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

Exercise Element # 3

Taking my post on procastination and baby steps to heart, I decided to try for two minutes, as a starting point, working on a skill I perceive I have lost. Skipping. Holding onto a shoulder high bar, for support, I simply attempted to hop, alternating… one foot at a time. At first, neither foot would leave the floor. But after numerous attempts, I could tell my left foot was lifting slightly from the floor. My right leg drags more when I walk, so it was no surprise that it was even slower to respond, but by the end of my two minutes, I thought I felt a little separation. Goal for today … three minutes. I saw a minut improvement. 🙂

Parkinson’s is unique … as symptoms seem to fluctuate greatly with the level of attentiveness you’re giving to the task at hand. Therefore, your exercise program needs to incorporate activities that make you multitask and challenge your mind and body at the same time. There are a variety of ways to do this. Playing games with a variety of rules, layers, tasks and challenges is a great place to start. Also incorporating exercises that are new to you where you have to concentrate fully on learning the form and execution is wonderful when it comes to strengthening mind-body connection .

What follows is from Sarah from Invigorate:

Element # 3: MENTALLY Challenging 

Multitasking can become a real challenge for the Parkinson’s brain which is why it’s crucial to practice it on a regular basis (well before you need to use it!). 

This can be most easily done by adding some mental challenges on top of exercise you’re already doing. 

Whether it’s walking, swimming, doing your PWR!Moves or LSVT exercises, simply add a few of the challenges below:

Counting backwards by 6s
Naming objects in your environment
Listing items in the category (ie. authors, states, vegetables, NFL teams, etc.)
Toss and catch a small tennis ball or juggling scarves like bees…what other ideas can you think of?
*Key: Aimed to maintain your pace and form– the tendency is to slow down!

Does your current program challenge you? Could it challenge you more? 

Remember: Embrace the change that the challenge brings!
 
 

Sloth… but not slothful

John & I have shared housing accommodations with a daughter, Emily and her five children for the past couple years as my Parkinson’s symptoms have become more pronounced. The seventeen year old, Megan, has been aware and come to my rescue when I lost my balance in the pool, needed help to carry things, open doors or bottles, etc… She also, kindly, lets me know when I have food on my chin. 🙂

I knew it takes me a long time to eat, but I guess I thought it was just a chewing and swallowing issue, until Megan observed… “Look, grandma is eating like a sloth!” At that point, I realized how slowly I was moving the fork toward my mouth. I had to laugh.

Emily’s children know she likes Sloths so they have gifted her with a ‘sloth shirt’ and stuffed plush sloths. So when she was showing me her collection of Valentine Sloths, naming them off…Here is the daddy, the mommy, the baby… I said “And you have ME” 🙂

Yes, they have me… and I have them.. my family are my tribe… my wolfpack… my Valentines

Slothful mean not easily aroused to activity. .. lazy, suggests a disinclination to work or to take trouble to do anything..  Apathy seems to fit here. A slothful person doesn’t have a claim on a good work ethic.

On Valentines Day, 2019, I have an appointment to have my condition evaluated at the University of Florida Movement Disorders and Neurorestoration Fixel Center. To demonstrate MY good work ethic I have compiled a list of questions I hope to ask.

I’ll try to not drop the ball… and report back on the feedback I receive.