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PD Community Blogs

We’ve searched the “blogosphere” for creative, informative and educational blogs that might be of interest to you.

Kate Kelsall: Shake, Rattle and Roll
Kate was diagnosed with Parkinson’s disease in the mid-1990s. In addition to being an activist for Parkinson research, she is a co-facilitator of a DBS support group in Denver.

Here’s a few more blogs that are worth checking out.

Patient Blogs

Caregiver Blogs

National Parkinson Foundation: Caregivers on the Blog

Voices from Parkinson's community


Nonmotor Symptoms in Parkinson's Disease, Part I

Date: Mar 06, 2014

By Aaron Haug, M.D., Blue Sky Neurology

Tremor gets the most attention. It is often the resting tremor that first brings Parkinson disease (PD) to someone’s attention. It may be that people with Parkinson’s (PWP) ask their physicians about it, or their physicians may be the first to notice it, but resting tremor is often the symptom that leads to the diagnosis of PD.

Because tremor is the most obvious symptom for many PWP, it can sometimes remain the center of attention for too long. While tremor and other motor symptoms certainly can cause functional disability and should be treated optimally, it is often the nonmotor symptoms of PD that cause a significant portion of the discomfort and disability for PWP.

Nonmotor symptoms can affect a wide range of bodily functions. This two-part article will present some of the most common symptoms and their treatments. Not everyone will experience all of these symptoms! It can be overwhelming to see all of these symptoms listed one after the other, but it is important for PWP and their loved ones to be aware of these symptoms so that treatments can be considered.

Sleep Symptoms.

REM Sleep Behavior Disorder (RBD). Normally, a person’s body is paralyzed during sleep. In some PWP this safety mechanism is lost, and they can unknowingly act out their dreams. This is often noted by the bed partner as kicking or punching behavior. Treatment with clonazepam, a benzodiazepine, can be very effective.

Restless legs syndrome (RLS). RLS is described as a creepy-crawly, achy, tight, or restless feeling in the legs, which is usually worse in the evening and briefly relieved by moving the legs. Many of the medicines that are used to treat tremor and motor symptoms (levodopa, pramipexole, ropinirole, rotigotine) are effective for RLS, and clonazepam can also be effective. Opiate or opioid-like medicines (such as hydrocodone, oxycodone, or tramadol) are sometimes used in more severe cases.

Insomnia. Difficulty falling asleep or staying asleep is common in PWP. An important part of treating insomnia is good sleep hygiene. This includes behaviors such as setting a regular bedtime; not drinking caffeine after noon; and not drinking alcohol in excess. If one has been in bed for more than 15 minutes and is not falling asleep, it is advisable to get out of bed, do something boring (like read the phone book), and then try again. As far as medicines, melatonin is a supplement available over-the-counter that can be very effective in PWP. Prescription medicines such as clonazepam and Ambien can be effective but are not meant to be used long-term. Medicines that contain diphenhydramine (i.e. Benadryl, which is an ingredient in medicines such as Tylenol PM or Advil PM) should generally be avoided as they can cause confusion in older patients, and this problem can be more prominent in PWP.

Excessive Daytime Sleepiness. First, try to improve nighttime sleep with the strategies above. If sleepiness persists, brief naps can be very helpful. If these measures are not enough, medicines such as methylphenidate (Ritalin), modafinil (Provigil), or armodafinil (Nuvigil) are often used.

Behavioral Symptoms.

Anxiety and Depression. These symptoms are both common in Parkinson disease. This is partly because levels of brain chemicals involved in mood, such as serotonin and norepinephrine, are decreased in PD along with dopamine. Counseling and talk therapy can be helpful and are worth considering before prescription medicines. Benzodiazepines, such as clonazepam, can be helpful for anxiety. There are many medicines that can be helpful with depression as well as anxiety: fluoxetine (Prozac), sertraline (Zoloft), citalopram (Celexa), escitalopram (Lexapro), paroxetine (Paxil), buproprion (Wellbutrin), venlafaxine (Effexor), desvenlafaxine (Pristiq), mirtazapine (Remeron), vilazodone (Viibryd), and  trazodone.

Dementia. Memory loss and changes in thinking can occur in PWP. Cholinesterase inhibitors can improve thinking and memory in some PWP; these include donepezil (Aricept), rivastigmine (Exelon, Exelon patch), and galantamine (Razadyne). Occasionally PWP with dementia can become agitated or have hallucinations. Quetiapine (Seroquel) and clozapine (Clozaril) can be helpful for these symptoms. Other antipsychotic medications, such as haloperidol (Haldol), risperidone (Risperdal), aripiprazole (Abilify), olanzapine (Zyprexa), and ziprasidone (Geodon) should be avoided as they can make the motor symptoms of PD worse. 


In the next issue, autonomic nonmotor symptoms such as orthostatic hypotension, overactive bladder, erectile dysfunction, and gastrointestinal symptoms will be discussed.  Again, although not everyone will experience these symptoms, it is important to be aware of them so that treatment options can be considered and discussed.


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Nonmotor Symptoms in Parkinson's Disease, Part II

Date: Dec 16, 2013

By Aaron Haug, M.D., Blue Sky Neurology

 This is second article in a two-part series discussing nonmotor symptoms in Parkinson disease (PD).  Although it is often tremor that first brings PD to someone’s attention, the nonmotor symptoms of PD can cause a significant portion of the discomfort and disability for people with Parkinson’s (PWP). Not everyone will experience all of these symptoms, but it is important for PWP and their loved ones to be aware of these symptoms so that treatments can be considered.

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Spring time in the Rockies

Date: May 05, 2011

Spring time in the Rockies. What does that mean to you? One can use the analogy of Parkinson's and Spring. The weather is unpredictable in the Spring. There are beautiful days outside. Sometimes, storms which vary in severity. There can be an extreme range of temperatures and conditions. Sound familiar with your own case of Parkinson's. Each one of you may have different extremes on any given day of symptoms. Some days, you may feel like you can't go out because of your symptoms. Other days, nothing can stop you from exploring the outdoors.

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Parkinson Wellness Recovery (PWR!) Project

Date: May 24, 2011

People with PD can get better... and stay better longer with exercise!
That is the MOTTO of the Parkinson Wellness Recovery (PWR!) Project – a project sponsored by NeuroFit NetWorks (www.nfnw.org). The PWR! Project was started in October 2009 when Dr. Becky Farley, a researcher, LSVT® BIG inventor, physical therapist, neuroscientist, and Parkinson’s exercise specialist opened a model community-based neurofitness center for people with PD in Tucson, AZ…

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Cognitive Changes: What Was I Thinking?

Date: Jun 24, 2011

Is your brain less agile and your memory less reliable? Compared to last year, are you more easily confused and slower to process information? While these types of cognitive changes are common in individuals with Parkinson’s disease, they are also part of the normal aging process. A significant number of the elderly live with some memory deficiencies, collectively known as age-associated memory impairment.

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Summer in Colorado

Date: Jul 25, 2011

Outdoor activities in the summer can be wonderful. As usual when having a leisurely evening barbeque with family and friends, you are the designated grill master. As you are running in and out of the house to tend to the grill you notice it is not as easy as it was last summer. At times you lose your balance, stumble and even fall. However, you are determined not to lose your place as grill master. You are not going to let Parkinson's disease get in the way.

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Was I Dreaming?

Date: Sep 19, 2011

I woke up Monday morning to a slight buzz throughout my body. “Today is the day!” I thought. I rode the BX bus from Boulder to Market Street Station, then took a quick 16th Street Shuttle ride, and walked a block or so to my destination. The buzz was still present as I walked through the door of the Colorado Ballet and read the note saying “Rhythm & Grace meets in Practice Room C.” I was 30 minutes early for the noon class. “Today is the day!” Wow!

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Parkinson's and Fatigue

Date: Oct 03, 2011

Many people with Parkinson's disease experience fatigue. They often say they feel tired, even exhausted. It can be just as disabling and unpleasant a symptom as the motor slowing or the trembling. Fatigue is typically experienced as a state of being tired, weary, exhausted and without energy. Some people say it feels like walking underwater. Everything is an effort and exhausting. You can have fatigue and no depression. Most people with fatigue are not not sad.

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Why Fitness Counts

Date: Dec 07, 2011

Recent research shows that regular exercise can help people with PD stay more flexible, improve posture and make overall movement easier. Some studies even show that an exercise routine can slow or reverse some of the effects of the disease. Regardless of the disease, being fit and active makes everyone have more energy and improves overall health and well being. Everyday exercise, even if it is something simple, will help fight the effects of the disease and make you feel more in control of your condition. It’s recommended that a physical or occupational therapist design a fitness regimen specific to helping your needs, but here are some tips that everyone can use for everyday, at-home exercises:

  1. Streeeeetch- Stretching can be done several times during the day, even during the simplest of activities like while watching TV, riding in the car or when you wake up. Regular stretching increases range of motion of joints, helps with posture, protects with muscle strains, improves circulation and releases muscle tension.
  2. Strengthen- Strengthening exercises can help you stand up straighter, make certain everyday tasks easier and makes bones stronger. Visit here for 10 strength and balance exercises.
  3. Aerobic conditioning exercise- Examples of aerobic exercises include walking, swimming, biking or dancing. Regular aerobic exercise performed 3 or more times a week can strengthen your heart and lungs, reduce stress and help prevent other health conditions like diabetes.

Come to our next exercise class and get in your daily aerobic exercise! Visit here for more information.
*Referenced from the National Parkinson Foundation booklet, "Fitness Counts".

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Ginny Fraser's Three Steps to Living Happily with PD

Date: Dec 12, 2011

This posting is a snippet of the Recently Diagnosed with PD blog, written by Betsy Vierck.

Almost three years ago I was also diagnosed with Parkinson's. Ginny and I became refuges for each other. We have been extremely tight, speaking in a language that non-PDers can never understand.

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