Monthly Archives: December 2016


National Parkinson Foundation toll-free Helpline

The National Parkinson Foundation (NPF) runs a toll-free Helpline, 1-800-4PD-INFO, (473-4636) The lifesaving NPF Helpline, launched in 2010, is staffed by a team of patient-focused nurses, social workers and therapists who answer calls about Parkinson’s disease (PD) in English and in Spanish Monday through Friday from 9 a.m. to 5 p.m. EST.

“NPF’s Helpline links our groundbreaking research to improve the lives of people with Parkinson’s today directly with the community we serve,” I know this first hand because the Helpline has made a difference in the life of my mother, who is living with Parkinson’s.” –John Kozyak, NPF’s Chairman of the Board. ”

“We’re more than just an information line. We truly care about the people we serve and that’s the key to our success, Whether you have yet to receive a diagnosis, are recently diagnosed with Parkinson’s, or caring for a family member with the disease, we are here to help you understand your condition, your care, and the latest research on how patients can live their best lives with Parkinson’s. We spend as much as 45 minutes on calls with those who have been recently diagnosed – more than three times the average – because we can really make a difference.” –  Adolfo Diaz, NPF’s Director of Patient Services who manages the Helpline.”

NPF’s Helpline Specialists help callers locate resources in their area, as well as send a customized informational packet after the call. The NPF packets arm people with Parkinson’s and their families with helpful information on preparing for an appointment with their general practitioner or movement disorder specialist. People with Parkinson’s disease, their care partners and families are invited to call to receive emotional support and referrals to health professionals and community resources. A wide variety of helpful NPF publications and the Aware in Care kit are also available for order through the Helpline.

NPF also has an online video series called, “Ask the Helpline,” where our PD Specialists answer the most frequently asked questions including: why exercise is important, what role a movement disorder specialist plays and how the role of caregiver changes over time.

People with questions about PD may also e-mail the NPF Helpline at helpline@parkinson.org.

 


Diabetes drug slows experimental Parkinson’s disease progression, human trials to begin next year

A new investigational drug originally developed for type 2 diabetes is being readied for human clinical trials in search of the world’s first treatment to impede the progression of Parkinson’s disease, following publication of research findings today in the journal Science Translational Medicine. More

A drug initially designed to treat diabetes may be a breakthrough treatment for Parkinson’s disease. After decades of disappointment, could MSDC-0160 be the drug researchers have been searching for? More


Common Natural Sweetener May Treat Parkinson’s Disease

This post is about experimental drugs and treatments, Under absolutely no circumstances should anyone reading this consider it medical advice.  These are novel results that need to be replicated and verified before being considered gospel.  Before considering or attempting any change in your treatment regime, please consult with your doctor or neurologist. 

The natural sweetener mannitol, a common component of sugar-free gums and candies, may hold potential for Parkinson’s disease (PD) according to a study, funded in part by the Parkinson’s Disease Foundation, in the June 14, 2013  issue of The Journal of Biological Chemistry. In this initial study, the compound not only improved PD-like symptoms in fruit flies, but also reduced harmful levels of alpha-synuclein (the hallmark of PD) in the brains of fruit flies and mice.

Read more at http://www.pdf.org/en/science_news/release/pr_1373476667


The Israeli scientists were interested in the ability of Mannitol to inhibit the formation of alpha synuclein aggregates (clumps of the protein that is associated with Parkinson’s disease). Chemicals similar to Mannitol have exhibited protein destabilizing properties, so it was an interesting idea to test.

The researchers used different concentrations of mannitol and added it to a solution of alpha-synuclein. They left this concoction shaking for 6 days (at 37°C) and then assessed the levels of aggregation. Curiously the low levels of Mannitol had the strongest inhibitory effect, while the higher concentrations had no effect. The researchers repeated the experiments and found similar results.

Given this success, they turned their attention to an animal model of alpha synuclein: a genetically engineered fly that produces a lot of alpha synuclein. They found that Mannitol treated flies had significantly less alpha synuclein aggregation in their brain than untreated flies. This study was then repeated in genetically engineered mice (that produce too much alpha synuclein) and guess what? They found the same results.

These results led the scientists to suggest that “mannitol administration in combination with other drugs could be a promising new approach for treating PD and other brain-related diseases such as Alzheimer disease”.

A warning regarding Mannitol

Before you rush out and start loading up on Mannitol there are a few things you should know about it.

It is used medically, usually to treat increased pressure within the skull.

It should not be abused, however, as it can have an osmotic effect (in particular, attracting water from the intestinal wall). Consumed in excess, it will cause diarrhea, abdominal pain, and excessive gas.

In addition to intestinal problems, Mannitol has also been associated with worsening heart failure, electrolyte abnormalities, or low blood volume. We also do not know what effect it may have on absorption of L-dopa and other Parkinson’s disease medications.

Read more at https://scienceofparkinsons.com/2016/05/10/manna-from-heaven-mannitol-and-parkinsons-disease/


Tel Aviv University researchers say artificial sweetener could prevent aggregation of toxic proteins in the brain.
http://mfa.gov.il/MFA/InnovativeIsrael/ScienceTech/Pages/Sweet-news-for-Parkinson’s-disease-4-May-2014.aspx


Another Possible Benefit of Taking Mannitol for Parkinson’s

An added benefit, it has the effect of stimulating a daily bowel movement. If someone is looking for assistance with constipation mannitol can serve double duty!!


Listen to the radio show interview with Don Don McCammon which I have embedded in this post below.

http://www.medscape.com/viewarticle/806873

Mannitol would be an attractive treatment option because it’s already approved for various medical uses by the FDA, as a diuretic and as a rinsing agent during certain surgical procedures.


Testimonials

 


Microsoft researcher creates wearable which smooths handwriting in Parkinson’s Disease

Haiyan Zhang, Innovation Director at Microsoft Research Cambridge, has taken part in the BBC’s The Big Life Fix challenge which asks young technologists to use their skills to help others.
Her task was to find a way to help 29-year-old Emma Lawton, who is a graphics designer, to improve her writing and drawing skills after this was negatively impacted by her Parkinson’s Disease diagnosed three years ago.

Read more at BBC.com

Read more at steemit.com

(Video) Emotional moment young woman with Parkinson’s Disease writes again thanks to gadget read more at mirror.co.uk


ELISPOON – the bowl of the spoon remains horizontal and keeps the food in place.

Whatever movement of the wrist is performed, the bowl of the spoon remains horizontal and keeps the food in place.

The material used is lightweight and strong.  A key characteristic is the spoon’s affordability.

There are no electrical components or batteries, making it carry anywhere and to clean.

ELISPOON is a product designed and built to ease the life of the users and their love.

Two graduates from Israel’s Technion developed a spoon that their child with motor co-ordination problems could use without spilling its contents.   Now anyone can buy it. Useful also for the elderly or anyone suffering from tremor


New Website section for Books


A new section of the website is being developed.  The Book section will list books that people have found helpful.  You can see the books so far here or by clicking the “Books” post category on the right or the “Books” menu item at the top of the page.

Do you have a favorite book abut Parkinson’s? Let us know about it by filling out this form

 

 


Use the website forum to ask a question or start a discussion

An Internet forum is a discussion area on a website. Website members can post discussions and read and respond to posts by other forum members. A forum can be focused on nearly any subject and a sense of an online community, or virtual community, tends to develop among forum members. A forum usually allows all members to make posts and start new topics.

 

Start a discussion or ask a question by starting here.

 


June 4, 2019 Kyoto Japan – World Parkinson’s Congress

The World Parkinson’s Congress is held every three years. The last one was in 2016 in Portland Oregon The next one in Japan.

http://www.wpc2019.org/?page=AboutCongress

There has been strong interest in our support group in attending the next World Parkinson’s Congress in Kyoto, Japan.

Letter from Ian Wing

I should emphasize that I am happy to play a coordinating and advisory role but cannot be a travel agent or “guide” in the traditional sense. Attendees will need to make their own travel and accommodation arrangements. I will be happy to make suggestions and, depending on the level of interest, organize some sight seeing in Tokyo prior to the Congress.

THE CONGRESS  – www.wpc2019.org

This is held every three years and brings together doctors, researchers, clinicians, people living with PD, caregivers and others. Participants are from all over the world and there is a great deal of interaction between participants. There were more than 4000 participants in Portland.

Sharon and I have attended the past two congresses in Montreal and Portland, OR and a stand out feature was the vigorous debate between medical professionals and also between people living with PD, their caregivers and clinicians. In the summing up session in Portland, several medical professionals said that the Congress was unique in that they received much valuable feedback – and push back – from people living with PD. As it is a world congress, participants are able to share knowledge and experience from many countries.

The web site is up and contains a lot of general information.

According to the organisers, attendance is going to be limited and registration will open on September 10. The cost is $300 for people with PD and also for caregivers. The cost increases to $350 after Feb 28 2019.

ACCOMMODATION AT THE CONGRESS

The organisers make arrangements with specific hotels near the venue and represent the full range from high end to moderate. In both Montreal and Portland the moderately priced accommodation booked out very quickly. The website is suggesting $150/night as the average for Kyoto.

There are other options such as Airbnb and “business hotels”  – but you need to keep in mind that Japan is a very densely populated country and space is always at a premium. The cheaper end will have very small rooms and bathrooms. Also, Kyoto is a hilly city and roads are very narrow with narrow sidewalks if at all.

For that reason and because trains and buses are often crowded and not designed for large pieces of luggage I cannot emphasise strongly enough that you need to minimize the amount of baggage you bring with you.

TRAVEL

Expedia is showing economy fares from JFK and Boston to Tokyo (Narita (90km from central Tokyo) – or Haneda (20km)  ranging from about $850 on Chinese airlines via Beijing or Shanghai to nearly $2000 on US or Japan Airlines.

The nearest international airport to Kyoto is Osaka – Kansai International (KIX). Flights are more expensive than to Tokyo – particularly n US airlines.

Japan Airlines is offering a fare of $2600 JFK – Tokyo in their premium economy cabin – which I have found to be very good. Some people have also expressed interest in travelling to Australia after the congress and the fare JFK – Tokyo – Sydney return is $2700 in premium economy.

I have found the expedia “bundled” deals of travel and accommodation to be very good value in Japan – but again, you get what you pay for – rooms at the APA chain of hotels contain a double bed and approximately one foot of space around it – about 9 sq ft at the entrance and a bathroom about 12 sq feet. The very confined space can be challenge to those of us who have balance or movement issues.

TOKYO

While Kyoto is a fascinating city and, as the capital of Japan from 794 AD until 1868, contains a great deal of history, first time visitors should definitely spend a few days in Tokyo, one of the world’s great cities. Sharon and I lived there for 8 years and are familiar with its layout and points of interest. It has an extensive and extremely efficient subway system but does involve a lot of walking and stairs – and must be avoided in rush hour (the Japanese have an expression – “sushizume” – which means jammed into the train like grains of sushi rice in a mold. )

Taxis are plentiful but are expensive and very few drivers speak English.

I am looking into hiring a mini bus and driver which we could use to do our own tour. Cost is about Yen90000 – $800 – or $50 per person for a 16 seater.

If participants would like to spend say 3 days in Tokyo – I suggest we plan on arriving in Tokyo on May 31 – leaving the USA on 29/30 May.

The conference begins on Tues June 4 in the afternoon and we could depart for Kyoto on the Shinkansen (Bullet train –  200 mph) on Tues morning – travel time is 2 hours 15 mins. Cost is about $200 one way for a reserved seat (recommended)

KYOTO

Organisers at past congresses have arranged group tours to places of interest and I expect the Japanese organisers will also do this. Apart from the Imperial Palace, there are a number of famous temples and shrines in Kyoto – Kinkakuji (Golden pavilion) and Ryoan-ji (famous rock garden) – and many others. Kyoto was not damaged in WW2 and so the older parts of Kyoto date back many centuries. This includes the Gion district, home to geisha traditions. The city of Nara is nearby and was the capital prior to Kyoto.

Osaka was totally destroyed during WW2 and so does not feature much on the tourist trail.

Please monitor the web site and let me know if you have questions or need advice on making arrangements.

Commencing in November I propose that people intending to go to Kyoto meet for ½ hour prior to the regular meeting so we can continue the planning.

I’m looking forward to having a capital district group in Kyoto!

Ian Wing

 


Michael J Fox Foundation, ‘Faces of Parkinson’s’, 2014


Chair Yoga at St. Sophia’s Tuesday

For seniors with mobility issues, there is a “Chair Yoga” class sponsored by NNORC which meets on Tuesday at 11 a.m. The instructors for all three classes are trained and dedicated professionals.

 

Monday morning Tai Chi class sponsored by Albany Senior Services which meets at 9:30 a.m.

At St. Sophia Greek Orthodox Church 440 Whitehall Road Albany, New York 12208
Tel: (518) 489-4442

(Note: There are no membership fees for this group.)

For health and fitness, there are programs that are free. A Monday morning Tai Chi class sponsored by Albany Senior Services which meets at 9:30 a.m.

 

http://stsophia.net/events/participate/


Tai Chi class at St. Sophia’s Monday

Monday morning Tai Chi class sponsored by Albany Senior Services which meets at 9:30 a.m.

At St. Sophia Greek Orthodox Church 440 Whitehall Road Albany, New York 12208
Tel: (518) 489-4442

(Note: There are no membership fees for this group.)

For health and fitness, there are programs that are free. A Monday morning Tai Chi class sponsored by Albany Senior Services which meets at 9:30 a.m.

And for seniors with mobility issues, there is a “Chair Yoga” class sponsored by NNORC which meets on Tuesday at 11 a.m. The instructors for all three classes are trained and dedicated professionals.

http://stsophia.net/events/participate/