https://www.michaeljfox.org/foundation/news-detail.php?stem-cells-safe-in-pre-clinical-parkinson-disease-study I’ll quote from the update, dated August, 2017: Currently, there are no approved or accepted stem cell treatments for Parkinson's disease, and so, The Michael J. Fox Foundation urges people with PD to view so-called clinics offering stem cell therapies for PD with 'buyer beware' skepticism.
There are new stem cell study results related to PD coming out all the time, but almost all are in petri dishes or in animals.
That means if somebody is promising treatment using stem cells, you should look at their claims long and hard. If they say it is a clinical trial, but then want you to pay big bucks, then you need to ask a whole lot of questions, and probably want to grab your wallet and run. Genuine clinical trials don’t cost you anything.
I looked up stem cell research trials on ClinicalTrial.gov. Legitimate stem cell research is still carefully trying to see if the therapy is effective – and safe. For example, studies at major medical centers use only 4 or 12 patients to check for safety of stem cell therapy – they want to risk as few people as possible. So why would a non-university center take any warm body older than 16 (yes – age 16), for doing a “study” of 3,000 patients. The non-university (read for-profit) center has a very interesting page on their website: ... [We] are not offering stem cell therapy as a cure for any condition, disease, or injury. No statements or implied treatments on this website have been evaluated or approved by the FDA. They want your money, but what they are offering is not a cure. Hmmm.
Further, the for-profit clinic is offering patient funded research. In a real clinical trial, treatment costs nothing for the people who participate. Like I said: You probably want to run. Legit studies are still finding out of the treatment is safe.
Remember that inclusion in the government clinical trial database does not mean it’s been okayed by the government. In fact, Clinical Trials.gov states: Listing a study on this site does not mean it has been evaluated by the U.S. Federal Government. The safety and scientific validity of a study listed on ClinicalTrials.gov is the responsibility of the study sponsor and investigators.
This just in: the FDA has issued a Warning Letter to American CryoStem, the manufacturer of stem cells used by for-profit clinics to "treat" PD and other conditions. The FDA said these stem cells are a drug being marketed without benefit of FDA approval. Further - and this is really scary - the FDA found "evidence of significant deviations from current good manufacturing practice requirements... such as potentially being contaminated with microorganisms or having other serious product quality defects. Specific deviations included unvalidated processes, an inadequately controlled environment, lack of control of components used in production, and a lack of sufficient and validated product testing." So the company isn't checking thoroughly to make sure the cells aren't contaminated, among many other basic controls. These are cells that the clinics want to put in your brain. For further information, see: https://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm591371.htm
Stem cells might be wonderful, and some very gifted researchers are working hard to find out how stem cells work, how stem cells can be used to treat PD, and if they are safe. But our wanting this to be the answer doesn't make it the answer.
God knows that we want a magic pill but the closest thing we have so far is exercise.
Image from Pixabay.
Monday, January 22, 2018
Monday, January 15, 2018
Should I be involved in clinical trials? What about my family – they don’t have PD but they’d like to help. What if I don’t want to give up the meds that I’m already taking?
Guess what? Everybody who is an adult and can give “informed consent” can be involved in a clinical trial – PWP (people with Parkinson’s), family and friends, PWP who aren’t taking meds, PWP who are taking meds, PWP who aren’t sure they want to try a brand new drug for safety reasons, PWP who want to test new treatments on themselves. Not every clinical trial is appropriate for every person, but if you want, you can find a way to be a part of research into the causes of PD, improved living with PD, prevention of PD, slowing or reversal of progression, and someday... a cure or cures.
What exactly is a clinical trial? Here’s Clinical Trial 101 from Michael J. Fox Foundation, probably the most aggressive PD research funder: https://foxtrialfinder.michaeljfox.org/understanding-clinical-trials/clinical-trials-101/
New treatments, including new medicines, are not possible without clinical trials; some kinds of clinical trials demonstrate whether something done in the laboratory can be done in humans – safely and successfully.
Here's a description of research results for 2017 that includes clinical trials: https://www.michaeljfox.org/foundation/news-detail.php?closer-to-cure-download-our-2017-research-year-in-review
Not all clinical trials are testing new treatments; some are observation – surveys, telemedicine (can you treat PD from a computer-to-computer session similar to Skype?), keyboarding software (Tappy) that tracks the way you type by looking for patterns that can help diagnose PD and its progression. For these kind of studies you don’t have to travel.
Other clinical trials require you to go to a specific medical center (you decide what’s too far for you to travel), to go a certain number of times a year for examinations, tests of what you can do, maybe blood or spinal puncture tests, maybe imaging tests. Informed consent means that you are told what you might get out of it, and any risks. You decide if you want to participate, if any risks are acceptable to you; some studies require blood draw or spinal fluid tap, but there may be imaging studies that insurance wouldn’t cover, or the chance to try a new drug. Sometimes what are called “healthy controls” are needed – people without PD – which is one of the ways family and friends can help.
One observational study that everyone can participate in is Fox Insight, “an online clinical study where people with Parkinson's disease and their loved ones share information that could transform the search for better treatments.” You enter lots of information and answer surveys every 90 days. Your personal identifiers are separated from the data and then it can be used by researchers. If you have 30-60 minutes four times a year to answer questions online... https://foxinsight.michaeljfox.org/
Another observational study is the Brain Health Registry, which is looking into PD, Alzheimer's, and other brain disorders at http://www.brainhealthregistry.org/how-it-works This works similar to the Fox Insight study. I participate in both these studies.
Where can you find out about Clinical Trials? The following are three possible websites you might want to look into.
- https://foxtrialfinder.michaeljfox.org/ This website focuses on PD. I’ve found the information clear, and you can contact researchers directly via FoxTrialFinder. You also receive periodic emails about new trials that might interest you.
- https://www.clinicaltrials.gov/ This website is not restricted to just PD. While the US government maintains this database, the government has not evaluated the studies. In fact, a few listings are not really clinical trials at all – the company hopes that you will pay for them to experiment on you. A real clinical trial is careful to limit those who participate to those who fit very narrow parameters, so the scientists can see clearly what is related to the results. Even more important, in a real clinical trial, all tests are paid for by the trial, not by you. “Patient-funded research” is aimed at profit, not at genuine research. (I will be writing about stem cell “research” like this in a future post.)
- http://www.centerwatch.com/ Information here doesn’t seem to be as detailed as on the previous two websites. You have to contact the researchers for more information, but you can do that directly from this website, which is also not restricted to PD.
In all cases, you decide if you want to participate.
Image from Pixabay.
Monday, January 8, 2018
One of the difficulties, ironically, is that there are so many Parkinson’s organizations. Even if you just look at the national organizations, the internet seems littered with them! (See Who the heck are all these organizations?) Both among PWP (people with Parkinson’s) and their loving caregivers, there is a great desire to help other PWP. Many of these organizations have good information, but some are better organized and more focused than others.
I’ve found a few resources that are particularly helpful – and are not overwhelming.
For a great summary of some immediate questions you might have right after diagnosis, take a look at https://www.michaeljfox.org/understanding-parkinsons/i-have-got-what.php from the Michael J. Fox Foundation. (Yes, that Michael J. Fox, the actor with PD.)
Here’s basic information about what PD is, how it’s diagnosed, and symptoms: https://www.davisphinneyfoundation.org/parkinsons-101/ This comes from the Davis Phinney Foundation, set up by an Olympic athlete with PD.
The Davis Phinney Foundation focuses on living the best life that you can with PD. They’ve published a really helpful (and free) book which includes what you need to know about PD, what to do after diagnosis, young onset issues, exercise, diet and nutrition, emotional health, complementary therapies, medication, surgical therapies, care partners/children/family, and many worksheets/self-assessments/how to prepare for medical appointments and much more. This is really useful: Every Victory Counts, at https://www.davisphinneyfoundation.org/resources/every-victory-counts-2017/ You can order the book to be shipped to you, or you can download it to your e-reader/computer. Since I found the e-reader print a bit small, and since I like being able to dog-ear pages, write marginal notes, and flip around the book, I prefer the paper version.
When you start discussing possible treatments with your doctor, it’s good to know what specific drugs are for, as well as their common side effects. This information about conventional treatments, from the Parkinson Foundation, is helpful: http://www.parkinson.org/Understanding-Parkinsons/Treatment However, this may not be the place to learn about what are called “alternative” or “complementary” therapies, since this foundation limits itself to vitamins and nutritional supplements when discussing alternatives. As far as I can tell, “alternative” refers to treatments that avoid traditional medicine, while “complementary” refers to treatments used in addition to traditional medicine, but the terms are often used interchangeably.
For a solid review of complementary therapies, I’ve found a terrific book that deals with alternative/complementary therapies as well as conventional therapies. I especially like that research (or lack of it) is discussed in detail in Optimal Health with Parkinson’s Disease: A Guide to Integrating Lifestyle, Alternative and Conventional Medicine by Monique Giroux, MD. I really appreciate being treated as an intelligent person, able to make decisions for myself. Since exercise is emerging as a particularly effective therapy – not just to make symptoms easier to cope with, but to slow down and possibly reverse PD progression – it’s useful to see what other possibilities are available.
I read a lot of books after I was diagnosed, but I found that I needed to re-read them months later because I just couldn’t take it all in. You are adjusting to a huge permanent change in your life, so don’t be surprised if this happens to you, too. You’ve joined the group of PWP (people with Parkinson’s), and while that can initially be horrifying, you may well find that these become some of your favorite people. (Did you know that there is a Parkinson’s Personality? More on that another time.)
Image from Pixabay.com.
Tuesday, January 2, 2018
There are many organizations associated with PD. Here are the main ones in the US (many states and regions have their own organizations, too.)
APDA – “The American Parkinson Disease Association (APDA) is the largest grassroots network dedicated to finding Parkinson’s disease (PD) and works tirelessly to assist the more than 1 million Americans with PD live life to the fullest in the face of this chronic, neurological disorder. Founded in 1961, APDA has raised and invested more than $170 million to provide outstanding patient services and educational programs, elevate public awareness about the disease, and support research designed to unlock the mysteries of PD and ultimately put an end to this disease.” APDA has many local groups. https://www.apdaparkinson.org/
Parkinson’s Foundation – “The Parkinson’s Foundation makes life better for people with Parkinson’s disease by improving care and advancing research toward a cure. In everything we do, we build on the energy, experience and passion of our global Parkinson’s community.” The PF recently merged with Parkinson’s Disease Foundation. The PF has great discussion forums and basic information. http://parkinson.org/
Davis Phinney Foundation – “We help people with Parkinson’s live well today. We provide essential information, practical tools and inspiration to people living with Parkinson’s. We fund early phase, innovative research that focuses on exercise, speech, movement and other factors that affect quality of life. Founded by an athlete who has PD, this foundation focuses on helping PWP live well with PD. https://www.davisphinneyfoundation.org
Michael J. Fox Foundation for Parkinson’s Research – “The Michael J. Fox Foundation is dedicated to finding a cure for Parkinson’s disease through an aggressively funded research agenda and to ensuring the development of improved therapies for those living with Parkinson’s today.” Besides an aggressive program of research funding, MJFF provides current information about PD and research, as well as information about clinical trials. https://www.michaeljfox.org/ and https://foxtrialfinder.michaeljfox.org/
There are international Parkinson’s organizations, many of them. One is:
World Parkinson Coalition - The World Parkinson Coalition "provides the only international forum on Parkinson's disease that invites all stakeholders to learn about the latest scientific discoveries, medical practices, and care initiatives that improve the lives of people living with Parkinson's disease. By bringing the full Parkinson's community together, including people living with Parkinson's, we hope to expedite the discovery of new treatments for this devastating disease until a cure is found." http://www.worldpdcoalition.org/ For a list of many international PD organizations, see http://www.worldpdcoalition.org/?page=Partners. Some of these have discussion forums.
Most if not all have email newsletters with interesting information.
Many PWP, caregivers, families, and friends are active with one or more of these organizations, some educating people about PD, some running and/or participating in support groups, some participating in fund-raising. We all have different interests, abilities, and available energy. For now, be aware that there are many organizations out there who want to help.
Monday, December 25, 2017
Want to hear about the latest PD research news?
Two places that have regular updates are at:
https://www.michaeljfox.org/foundation/news.html You can sign up for email updates there.
https://parkinsonsnewstoday.com/ These come at least weekly. You can sign up for email updates here, too; scroll down to find it.
If you are curious about a particular topic, the US government maintains a free database of medical research articles, called PubMed.
You can search on a topic and it will give you basic information about published medical research papers (title of the paper, journal it was published in, date published, author names), with the most recent articles first. You want to narrow your topic, because a search just on “parkinson’s disease” yields more than 95,000 articles. If you narrow the topic to something like “parkinson’s disease industrial exposure” the numbers are much less, and you can quickly look through the titles to see if you want to read about any studies.
If you click on the article title, it’s linked to the abstract, a short description of the work and results.
From the abstract, there is sometimes a link to the full paper. Sometimes the full paper is free, but many times it’s not.
You can email the abstract to yourself, and can email the list of papers, called a summary, to yourself.
Some articles are in PubMed right at the publication date, whereas others are not. If you'd heard about the research, but it's not in PubMed yet, try Googling the journal, which may have the abstract available from their website.
The terminology can be dense, but the articles can be interesting. Definitely useful for answering the question, “What does the research say?” Helpful also when somebody is sure they know that something is a sure “cure.”
Sunday, December 24, 2017
While in person support groups are great, they often meet only monthly. How do you get your questions answered, hear a PD joke, or get in touch with somebody who understands your challenges and worries? How do you stop feeling all alone? That’s where online support comes in.
Privacy and security vary, but you probably have to assume that whatever forum you’re on is not all that private. Generally you’ll have to register, and select a name to use (you get some privacy by entering a pseudonym). I suggest you read everything you can about the website so you know what to expect. Generally you are expected to be courteous, and not to try to sell anything.
But fair warning: these support groups can be time sinks. If my Fitbit didn’t buzz every hour, reminding me to get up and move, I could stay on support groups all day.
Here are a number of online support forums you may want to explore.
http://forum.parkinson.org/ from the Parkinson Foundation has different forums (such as Newly Diagnosed, DBS(Deep Brain Stimulation), Young Onset, Caregivers, Open Forum, Ask the Doctor) which you can read, search, and post to.
https://www.myparkinsonsteam.com allows you to ask questions, make connections, and search for others in your general geographical area.
https://www.patientslikeme.com/ collects and constantly updates physical condition, and treatments you’ve tried for a variety of ailments. I found the constant requests for more information off-putting, and nothing seems to be private. Part of the idea is to have a large group of people sharing detailed info, apparently to be used for research. There are forums for asking questions, too. I decided this wasn’t for me, but you may love it.
Facebook has a number of support groups, often closed groups (membership is limited, and posts you make there should not show in your personal timeline). Facebook groups often post something about their focus, and what they want to avoid (no photos of cats or grandchildren, for example). Facebook groups include:
§ https://www.facebook.com/groups/pd.fighters.united/?fref=nf PDFU Parkinson’s Disease Fighters United
§ https://www.facebook.com/groups/1420381321604545/ Parkinson’s Alternatives Healing
§ https://www.facebook.com/groups/YOPD1/ Young Onset PD
There are other PD forums that don’t have that many posts yet. For example, https://www.smartpatients.com was set up with APDA (American PD Association) in 2017, and it doesn’t have a huge number of members yet, but the conversations have been very interesting. Another with few posts so far is https://parkinsonsdisease.net/forums/
Besides the forum for caregivers at http://forum.parkinson.org/ there are also caregivers’ forums at https://myparkinsons.org/ and at https://www.caring.com/support-groups/parkinsons. Caregiving presents plenty of challenges; caregivers need a place to share, too.
Another group of people with specialized support needs is people with certain Parkinsonisms and related brain problems – PSP (progressive supranuclear palsy), CBD (corticobasal degeneration), MSA (multiple system atrophy), FTD (frontotemporal dementia), CTE (chronic traumatic encephalopathy), and ALS (Amyotrophic Lateral Sclerosis). https://www.psp.org maintains an extensive website with information, support groups (some in person, most online, since the numbers of patients are small), clinical trials, and more. Online support groups here seem to be scheduled monthly discussions, not forums that you can drop into at any time.
Facebook has all sorts of groups that deal with specific conditions. For example, there’s a Dystonia group (dystonia can be a movement disorder all on its own, or can be experienced as part of PD). https://www.facebook.com/groups/dmrf.gen/
You can search on Facebook for your particular interest by using the Facebook search bar at the top left.
So there are many possibilities. Get exploring, but then get up and exercise!
Wednesday, December 20, 2017
Everybody tells you that you need to exercise when you have PD. But which exercise is effective, and who has a class near me?
In terms of effectiveness, there was just a clinical trial on exercise published December 2017! Splitting newly diagnosed PWP (People With Parkinson's) who were not taking any meds into three groups, they found measurable reduction in progression of PD symptoms in the group that participated in vigorous exercise (in this case on a treadmill), there was less improvement in the moderate exercise group, and none in the no-exercise group. Now, researchers are saying they need to see which type of exercise is better, if there is one that stands out.
Meanwhile, back at the ranch, what should you do? Check with your doctor (in fact, many programs need a doctor’s signature), then look into programs like the following. What’s available locally varies enormously but there are often choices. (Hint: you don’t have to choose just one.)
Rock Steady Boxing (my personal favorite – so much fun, and has definitely improved some of my symptoms). This is non-contact boxing – you don’t hit anyone – but you will work your body and mind vigorously, challenge yourself, and be challenged by the coaches, volunteers, and other PWP – all of them a special group of people. The camaraderie and support are amazing. I go without fail three times a week – and it is the best part of my week. Select your state, or international location, and see if there is a program near you. https://www.rocksteadyboxing.org/find-a-class/
Dance for PD. The organization has classes around the world. To find a class, click here (first you‘ll need to click on your country) http://danceforparkinsons.org/find-a-class/class-locations
Delay the Disease. I do this program at the local Y. It’s not as vigorous as boxing, but is good for balance, mobility, and stretching, all of which are important with PD. Another collegial group, a place for questions, and definitely a place where people will understand you. To find a local program, click on http://www.delaythedisease.com/for-people-with-parkinsons/dtd-exercise-classes/ and enter your zip code in the search bar, or phone 614-566-1189...
Local Parkinson’s groups often collect information about available local programs. For example, Parkinson Association of the Rockies https://www.parkinsonrockies.org/programs-services/exercise-classes
The APDA (American Parkinson’s Disease Association) has information about many exercise programs in states where they’re located. Go to https://www.apdaparkinson.org/community/ Enter your zipcode or state. You’ll see something like this:
Then click on Resources and Support, and then on Exercise Groups to get a list:
How does free fitness classes sound? With the Silver Sneakers program, for people 65 and up, you can check your eligibility right on their website: https://www.silversneakers.com/ Then you can find fitness centers/gyms that participate. I attended a terrific series of classes while visiting family – they focused on balance, coordination, cardio, and besides the coaches, had volunteers helping, and gave me helpful suggestions and a chair to hold onto. Some gyms have special programs for seniors already, but because of the extra training involved for coaches, special PD programs may still cost something.
A phone call to the local senior center can help you discover classes at the senior center, and also gym programs locally. I know you’re cringing if you have Young Onset PD, but the person on the other end of the call doesn’t know how old you are, and seniors have a lot of contacts.
Try your local library, too.
You can also call the Parkinson’s Foundation Helpline at toll-free Helpline at 1-800-4PD-INFO. Their Spanish Helpline is at the same number.
There are a lot of choices, so what to do? Besides talking about exercise options with their doctor (don't skip this step), a lot of PWP find exercise programs in their area. Then they watch a class (or classes), talk to the coaches and participants. They may also have a chance to participate in a class.
Often, a doctor’s signature is needed for participation in a PD exercise program, but that doesn’t have to mean waiting for your next appointment. When I needed my doctor’s okay, I didn’t wait for an appointment, I phoned the office to find out the procedure there, then mailed the form to the doctor with a self-addressed stamped envelope. And my neurologist sent it back fast knowing how vital exercise is.
You might find a class that caters to a general audience (Tai Chi or Yoga, for example), not to PWP, so you need to discuss it with the teacher, be aware of your own limitations, and don’t do something if it hurts. Check with your doctor, too.
If you can’t go to a class, or prefer not to, you can still exercise at home (though you might want a family member or friend to spot you). Check with your doctor, who is thinking of you avoiding injury, but who also may suggest a good resource.
Books/DVDs, streaming classes, exercise programs designed for PWP include:
- PWR! Moves https://www.pwr4life.org/moves/ (there are local classes in some Western states, too.)
- Downloadable video (free) https://www.davisphinneyfoundation.org/resources/parkinsons-exercise-essentials/
- Streaming exercise class, Daily Dose: https://theparkinsonsfitnessproject.com/services/
- Dance for PD DVD/CD/Downloads https://danceforparkinsons.org/at-home-dvd
- Delay the Disease has a book and DVD, second edition issued in 2017. https://www.amazon.com/Delay-Disease-Exercise-Parkinsons-Disease-2nd/dp/0999108107/
Physical Therapy is another great source for very individualized exercise, but that’s a topic for another article.
A word about stem cell clinical trials. Here’s a research update on stem cells, one of many promising avenues in PD research: https://www...
Everybody tells you that you need to exercise when you have PD. But which exercise is effective, and who has a class near ...
While in person support groups are great, they often meet only monthly. How do you get your questions answered, hear a PD joke, or get i...
One of the hardest things was finding a support group close to me. I was desperate to talk to somebody else who was going through this...