Sleep in Parkinson’s disease

Last week, I posted about a recent scientific understanding of WHY we need sleep (see post HERE).

There are all kinds of benefits to getting enough sleep:  It’s good for your heart, it may reduce stress, and even prevent cancer.

More importantly, sleep is good for your brain – especially working memory… the kind essential to daily function.

People with Parkinson’s have difficulty sleeping; including difficulty falling asleep, staying asleep, restless legs and vivid nightmares. However, the link between sleep disorders and Parkinson’s has yet to be scientifically determined.

Peeraully et al. (Mov Disord 2012) report a higher prevalence of subjective sleepiness, increase in daytime sleepiness, rapid eye movement behaviour disorder in persons with Parkinson’s compared to controls

If you’re interested in learning more about sleep disorders in Parkinson’s, the National Parkinson Foundation and Tanya Simuni, MD have a great video about the topic… you can watch it below. Sweet dreams and much love.

For more on sleep and Parkinsons:

Michael J Fox Foundation

Mov Disord. 2012

promising biomarker for parkinson’s disease: PPMI results

Parkinson’s disease is typically characterized in a clinical setting by the present of tremor, rigidity, bradykinesia (slow movement), and in the later stages, postural instability (balance).

Researchers from the University of Pennsylvania report ( JAMA Neurology) that the appearance of proteins in the spinal fluid may be the key to identifying affected patients early in the disease process, long before symptoms set in. The study results, which came from the Parkinson’s Progression Markers Initiative (PPMI) study. PPMI is sponsored by the Michael J Fox Foundation and aims to take biological measurements from 400 patients and 200 healthy controls to better understand the onset and progression of the disease.

The study found that people with early stage Parkinson’s had lower levels of the biomarker proteins amyloid beta and alpha synuclein.

It also distinguished between people with different disease presentations:

  • those with higher levels of motor dysfunction,  had lower levels of tau and alpha synuclein,
  • those whose muscles tended to freeze, or people who had difficulty walking, showed lower levels of amyloid beta and tau.

These promising results suggest we may be able to detect Parkinson’s with spinal fluid earlier, which could change the way it is diagnosed and treated. It also suggests for the first time that there may be different types of the disease with different potential treatments. This seems to support the hypothesis that Parkinson’s disease is a “spectrum”, and that people are diagnosed and face different disease along the “dopamine spectrum”.

This is definitely a step in the right direction. Having a biomarker to enable earlier detection and better disease management will improve the quality of life of all those involved. Really exciting! much love.

Read more…

thoughts about genetic testing

“I’ve got the gene for …”

Have you thought about genetic testing? Thought about finding out what might be in store for you? Would finding out something change the decisions you make? Change how you live your life?

Would knowing empower you or cripple you by casting a shadow over the rest of your life?

genetic-testing

A “family decision”?

… because it’s not only about you. Testing yourself means testing your family; “Don’t you see? If your test is positive, it means I’ve got the gene, too. And I don’t want to know. I have a right not to know, don’t I?”

This genetic knowledge is also most likely to have a great impact on the choices to be made by those who are contemplating parenthood. Could decisions around fertility, and advanced in-vitro fertilization techniques, like preimplantation genetic diagnosis, “prune” genetic diseases from a family tree?

Diagnosis vs. Treatment.

These are the issues we face as scientists learn more about genetics…. the balance between knowing and not. What should be do with all this new information? Especially when genetic disease prediction continues to outpace medicine’s ability to treat or cure. For example, we have a genetic test for Huntington’s disease that can confirm a mutation, but it offers no treatment for the devastating symptoms. This leads to a therapeutic rift between what we know and what we can do.

Legal issues.

What about socially and/or legally? What if the results might become public and cause exclusion from employers or insurers. Laws to prohibit discrimination of people with a history of genetic disorders are not yet completely in place.

Margaret R. McLean, director of Biotechnology and Health Care Ethics at the Markkula Center for Applied Ethics, offers the following questions to clarify some of the key issues facing medical genetics in the years to come;

1. What is the purpose of taking a particular genetic test? Who is affected by the results?

2. Who has control of genetic information?

3. What does it mean to offer genetic testing and/or therapy in the absence of universal access to health care?

4. On what basis should someone undertake genetic intervention such as genetic constructive surgery if and when it becomes available?

5. For what kind of genetic future are we planning?

… or improved resources?

… or can it lead to a wealth of research resources, like the story of 23 and me’s Anne Wojcicki and her husband (google founder) Sergei Brin. “Brin, who began donating to Parkinson’s research in 2005, accelerated that giving after he learned in 2008 he has a flawed gene (LRRK2) that presents him with a 50 percent chance of getting the disease by age 70. So far Brin has donated $132 million, mostly through the Michael J. Fox Foundation for Parkinson’s Research, to help create a DNA database of 7,000 patients and to support work on the first targeted treatments that aim at the genetic causes of the movement disorder.” (source)

Have you had genetic testing? Have you thought about it? What is most attractive about genetic testing to you? What is the biggest barrier? Please share your thought’s in the comments below! much love.

A Parkinson’s App?

We lack biomarkersobjective biological metrics including imaging, biologic sampling, behavioural assessments — to measure the progression of Parkinson’s disease. But our smart phones may just be the answer to that! Organizations are focused on developing biomarkers for Parkinson’s, programs like the The Michael J. Fox Foundation for Parkinson’s Research and Parkinson’s Progression Markers Initiative (PPMI).

Max Little has drawn everyone attention to Parkinson’s biomarkers, specifically a voice biomarker (see link here). Even better, he has drawn attention to how a smartphone (something almost all of us carry!) may be the answer! Here is some new research that is happening using smart phones to ID Parkinson’s biomarkers

#1. Using iPhone’s accelerometer to detect tremors

#2. Using a smartphone camera to detect hypokinesia— the frozen or stony face that many people with Parkinson’s display.

#3. Using a phone’s GPS to identify environmental markers for Parkinson’s, or the phone’s mobile payment features (i.e. mobile wallets) to detect things like diet or lifestyle markers.

The Michael J Fox Foundation has gotten on board and are offering a research challenge to spur ideas for using patient data, collected using smartphones, in Parkinson’s disease (PD) monitoring and treatment. It is aimed at “developing opportunities for patients to contribute data about the real experience of Parkinson’s disease”. “Many symptoms of Parkinson’s disease can be simply and objectively measured with smartphones. We have such a data set and we’re challenging the research community to help us put it to use.”

What do YOU think is the best Parkinson’s biomarker to measure using your smartphone? What are some of your favourite apps that you can’t live without (or so it may seem sometimes?)? Please share in the comments below!

much love.

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References:

Famous Faces of Parkinson’s


 

… do you know any others to add to this list? Let me know some other faces of Parkinson’s that inspire you in the comments below! much love.

My favourite things: More Parkinson Blogs

This week I am sharing with you MY favourite Parkinson-related blogs… earlier this week I introduced some lovely lady bloggers and here are some more of my favourites!

  1. Positively Parkinson’s by Bob Kuhn – http://positivelyparkinsons.blogspot.ca. Bob was diagnosed with Parkinson’s Disease at age 53 (2006). He is a lawyer who practices as general counsel to a wide variety of clients, in Vancouver British Columbia, and writes passionate and inspirational posts.Aging & Parkinson’s
  2. Aging and Parkinson’s and Me by John Schappi – http://parkinsonsand5htp.blogspot.ca. John was diagnosed with Parkinson’s at age 80 (2009). He researches about Parkinson’s meds, exercise and other aging-related issues that enhance the quality of life.
  3. Wearing Off – http://www.wearingoff.com/blog. A variety of bloggers write insightful posts about living with Parkinson’s.
  4. Parkinson’s Assistance Network Directory and Alliancehttp://www.parkinsonpanda.org/blog.html. Information from Jim and his P.A.N.D.A. army unites community resources from Parkinson’s patients, caregivers, and healthcare professionals. Their weekly regular posts include talking tuesday, wacky wednesday, thursday thoughts, formal fridays.
  5. Michael J Fox Foundation “Fox Feed” – https://www.michaeljfox.org/foundation/news.html. Up-to-date research and foundation news from MJFF, who is dedicated to finding a cure and improved therapies for those living with Parkinson’s today.

Again, this is just a sample of the Parkinson’s blogging out there! So, check these out and add them to your RSS feed and sign up for their updates via email!

… AND did I miss any of your favourites??  I’d love to know what Parkinson’s blogs you read! Let me know in the comments below. much love.

Research to real-life: The voice of Parkinson’s

Today I wanted to introduce an idea… that YOUR VOICE can help detect Parkinson’s. There are a few projects underway…
1. The Parkinson’s Voice Initiative was started by Max Little. He and his team developed a cheap and simple tool that uses precise voice analysis software to detect Parkinson’s with 99 percent accuracy. That means a simple phone call can help detect if there are subtle tremors in your voice, indicating Parkinson’s.
The idea behind Max’s study is to collect recordings from people in all different circumstances and test the ability to detect if they accurately have Parkinson’s or not…
Participants call in and tell the answering machine whether they can been diagnosed with Parkinson’s or not… then you proceed to open up and say “AHHHHH“. The vocal tremor is picked up with an algorithm.
2. Also, Shrivastav and MSU’s Department of Communicative Science and Disorders monitor patients speech patterns – specifically, movement patterns of the tongue and jaw – to track the progression of Parkinson’s. “In Parkinson’s disease, a common limitation is that the movements become slow and have a reduced range. We believe we see this pattern in speech too – the tongue doesn’t move as far as it should, doesn’t move as quickly as it should and produces subtle changes in speech patterns.” www.sciencecodex.com/new_method_helps_target_parkinsons_disease-102475 ; psychcentral.com/news/2012/11/24/can-parkinsons-be-diagnosed-in-2-seconds/48099.html
… Early detection of Parkinson’s with only a telephone? Even Michael J Fox thinks it’s a good idea! much love.