutely necessary for signing documents needed for approval signatures, and when I do I don’t recognize it anymore! Most of the time, I use the computer as it is easier for me to type than to write, and sometimes I use voice recognition software (usually Windows 10 Voice Recognition), which is not very reliable, but is useful when I’m in a lurch! Even using the mouse to select text or pictures on the computer can be a chore some days.

I noticed as a teenager that when I went to do anything with my hands, they seems to tremble and I always thought it was “just my nerves”. Well to be truthful it was, however, not in the way I thought. So whenever I had/have to handle paper, hold a cup or a glass, try to hand over anything to anyone, my hand(s) tremor and it is something I cannot control. Fortunately, it doesn’t affect my ability to drive a car! It seems to be fine motor skills for me. So when I sew, knit, or crochet I sometimes find it hard to do the small things, but am able to get by. I hope this doesn’t change too much as I really do like doing these things. As a young adult, I liked to do oil painting on canvas, but that has long since gone away due to my hands shaking so much.

One of the tests that is used by the neurologist to determine how bad the tremors are in my hands is a spiral test. (This is not mine, but very similar)

There are very distinct differences with this test between ET, Dystonia, and Parkinson’s Diseases. Below are the spirals from a Dystonia patient:

and a Parkinson’s patient:

I have always been told from the mid-1990’s that I simply had “Gunfighter’s Disease” or ET. But I have recently found out that I also have Cervical Dystonia (which had been spoken of – Dystonia – at past appointments, but never pursued).

Here is the difference in these tremors:

Essential Tremor is a nervous system (neurological) disorder that causes involuntary and rhythmic shaking. It can affect almost any part of your body, but the trembling occurs most often in your hands — especially when you do simple tasks, such as drinking from a glass or tying shoelaces. Mine happens whenever I try to do “anything” with my hands. Other than when as a kid trying to pass anything along to anyone, I noticed in the mirror a slight tremor in my left hand when applying lipstick.

Dystonia – Dystonic tremor is a type of tremor which occurs in conjunction with dystonia, a neurological disorder where incorrect messages from the brain cause muscles to be over-active resulting in abnormal postures or unwanted movement. Dystonic tremor usually appears in young adulthood or mid-life. Mine happens to be head tremors and appeared during the mid-1990’s. As an adult, I remember always trying to keep my head still when in a meeting by leaning on my left hand. Well, this seems to be typical for Dystonia!

Parkinson’s Disease tremor is defined as a resting tremor, or rest and postural/kinetic tremor with the same frequency. This tremor is inhibited during movement and may reoccur with the same frequency when adopting a posture or even when moving. As many of you know, Michael J. Fox suffers from Parkinson’s Disease and believe he is having stem cell treatments to help. He is just far too young to be suffering with this disease and I sincerely hope there is something found to help those with it.

Regardless of which one a person is affected with it is something that is very difficult to control, even with medication.

There are many “drugs” that can be prescribed for these conditions. The one I take for my ET is “Propranolol” and I was just increased to 80mg twice a day (up from my original dosage in the early 2000’s at 10mg whenever I felt it necessary). The Essential Tremor Organization recommends the following medications for ET:
Propranolol (Inderal®); Primidone (Mysoline®); Clonazepam (Klonopin®); diazepam (Valium®); lorazepam (Ativan®), and alprazolam (Xanax®); Gabapentin (Neurontin®); Topiramate (Topamax®); Mirtazapine (Remeron®); or Alcohol. I don’t drink any more and found that when I did, one drink of alcohol was the only drink that would affect the tremor, more than that for me made it worse.

For the Dystonia though, the neurologist wants to inject Botox into my neck muscles to stop the messages from making them contract. It is supposed to be the “gold” standard for Dystonia. This was proposed to me a few years ago by another neurologist, at which point I flatly refused. Unfortunately, the head tremors are getting much worse and seem to be all the time, where they were just occasional originally. So I know they are getting much worse. But I’m still fighting against putting a “poison” into my neck. I still don’t believe there won’t be some long term effect from these injections, even though people have been using Botox for about 25 years! This would have to be done every 3-4 months to keep the tremors at bay. That is what really bothers me about these injections. I will keep looking at other alternatives as I do not think this is for me. The following comes from the Mayo Clinic for Dystonia treatments:

“Botulinum toxin (Botox) that’s injected into specific muscles might reduce or eliminate your muscle contractions and improve your abnormal postures. Injections are usually repeated every three to four months. Side effects are generally mild and temporary. They can include neck weakness, dry mouth or voice changes. Other medications target signaling chemicals in your brain (neurotransmitters) that affect muscle movement. The options include:

  • Carbidopa-levodopa (Parcopa, Sinemet). This combination medication can increase levels of the neurotransmitter dopamine.
  • Trihexyphenidyl, benztropine. These medications act on other neurotransmitters. Side effects can include memory loss, blurred vision, drowsiness, dry mouth and constipation.
  • Tetrabenazine (Xenazine). This medication blocks dopamine. Side effects can include sedation, nervousness, depression or insomnia.
  • Diazepam (Valium), clonazepam (Klonopin), baclofen (Lioresal). These medications reduce neurotransmission and might help some forms of dystonia. They may cause side effects, such as drowsiness.”

According to WebMD medications for Parkinson’s that a doctor may prescribe include: “Carbidopa-levodopaLevodopa, the most effective Parkinson’s disease medication, is a natural chemical that passes into your brain and is converted to dopamine. Some other medications for Parkinson’s include: Dopamine agonists. These drugs act like dopamine in the brain. They include ropinirole (Requip), pramipexole (Mirapex), and rotigotine (Neupro); Amantadine (Symmetrel) may help people with mild Parkinson’s disease; Trihexyphenidyl (Artane ) and benztropine Cogentin). These drugs restore the balance between two brain chemicals, dopamine and acetylcholine. That eases tremors and muscle stiffness in people with Parkinson’s; Selegiline (EldeprylZelapar) and rasagiline (Azilect). These drugs block the brain chemicals that break down dopamine. That helps your brain have more dopamine to work with. Some evidence shows that selegiline may slow the progression of Parkinson’s disease, especially early on; and Tolcapone and entacapone. When you take levodopa, a chemical in your body called COMT makes part of the drug useless. The drugs tolcapone (Tasmar) and entacapone (Comtan) block COMT, so the brain can use levodopa more effectively, which eases Parkinson’s symptoms.”

Another treatment that has been used for tremors for ET, Dystonia, and Parkinson’s is Deep Brain Stimulation (DBS). It was introduced around 1997 in North America. The neurologist I saw at Sunnybrook Hospital in Toronto was conducting a research project when I started seeing him. He has since gone on a tour around the world to help introduce the technique for treating these tremors. DBS is done when the person affected can no longer do regular daily tasks and is suffering dramatically with their symptoms. The procedure is – a probe is inserted into the brain and a controller is placed in the patients chest. The controller helps to send a signal to the probe to emit an electrical pulse that helps control the tremor – the control can be adjusted as needed by the doctor when needed. There are risks associated with this procedure consequently the reason why it isn’t used widely.

All three of these conditions cause a lot of anxiety and stress on both the person suffering and their families. If you can find ways to help deal with the condition, such as dietary adjustments if needed, more sleep, reduce your stressors, exercise if possible, meditate, massage, reiki treatments, reflexology treatments, or relaxation techniques, then by all means take the opportunity when it arises. Make sure to stay in touch with your neurologist and talk to them about any alternative treatments they may offer you in place of pharmaceuticals. I’m seriously against adding more drugs to anyone’s daily regimen if at all possible, especially if they don’t seem to be working. So I really recommend you do your own homework to investigate what is out there and available to you and talk to your neurologist about your findings.

There are several foundations you can use to help you understand these diseases more: IETF (International Essential Tremor Foundation); Parkinson’s Foundation; and Dystonia Foundation are just a few organizations that can help you or someone you know who suffers from these debilitating diseases and would definitely accept donations to help with their research projects, if you choose to.

Occasionally, I receive an email from a fellow blogger who would like to have their site added to mine. This one is an exceptional site and I would like to pass along the contact information here for you to look at – its called Positive Health Wellness. I hope you find something there that might help you in some way.

Thank you for listening this week.

Have a wonderful rest of your day and week ahead.

Blessings,

Louise

 

 

Author: Louise Gagne

I'm a retired senior who has found out that my diet was causing a number of health issues. Since becoming aware of this, I have decided to create this blog to help others in similar circumstances,

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