“What is atypical parkinsonism and how does it differ from PD?”

This blog post from the Northwest Parkinson’s Foundation (nwpf.org) is a short overview of atypical parkinsonism disorders.

The author, movement disorder specialist Monique Giroux, MD, uses the term “Lewy body disease,” rather than “Lewy body dementia.”  Multiple system atrophy and progressive supranuclear palsy are included as well but corticobasal degeneration is excluded.  Normal pressure hydrocephalus and Wilson’s disease are included on the list of neurodegenerative disorders that can cause parkinsonism.

The blog post is copied below.

Robin

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nwpf.org/stay-informed/blog/2013/06/what-is-atypical-parkinsonism-and-how-does-it-differ-from-pd/

PD Community Blog
What is atypical parkinsonism and how does it differ from PD?
by Monique L. Giroux, MD, Former Medical Director of NWPF
Northwest Parkinson’s Foundation
Monday, June 24, 2013

Atypical parkinson’s, parkinsonism, and parkinson’s plus are all terms used to describe syndromes that share features similar to Parkinson’s disease but are different conditions. These conditions are described below.

Just like Parkinson’s disease, the diagnosis is often a clinical one relying on an examination by a neurologist knowledgeable in these conditions. Because of this, the diagnosis may not be obvious at your first doctor’s visit and an accurate diagnosis may take time.

Common features of atypical parkinsonism that differentiate it from Parkinson’s disease are:
– Symptoms present on both sides of the body at onset.
– Early cognitive problems.
– Early problems with balance, falls and/or freezing of gait.
– Early problems with autonomic function such as orthostatic hypotension (lightheadedness when standing from low blood pressure.)
– Earlier speech and swallowing problems.
– Faster progression
– Limited improvement with medicine.
– Significant visual problems such as double vision, trouble focusing while reading.

Specific conditions include (note:  this list does not include all disorders)

Neurodegenerative Conditions. These conditions are associated with degeneration or nerve cell loss over time.

* Lewy Body Disease. Cognitive problems, hallucinations and fluctuations in levels of alertness are present within the first year of movement problems. Motor symptoms can otherwise mimic Parkinsons disease.

* Multiple System Atrophy (MSA): Slowness, walking problems, imbalance, and early autonomic nervous system problems (Orthostatic hypotension, constipation, bladder control) predominant in this disorder.

* Progressive Supernuclear [sic] Palsy  (PSP): Slowness, walking problems, imbalance, eye movement problems, speech and thinking problems predominate in this disorder.

* Normal Pressure Hydrocephalus (NPH): Early walking, thinking and bladder control problems predominate in this disorder. Brain MRI reveals enlarged ventricles and therefore is helpful in detecting this condition.

* Wilson’s disease: A genetic condition with personality changes, thinking problems, dystonia and other movement problems.  Brain imaging, blood and urine copper testing can aid in making this diagnosis especially in young people.

Secondary Parkinsonism. These conditions are caused by other problems.

* Drug induced parkinsonism.  Many antipsychotic medicines and anti-nausea medicines can cause symptoms of parkinsonism or even worsen movement problems when given to people with Parkinson’s disease.

* Vascular parkinsonism. Can cause problems with slowness, shuffling gait and thinking problems.  Head CT or MRI may be helpful in determining this.  Treatment includes careful control and treatment of cardiovascular and stroke risk factors such as smoking, high blood pressure, high cholesterol, diabetes, depression and sedentary lifestyle.

* Strokes

* Brain injury. Repeated brain trauma with concussion (ie. Boxing) and injury from lack of oxygen such as after cardiac arrest.

* Toxin exposure such as carbon monoxide poisoning, heavy metal exposure (industrial exposure to manganese, lead, cobalt or mercury), agent orange.

Recommended Blogs – About Having Alzheimer’s and About the Final Phase of Life

The New York Times has a blog called “The New Old Age.”  It often has good articles on caregiving and aging.  Last Monday’s post is about two recommended blogs — one about having Alzheimer’s Disease, and the other on “the final phase of life.”  Both bloggers are physicians – one retired and one still active.  The blogs are:

“Watching the Lights Go Out”
davidhilfiker.blogspot.com
by David Hilfiker, a 68-year-old retired MD who was diagnosed with Alzheimer’s Disease in September 2012

“Life in the End Zone”
blog.drmurielgillick.com/2013/06/back-in-business.html
by Muriel Gillick, MD, a geriatrician and palliative care physician who cares for both elderly parents.  She is also the author of a book titled “The Denial of Aging: Perpetual Youth, Eternal Life and Other Dangerous Fantasies.”

I took a quick look; both blogs look very well-written.

Here’s a link to the New York Times article about these two blogs:

newoldage.blogs.nytimes.com/2013/06/24/two-blogs-worth-reading/

The New Old Age: Caring and Coping
Two Blogs Worth Reading
The New York Times
By Paula Span
June 24, 2013, 11:50 am

The New York Times post refers to a Washington Post article about David Hilfiker, who lives in Washington, DC.  Here’s a link to Dr. Hilfiker’s Washington Post article:

www.washingtonpost.com/local/a-dc-doctor-blogs-about-his-decline-as-alzheimers-claims-his-mind/2013/03/30/6b007452-9239-11e2-9cfd-36d6c9b5d7ad_story.html

Robin

“Constructive Rest”

This post is mostly about something called “constructive rest,” which is a new term for me.

Recently on the Link2Care email list, the moderator, Chamundi, wrote about her mother with Alzheimer’s.  Her mother was nervous if she couldn’t see Chamundi.  When Chamundi was in another room, the mother would call for her.  Rather than getting upset, Chamundi decided to use some of her time with her mother to “rest.”  She would lie on the floor.  If the mother said things that could be ignored, Chamundi would say “I want to just rest here for a little while, Mom, and I’ll get up in a few minutes.”  Eventually the mother rested as well.

That story led someone else on Link2Care to offer a link to a blog post about “constructive rest.”  See:

www.somahappy.com/2012/10/constructive-rest/

In the 5-minute video at the bottom of that blog post, the instructor, Brooke Thomas, demonstrates a good position to lie in for “constructive rest.”  She suggests dedicating 15 minutes each day to this sort of rest.

It probably makes sense to lie on the floor near a sturdy chair or table so that the furniture can be used for help getting up off the floor.

I’ve copied part of the blog post below.

Robin

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www.somahappy.com/2012/10/constructive-rest/

Excerpts From

Constructive Rest
From Soma Happy
October 17, 2012

WHAT IS IT?

It is what it sounds like: resting for a constructive purpose. The most common purposes that people utilize constructive rest in their lives are 1) to decrease stress/relieve anxiety and trauma and 2) to relieve chronic pain. Constructive rest is originally a part of The Alexander Technique (alexandertechnique.com), and is taught by Alexander teachers as a way of relieving excess tension from the body which has the nifty effect of helping people to heal both stress/anxiety and pain. Jonathan Fitzgordon (and many others) believe this is because it is the only pose that allows the psoas muscle to release, and a healthy psoas is the key to a healthy and pain free body.

WHY DO IT?

It is amazing how much people will moan and groan when I give this pose to them for “homeplay”: “I just have to lie there? For 15 minutes? How will I know it’s doing anything!? Can I read? Listen to an audio book? Watch TV!? Why do I just have to lie around for so long!!!” You would think I had recommended that they remove their back molars with pliers.

I get it. We are a part of a culture of doers, and I’m a big time type A doer myself. Prescribing such passiveness to people in order to rid them of either their pain or anxiety kind of gives them the feeling of putting their trust in a witch doctor and hoping they’ll miraculously feel better. Well whether it fits into our mental model of how the world works or not (i.e. “You have to work hard to see any results.”), the truth is that rest can often accomplish a lot more than efforting. Imagine your life without any sleep at night and you start to get an idea. It’s all about balance and the rest cycle is an important part of our well-being.

“Caregiver Stress Syndrome: Identifying Symptoms, Finding Solutions”

This article is about “caregiver stress syndrome” (also called “caregiver syndrome).  The author, Rob Harris, who was a caregiver for his wife, states that this syndrome “is an overwhelming feeling that engulfs you as a result of your caregiver duties, responsibilities, constant anxiety, and the loss of self.”

This syndrome is “a new way to categorize the emotional, physiological, and psychological changes one experiences from chronic stress created by the continuous and seemingly endless caregiving activities one is confronted with on a regular basis.”

Here’s a link to the full article on robcares.com:

robcares.com/2012/12/26/caregiver-stress-syndrome-identifying-symptoms-finding-solutions

Caregiver Stress Syndrome: Identifying Symptoms, Finding Solutions
From robcares.com
by Rob Harris, SPHR
December 26, 2012

The article ends with a list of “ten strategies every caregiver should follow to stay healthy.”  I’ve copied that list below.

This article was mentioned in a recent Link2Care email.

Rob Harris has written a book titled “We’re In This Together: A Caregiver’s Story.”  If anyone reads the book, please let me know if you’d recommend it!

Robin

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Excerpts From

Caregiver Stress Syndrome: Identifying Symptoms, Finding Solutions
From robcares.com
by Rob Harris, SPHR
December 26, 2012

Ten Strategies Every Caregiver Should Follow To Stay Healthy

1. Know that you are worthy.

As a caregiver, it’s acceptable to occasionally be depressed and believe life is passing you by. The key is that it’s a short-term emotional state. You have as many talents and contributions you can make. You can accomplish great things and can achieve success. Being a caregiver can provide you with a perspective and appreciation of life that few others will ever know. Most of us that are, or have been, caregivers appreciate each and every day because we have been exposed to external events most others only read about.

2. Never stop growth and improving yourself.

Each month, select a category that you would like to see yourself improve in. Once you have decided what it is, work on improving it for a month. Learn about it, focus attention on ways to improve, and document your strategy and progress. Select a new topic each month. You need not have mastered the category. At the end of the year you will have improved twelve different areas of your life. Even if you improved each by a small percentage, improvement occurred. How many others can make this claim?

3. Stop fighting yourself!

You are your biggest adversary. Strategically reduce negative thoughts and comments. For every negative thought or comment you make about yourself, pause and try to find the positive in each. For example, rather than saying, “Here comes another horrible day,” consider this instead: “I made it through another day yesterday and I am here on earth to make the best of today.” Make a concerted effort to think positively rather than allow the negative thoughts to pull you down.

4. Maintain or elevate your level of self-confidence.

Smile — This may feel strange, but if you hold a smile for no less than 30 seconds, your brain begins to react. It doesn’t understand why you’re smiling, so it begins to send endorphins your way so as to justify your smile. You will honestly begin to feel better and your mood will change if you smile. Along with that, smile at others. They will smile back. It, too, will have a positive impact upon your belief that you can influence others in a positive way.

5. Commit random acts of kindness.

Look for opportunities to help others every day, whether it is friends, colleagues, strangers, or volunteer organizations. Making someone else feel happy and valued will improve your belief that you can influence others. Your level of self-confidence will grow.

6. Correspond via social media.

Read about what you’re facing. Learn how to improve your situation. Join social media outlets and share your knowledge and ability to improve the lives of others that may be beginning the journey you have been on for a longer period of time.

7. Dress well.

Look good; feel good. If you care about how you look, others will respond. They will react to you differently than they might ordinarily.

8. Start your day on a positive note.

For an entire year, many of which were spent in a hospital caring for my wife, I started each and every day with the song, “Don’t Worry, Be Happy” by Bobby McFerrin. My wife and I would begin our day singing the song, no matter how debilitating her medical condition was at the time. It made a huge difference in how we began each and every morning.

9. Have commitment.

Commit to carrying out these tips. Commit to being a more confident person. Write it down and tell people. By making your confidence quest real, you are far more likely to get there.

10. Avoid isolation.

Never go a day without stepping outside, if even for a few minutes. Go to a grocery store, fill up your tank with gas, walk around the block, or go to the gym for an hour. Make eye contact, nod at passers-by, and possibly start a conversation with people. It will reduce the feeling of loneliness you experience. Contact an organization that specializes in the ailment your loved one is facing. They have others that are in similar situations. Communicate with others. Make friends. Expand your network. The larger your network, the less isolated you might feel.

For every negative, there is a positive. For every problem, there is a solution. For every lonely person, there is someone ready, willing, and able to speak with and provide possible solutions.

As caregivers, we are being recognized for our efforts and the obstacles we face. Solutions are being offered. We no longer have to feel our lives have ended. There is so much to live for. Our only challenge is to know how and where to look. Doing so can do wonders for how you view your role as a vital contributor to your loved one’s health, your personal growth, and your positive, lasting impression on others.

Four Stages of PSP (PSP Association, UK)

Last month, a terrific article was published on progressive supranuclear palsy (PSP) in a nursing journal. The article shares a list of symptoms in the four stages of PSP from the PSP Association, based in the UK. The four stages are:

* early stage
* mid stage
* advanced stage
* end of life stage

The symptoms are copied below. I’m sure you can overlook the British spellings.

Robin

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Best Practice in PSP
PSP Association (UK)
2012

Early stage:
May present via the fracture clinic, falls services, eye specialist or speech and language therapist. The early stage typically spans years 0-1.

> Ambulant.
> Occasional falls.
> Unsteadiness and poor balance.
> Possible visual problems affecting ability to read.
> Voice changes, for example reduced volume.
> Mood changes.
> Reduced socialising.
> Changes in mood and behaviour, including apathy and anxiety.

Mid stage:
Many people reach this stage before diagnosis. Consider discussing advance care planning and advance decisions to refuse treatment. Consider referral to palliative care services. The mid stage typically spans years 2-3.

> Ambulant with aids.
> High risk of falls and injury.
> Visual problems affecting self-care abilities, for example eating and walking as unable to move eyes to see.
> Speech increasingly unintelligible.
> Inability to initiate conversation.
> Impulsivity (risky or impulsive behaviour).
> Apathy.
> Dysphagia.
> High level of supervision required.
> Increasingly socially withdrawn.

Advanced stage:
Patients should be on GP palliative care register and have access to specialist palliative care.
The advanced stage typically spans years 3-6.

> Mobility significantly compromised, probably chair bound requiring a wheelchair for mobility.
> Significant visual problems.
> Significant muscle stiffness.
> Significant communication problems, but probably still able to understand.
> High risk of aspiration and pneumonia as a result of dysphagia.
> Pain.
> Increasing periods of sleepiness.
> Incontinence.
> Severely withdrawn socially.
> Dependent for most or all aspects of care.

End of life stage:
This stage is difficult to detect, but may be indicated by reduced levels of consciousness, inability to eat or drink, acute infection, a fall or major fracture, and rapid and significant weight loss. The end of life stage typically spans 6-8 weeks.

> Severe impairments and disabilities.
> Rapid and marked deterioration in condition.
> Decisions with regard to treatment interventions may be required, considering an individual’s previously expressed wishes (advance decisions to refuse treatment).