Visual side effects

A person in the community asked me what a prism is? I explained that it is a prescription lens… But then as I was researching APDA, I found this article on the effect of PD on eyes. It gave a name to what I have… ‘convergence insufficiency’ plus a lot more information: The link to the entire article is included at the end of this post.

“If a person with PD is having visual complaints, the first thing to consider is whether a simple refractive error is contributing to the problem. This is a common cause of vision issues for many people with and without PD, and as we age, it is normal for a lens prescription to need adjustment over time. A refractive error can be picked up by an ophthalmologist or optometrist. In order to diagnose an eye movement problem however, different types of evaluations need to be done that may not be performed at a routine visit with an ophthalmologist. Therefore, if you are having visual problems and a trip to the ophthalmologist with a new lens prescription does not solve the problem, ask for a referral to a neuro-ophthalmologist.”

“Neuro-ophthalmologists attempt to bridge the gap between ophthalmology and neurology by diagnosing and treating the vision manifestations of neurological disease. A neuro-ophthalmologist is either an ophthalmologist or a neurologist who has additional post-residency training in neuro-ophthalmology.”

“If an eye movement abnormality is found, you may be prescribed two pairs of glasses, one for distance and the other for close activities and reading. This often works better than bifocals. If you are found to have convergence insufficiency, you may be prescribed glasses with prisms. A neuro-ophthalmologist may in turn refer you to an ophthalmologist or optometrist with special training in fitting prisms. Often these are pediatric ophthalmologists or optometrists since convergence insufficiency is common in children. Prisms help to bend light to the proper focal point on the retina when the eyes are not able to achieve this on their own.”

“In terms of complementary and alternative therapies, art therapy has been seen to alleviate some of the vision effects associated with Parkinson’s disease.”

Abnormalities of blinking

“The blink reflex, which occurs normally at about 16 to 18 times per minute, may decrease in PD, sometimes substantially. Less commonly, the flipside may occur, with excessive blinking known as blepharospasm. Occasionally, there is apraxia of eyelid opening, which is an inability to open the eyes voluntarily.”

“People with PD who have blepharospasm may benefit from injections of botulinum toxin in the muscle surrounding the eye. This treatment, performed by a movement disorders specialist, ophthalmologist or neuro-ophthalmologist, is usually repeated every three to four months and can be very effective. Those who experience apraxia of eyelid opening can also sometimes benefit from botulinum toxin injections. In addition, lid crutches can be used to help keep the eyes open.”

External eye disease

“Decreased blinking can cause dry eyes. In addition, as a result of the dysfunction of the autonomic nervous system, blepharitis, or irritation of the eyelids can occur.”

“Blepharitis can be managed with warm, moist compresses, lid scrubs, and at times, medicated ointments. Dry eyes can be treated with artificial tear substitutes in an eyedrop or an ointment form. These treatments can go a long way toward making the eyes look and feel better, and increase vision.”

Sensory deficits

“Dopamine neurons in the retina can be lost in PD. The dysfunction of these neurons can lead to a loss of contrast sensitivity for some people making it more difficult to distinguish between items that are of similar color intensity. There can also be color vision deficits, usually along the blue-yellow axis making it harder to distinguish certain colors from others. Visual disturbances, such as visual hallucinations can also occur. Although it is difficult to treat the sensory deficits which at times can affect people with PD, sometimes certain lens tints can be helpful.”


I experience a complication listed under ‘additional’ symptoms of MSA… A Parkinsonism… Multiple System Atrophy.

  • Involuntary, uncontrollable sighing or gasping

This happens unpredictably where I suddenly suck in air VERY quickly. Usually it is of no consequence, however I did experience one pretty significant choking episode, exactly one year ago, which I documented.

May 26, 2018   As indicated previously, there are times I experience an involuntary sudden intake of air (gasp), followed by a release (sigh).  Today, the ‘gasp’ timing occurred just as I had taken a bite of a toasted grill cheese sandwich… inadvertently sucking crumbs of whole wheat toast into my air passage, which precipitated an inordinate amount of violent coughing.  Although breathing was labored, the passageway was never entirely blocked. Within a few minutes, the toast was finally coughed up.

This morning, as I was showering, it happened… that I gasped while attempting to rinse shampoo from my hair. Yikes! No matter that it was Melaleuca Herbal Shampoo… Bubbles impede air flow! I don’t know what kind of sound I made, as I struggled to breathe, but it was enough to panic my sweetheart.

It has been eight hours, and I still have shampoo breath and my voice is raspy, but the coughing has subsided.

I know there is something called aspiration pneumonia… so I looked it up: Aspiration pneumonia is a type of pneumonia that might occur if a person breathes something in instead of swallowing it. The germs from food particles, saliva, vomit, or other substances may infect the airways and lead to aspiration pneumonia.

I suppose it was good that I ingested an herbal concoction… shouldn’t have to worry about infection.

‘The ultimate health hack you’ve never heard of’

My sister, the leader of my pack, sends me information on a variety of subjects, as we strive to leave no stone unturned. In the early part of March, she sent me this message: “Triple Frozen water… A light weight water  unclogs bad cells flushing the superhighway (Intersititum) and flushing it clean. Triple frozen water or DDW has been proven to flush cancer cells out of your body … in as. Little as 90 days.   So NO you don’’t have cancer, but maybe clear some negatives out of your figure it is worth a try.”

I appreciate her efforts. Then, yesterday I discovered ‘The Center for Deuterium Depletion’

First, I discovered a podcast interview that was 3 1/2 hrs. long. As I listened, the Doctors explained the reasoning behind the tripple frozen water and why it didn’t go far enough. They talked about the Keto diet and gave the link to the Center. (If you don’t have time to listen right now, perhaps what I’ve cut and pasted from the Center’s link will get you started.)

“The Center for Deuterium Depletion’s patients are increasing their resting metabolic rate and energy production 40% in as little as 7 days.”

Our goal is to repair your damaged metabolism so you create tons of energy on autopilot.  This will allow your body to heal itself from the inside out so you can focus on living the life you want to live the way you want to live it. We’ve been doing this for more than 30 years and thousands of people have used our discoveries to stay healthier, more youthful, and to help get better clinical outcomes in everything from cancer to diabetes to chronic fatigue to cognitive decline.”

“………………….. deuterium which has all of the same properties as hydrogen except it’s twice as heavy. This is due to an added neutron to go with the proton in the nucleus. Because of this, deuterium is also referred to as “Heavy Hydrogen


“What We Do… The Center for Deuterium Depletion’s mission is to promote deuterium depletion research and treatments to prevent or ameliorate disease, maximize quality of life and/or improve personal performance. We will provide mankind with the insight it needs to live well, live long and live disease free.”


The Blog includes information about Red light and infrared saunas, recipies for Keto and testimonial “……… It is important to keep in mind that the deuterium depleted water alone did not “cure” my fatigue, but it did play a huge role in increasing my energy levels. I also utilized tools like the Breathe Right oxygenating mask, reducing EMF exposure, wearing blue-light blocking glasses after sunset, grounding and sungazing, and following a low-deuterium diet. In future blogs I will share more about what each of these did for me and why!”

At the bottom of the home page, there is an option to schedule a consult with Dr Cooper. I got mine scheduled… June 3rd I will post how it goes.

ps… I found more information on the mask referenced in the blog post: “Everyone knows oxygen binds two hydrogens to make water – H2O. What most don’t know is that oxygen binds to deuterium preferentially over hydrogen and removes it from your body via your urine, lymphatics, sweat, breath, etc. We’ve developed a deuterium depleting mask that trains you to breathe in a way that increases the oxygen in your body to make this depletion more effective. The mask comes with three filters, a training manual and updates on any add-ons we develop.”

Failing to plan is Planning to fail

This article was written by Mr. A C Woolnough on June 4, 2018


It’s time to start planning our travels to Kyoto, Japan for the 5th World Parkinson Congress. Come with me on a semi-fictional trip and see if we can learn to make traveling a little less stressful and much more enjoyable. Let’s follow some random guy (we’ll call him Bob) on a simple one-way trip from New York to Spokane, Washington. The first problem Bob encountered is there are no direct flights between those locations. Bob, a retired teacher, needs to watch his wallet and was faced with several choices. The cheapest flight made three stops before his final destination: Milwaukee, Minneapolis/St. Paul, Seattle, and, finally to Spokane. Although the least expensive, it also was the longest flight. Counting delays, time to the airport, layovers and driving home, this trip would take almost 14 hours! The shortest trip (time wise) would only take 8 hours with one layover. Bob chose to save over $100 and chose the cheaper, but longer, flight. Like a smart traveler, Bob got to the airport (in this case, LaGuardia) two hours early just in case there were issues with luggage, security or weather. Did I mention weather? New York was fine, but there was a major storm across the entire mid-west and Minneapolis (MSP) ordered a ground stop—no planes in or out.

Bob watched the departure time slip from 11:22 AM to noon, then 2:00 PM, then 5:00 PM and finally 8:00 PM before MSP closed for good. The airline brought out snacks in the early afternoon and sandwiches about 6:00 pm—for those intrepid travelers still waiting and hoping. The good news was Bob had packed an extra day of meds in his carryon and had extras in his checked baggage. Once it became apparent, he was going nowhere that day (or night), Bob had his flight re-booked by a helpful gate agent. Knowing the weather was not the gate agent’s fault, Bob (although tired and frustrated) remained pleasant. Unfortunately, that involved a shuttle to another NY airport, namely JFK. Bob took the shuttle (there goes $20 of his savings from taking the cheaper flight) to JFK and arrived about 9:00 PM. Bob considered a hotel and looked it up on his dying phone (charging cable was in checked luggage). The cheapest one was almost $200 and would also involve UBER or a taxi. Bob decided to hunker down in the airport and met some other passengers who also decided to rough it. Fortunately, the airline help desk provided a pillow and a blanket. All the seats in the airport included arm rests—deliberately designed to keep over-nighters from using them as a bed. With lights blazing and announcements blaring, Bob got almost four hours of fitful sleep on the floor. Up early, stiff, sore and muddle-headed, Bob cleaned up the best he could in the bathroom—wishing he had kept his toiletry bag in his carryon. Bob then walked (it seemed like miles) from the “night-night” gate to the actual departure gate. That’s when things started to look up. The plane was on time and Bob got his new ticket. Lo and behold, it was for a first-class seat: hot breakfast, reclining seat and special lavatory. Arriving in Spokane, Bob got his luggage just in time for his next scheduled meds.

It is somewhat embarrassing to admit that most of what happened to Bob happened to me. So, let’s review what went well—and what didn’t. The savvy traveler:

  • considers the weather not only at starting and stopping points, but also the weather in between.
  • ensures s/he has plenty of meds (triple the anticipated need)
  • keeps a multiple day supply in a carry-on, checked bags (luggage gets lost) and, to be overly (?) cautious, another back-up supply!
  • understands, if you want economy, sometimes you have to pay for it. Carefully consider costs and benefits
  • drinks plenty of water; stays hydrated
  • doesn’t hesitate to use early boarding or a wheelchair; check with your airline in advance for special needs; consider asking for an aisle seat
  • if appropriate, talks about travel plans with your doctor
  • maintains a positive attitude and a sense of humor
  • each layover increases the chance for the unexpected
  • expects the unexpected
  • allows plenty of time to/from the airport and navigating inside the airport
  • utilizes the internet (and AARP) for additional advice and suggestions

Long distance travel can be difficult. The best way to make it better is to have a plan. Failing to plan is planning to fail. Sounds like something Mother Goose would say. And, she’s right!


This presentation was given by Joseph H. Friedman MD at the May 29th, 2018 World Parkinson’s Congress

“We all misperceive things. A common example is the sensation that the world is turning after we spin ourselves quickly around and then stop suddenly. It can be so severe that we may even fall down. In Parkinson’s disease (PD), there are a number of misperceptions that may occur as part of the disease, and may seem puzzling to the person with Parkinson’s (PWP) and the family. The misperceptions usually affect the person with PD, but there are misperceptions by others concerning the PWP.”

……I went through the LOUD protocol… but my psyce makes it very difficult for me to shout… I find it exhausting!

“Perhaps the easiest to understand is speech. Some PWP perceive their speech as being louder than it really is. This, of course, increases communication problems, and may contribute to the soft speech of PWP. In most cases of soft speech the patient is aware of the softness, but simply can’t muster the strength to make the vocal cords vibrate adequately, but in some cases, it occurs because the PWP thinks she is talking louder than she really is. The problem can be remedied by teaching them to talk louder than the PWP thinks is “necessary” because it isn’t as loud as it seems to the speaker. These PWP need to talk to the world as if they are all deaf.”

……I totally relate to this next paragraph. I blamed my poor spacial perception on my eyes…and double vision.

“Many PWP do not perceive spatial relationships as they did before the onset of PD. This occurs in a number of settings, and is particularly important for driving. It is not rare for a spouse of a PWP to complain that they are never in the center of the lane, but always to the right, or to the left, or sometimes too close to the car in front. When confronted, the PWP will disagree and confidently state that the car is, in fact, in the middle of the road, even when it isn’t. This occurs because of changes in parts of the brain that process visual input, which causes a distortion in what is perceived as the middle, or up, or down, causing the PWP to argue, because, to the PWP, the car is in the middle, but it really isn’t. It is difficult to convince PWPs of problems such as these when their own personal and repeated experience indicates that they are in the middle of the road. A similar problem occurs in PWP who think they are closer to a chair than they really are so they sit down, and almost miss the chair. Sometimes people will actually miss the chair, and injure themselves.”

…... I don’t use prescription drugs, so I don’t think this next paragraph relates to me.

“One of the most surprising misperceptions concerns dyskinesias. These are involuntary movements that may be fluid or jerky. They may involve any part of the body, face, head, hands, legs or trunk, and cause the person to look fidgety, like they are dancing in place, or uncomfortable. Michael J. Fox suffers from this, so you can see what these movements look like on his TV shows, or you can watch a You Tube video of PWP who suffer from these movements.  These are side effects of long term use of L-Dopa and are very common. They are not uncomfortable, although they may look like they are. The surprising observation is that people with this type of movement disorder, whether in PD or any other condition, often perceive the movements as much less than they really are, sometimes not recognizing that they are present at all. Even more surprising is the observation that when patients look in the mirror they do not see the movements, even though they are present, but when they see themselves on video they are usually quite surprised by how prominent the movements are. For unknown reasons, the brain perceives the movements only when they are not occurring at exactly the same time as they really are, so that the video is perceived accurately, but the live movements are not, even with a mirror. Of further interest is the observation that PWP almost always accurately perceive their tremors.”

……this one really surprises me.

“PWP often feel that they are weak, most particularly in the legs. In a study we performed, 40% of PD patients thought that their legs were weak. Sometimes they felt that their legs were “heavy,” “encased in concrete,” “made out of lead,”, “dead, “ “wooden,” etc. Yet the legs were not weak. The brain perceives the reduced motor control as being weakness, even though the problem is really reduced control.”

… mentioned in the Laugh post.

“I have never heard a PWP report that they move less than other people. In fact, PD patients are almost always “akinetic” to some degree. This means that they have fewer spontaneous movements than other people, which is readily seen in the blink rate. PWP blink less than normal people, contributing to their facial “staring” expression. They also swallow less than others, which is why saliva pools in their mouths, leading to drooling. Thus, PWP do not realize that their immobility is a difference between them and others.”

……..and also in the Laugh Post

‘In addition to PWP misperceiving themselves they are also not perceived properly by others. This has not been properly studied but the few papers published on this topic indicate that people, including health professionals, have a more negative impression of PWP they haven’t met based purely on their facial expression, viewing them as depressed, angry, less socially involved, less interested and less pleasant based on how “masked” their facial expression is. These impressions were completely unrelated to what the PWP actually was like. This unfortunate problem may underlie difficulties PWP experience relating to people who don’t know them.”

…….the link to the original post is below:

There are a number of other misperceptions that seem to be more common in PWP than in the general population, and understanding that we all perceive the world differently, and that these differences reflect not only our genetic makeup and our specific experiences in life, but also the changes that take place within our brains as a result of aging or disease processes.



People frequently say to me…”Smile… Things can’t be that bad.” I can be laughing on the inside, but it is like I forgot to tell my face. It makes me wonder how long I was experiencing symptoms prior to the official diagnosis, When I met with the movement specialist, she told me I had a clasic Parkinson’s mask.

The following paragraphs are excerpts from tomorrow’s post on Perception,

“In addition to PWP (person with parkinson’s) misperceiving themselves they are also not perceived properly by others. This has not been properly studied but the few papers published on this topic indicate that people, including health professionals, have a more negative impression of PWP they haven’t met based purely on their facial expression, viewing them as depressed, angry, less socially involved, less interested and less pleasant based on how “masked” their facial expression is. These impressions were completely unrelated to what the PWP actually was like. This unfortunate problem may underlie difficulties PWP experience relating to people who don’t know them. “

“…………This means that they have fewer spontaneous movements than other people, which is readily seen in the blink rate. PWP blink less than normal people, contributing to their facial “staring” expression. They also swallow less than others, which is why saliva pools in their mouths, leading to drooling. “

Describes me exactly. I’m pretty sure my body produces extra saliva… I feel like a drooling machine.


Horse Therapy

I asked for more information from a team member who mentioned Horse Therapy: Her response follows:

Hi Sue.. Horse therapy is amazing. You would need a letter from you’re Dr. In my case I’m only allowed to groom the horse because of balance. 
The horse, Bullet, is an older 22 yrs old..very gentle and also used in a children’s therapy for children with physical and emotional disabilities. 
There are usually 3 people.. one at his head and the other two on each side. I walk with the horse and he instinctively seems to know what to do…I can lean into him and he will 
keep me straight. He knows me now and nickers when he hears my voice.. but I still have to be very careful because of his hoofs and that’s where the spotters are always watching. 
I was on him a couple of times, but not comfortable at all. 
This place is amazing with so many trained volunteers and they do this for the love of helping others. 
The Program is called Standing Tall and it’s ages 8-Adult. 
As you can tell it’s helped me so much.

She was in Tennessee. I did a search on the internet and found yhe following at the Michigan Parkinson Foundation:


It has been said that the “horse symbolizes the drive for freedom shared by people of all nations” (author unknown) and that “in riding a horse, we borrow freedom” (Pam Brown). All who come in contact with these beautiful animals, especially those patients receiving hippotherapy, can confirm these quotes. Hippotherapy is a treatment tool used by a specially trained occupational, physical, or speech therapist to treat patients with neurological problems. By using the specific movement of the horse, the therapist can influence the patient’s nervous system and ability to plan their movement. Why the horse? The horse’s movement is rhythmic and repetitive, and with the right horse, it is symmetrical. The horse’s stride also simulates human walking in terms of the influence of movement on the hips of its rider. It also encourages motor learning, a treatment principle that therapists use in treatment, so the movement of the horse creates responses that are essential for walking and other activities, which can be carried over off of the horse. The horse acts as a three-dimensional mobile mat from which therapy can occur. As therapists, we are continuously trying to teach “normal” movement to our clients with neurological problems, and the horse can naturally assist us with this. The movement of the horse can improve balance, strength, tone, timing, coordination, and postural control, which can all lead to improved functional ability of the person with Parkinson’s disease. In addition to the natural influence of the horse’s movement, there is added benefit from the natural animal-human bond that occurs throughout the sessions. Animals are extremely motivating and can inspire us and touch us in ways that the traditional setting for therapy cannot. This is especially important because therapy is a participatory program. Your therapist can’t just do therapy to you; you have to participate and be engaged in the activities in order for them to be effective. Let’s face it, when you have been involved in the same traditional treatment activities for a long time, they become a bit repetitious. This leads to decreased patient motivation and participation and therefore decreased improvements in treatment. This is why hippotherapy opens up a whole new opportunity for patients.

Tim is a 47 year old man with Parkinson’s. He receives hippotherapy treatments once a week. Tim was in his 30’s when diagnosed with Parkinson’s disease. In the past, he has been involved in traditional therapy and recently started hippotherapy. He, as well as his family, feel that the hippotherapy has improved his function at home as well as improved his mobility overall. He had developed the very classic signs associated with Parkinson’s disease, including a flexed posture, decreased coordination, increased rigidity, as well as “scissoring” in both of his legs. He was wheelchair-dependent prior to starting his hippotherapy sessions. He is now able to walk short distances, with improved control and coordination. He is noted to have a visible change in control over his legs, with less “scissoring” immediately following his session. Tim says he feels he hasgreater self- esteem, and feels the sessions are “good for the soul,” not to mention feeling less rigidity through out his body following his hippotherapy sessions.

Hippotherapy is not for everyone. All patients must be carefully screened. Typical hippotherapy sessions are 1-2x/week, 30-60 minutes in duration, and are used in addition to traditional therapy techniques. Treatment can only be effective if the therapist has been specially trained to utilize the proper movements of the horse from an accredited program.

………………………………….. I did a search in Florida, and found Path International… a professional association of Therapeutic Horsemanship

So now you know a resource, if you desire to know more. 🙂

Water Challenge

There is a web site that includes lists consequences of being under hydrated as well as benefits of when you are hydrated.

I have a question. I want to enter a challenge, but I do not understand hash tags. Is that a twitter thing?

I figure, why not try to win, when I’m already drinking the water?  When You Start The Challenge You Will Be Entered To Win $100 (USD).

There is a formula: Drink at least 64 oz per day or drink 1/2 your body weight in ounces each day to still qualify. So 1f I weigh 107 lbs / 2 = 54oz.

NOTE: Be sure to space your water intake out evenly throughout the day So I could set reminders on my phone for every 1-1/2 hrs starting at 8 am till 9:30 pm & and drank 5.5 oz I’ll have met my goal. It is so doable.

See my previous post on Hydration

The Challenge Rules AreSuper Easy . . .

1. Join The Challenge By Entering Your Name & Email Above.

2. Join The 7-Day Water Challenge Group on Facebook.

3. Drink At Least 64 oz. of Water Daily*

4. Post Your Results On Social Media Using The Hashtag #7DayWaterChallenge.

ALSO, when enrolling, it asks; “Who invited you to the challenge?” If you want to do it, you can blame me… 🙂 Sue Rosier

Stem Cells

I have discovered two separate posts from unrelated sources with intriguing details about Stem Cells Therapy.

……………………………………….. The first indicating a need for additional research:

“Talked to my husband’s neurologist yesterday. He is a movement specialist, very down to earth. He said stem cell therapy will probably be the answer in the future. He said their doing a lot of research on it in Russia. A few of his patients went there for the surgery. The problem is they have figured out how to tell the stem cells where to work. They work in all parts of the body. The one client had the stem cells infused into her spinal system and the brain stem cells started working there causing more problems with her walking. They had to go back and try to remove them. He said it needs a lot more research”

…………………………………………….. And this glowing report: in which the author believes he can credit the therapy with his improved quality of life:

 I have been through the Memory Testing and it was never connected to PD meds. A lot of us get Parkinson’s type of Dementia and my Neurologist didn’t want to put me on anything until it got worse.

Mine slowly got worse over the years, then after we moved away from Round Rock, Tx. and I hadn’t found another Doctor yet. I couldn’t remember from one second to the next and I got so aggravated at myself and would get so embarrassed when talking to people. I could never complete a sentence because I couldn’t remember what I was talking about, this was constant. I would think of something so I would try to write it down but by the time I picked up the pen, I would forget what I was going to write.

Since I had the Stem Cell Therapy my Dementia has improved and I don’t have any issues now, other than forgetting something every now & then (normal old age). As well as all my other issues improved including my PD symptoms.

I know it’s not easy to deal with memory issues and it is scary as well. Just be careful with them jacking with your meds because then it could make worse issues for you. I would recommend doing your research on the PD meds you are taking and see if any of the side effects cause Dementia type of issues. From what you’re saying you have not had any changes in your PD meds in a long time, so I would find it hard to believe it is now causing you to have memory issues.

Remember to take charge of your health care and be armed with your research & knowledge of the good & bad issues with the PD meds, what’s worked for others with PD, and the more knowledge you have the better. A Doctor can only give you advice and recommendations but in the end, it’s your choice how you want to proceed. A good Doctor will work with you on a plan that works for you on this PD journey. Too many Doctors just prescribe the PD meds and say I ‘ll see you again in six months, this is bull crap.

Hang in there, it will get better!!! Take Care;  Tex

…………………………………..Just sharing.. for what it is worth.