“What Are the Other Parkinsonisms?” Webinar, Aug 18, 9am CA time

The Michael J. Fox Foundation has a terrific monthly — Third Thursdays — webinar series. Finally they are getting around to the atypical parkinsonism disorders next month, Thursday, August 18th at 9am California time. (….though it seems that there will still be a Parkinson’s Disease angle on the webinar.)

If you are not able to participate in the one-hour webinar live, I encourage you to register for it so that you’ll receive notice when the recording is available online. Usually the recording is available within a week of the webinar.

Copied below are the details from the MJFF website.

Robin


Michael J. Fox Foundation
Third-Thursday Webinar
Thursday, August 18 @ 12 p.m. ET / 9 a.m. PT

In this webinar we’ll discuss atypical parkinsonisms of corticobasal degeneration, multiple system atrophy, Lewy body dementia and progressive supranuclear palsy. What are the similarities and differences? Could treatments for one condition help those with another, including Parkinson’s disease?

Click here and then on the orange REGISTER NOW button:

www.michaeljfox.org/page.html?hot-topics-webinar-series

Is Parkinson’s and parkinsonism on the increase?

An interesting study was published in JAMA a couple of weeks ago. The authors, from Mayo Rochester, state: “Our study suggests that the incidence of parkinsonism and PD [Parkinson’s Disease] may have increased between 1976 and 2005, particularly in men 70 years and older. These trends may be associated with the dramatic changes in smoking behavior that took place in the second half of the 20th century or with other lifestyle or environmental changes. However, the trends could be spurious and need to be confirmed in other populations.”

If the increase in parkinsonism and PD were due to improved diagnosis, then we would likely see this effect in both men and women. But the researchers found an increased incidence in men especially.

There is research (albeit controversial), both in PD and in PSP (progressive supranuclear palsy), that smoking may suppress symptoms. Indeed, my father’s PSP symptoms began *after* he quit smoking. Another local support group member had the same experience. The rate of smoking has decreased more rapidly in men than women in the US.

Alzforum compares the rise of incidence in parkinsonism and PD with the opposite findings for dementia: “This finding is in stark contrast to a measurable decrease in Alzheimer’s disease in Europe and the United States, which researchers attribute to healthier lifestyles of late.”

Copied below is the link to the short Alzforum summary of the JAMA research paper and related papers, and the full Alzforum summary. And copied below is the link to the JAMA paper abstract.

See: www.alzforum.org/news/research-news/rising-tide-parkinsons

A Rising Tide of Parkinson’s?
Alzforum
July, 8 2016

Also see: www.ncbi.nlm.nih.gov/pubmed/27323276

JAMA Neurology. 2016 Jun 20.
Time Trends in the Incidence of Parkinson Disease
Savica R, Grossardt BR, Bower JH, Ahlskog JE, Rocca WA.
Mayo Clinic, Rochester, Minnesota.

Robin

Former Utah Jazz Coach Diagnosed with LBD

Local LBD support group member Scott pointed out this recent article to me. It’s an article from the Salt Lake Tribune about former Utah Jazz basketball coach Jerry Sloan being diagnosed with Lewy Body Dementia. As Scott said, it’s a courageous person to state publicly he/she has LBD.

I’ve listed a link to the full article below along with a companion article about diagnosing LBD.

Utah Jazz: Jerry Sloan suffering from Parkinson’s disease, and a form of dementia
By Steve Luhm
The Salt Lake Tribune    
First Published Apr 06 2016 03:30PM
Last Updated Apr 09 2016 05:39 pm

See http://www.sltrib.com/home/3743576-155/utah-jazz-jerry-sloan-suffering-parkinsons?fullpage=1  

The companion article states that “Lewy body dementia, Alzheimer’s and Parkinson’s diseases appear to be linked, based on similar evidence seen in the brains of patients, according to the Alzheimer’s Association.” There is NOT similar evidence seen in the brains of those with LBD and AD. Often they co-occur but unless they occur, the brains are very different. I think the reporter misread what the Alzheimer’s Association’s website said about LBD.

Utah doctor: Diagnosing Parkinson’s, Lewy body dementia has improved, but cure remains out of reach
By Benjamin Wood
The Salt Lake Tribune 
First Published Apr 06 2016 08:24PM   
Last Updated Apr 09 2016 05:39 pm

See www.sltrib.com/home/3748688-155/utah-doctor-diagnosing-parkinsons-lewy-body

Robin

Non-medication approaches to orthostatic hypotension from NYU

Something like 80% of those with MSA suffer from orthostatic hypotension (OH) and about 50% of those with LBD do. Someone recently posted to one of the MSA-related Yahoo!Groups this New York University publication (written by autonomic expert Horacio Kaufmann, MD) on treating OH. The article below is copied from the Yahoo group.

Be sure not to miss the physical counter-maneuvers — making a fist, crossing your legs, clenching your buttocks — in #9!

Robin

========================

Treating symptomatic orthostatic hypotension (OH)
by Horacio Kaufmann, MD
Director, NYU Dysautonomia Center (dysautonomiacenter.com)
(not dated)

Symptoms of OH include dizziness/lightheadedness, feeling about to faint, fatigue/tiredness, shortness of breath, changes in vision, pain in neck and shoulders or chest pain.

Symptoms of OH can be improved with time, patience and non-pharmacologic changes. It is tempting to try to control OH only with medications. However, these are not effective enough and may have adverse effects. However, treatment of OH is more successful if non-pharmacologic measurements are implemented.

Following is a series of steps to improve symptoms of OH. All steps may be implemented at the same time. If performed properly, these can lead to a dramatic improvement, even with no medications.

1. Liberalize water intake. Patients with OH need more water than healthy people. Patients with OH should be drinking 1 gallon/day (~3 liters). Ideally, it is best to drink just water. Tea and coffee might be acceptable, but they may increase urine output so, at the end, they may worsen your symptoms. Diet beverages are also acceptable. Gatorade, juices, and non-diet beverages are not recommended due to their high-sugar content. Diet (sugar free) Gatorade is fine.

2. Liberalize salt intake. Add as much salt to your meals as you can handle. Most of patients do not need to take salt tablets. In fact, salt tablets may cause abdominal discomfort. Just enjoy regular salt with your meals.

3. Wear compression stockings. Compression stockings will reduce the venous pooling that occurs when standing up and, therefore, will improve your blood pressure standing. To be useful, compression stockings should be worn up to the waist. Those up to the knee are not effective. You do not need to wear the stockings during sleep.

4. Wear an abdominal binder. The mechanism is similar to that of compression stockings. You do not need to wear it during sleep.

5. Sleep with the head of the bed raised at least 30 degrees (ideally 45-50 degrees). This is useful because patients with orthostatic hypotension frequently have supine hypertension (i.e., high blood pressure when lying down). Therefore, to avoid supine hypertension, patients should never lie flat. Sleeping with the head of your bed raised will also reduce urine output, making you wake up fewer times to urinate, and will improve your blood pressure in the morning. The best way to raise the head of the bed is to get an electric mattress. These are affordable, commercially available, and in several sizes. Other, less efficacious ways to increase the head of the bed is by using a wedge, or just by putting some books/bricks under the upper feet of the bed.

6. Drink 500 ml of cold water 30 minutes before getting out of bed in the morning. This will increase your blood pressure when you get up. Drinking 500 ml of water in any other moment of the day will also increase your blood pressure. You may use this on an as needed basis (but make sure you drink, in total, around 1 gallon/day of liquids).

7. Start a physical therapy regimen. In patients with OH, physical exercise will decrease blood pressure. But exercise is crucial to keep muscles active. Therefore, in order to avoid low blood pressure when exercising, patients should perform recumbent exercises (e.g., recumbent bicycle, elastic bands, rowing machine, etc.) The best exercise is, by far, the one performed in a swimming pool. This is because the hydrostatic pressure of the water will prevent the fall in blood pressure. Therefore your blood pressure will not fall so dramatically if you are inside the water (with the head out, of course, so that you can breathe) even in spite of the fact that you are standing. While you are inside the water you will feel much better and you will be able to exercise with no significant symptoms. The better your physical shape is, the less intense your symptoms of OH will be.

8. The following factors worsen OH (i.e., decrease blood pressure) and should be avoided (or can be used right before going to bed to lessen supine hypertension during nighttime):

a. Hot and humid temperatures
b. Physical exercise (see point #6)
c. Dehydration (see point #1)
d. Alcohol
e. High glycemic index carbohydrates. Try to reduce high-glycemic carbohydrates in your meals. Also try to have several, small meals (5-6) instead of three traditional meals.

These are high-glycemic carbohydrates that you should reduce/avoid:

Potatoes, Yams, Candy, Bagels, White bread, White pasta, Pizza, Corn, Rice, Rice cakes, Oatmeal, Wheat, Grits, Cereals (corn flakes, etc), Soft drinks, Bottled fruit juices (orange, apple, etc), Cakes, Cookies, Ice cream, Chocolate, Full fat milk, Watermelon, Bananas, Grapes, Rye, Yogurt

Try to increase low-glycemic index carbohydrates in your diet, including:

Whole wheat bread, Whole wheat pasta, Brown rice, Pearl barley, Skim milk, Reduced-fat yogurt, Apples, Grapefruits, Pears, Peaches, Just-squeezed fruit juices, Prunes, Beans, Black-eyed peas, Chickpeas, Peas, Hummus, Lentils, Soybeans, Cashews, Peanuts, Carrots, Diet soda, Almonds, Nuts, Quinoa

9. Be aware of your symptoms. If you experience symptoms of orthostatic hypotension, you will find relief by performing physical counter-maneuvers (making a fist, crossing your legs, clenching your buttocks), useful to increase standing blood pressure. If these counter-maneuvers are not enough, sit or lie down quickly to avoid passing out.

10. Finally, follow the recommendations regarding medication changes that we may recommend.

REMEMBER: NON-PHARMACOLOGICAL MEASURES (POINTS #1 TO 9) ARE THE KEY TO THE MANAGEMENT OF ORTHOSTATIC HYPOTENSION

Status of DLB and PDD Research

This write-up, published yesterday (4-21-16), from Alzforum is about the status of research into Lewy body dementias (LBD), which includes Parkinson’s Disease Dementia (PDD) and Dementia with Lewy Bodies (DLB). This summary is based upon discussion among experts at an NIH conference in Maryland at the end of March 2016. The NIH held a similar conference in 2013.

This is well worth reading. Here are key excerpts of the summary:

  • “Topping the priority list at the 2013 summit, and again this year, were clinical trials of repurposed drugs, investigational compounds, or non-pharmacological methods to treat the symptoms of LBD, said Jennifer Goldman, Rush University Medical Center, Chicago. Few advances have been made on that front. In the past three years, a handful of clinical trials has been completed for DLB, mostly for drugs used in Alzheimer’s…” Two clinical trials on Aricept (donepezil) were conducted in Japan.
  • “Three clinical trials have targeted PDD, Goldman said, one finding that rivastigmine is safe for this disorder, another that memantine lessens caregiver burden, and another that pimavanserin may relieve psychosis…”
  • “The committee further recommended compiling an inventory of available autopsied LBD brains to prepare for large, coordinated studies.”

Brain Support Network, by the way, has handled many LBD brain donations over the last nine years. If you’d like us to assist your family with brain donation arrangements, let us know. Obviously, autopsied LBD brains are critical for research.

Check out the link to the Alzforum website as there’s an interesting image of a pareidolia test. Apparently those with dementia with Lewy bodies tend to misinterpret random stimuli.

“At 2016 Summit, Field Tackles AD-Related Dementias One By One”
Series: Alzheimer’s Disease-Related Dementias 2016 Summit, Part 2 of 2
Alzforum
21 Apr 2016
www.alzforum.org/news/conference-coverage/2016-summit-field-tackles-ad-related-dementias-one-one

Robin