Virtual Hug

It's the third week of the lock down, so I will attempt to post on our blog. But please forgive me as I wander along; my posting is sure to be a little disjointed as that is how I'm feeling these days as well.

Jamey's boxing coach has arranged several days a week for everyone to box and chat, virtually (Zoom app). It has been a blessing to be able to continue moving when we can, and still be in touch with fellow boxers in the class!  WW is also doing our workshop meetings with Zoom. It's been great! We don't feel like we're missing out on as much with this wonderful technology tool. Perhaps we all should have bought stock in Zoom before this whole thing started!

If this outbreak had happened even 20 years ago, we wouldn't have been able to do video chats, work from home, attend conference meetings, or do many of the things we are now taking for granted. It really is awesome. But, hopefully, the world will not choose to use this method after the outbreak is over. Even those who do not like hugging or personal contact, will surely miss the closeness of other people. God created humans to be in community. Separating from one another, even for a few months, is sure to take its toll on us all. I mean, a virtual hug, just isn't going to do it for most of us!

There are a couple of ways to look at this house-bound scenario; it's either going to bring people (families) closer to together, or it's going to drive a wedge into our relationships. Partners who are usually able to have time alone, are being forced to be together 24/7, and that can be a challenge for some. Perhaps, people are stronger than I think. I hope so. If not, we are going to have a lot of divorces when this whole thing is over. But, on the flip side...we might also have a lot of new babies; I mean, what else is there to do when you're stuck in the house all day?! 😊

Jamey and I have taken to playing more video games and/or board games together. We  spend time at opposite ends of the house; he in his man-cave, me in my she-shed, and then we meet in the middle, and do something together. It's been fun, but we ARE only in week three. Let's see how we feel on week four or five. 😃 I think balance is the key in all we do. Find something to do together, then, find something to do, just yourself. I realize not everyone has the space to separate like we do, but at this point, most of us can still go outside, so maybe that is an option.

Whatever you're doing, do it with patience and perspicacity, knowing seclusion, for the time being, is necessary to perhaps saving others. Find games to play, books to read, meals to cook, quilts to sew, prayers to pray, or whatever it takes to distract you. We are all in this together and we will all get through it together. We've been through some really tough stuff, so this is just another challenge on our way! God never said life was going to be easy, in fact He said it was going to hard;

 "...Here on earth you will have many trials and sorrows, . but take heart, because I have overcome the world." John 16:33

I pray you are all holding onto that hope. I know we are!

The Stress Factor

I'm a little ashamed I haven't posted since well before Christmas. But, I suspect everyone else was as busy as we were during the holidays. I love Christmas and the winter season, but I enjoy getting back to normalcy just as much, I think!

As I believe I've said before, Parkinson's symptoms increase when stress is present. And  it doesn't need to be "bad" stress; it can be "good" stress as well. What I mean by that is, even stress like visiting people over holidays, or having grand-kids over, though it's enjoyable, can be stressful and lead to increased symptoms.

The holidays were filled with fun activities and lots of visiting with friends and family, but the aftermath, and even during some of it, often leaves Jamey exhausted and less mobile than usual. Of course, I forget about that and schedule plenty of events for us. Needless to say, it takes its toll on him. Thankfully, he's a pretty good sport about it and trudges along like a trooper.

To help your Parkinson's sufferers, cope a little better during bad stress, as well as good stress, take these things into consideration:

1. Try not to schedule more than one event in a day. Sometimes a doctor's appointment followed by a visit from the grand kids can be too much. Know your loved ones' limits.

2. Have a "safe" place where your loved one can remove themselves, when necessary, from the over-stimulation. Jamey's man cave and our master bedroom are at opposite ends of the house, so he is able to go to one or the other, and close the door when he needs to.

3. Include your loved one in the scheduling decisions when you can. Make sure your loved one knows the itinerary and what is planned for each day. Sometimes it might be necessary to tell them several times, to prepare them.

4. Talk about the event before hand and be sure you understand what your loved ones' desires are. Find out their expectations and make your decisions based on pros and cons of the event.

5. Know the difference between not wanting to participate and not being able to participate. It might sometimes be necessary to insist your loved one participate in something he or she doesn't want to do, for their own benefit. Talk it out before overloading the schedule.

6. Try not to schedule several days of events in a row. Leave a day or two of rest in between.

This biggest obstacle for us has been a tendency to drop out of things to protect ourselves from the exhaustion or added symptoms (I have the same issues because of stroke symptoms). So I urge you not to cut back completely. God created us for community and Christ modeled that well. It's important for our well being to participate in life as much as we can, to meet with friends, socialize and join in when possible.

Stress or no stress, keep moving and participating when you can. Movement and socialization are healing activities whether or not you feel it right away!

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