This post is for my new neurologist.

As I stated previously, I liked several things about him… how he gave me courage to try the medication again, providing strategies to avoid a repeat of its making me ill, and how he said see you in three weeks, and frequently till your life is under control.

BUT I sensed his frustration with me, as he held up a finger asking me if I saw double. I, too felt frustrated as he moved his fingers across demanding I respond. I had several responses going through my mind, but I finally blurted out No. I only see one. But it felt like a lie. You see, doctor, I had all these thoughts running through my mind…but couldn’t find a way to express myself:

  • I saw a blurry finger cog-wheel in jerking fashion. So technically, only one.
  • But for several years, even after my annual prescription updates, I would find things just didn’t seem in focus. Then in 2018 the eye doctor finally gave my condition a name: oblique double vision.
  • Sooo… knowing I wear prism glasses to correct the problem, it took me four years to get a name for… how could I be sure I was only seeing one?
Mht af saying thinking 5
* I felt like admitting I only saw one was like saying my vision problems aren’t related to the Parkinson’s diagnosis.
  • The eye doctor even told me I leaned like a person with oblique double vision. ..PLUS the prism glasses restored my ability to text, and read.
  • And… I have seen where vision problems are related to Parkinsonism.

What follows is taken from a presentation given by Joseph H. Friedman MD at the May 29th, 2018 World Parkinson’s Congress

“We all misperceive things….. 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.”

“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.”

Orthostatic tremor

I learned about a type of tremor I hadn’t heard about, before… from a team member with a MSA diagnosis, typing on the myparkinsonsteam.com site.

“Orthostatic tremor (OT) is a rare syndrome characterized by unsteadiness on standing due to a high-frequency tremor involving the legs. Symptoms usually start in the sixth decade. Typically, the symptoms rapidly improve on sitting or walking, and the need to sit down or to move can be so strong that patients avoid situations where they have to stand still. A polygraphic recording of a fast and synchronous tremor of the legs, between 13 and 18Hz, is mandatory to confirm the diagnosis of OT. Many patients also suffer from tremor, often involving lower frequencies, of the face, hands, or trunk. Recent studies suggest that this is perhaps due to subharmonics of the high-frequency tremor spreading through the body. Most cases of OT seem to be idiopathic, though symptomatic forms have been occasionally described. Several cases of OT have been reported in Parkinson’s disease.”

…..What follows was written by a DR in the Neurology Dept at Mayo Clinic…..

“The term tremor implies an involuntary, rhythmic body movement. Orthostatic tremor affects the muscles in a person’s legs, and sometimes also radiates from the legs upward to other parts of the body. The term “orthostatic” refers to standing. Orthostatic tremor occurs when a person stands up. The condition can be difficult to diagnose and, although medication helps some people, it can be a challenging condition to treat effectively.

Orthostatic tremor is an uncommon disorder that can significantly affect the quality of life for those who develop it. Usually, the main symptom is a feeling of leg shakiness and unsteadiness when standing still. Orthostatic tremor can create difficulty in performing daily activities that require a person to stand freely without support. For example, standing in line at a store, standing at a kitchen counter to prepare a meal, or standing at a workbench to enjoy a hobby can be very hard or impossible for people who have orthostatic tremor. Most people don’t fall as a result of the condition. However, approximately 15 percent become so unsteady that falling is a problem.

Orthostatic tremor often starts shortly after standing and stops when a person sits or lies down. Contrary to what common sense might normally suggest, typically the tremor decreases when a person is walking. Leaning on an object such as a chair or a countertop when standing also may help reduce the tremor.

Orthostatic tremor is a high-frequency tremor, which means the tremor rhythm is very rapid and there can be as many as 16 to 20 tremor cycles in one second. That’s significantly faster than other tremor types. For example, essential tremor usually involves eight to 12 tremor cycles per second, and the tremors associated with Parkinson’s disease typically occur at a rate of four to eight cycles per second.

Because the tremor is so fast, orthostatic tremor can be difficult to see. That can make the diagnosis challenging. In some cases, when patients report that they feel unsteady on their feet, the physicians may overlook the leg tremor and may pursue other possible causes of unsteadiness. One additional diagnostic strategy is to place a hand on the thigh, feeling for the tremor; however, the clinician must have an appropriate level of suspicion.

If a physician suspects orthostatic tremor, the diagnosis can be confirmed by assessing the electrical activity in the leg muscles. At Mayo Clinic, that analysis is conducted in our Movement Disorders Neurophysiology Laboratory. During orthostatic tremor, the leg muscles show no electrical activity when a person is sitting. When he or she stands up, though, the muscles immediately begin firing rhythmic bursts of electrical activity.

Because the cause of orthostatic tremor is unknown, a cure currently isn’t available. Instead, treatment focuses on the symptoms. Once the condition is diagnosed, the first line of treatment is the medication clonazepam or a related drug. This medication moderately to markedly reduces orthostatic tremor in about one-third of people who have the disorder. For some, it eliminates orthostatic tremor almost entirely.

Unfortunately, for those who don’t respond to clonazepam, no single alternative medication has a high likelihood of decreasing orthostatic tremor. Although numerous other medications may be tried, these may be no more than mildly helpful.

Fortunately, orthostatic tremor tends not to be a progressive disorder. Once the symptoms are fully developed, it doesn’t progress to a more pervasive neurological condition. It does tend to be persistent, however, and usually does not resolve on its own.”

— J. Eric Ahlskog, M.D., Ph.D., Neurology, Mayo Clinic, Rochester, Minn.

Gasp

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.

Multiple System Atrophy (MSA)

Today, I discovered the European Parkinson’s Disease Association (EPDA) which is the only European Parkinson’s umbrella organization. They have been championing and working with the global Parkinson’s community for 27 years. They provide information and resources to all Parkinson’s stakeholders in Europe and raising awareness of the disease’s complexities and impact. Their vision is to enable all people with Parkinson’s to live a full life, while supporting the search for a cure.

Parkinsonism is the umbrella term given to a group of conditions that feature Parkinson’s-type symptoms: slowness of movement (bradykinesia), tremor and stiffness of muscles. About 85% of people with parkinsonism have Parkinson’s (sometimes called idiopathic Parkinson’s), which is the most common form. The other 15% of people with parkinsonism have other, rarer conditions.

The EBDA site has links which detail specifics of the other 15%:
Corticobasal Degeneration (CBD), Dementia with Lewy Bodies (DLB),
drug-induced parkinsonism, Essential Tremor (ET), Progressive supranuclear palsy (PSP), Vascular (Arteriosclerotic) parkinsonism & (MSA)…which I have cut and pasted below.

Multiple System Atrophy (MSA) is a progressive neurological illness (an illness of the nervous system). It is caused by an overproduction of a protein in the brain called alpha synuclein which causes degeneration (atrophy) of nerve cells in several areas of the brain (multiple systems). The three main areas affected are the basal ganglia, the cerebellum and the brain stem. This cell loss can result in a number of problems, particularly related to movement, balance and other autonomic (unconscious) body functions (such as bladder function). These symptoms are very similar to Parkinson’s, but MSA progresses faster and does not respond as well to medication.

What causes MSA?

Both men and women can be affected by MSA. It usually starts between the ages of 30 and 60 years, although it can also affect older people. MSA is not infectious nor contagious.

At present the cause is unknown and MSA seems to occur randomly. It does not appear to be inherited, although it may be that some people are genetically more predisposed to developing it. What triggers the process of atrophy is the subject of ongoing research.

Symptoms

Symptoms vary according to which part of the brain is affected by loss of nerve cells. Not everyone will experience all symptoms. Deterioration is very individual. Some of the most common symptoms include:

  • slowed movements
  • rigidity or stiffness
  • difficulty turning in bed
  • difficulty in initiating a movement
  • difficulty writing; writing may become small and spidery
  • loss of balance and poor coordination or clumsiness (ataxia)
  • speech difficulties
  • difficulty with fine motor skills such as doing up buttons
  • problems with erection or male impotence
  • loss of bladder control, including urgency, frequent urination or incomplete emptying, often getting up several times at night to pass urine
  • bowel problems, including constipation
  • inability to sweat
  • cold hands and feet
  • drop in blood pressure when standing (postural hypotension), leading to dizziness, fainting or blurred vision
  • coat hanger pain’ (pain in neck or shoulders) as a result of low blood pressure
  • problems with swallowing
  • emotions that are easily aroused or tend to change quickly
  • depression, anxiety or a feeling of being overwhelmed
  • soft voice, particularly when tired
  • restless sleep
  • noisy breathing, including snoring when sleeping.

Diagnosis

MSA can be difficult to diagnose, especially early on when symptoms appear very similar to Parkinson’s. This can mean it takes some time for a diagnosis to be reached.

There is no specific test to confirm MSA. However, brain scans and blood tests may help to rule out other possible causes. A neurologist or a movement disorder specialist, will make careful observations over a period of time in order to reach an accurate diagnosis, using a set of criteria, so several visits may be needed in order to give a possible or probable diagnosis.

MSA and Parkinson’s

MSA is often mistaken for Parkinson’s as it initially tends to present similarly. It is important that a doctor experienced in movement disorders is consulted so that she or he can reach an accurate diagnosis. The focus of treatment in MSA is different to Parkinson’s; whilst there is some overlap , it is helpful to get the diagnosis clarified to ensure the best management of symptoms.

Treatment and management

Currently there is no cure for MSA, nor any treatments to delay the degeneration of nerve cells. However, medications and treatments can help to manage some of the symptoms. As the illness progresses, increasing help will be needed with everyday activities. Because MSA is a complex illness, a combination of approaches will probably be suggested.

Medication

A specialist doctor or neurologist may prescribe medicines, often including Parkinson’s medicines, to treat movement symptoms, regulate blood pressure and improve bladder control. She or he will tailor your medication to suit your symptoms and adjust the dose as necessary.

Specialist equipment

In many countries, an occupational therapist or physiotherapist will be able to advise on specialist equipment and strategies to overcome everyday difficulties, for example turning in bed, personal hygiene or eating. Your doctor will be able to refer you to the right healthcare professional, so it is important to tell him or her about symptoms and any difficulties you experience.

Complementary therapies

So far there is no actual evidence that complementary therapies can alleviate the symptoms of MSA, but some people find them helpful, for example in relaxing stiffness and rigidity in muscles and relieving stress.

Who can help?

Healthcare professionals who may be able to help include physiotherapists, speech and language therapists, occupational therapists, specialist nurses, continence advisors, dieticians and social workers. Each specialist will be able to advise on specific difficulties and will work with you to find solutions and strategies to make life easier.

In some countries there are MSA organisations that provide help, advice and support for both people with MSA and their carers. Your doctor or specialist nurse may be able to provide you with contacts, or you can ask at your local library or search using the Internet. 

Content last reviewed: April 20

Part of my protocol

Besides Exercise… in conjunction with WBV & Tandem biking . Diet… focusing on gut health, bone broth, fermented foods, . avoiding white flour, white sugar . Infrared Sauna . Alternatives… Oxygen, Amino Acids, Frankincense oil . Nutrituinal supplementation… Three Kings, (see the blog post) , Mucuna Pruriens ( a medicinal herb famous for it’s neuro- . transmitter and hormonal balancing properties) . Serropeptase (as recommended in the link below)

 Serropeptase & Parkinson’s

12/29/18 Dr. Berg recommended … Serropeptase  3 x’s a day on empty stomach  suggesting enzyme may break down or dissolve build-up of protein (alpha synuclein) in the brain

This is the only place I’ve even heard of serropeptase, but I was able to find it at the recommended strength… . I’ve only been on it a month and 1/2 but I feel like it is helping.

I found this additional insight on ‘MyParkinsonTeam.com’: “Now known as Lewy bodies, these deposits of alpha-synuclein (aS) protein are understood to be one of the most common causes of dementia in people with parkinsonism.”

On the bright side

So… I have to admit I was disappointed with how our trip to Gainsville went. Basically, the Doctor just wanted to put me on a medication that has bad side effects. When I said, no thank you, he said, “You can just be followed by your primary care doctor.”

So what we did accomplish… They have a base line for my symptoms,,, so If I return in the future, I am in the system. AND he also said, “I would change the diagnosis from Parkinson’s to Parkinsonism.” Because I have multiple symptoms, typical with Parkinson’s, but not the tremors.. plus other symptoms as seen in MSA. There is a test that could be given to determine what parts of the brain are losing the dopamine. But knowing wouldn’t change the treatment. And I don’t desire to have radioactive stuff injected into my veins, anyway.

DaTSCAN is a special technique that provides detailed images of the dopamine neurons (nerve cells) in the brain. The Food and Drug Administration (FDA) approved the use of DaTSCAN for differentiating PD from other conditions in 2011. The patient is given a radioactive agent into a vein.

I asked if I could speak with a dietician, because I am losing too much weight on the Keto Diet, but both dietician’s were in a meeting, so one is supposed to call me. (I’ve made a decision, without her call.) The thinking behind the Keto diet was to get more oil to my brain… and to increase my energy. Sadly, I do not recognize any pick up in my energy level… but when the scale said 107 Lb. this a.m., I decided to add more fruits, beans, etc… to balance my diet more. I’ll still have to say no to products with white flour or sugar, of course. Back to the matra of moderation in all things. I will also continue to focus on the gut health guidelines… Bone Broth, and fermented foods.

The bright side in my day came when I checked the mail. My Aware in Care kit had arrived. I’ll explain what that is, tomorrow.