Category Archives: Treatments

On Haldol (Haloperidol)… Again.

In Black and White
In Black and White

For some time, it has been known that Haldol (Haloperidol) is one drug that should be avoided by people who have Parkinson’s disease.  It amazes me that conferences I have attended, webinars I have seen, things I have read by specialized doctors in the PD community all reiterate the claim: stay away from this and other like drugs.

However, when you talk to many PD patients, they have no idea that there is any concern over certain drugs being administered to PD patients.  Why? Because in most cases, they administered while you are in the hospital for some other reason other than PD related and the medical staff is unaware of the dangers, as well.

Most nurses AND doctors are not educated in the field of Parkinson’s disease and so administering drugs to calm a patient is seemingly protocol – NOT.

Over Thanksgiving, my mother n-law was telling about her time in the hospital a few years back and a doctor on duty ordered an MRI for her. She fought with the orderly over going to have it done as she lay in her hospital bed. She told the orderly, after insisting she wasn’t stepping foot in that room, that she had a pace maker.  The doctor later came to her and apologized for that ‘minor’ overlook.  What if she hadn’t been coherent? What if…

The point: you have to be proactive with your care and treatment. You have to know more about you than those caring for you or a life-threatening mistake could occur (see my previously published article of a PD patient and their experience with Haldol as told by his son in-law).

So, if you have PD,  here are the drugs you need to make  a note of to AVOID: Haloperidol (marketed as Haldol, Haldol Decanoate, and Haldol Lactate). This is an antii-psychotic drug, often prescribed to people with schizophrenia. Other like drugs include risperidone (Risperdal), aripiprazole (Abilify) and olanzapine (Zyprexa). These drugs will play havoc on your brain or much worse. One conference speaker (doctor – movement disorder specialist) went so far as to say they will KILL a person with PD.

There are, however, two drugs (antipsychotic) that can be used  without  a problem to the PD patient: quetiapine (Seroquel) and clozapine (Clozapine).

Well, I have done my Haldol rant for the year, but I’ll be back just in case you forget.

Dystonia and Bear Hugs


A neurological movement disorder that deals with sustained muscle contractions, causing twisting and repetitive movements or abnormal postures and can be a part of having Parkinson’s disease.

Symptoms of dystonia can include disturbed sleep patterns, tiredness, depression, poor concentration, change in vision, and more.  Normal activities can be more difficult to carry out.  Dystonia mimics other diseases as well, making it extremely important to not self-diagnose.  Neurologists and Movement Disorder Specialists are physicians specializing in various areas such as dystonia and Parkinson’s Disease, with the ability to clearly differentiate (although sometimes difficult in doing so, depending on how the disease manifests its symptoms) the similarities of diseases with commonalities such as these.

As well as the experiencing the symptoms listed above, dystonia tends to lend itself to continuous pain, cramping and muscle spasms. Because of the areas that can be affected, penmanship may become altered, dropping items becomes common, turning pages becomes a struggle.  The list can go on.

Focal dystonias are the most common types of dystonia are known as focal dystonias.  Another – Cervical dystonia – affects the neck muscles, whereas blepharospasm dystonia is known to affect the muscles around the eyes.  When the jaw and tongue muscles are affected, it is known as oromandibular dystonia.  The voice can be affected, causing a ‘crackling’ sound and is known as spasmodic dysphonia. When a patient suffers from both blepharospasmodic contractions and oromandibular dystonia, it is referred to as cranial dystonia, also known as Meige’s syndrome.

imageWhile some cases can worsen over time, some can almost be mild in their degree of symptoms and their affects on the body. Many drug treatments have been successful in managing symptoms, but recent treatments using botox have proven extremely successful for 3-6 months when injected into the affected areas.  Many PD treatments, including deep brain stimulation, are used for treating dystonia and are quite promising in helping the patient to cope with the disease.

What may seem like an odd treatment may actually be one of the best received and most helpful… a big hug. It has been proven that when encased in a tight ‘bear hug’ the tension and tightening of the contracted muscles are often released when squeezed tightly.

There aren’t many diseases (if any, that I am aware of!) that respond to such a simple, welcomed treatment. So – the next time you’re struggling with stiffness, spasms, and pain associated with having Parkinson’s disease and/or dystonia, ask a loved one to give you a tight bear hug and hold you for a few minutes.  You’ll  not only feel better physically but in every other way as well and so will they.  There is healing in a hug – for everyone involved.

Get It Out

imageLast summer, the findings of a study conducted by the University of Houston were released regarding the well being of female breast cancer survivors, specifically Chinese women. This ethnic group was chosen primarily because of the stigma cancer holds within the Chinese community.

“Unlike the Caucasian population, many Chinese have less knowledge of breast cancer and they feel that the cancer is very threatening, and they associate it with immediate death,” said Qian Lu, assistant professor and director of the Culture and Health Research Center at the University of Houston.

The study, which was published in Health Psychology, a scholarly journal, was based upon writing. Each of the 19 participants in the study (based in the Los Angeles area) were given health assessment questionnaires before the study began, followed by three sets of instructions.
In week one, patients wrote about their deepest thoughts/fears/emotions in regards to their experience with breast cancer.

Week two, they wrote about coping mechanisms they used to relieve stress brought on by the disease, and in week three they were to write about their positive thoughts and feelings. The patients who put in 20 to 30 minutes each day regularly (3-4 days per week) for the three week period saw positive change in relationship to their immune system.

The report stated that the purpose of the writing exercise was “to facilitate emotional disclosure, effective coping and finding benefit, which would work together to bring stressors and personal goals into awareness and regulate thoughts and emotions relevant to the cancer experience.” It also went on to say that the “release offered by writing had a direct impact on the body’s capacity to withstand stress and fight off infection and disease.”

So – what’s this have to do with Parkinson’s disease?

I don’t think Chinese women have an edge when it comes to writing about their illness, disease, sickness, heartache, joy and/or thanks-givings. No – I believe that writing is good for anyone’s mind,  soul,  heart, and  spirit. You can scratch down (or type out) your thoughts and feelings and say whatever you choose in regards to how you’re feeling. It’s a release of pent up frustrations, anger, fear, confused thoughts, sorrow, grief – the list could go on and on. It’s a release when no one else will listen or when no one may understand. It’s called journaling. It’s therapy in its least expensive form (besides the one on one sharing of conversation between two good friends).

Journaling (or as the study referred to – writing) will not cure cancer. It will not cure Parkinson’s. But it will allow for a place to dump the stress and walk away, perhaps leading to a feeling of life being a bit lighter. When you’re body isn’t focused on fear, grief, sorrow and the like, it has a greater capacity to “withstand stress and fight off infection and disease,” as Lu stated above. Journaling offers the opportunity to get out your fears without feeling foolish. To release the grief over feeling you’ve lost something valuable. To be thankful for what you do have.

And that last sentence is important…

If you spend your time journaling everything negative about your life with PD, your life with PD will be anything but positive. There are still good and beautiful things to behold in the midst of this journey. So, if you are thinking about journaling your life with Parkinson’s disease, either as a patient or a care giver – release the fears, the unshed tears, the grief and the sorrow onto paper but make sure you include and end with the positive. Always end with something positive.

It’s there. I promise.

via National Parkinson Foundation: Short and Long-Term Problems with Anticholinergic Drugs used for Sleep, Bladder, and Tremor Symptoms in Parkinson’s Disease Patients

You can find out more about NPF’s National Medical Director, Dr. Michael S. Okun, by also visiting the NPF Center of Excellence, University of Florida Health Center for Movement Disorders and Neurorestoration. Dr. Okun is also the author of the Amazon #1 Parkinson’s Best Seller 10 Secrets to a Happier Life.
  Parkinson’s disease patients frequently struggle to identify drug therapies that can address bothersome symptoms such as sleep dysfunction, bladder urgency, drooling, and tremor. Many of the drug therapies such as Benadryl (diphenhydramine), Advil PM, Alleve PM, common antihistamines, and others pills are readily available over the counter and do not require a prescription. These medications block a cholinergic receptor in the brain, and can improve many Parkinson’s disease symptoms. However, the price of taking these drugs may be steep (thinking problems, confusion, unsteadiness and even falling). An older French study of hospitalized Parkinson’s disease patients revealed that though 46% of all demented patients were confused, 93% on anticholinergic therapy had delirium and confusion when in the hospital (Agid et. al.). Deficiencies of the chemical acetylcholine have been reported to underpin thinking issues and shortages of the chemical have been observed in the brainstem, hippocampus, and cortex of Parkinson’s disease patients. Though anticholinergic use can result in drowsiness, dry mouth, urinary retention, memory problems as well as constipation, many patients find these therapies useful. In this month’s What’s Hot column we will address the short and long-term potential side effects of using of anti-cholinergic medications in Parkinson’s disease.
Cooper and colleagues in 1992 addressed thinking ability in a group of 82 freshly diagnosed and untreated Parkinson’s disease patients. The patients in this study were all randomized to receive levodopa (Sinemet), bromocriptine (a dopamine agonist) or an anticholinergic drug. Though all three treatments improved motor performance, the anticholinergic drugs produced memory impairments. Many subsequent studies including the National Parkinson Foundation QII prospective study have confirmed these findings.
Perry and colleagues in 2003 investigated the idea that blocking brain acetylcholine receptors could lead to more “Alzheimer’s changes” in the Parkinson’s disease brain. Interestingly, the researchers reported that an important marker of Alzheimer’s disease, the amyloid plaque density, was present in more than double the concentration in Parkinson’s disease patients treated with long-term anticholinergic therapy. Another marker of Alzheimer’s disease, the neurofibrillary tangle, was also more prominent in the brains of those taking anticholinergic drugs. 
The most recent worrisome evidence surrounding anticholinergic therapy is drawn from an article in a recent issue of JAMA Internal Medicine written by pharmacist Shelly Gray. The authors utilized data from the Adult Changes in Thought Study. The investigation was based in Washington state and had an impressive 3434 people enrolled who were 65 years or older. All study participants were screened at inclusion to be sure there was no evidence for dementia. The authors cleverly used computerized pharmacy data to assess each participant’s exposure to anticholinergic drugs. The most common anticholinergic drugs were old-fashioned tricyclic antidepressants (TCA’s), antihistamines, and also drugs used for bladder and sleep. The patients were followed for 7 years and the data revealed that over 20% were shown to develop dementia. Participants who took anticholinergic drugs for three years or more had a greater than 50% higher dementia risk. Also, a higher cumulative dose of anticholinergic drugs increased the risk for dementia when compared to those taking anticholinergic drugs for 90 days or less. 
The bottom line for Parkinson’s disease patients is that there should be a greater awareness of the short and the long-term potential side effects of anticholinergic therapy. Short-term, Parkinson’s disease patients should be aware that anticholinergics may precipitate drowsiness, dry mouth, urinary retention, memory problems, blurry vision, and constipation as well as a host of other side effects. Long-term, there is an increased risk of dementia. It is important for Parkinson’s disease patients to routinely review medication lists with both a doctor and a pharmacist and to try to identify other medication alternatives. 
Some practical suggestions include:

Identify alternative antidepressants with less anticholinergic effects

Watch out for over the counter drugs like Benadryl (diphenhydramine) and antihistamines

Dopamine agonists, levodopa, and deep brain stimulation can all potentially be used for difficult to control tremor instead of anticholinergics

Botulinuma toxin injections can be employed for drooling and for some cases of bladder dysfunction

Sometimes atropine drops under the tongue or chewing gum can be employed for drooling issues

A type of physical therapy referred to as pelvic floor rehabilitation can be helpful for bladder retraining in those with urinary frequency

If hospitalized be sure the doctors do not use anticholinergics for sleep or bladder dysfunction

Parkinson’s disease patients and their interdisciplinary care teams can usually work together to reduce or to eliminate anticholinergic drug use.

Sleeping With the Enemy

Artwork by Sherri Woodbridge Copyright 2011
Artwork by Sherri Woodbridge
Copyright 2011

My first few years with Parkinson’s were crazy. Trying to get the timing of the drugs right, the dosages, the amounts, dealing with side effects. Looking back, I think one of the most frustrating aspects to the drugs was how sleepy they made me.  But because of the Parkinson’s itself, when everyone else was laying their head on soft pillows at night, dozing into blissful moments of deep sleep and already dreaming dreams, I  was chatting online with a new friend who also found herself in my shoes – unable to sleep in the wee hours of the night and morning because we had Parkinson’s disease.

When you think of PD, you usually picture someone shaking, but there’s more to it than that. Like wreaking havoc with your – what was once known as – sleep pattern. Ah, what we wouldn’t give to be able to sleep like a baby again, but that is actually what we do. We sleep like babies. Up and down all through the night, sometimes awaking from bad dreams, sometimes too hot from night sweats, sometimes awaking in fear due to nightmares from the drugs we take.

What to do, what to do.

Here are  a few suggestions to making sleep more attainable. Everyone’s different, so what works for some, may not work for all.

  1.  Put on relaxing music. Quietly, as everyone else is sleeping, remember? My daughter can only fall asleep with her ear plugs in and listening to music as she tries to fall asleep.
  2. Read a book. Preferably a boring one.
  3.  Make sure you’ve taken your medications. If I miss my evening dose, I am almost always guaranteed to have battle with the restless leg syndrome monster and that guarantees me at least an hour and a half more of not being able to sleep.
  4. There is a plethora of sleeping aides on the drug store shelf. Some recommend one over the other, but it comes down to what works best for you, if they’re giong to be helpful at all. It’s a good idea to run it by your doctor first before adding more drug substances to your mix.
  5. Essential oils are the rage and there is actually a mixture for sleeping that my daughter introduced me to that you rub on your feet. Her oil rep made her own mixture so you’d have to contact a Doterra rep or someone who knows essential oils.
  6. Many people are going for other remedies which I cannot recommend given I haven’t and don’t intend to try them, but they swear by their effectiveness (one  being medical marajuana).
  7. Melatonin seems to be a very popular sleep aid for people who find it difficult to sleep and is natural.
  8. Sleep-time tea, Nighty-nite tea… There are also many teas to relax  and  help you get to sleep. Check your grocer’s shelves.
  9. A technique that I have found that works for me is, as I am laying in bed (and maybe oddly enough, I can only fall asleep in one position) I intentionally make my body relax and then begin to pray. It works 100% of the time.

What is your suggestion on sleeping with the enemy – Parkinson’s disease?

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