There are many resources available to people with Parkinson’s (PwP) who want to participate in clinical trials. These trials are necessary to establish safety and efficacy of medicinal or physical interventions. Trying to match clinical trials with participants can be tricky since there are certain criteria which need to be met to be deemed an appropriate candidate. From the perspective of the willing participant, location and convenience is typically important or necessary. In attempt to facilitate this process, the Michael J Fox foundation has developed a very user friendly website to help match the participants with the trials. Their web site is www.foxtrialfinder.com
Other websites regarding clinical trials for PwP are:
I am excited to announce my newly published book, ” How To Live Well With Parkinson’s: Advice From a Physical Therapist”. It is intended for the person who has Parkinson’s and their Caregiver. Physical therapists can also benefit from this book since it is filled with interventions specific for this population. There are over 200 illustrations. Click on book cover to see more details on Amazon. Table of Contents below.
Chapter 1 “I have PD – Now Who is in Charge of What?”
Chapter 2 Exercising With Purpose
Chapter 3 The Bed Challenge – Is it You or the Bed (or both)?
Chapter 4 Chairs – Sitting is the Easy Part.
Chapter 5 Walking Problems and Remedies
Chapter 6 Walkers/Rollators: Choosing and Using Them
Chapter 7 Balancing Act – Tips On Staying Balanced
Chapter 8 Caregivers Corner
Appendix – Helpful devices
As a physical therapist, I am always searching for ways to ensure my patients receive the most effective interventions which are targeting their individual needs. A recent research article published in 2012 discusses benefits from various interventions: ‘Physiotherapy Intervention in Parkinson’s disease: systematic review and meta-analysis’ (click on the title, once you are on the website you can download the full article for free). This type of research article can save clinicians time since it reviews a number of relevent research studies and synthesizes outcomes. Categories of interventions were: physiotherapy (gait and balance, hands-on techniques and education regarding body mechanics with transfers, posture and physical fitness), exercise, treadmill, cueing, dance (tango, waltz and foxtrot) and martial arts (tai chi,qigong). Listed are outcomes established from these various interventions:
1) Improved gait velocity (increased stride length)
2) No change in cadence (cadence tends to be preserved in people with Parkinson’s (PwP))
3) No change in balance confidence (Activity Specific Balance Confidence Scale – ABC; Falls Efficacy Scale)
4) Fall reduction
5) Significant improvements in the Unified Parkinson’s Disease Rating Scale (UPDRS) – subscore for activities of daily living
6) No change in the mobility section of the Parkinson’s Disease Quality of Life Questionnaire (PDQ-39)
7) There was no difference reported between type of physical therapy intervention and outcome.
As you can see, there are a variety of interventions to accommodate a wide spectrum of motor problems experienced by PwP. It is important to recognize the individual needs of PwP and apply interventions accordingly. It has been my experience that unless we educate our patients to continue to practice what was learning in therapy including staying active and exercising/walking, benefits will be lost.
Dual tasking is doing more than one thing at a time. People with Parkinson’s (PwP) often have greater difficulty doing 2 things at the same time. This is in part due to the increased concentration required to perform activities. Disruptions with walking when dual tasking is often used as an example due to potential fall risk involved.
Over the years I have focused interventions on redirecting primary focus on gait with less attention to the secondary task. Patient education regarding increased attention demands on gait helps the individual understand the need for redirected focus. Also, educating PwP to place balance as a priority over the task at hand can be helpful for self-management with balance control. Conditioning exercises and gait training utilizing compensatory strategies to maximize stride length can prepare individuals when there are more distractions. I have found benefits in this comprehensive approach.
Only occasionally have I attempted dual task training with individuals with mild PD : walking + cognitive task or walking + manual or walking + manual + cognitive. I have observed either short term or no improvements but have to admit that perhaps not enough time was spent on these activities (4 sessions for 30 minutes).
I have often wondered if I should work more on dual tasking to prepare an individual for the real world but have felt it would require an inordinate number of treatment sessions to become successful. Dual tasking, I find also requires an individual to have the capability or capacity to learn to filter distractions. So, would exposing an individual to numerous distractions help to desensitize and improve focus in dual tasking conditions? If this is so, I would think community Parkinson’s classes could help an individual in this area more economically. Community classes can be ongoing and definitely distracting! Two community based exercise programs which come to mind which specialize in PD and comprehensively address the needs of PwP are:
1. The PWR (Parkinson’s Wellness Recovery) Exercise classes – founded by Becky Farley PT, PhD . Dr Farley is currently doing work in dual task function in early PD. http://www.pwrgym.org/
2. Delay the Disease http://delaythedisease.com/
It appears there are various sources which are currently investigating interventions and outcomes in the area of dual tasking. I look forward to the completion of these studies!
Recently discovered a website which has a comprehensive listing of tests to measure the status of our patients. It shows the name of the test, how long it takes to perform a particular test, diagnoses appropriate for a particular test. It links you to the instructions of the test and any useful information you need to know. I have added the link to this website for physical therapists. click on outcome measures. Or, you can click here. It also has definitions of statistical terms – bonus!
Getting out of a car is typically harder than getting out of a chair for 2 reasons. First, the car seat slops back and you have to scoot up hill just to swing your legs out. Second, the rim of the car is blocking your feet from sliding back so you can stand up. Here are some options:
A wedge seat cushion can help to level out the slope. Choosing a cushion with a vinyl type of fabric and a dense foam to make sliding in and out easier. Avoid memory foam since it will make scooting more difficult. Sitting higher will also make it easier to stand up unless you have a vehicle with high seating.
I recently found an ideal wedge cushion made with a dense foam and vinyl cover. It’s called a ‘Slant cushion’ by Duro Med Industries item # 513-8062-0323. It is hard to find this cushion in a store but can be ordered through Briggs 1-800-247-2343. It’s about $25.00.
Another device is called the ‘handybar’ which is a handle that slides into the latch of the car door and can be used like an ‘arm rest’ when getting out of the car. Take a look at the link under transfer devices for the handybar to see a video demonstration.
Initially when recommending an orthotic for someone with a drop head syndrome I had mentioned the MND (motor neuron disease) oxford collar click here. Since then I have found 2 other options. One of them is called the ‘Headmaster collar’ from Symmetric designs which was recommended by another physical therapist but the person should make sure to get the right size. Click here for information and sizing. You can get the various sizes through Amazon. The last support system is called a baseball cap orthosis. Briefly, it is a baseball cap with a strap attached to the back of it and anchored to a chest strap.
The reference article for this device is:
Fast, A. and M. A. Thomas (2008). “The “baseball cap orthosis”: a simple solution for dropped head syndrome.” Am J Phys Med Rehabil 87(1): 71-3.
The APDA Information & Referral Centers can offer a wealth of information regarding Parkinson’s, symptoms, where to locate doctors who specialize in Parkinson’s, where to find exercise classes and support groups. They help with any questions you may have and if they don’t have an answer they can guide you to resources who can help you. The APDA Midwest Chapter keeps a listing of exercise classes and support groups in the Illinois and NW Indiana area. You can access this information through the link APDA Illinois on this page or calling 800-223-9776.
A universal problem with walking in PwP is a reduction in stride length. One way to improve this problem is walking to music but the music should have a ‘walking rhythm’ so it can be easy to follow. Music uses different parts of the brain to compensate for deficiencies which allows for longer steps with less effort. Music is also used in dance classes for PwP in a similar manner to improve general movement, weight shifting and last but not least a sense of well being. You could almost think of music as a ‘medicine’ to help you move. It makes E-X-E-R-C-I-S-E more fun! Click here to see a clip on a dance class.
Last month I listed various resources to find physical therapists. There is an additional resource you can call or email. Below is an excerpt explaining this resource center which a partnership between Boston University and the APDA (American Parkinson’s Disease Association) and led to the establishment of this Center.
“Boston University’s Center for Neurorehabilitation has partnered with the American Parkinson’s Disease Association to establish the first-of-its-kind National Resource Center for Rehabilitation of people with Parkinson’s Disease. This National Resource Center is directed by Terry Ellis, PT, PhD, NCS. The center’s toll-free “helpline” allows the caller to speak with a licensed physical therapist who can answer questions about exercise, provide information about programs in the caller’s area and provide educational materials. In just nine short months, more than 500 people with Parkinson’s disease, their family members and health care professionals from across the United States have called 1-888-606-1688 and received free recommendations on exercise from the leaders of one of America’s renowned centers on rehabilitation.
In addition to the helpline, click here to find out their hours or directly email for information.
The center’s Web site can be reached by going to the APDA site’s home page, click here