A Wild Ride!

Parkinson's Disease (PD) is the second most common neuro-degenerative disorder after Alzheimer's disease, with a prevalence of 0.35-3%, as the age advances. Parkinson's Disease is a slowly progressive brain condition which manifests with both motor and non-motor symptoms. The cause of Parkinson's Disease still remains uncertain through appears to be complex. Several genetic factors and genes have been identified implying that there must be some genetic predisposition, which under environmental influences lead to damage to the dopamine-producing deep nuclei (brain chemical) of the brain. Dopamine helps with transmission of brain signals in order to maintain smooth control of movements [and body functions] and when dopamine levels drop, people start experiencing symptoms of PD. The pathological hallmark of PD is called Lewy body, which are aggregates of proteins called alpha synuclein. 

There are certain factors that can increase the risk of developing Parkinson's Disease, such as age (risk increases with age), profession (contact with chemicals), race (white) serious head injury(severe enough to lose consciousness/memory), gender (men), living situation (rural/farmland/well water use), etc.

The majority of patients are classified as idiopathic (unknown cause) PD. In a small number of cases (5-10%), there is a family history of PD. The genes that are potentially implicated in the development of PD are called PARK genes, which can be transmitted in an autosomal dominant or recessive manner. [Parkinson's patients are sometimes called PARKIES because of these genes].This suggests that additional research is required to identify additional unrecognized genes.*

I've included the above excerpt from this month's PANC newsletter, because I think it is a good description of what Parkinson's Disease is. It is a difficult disease to describe because of the multitude of symptoms and the diverse ways it exhibits itself in each person. We've been on this journey for more than 23 years, and yet I still have a tough time describing it to people who ask. Every day PD changes. Some days Jamey cannot walk or speak well, and other days he can stand straight and even hit baseballs at the batting cage! Crazy!

Unless you are dealing with PD, or know someone who is, you might not realize, in addition to movement disorder, PD effects body temperature, bowel performance, urination, sleep, swallowing, breathing and vision . All of these things are dictated by the chemical dopamine, so the loss of such, creates erratic body function. And that erratic function makes it difficult to plan your day, or for that matter, your hour or minute!

The unpredictability of PD is troublesome enough for us, but strangers find it disconcerting as well. People frown at Jamey when he gets up from his wheelchair and walks (less and less often, now) because he appears perfectly capable of walking all of the time. Sometimes he has no tremor or other tell-tale symptom. When he is stuck and cannot move, people behind him get annoyed that he is in their way. I believe it is because people are ignorant about the disease. Even though PD is the second most prevalent disease, there is still so much unknown about it. When we are ignorant about something, we tend to get frustrated because we can't identify. It's that way for all of us. We can't completely understand another's plight unless we are walking in their shoes. And even then, there is no guarantee we will understand. We're NOT them.

With that said, I know that there is a reason we are on this journey, and I am thankful we are able to help others along who may be going through a similar situation. It does our hearts good to know we have possibly helped someone else by sharing our experiences or what works for us. We're all in this together, even if our diseases don't exhibit the same way.

This is a minute to minute challenge. Are you up for it?!


*PANC Parkinson Association of Northern California, The Parkinson Path Newsletter, Fall 2019. www.panctoday.org.

Don't Hold Your Breath

Parkinson's is a chronic condition. The disease doesn't kill you, but the symptoms can. One of those symptoms is restrictive airway; scary to be sure. Because PD sufferers tax their brains thinking about the things most of us do automatically (like breathing, walking, moving), they will often not realize they're holding their breath, or breathing less deeply than what is needed. Shallow breathing can lead to a lung issue called Dyspnea, a product of pulmonary and respiratory muscle function impairment. 

Dyspnea is troublesome enough, but add to that, a diagnosis of COPD (chronic obstructive pulmonary disease) like my poor husband just got, and you have a recipe for added stress. Life-threatening stress! 

Just contemplate this for a moment. How many times a day do you think about breathing? Zero? That's most of us. For those with Parkinson's, concentration on breathing takes up much of their thoughts. With all of the other things they are dealing with, they have to think actively about things we take for granted. Because of this, breathing becomes shallow, or takes a back seat to what seem like more pressing issues. Re-building strength in the lungs, and expanding lung capacity is of utmost importance to those with Parkinson's or COPD.  But, how do you do that?  Exercise of any kind is beneficial, but breathing exercise is imperative for the COPD or Dyspnea sufferer.

Try this:

Lay on your back, on the floor (or your bed if you cannot get down that far), with your knees bent, and feet flat on the floor/bed. Make sure the small of your back is touching the floor/bed.  Place one hand on your navel. Inhale slowly, making sure the hand over your navel, rises. This assures you are breathing from your diaphragm, exactly as you should be. Lying on your back should help relax you enough that the air will automatically go into your diaphragm, but, if your navel isn't rising, practice diaphragmatic breathing by forcing the breath out of your body, as if you are pushing out your last breath before dying. Keep pushing the air out until your body forces an inhale. This should get your system to force the air into your deep belly, or diaphragm. Remember to push your navel toward the floor/bed while you're doing this. If you have Parkinson’s,  your body's rigidity will fight breathing correctly, so be patient, and keep trying.

Once you have mastered diaphragmatic breathing, you can do it sitting or standing as well. Try these exercises:

• Inhale deeply for a count of four (4)
• Hold your breath for a count of four (4)
• Exhale for a count of four (4)
• Hold your breath for a count of four (4)

Do this set of breathing four times in a row, four times a day, to help your breathing with Parkinson’s or COPD.

Other things to help strengthen your lungs:

1. Blow into a party blower (you can get these at the dollar store)
2. Take up the harmonica 

3. Pick up a Breath Builder from your doctor and practice blowing the balls all the way up to the top 

The main thing is NOT to give up! We all need to breathe, so don't ignore your symptoms. And, it won't hurt to do this even if you don't see symptoms. 
Be proactive and breathe easier!

Sleep Deprived?

Cat Napping Can Be Beneficial

Jamey is dealing with a lot of sleep issues right now. And it is having a substantial impact on his daytime Parkinson's symptoms. 

It is not uncommon for people with Parkinson's to have sleep problems, ranging from frequent episodes of sleeplessness to full-on insomnia. If you've ever experienced sleep deprivation, you know how invasive it can be. Lack of sleep can effect every area of your life; memory, cognition, mood, and energy level. If you cannot sleep properly at night, you might find you sleep more often during the daytime. When your circadian rhythm is thrown off like that, it can be near impossible to get it back on track. For PD sufferers, lack of sleep can elevate and exacerbate already difficult symptoms.

Jamey has experienced a number of sleep disorders since being diagnosed with Parkinson's Disease; REM Sleep Behavior Disorder (REM SBD - acting out dreams during sleep), Restless Legs Syndrome (RLS), Peridic Leg Movement Disorder (PLMD), excessive daytime sleepiness, Nocturia (frequent nighttime urination), and Insomnia. Many can be attributed to the disease itself, and others are a side effect of the medications he takes. Other sleep issues for Parkinson's, include:

• Nightmares
• Sleep attacks (a sudden involuntary episode of sleep)
• Sleep apnea
• Narcolepsy
• Discomfort, fidgetiness

In addition to sleep problems, people with Parkinson's disease often experience sleepiness during the daytime. In fact, one study found daytime sleepiness in 76% of Parkinson’s patients. Striving to maintain healthy sleep habits can help Parkinson’s patients with both the physical and psychological symptoms of their disease. 

So the question is, how do we get sleep with PD?

• Keep a regular sleep schedule, going to bed and getting up at the same time each day.
• Take sedating medication late enough in the day so that it enhances sleep at bedtime. (Pay attention to side effects or your regular medications. If sleepiness is a side effect, take it later in the day). 
• Use satin sheets and pajamas to help with getting in and out of bed and turning in your sleep.
• Minimize beverages before bedtime to help avoid Nocturia (frequent nighttime urination).
• Get exercise and exposure to light early in the day. 
• Limit your naps to 20 minutes or less. A cat nap can actually energize you for a short time and help you sleep better at night.
• Use your bed for sleep only (no reading or watching TV for long periods in bed)
• Spend time outdoors, preferably in the morning or shortly after waking. 
• Light therapy may help normalize the sleep/wake cycles of Parkinson’s patients, especially those who may be unable to spend time outdoors.

As Parkinson’s disease progresses and symptoms get worse, sleep problems may become more pronounced. Daytime sleepiness may also increase as Parkinson’s disease progresses. If you must sleep during the daytime, set your alarm, or have your care partner wake you up in 20 minutes. Shorter naps should keep the body from being too alert at bedtime.

I would love to tell you it will get easier, but unfortunately, it doesn't always. Try and follow the above rules as best you can. If it doesn't get better and you are awake more than you are asleep, maybe you can complete that 'honey do' list you've been putting off. Paint the house, repair the fence, mow the lawn, and clean out the garage. Your spouse will love it and it should at least pay off in deep sleep that night!

Placebo Effect vs. Noncebo Effect

Why is Parkinson's research more difficult than other neurological disease research? Because of dopamine...or lack thereof! Parkinson's brains do not make enough of  the chemical dopamine, and this is the primary reason research for a cure is taking so long. Let me explain.

Dopamine is an organic chemical produced by a healthy brain. It is a neurotransmitter--a chemical released by neurons (or nerve cells) to send signals to other nerve cells. There are several pathways dopamine travels. One of the pathways is directly connected to the component of reward-motivated behavior. The anticipation of any type of reward increases the level of dopamine in the brain, often causing a euphoric response. 

The other pathways dopamine uses are involved in motor control and the release of various hormones. The latter pathways are of course, why Parkinson's sufferers (whose brains produce far less of the chemical) have trouble with movement, elimination control, body temperature and a myriad of other bodily functions.

In order to obtain informational research for any neurological disease, blind studies are conducted. Because PD patients are dopamine-deprived, their research data becomes skewed. For instance, if a PD test subject believes he has been given a placebo, his dopamine levels may drop because he is saddened or anticipating a negative outcome (placebo effect). Or, if the subject believes he has been given life-saving medication, his diminished dopamine levels might climb (noncebo effect). Because Parkinson's is a dopamine-based disease, results can be easily misunderstood. Parkinson's is the only disease, Neuro or otherwise, to experience these issues in trials. To say testing is a challenge is a vast understatement. 

PD researchers have had to take another tact to finding a cure. One of the avenues they are investigating is the question of why a PD tremor stops when the patient is in REM sleep. All tremor stops during deep sleep mode and they are still unsure why. If scientists can find an answer to that question, they might well be on their way to finding a cure, or at the very least, a possible solution to essential tremor. So, be assured researchers are working diligently even when we don't feel like they're moving fast enough.

Parkinson's is a unique and puzzling disease, and the challenges are enormous. But, as we wait for progress we can pray, give financially, and/or participate in a study. All of these things add to the arsenal of data for a Parkinson's cure!

A Specialist for Every Symptom

If you or a loved one has been living with Parkinson's, you know that it is a disease like no other. There are a multitude of aspects to this disease that are impossible to address with only one doctor. A number of specialists must often be enlisted with PD.

A recent article in PANC (Parkinson Association of Northern California1) suggests that, although twenty years ago Parkinson's was considered a movement disorder, we now know that there is so much more to this disabling condition. So many facets of life are touched by the lack of body's manufacture of dopamine.

Note just a few of the things affected by PD: constipation, diarrhea, sleep disturbance, depression, anxiety, cognitive impairment, trouble with speech, difficulty swallowing, and body temperature regulation. But that is just the tip of the proverbial iceberg! Thankfully, research has opened the door for medical experts to step in and lend help in each of these areas of need. And, thankfully, we are seeing more and more insurance companies and Medicare help out with many of the costs.

Today's PD sufferers might enlist the help of one or ALL of the following:

1.   Neurologist or Movement Disorder specialist

2.   Neuro Physical Therapist (a PT who is neurologically trained, possibly certified in LSVT BIG2 or PWR3)

3.   Speech/ Swallow Therapist (often a specialist in LSVT LOUD2)

4.   Psychologist or Counselor (for PD sufferer and care partner both)

5.   Psychiatrist or Geri-psychiatrist (experts in depression, anxiety and psychosis)

6.   Social Worker

7.   Occupational Therapist

8.   Personal Trainer (or program like RSB4)

9.   Gerontologist and/or Urologist

10. Dietitian or Nutritionist

11. Palliative Care Specialist

12. Financial Planner

In a perfect world, there would be NO Parkinson's. However, barring that, we hope the clinic of the future will have all of these specialists in one place and available to all Parkinson's and other neuro disease patients. 

In the meanwhile, care partners should learn to be good advocates for their PD sufferers and make sure specific symptoms for their loved ones are addressed properly. Have your general practitioner recommend specialists for all areas of discomfort. Find PWR, LSVT programs, RSB, and other Parkinson's treatments in your area and attend, to find the one that works best for you and your loved one. Since every case of PD is different, each individual will respond differently. Try, until you find the right fit.

We're all in this together, so glean information and experience from others on the same journey. And, NEVER give up! Also, never discount the power of prayer. If you're one who prays, then pray. If you're not, you may want to take it up! It sure helps us get through the tough times and keep our heads above water!

Life is still good, so don't give up quite yet!


1 The Parkinson Path. PANC: Spring 2019, Multidisciplinary Care for Parkinson's Disease, by Norika Malhado-Chang, M.D., Associate Professor Neurology, UC Davis School of Medicine.

2 LSVT Global, Inc. pioneered the Lee Silverman Voice Treatments (LSVT LOUD® ; and LSVT BIG® ), innovative and clinically-proven methods for improving communication and movement in individuals with Parkinson disease with application to other neurological conditions.

3 PWR: Parkinson's Wellness Recovery, NeuroFit Networks DBA: Parkinson Wellness Recovery | PWR! is a 501(c)(3) tax exempt nonprofit founded in September 2010 by Dr. Becky G. Farley to translate cutting edge research on exercise and brain change into real world health care paradigms TODAY for individuals with Parkinson disease.

4 RSB: Rock Steady Boxing, A 501 (c)(3) nonprofit organization, gives people with Parkinson’s disease hope by improving their quality of life through a non-contact boxing based fitness curriculum. www.rocksteadyboxing,org

Walking a Tightrope

Trying to balance medications for any disease is difficult, but with Parkinson's it becomes a constant struggle. Because PD is unpredictable, not only in symptoms but in how it behaves in each person's body, it is difficult to get medication to respond perfectly to the disease. And it seems once you have mastered the perfect timing and medication dose, the PD changes and you have to start all over again! This is just one of the things that makes PD different than other neurological diseases.

In addition to the medication issue, there is no expected symptom or routine for PD. One person my have tremor and slow movement, another may not have any tremor but be plagued with stiffness and dystonia (twisting movements or abnormal fixed postures). Each individual can have a countless number of symptoms that may progress as the disease progresses, or may not. Symptoms may be added, or the disease may stay the same for a long period of time. If you're not a gambler, this is a tough disease to navigate. It is similar to predicting a game of craps! 

But, don't lose heart! Some of the medications do work fairly well, and one can learn to manage them, though sometimes it is a tricky balance. If you are a type A personality, put on your "patience" helmet as your natural wiring will surely be tested! It might take some time to get the right timing and proportions of medication for you, but keep trying things until you do. Some of the medications you might ask your Neurologist about (in order of most used) are: 

Cabidopa/Levodopa
Sinemet
Azilect
Ropinirole
Amantadine
Pramipexole
Mirapex
Requip
Simemet CR
Selegiline
Comtan
Rasagiline
Mirapex ER
Requip XL
Cogentin
Cannabis
And many more...

You can see, by our list, the myriad of symptoms for this disease requires a myriad of medications. Those who were diagnosed with early onset PD (my husband) take different medications than someone who is diagnosed at an advanced age, primarily because the side effects of the medications (which can occur after 20 years or so) will exhibit while the early-onset person is still relatively young, whereas, the older person will often be gone by the time they occur.

DBS (Deep Brain Stimulation) surgery is another option for symptom relief. You must be evaluated extensively by your neurologist to be proven as a good candidate. They take into consideration many things and there is detailed testing before the surgery. But, DBS can put off progression of PD and alleviate some symptoms temporarily. In my husband's case, it did allow him to drive and work about 3 years longer than he would have been able to. And, after almost 13 years, he is still getting some benefit.

Every type of Parkinson's Disease DOES respond to exercise, so that is the best thing to have in your arsenal! Exercise for PD sufferers has been proven to ward off the symptoms and progression of the disease. It will not necessarily give immediate relief or subdue the current symptoms, but, it will ward off the progression of future symptoms. For my husband, this was a difficult concept to understand. He was under the impression the physical exercise he was doing would make him feel better, or lesson the symptoms immediately. But exercise won't necessarily do that. In his case, it hasn't. However, it will most certainly keep the disease from getting worse. Because it's not always easy to see results, we must employ a certain amount of trust that it is doing what it is supposed to do. So, don't discount exercise. It is a proven abeyance! 

There are a great deal of new medications and research on the horizon, but be leery of outrageous claims, i.e., "Stem Cell Cure!", "Cure on the Horizon!", etc. I have an acquaintance whose brother bought into the stem cell cure, paid hundreds of thousands of dollars to have it done, and got absolutely no benefit. Be careful! Every news station in the country will be touting a new proven breakthrough, especially one as lofty as an actual cure, so if you haven't heard about it on the 10 o'clock news, or if your doctor hasn't told you about it, it probably isn't valid! My husband and I have been on this wagon for over 22 years and every couple of years, we hear, "Five more years and we'll have a cure". It's good to keep hope alive, but temper it with realistic expectations.

 Research is moving along and they are coming up with great helps every day, but it could be awhile before there is a cure. So keep walking that medication tightrope, and keep exercising!

For Care Partners

Care Partners are often a forgotten entity when it comes to ill loved ones. The article below, reinforces the fact that doctors often overlook the importance of the care partner. Thankfully, Jamey's doctor DOES recognize my importance and always includes me in our visits. However, if you have a doctor that forgets (they are human after all), don't hesitate to chime in and share, or gently correct an answer your loved one gives the doctor. Loved ones often forget, or downplay, what they are going through. It's important to give the medical expert an accurate assessment of your loved one's issues.


All too often, when in the clinic, a medical provider focuses on the patient and not the others in the room. This is particularly true for Parkinson's disease. We maximize and monopolize the time to focus on the patient's concerns. But we [often] neglect the care partner. This may be the spouse, child, other relative or a friend. They can be a valuable resource of information to corroborate the patient's story or to build upon it.

I recently had a spouse of a newly diagnosed patient ask, "What is my role in this?", essentially asking me the definition of a care partner. A care partner should be educated on PD, supportive of their loved one's symptoms, and ensure safety. They will become (if not already) the conduit or steward of information to/from the health care professional. You can imagine how important this can be for improving quality of life.

At the same time, this responsibility can be daunting and difficult to juggle. Care partners have been known to sacrifice their own health for their loved one. If that happens it weakens the delicate balance of patient information sharing with the clinician. The clinician is not divorced form any responsibility either and should remember to acknowledge and recognize "the other person in the room". *

*Copied from The Parkinson Path, PANC (Parkinson Association of Northern California) newsletter, Winter 2009, by Suketu M. Khandhar, M.D., Medical Director Comprehensive Movement Disorder Program, Kaiser Permanente Northern California.

As my husband's care partner, I have an app I use that helps me keep medical information in my phone. For years, though, I wrote in one of those essay composition books that college kids use for taking tests. Whether you use a techno savvy app, or go "old school" with paper, it's important for the care partner to keep a good record of what to ask the doctor, what his response is, the loved one's medical history, and all other items pertinent to the health of the loved one. (If you're using a composition book, put together one for yourself as well. If using an app, create a section for you, too).

We are members of Kaiser so I use Kaiser's app. It is all-encompassing and syncs up our appointments with all our doctors, allows us to order our medications, and also let's us send emails to our doctor directly, as well as keeping our medical records at the touch of a finger.

There are all kinds of medical apps out there that will do the same for you. One that comes to mind is My Chart (by Epic Systems Corp). It will sync with your doctor's office, pharmacy, and all other aspects of your health care. It will not work with Kaiser Permanente, but has great reviews for all other health organizations, including many PPOs and HMOs. Searching for a medical or health app can be painstaking, but once you've identified what you need and which one to use, you will not be disappointed. It will keep all of your medical information for you, and as you think about things to ask the doctor at your next visit, you can put them into the app (or in your essay book) as you think of them. No more racking your brain to remember what you were going to ask.  Keeping track of medication has never been easier, either.

I encourage you to take this step in your caregiving process. Be an advocate for your loved one, because no matter how good your doctor is, he can neglect to mention things to you. If you are the one following up, you will have some control over the course of action. And your doctor visits and knowledge of your loved one's health will be much better.

A little medical humor for you...

Cannabis Concerns?

If you've had Parkinson's for sometime, or perhaps were just diagnosed, you've probably had someone tell you about the benefits of cannabis. It's certainly in the news a lot! While the CBD (Cannabidiol) form of the hemp plant has shown benefit, THC (Tetrahydrocannabinol; from the marijuana plant) may have some drawbacks. CBD is not a hallucenogen, where as THC can be. Talk to your doctor to know whether you are a good candidate for either CBD or THC.

Medical marijuana may be helpful for pain, insomnia, anxiety, nausea, appetite, restless legs syndrome, muscle ramps or spasms, REM behavior disorder and agitation. There is no great evidence showing that it helps with most Parkinson's motor symptoms, although some patients report it helping smooth out "on/off" periods or dyskinesias. That may be primarily because it is a relaxant. Jamey's neurologists has recommended he take it only for sleep (he does have REM behavior disorder). While it would probably not be beneficial for Jamey's other symptoms at this point, he's currently taking a hallucinogenic sleep aid, so this should prove to be a better alternative.

The question that is often asked, particularly from older folks like us, is, "Will there be any side effects?" The answer is, yes, possibly. Side effects may include dizziness, low blood pressure, imbalance, falls, apathy, abdominal pain (rare), memory loss, dry mouth and confusion. Actually not much different than any medication you might already be taking. However, THC may be more likely to cause side effects such as paranoia, anxiety, and confusion. Since low blood pressure is often a side effect of your regular Parkinson's medication, you should definitely consult your physician before using cannabis, as it could cause your blood pressure to plummet to a dangerous level.

The mode of ingestion used will depend on the symptoms you want to address. For focal pain or muscle soreness, it's recommended you start with creams or patches. For other symptoms, oral formulations like drops, powders, or candies work well. There is also a pill form available if you don't need the benefits to be fast-acting. It is not recommended to ingest through smoking; while this can produce a more rapid onset of effects, it can also be associated with breathing issues. A vaporizer MAY reduce the risk for pulmonary problems.

If this is new to you (as it is to us), it might be good to start with pure CBD which will have less potential side effects. You can add THC if you feel it will help. Many patients report better benefits from products containing both CBD and THC, so you may want to gradually add THC if you deem it necessary. Jamey's neurologist recommended 80/20 CBD/THC in the long run, but we will start with pure CBD for now.

There is no need for a prescription, but you should know that medical marijuana is not strictly regulated. Be sure you buy from a reputable source and start with small doses. because there is no regulation, 10 mg may not always be actually 10 mg. It can be inconsistent and inaccurate. I would suggest you buy from the same manufacturer each time as well. That way there is less chance of an issue.

The dosage you use will depend on you, however, most recommend you start with a very low dose (half of what the dispensary recommends) and going up slowly in weekly increments. Many doctors will not recommend dosages. So, use your own discretion--start with less--you can always add more!

You can get medical marijuana at both medical and recreational dispensaries, as well as certain health food stores. I prefer the health food store near us because they have an expert on staff and I know I will always be able to get the same product.

If you have more questions or want more complete answers, go to www.weedmaps.com. Or go to https://medium.com click on More and then choose "Cannabis' from the Life section.They tell what the difference is between hemp, marijuana and cannabis plants.