Physical Therapy and PSP/ CBD Every step of the way – by Lucy Lotz DPT and Alexander Dien DPT

Editor’s Note:  These are brief notes from Elizabeth Wong about what she got out of the presentation and what she learned from the Q&A. Following the summary are more detailed notes, in case you are interested in reading further!

Physical therapy is crucial for individuals with PSP and CBD to maintain mobility and quality of life. These movement experts create personalized exercise programs that address your specific needs and goals, focusing on early intervention to prevent falls and maintain independence. PTs utilize techniques like external cues, such as metronomes or lines on the floor, to improve gait and reduce freezing. A well-rounded exercise plan includes cardiovascular activities, strength training, balance exercises, and task-specific practice like getting up from a chair. Remember to stay active throughout the day by incorporating movement into your routine, like standing during TV commercials or taking a walk after using the bathroom. Regular check-ups with your PT, similar to dental check-ups, are important to adjust your program as your needs change. Explore various exercise options like Tai Chi, boxing, and dancing, and utilize online resources. A PT can help you find a way to exercise that is joyful for you. Track your progress with a step tracker or the iPhone "Health" app. Even with declining mobility, PTs can offer support through passive exercises, caregiver training, and adaptive equipment. Don't give up! Exercise is neuroprotective and can help you maintain your independence and quality of life.

“Physical Therapy and PSP/CBD: Every step of the way”

Presented during Progressive Supranuclear Palsy / Corticobasal Degeneration Symposium 

Speakers: Ana Lucia Lotz, PT, DPT UCSF and Alexander Dien, PT, DPT UCSF

Symposium Host: Brain Support Network and Stanford Movement Disorder Clinic

Symposium Date: June 29, 2024

Summary by: Elizabeth Wong, Stanford Parkinson’s Community Outreach

What is Physical Therapy?

Physical therapists (PTs) are licensed healthcare professionals that specialize in movement. A Doctor of Physical Therapy (DPT) has a doctorate degree and specializes in movement. PTs may become a board-certified specialist in a specific practice area. Neurological PT specialists have advanced training in neurological conditions.

Physical therapy can be beneficial for various reasons, including mobility, balance, falls prevention, and overall function. It's important to have a multidisciplinary team that include PTs, occupational therapists (OTs), and speech language pathologists (SLPs).

• PTs help you get from point A to point B. 
• OTs help you do the things when you are there. 
• SLPs help you express yourself and swallow safely.

Physical Therapy Assessment includes assessment of strength, balance, and walking. Evidence based standardized tests are used to help identify things like fall risk and predict outcomes. Physical therapists have in-depth conversations with the patient on what’s important to them, what brings them joy, and what specific things are challenging. They collaborate with the patient to develop a personalized plan of care and planning for the future.

How can physical therapy help? Everyone needs exercise, and exercise is essential for maintaining strength and cardiovascular health. Everyone loses strength as we age. For those with PSP and CBD, early in diagnosis, PT is important to prevent things like falls. As disease progresses, the PT on the team is there to help the patient compensate for deficits and help the patient maximize their potential and improve their day to day life.  PT can address issues like falls, postural instability, extension of the truck and legs, stiffness, gait problems, difficulty turning, shuffling, freezing, and slowness of movement.

Depending on what the movement issues are, goals of PT could include reducing the number of falls, improving balance, enhancing walking ability, and maximizing functional mobility and quality of life.

Specific Strategies for PSP and CBD

Research has shown that using external focus or external cues can help with movement. Sometimes people will describe a disconnect between brain and body where their legs are not moving the way their brain is telling them to move. There are strategies that can be implemented early on in the diagnosis that the PT can teach, so the techniques of external cues are learned and can be helpful throughout diagnosis. Examples of external cues include use of metronome, music, and  lines on the floor to improve gait and reduce freezing (such as taped lines in kitchen one foot apart). Stretching can be used to address stiffness. Functional training can be used to focus on activities that are meaningful to the individual.

Exercise Recommendations

• Cardiovascular exercise/endurance to make sure you have the energy to get from point to point. This can be activities like walking, dancing, etc.
• Resistance training focuses on strength to make sure you are strong enough to do the things you want to do. This could be exercises with weights, resistance bands, or bodyweight exercises.
• Task-specific training is doing exercises that relate to real life, such as practicing real-life activities like getting up from a chair, stepping over obstacles, etc.
• Balance training is important because you need balance to stay up or sit in a chair.

General Exercise Tips

• Go on a walk with family and friends, don’t worry about distance or time, but have fun and enjoy yourself. Walking helps with balance, it is task specific, it can be good cardiovascular exercise and as a bonus, you are in nature and walking with others helps with socialization.
• If you have access to a gym or machines, you can do weight training on seated exercise machines. Weight training can make you tired, but it’s not meant to be done every day. The goal of weight training is that you have the strength to do the things that are valuable for you in everyday life.
• Functional training is task specific, and can be like practicing getting up from a chair, practicing getting up from floor, scooting forward in bed, practicing rolling over in bed, and doing bridges.
• Tai Chi includes slow breathing with controlled movement, it helps with coordination, and there is a social aspect of practicing movements with others to maintain specific rhythm. There are variations of Tai Chi where it can be done sitting as well as standing.
• Boxing works on power, balance, cardiovascular endurance, flexibility, pivot and turning, and dual tasking.
• Dancing can help with balance and cardiovascular health.
• There are lots of opportunities and different ways to exercise. PT can help you come up with more specific guidelines and recommendations on what you should be doing and recommendations. Anything can be considered exercise if you push yourself. If you don’t move, you are going to get weaker.
• Start wherever you are and gradually increase activity.
  • Move more, sit less.
  • Before getting out of bed, move and stretch.
  • Stand and sit between Netflix episodes.
  • Take a lap around after getting up to use the bathroom.
  • Stand and clench your legs once every second while using the microwave.
  • Play tug of war with your dog.
  • Toss bean a bag.
• Incorporate movement into daily routines.
• Consider group classes or online programs.
  • YouTube “sit and be fit.”
  • www.borp.org for online classes and programs with those with disabilities.
  • Always Active (www.alwaysactive.org) is an online program for older adults with balance issues, there are sitting and standing classes.

• Track your activity levels, because unless you keep track of how active you are, it doesn’t always add up to what you think you are doing. Can use things like step trackers, timing yourself, heart rate monitors, or iPhone “health” app.

The Dental Model is recommended for PT. This model would include ongoing check-ins like dental checkups. PT should be an ongoing process with periodic reassessments every 6 months to a year and adjust the exercise program and goals. PT should be goal-oriented and focused on achieving specific goals, such as walking further or managing stairs. Lastly, transition to maintenance therapy with less frequent check-ins is important once goals are met.

Just like the dental program, exercise can be tedious just like brushing your teeth. A physical therapist’s goal is to help you help yourself as much as they can within an hour or two hours a week during the session but a physical therapist wants to teach you those habits and help you learn what you can do at home. The real change happens when we can start to identify those habits and then make improvements.

Make a plan

• Find an exercise program that works for you.
• Get outside help to continue with the program after PT.
• Talk to PT about coming back for checkup in 6 months, especially if after hospitalization or having more falls.
• Finding a Physical Therapist who specializes in neurologic condition, search “neurologic clinical specialist” on choosept.com.

Q & A 

Q: What is the optimal amount of maintenance therapy?

A: It depends on your individual needs and goals. It could be a few sessions to check in and adjust exercises or a longer period to build a strong foundation.

Q: Have you seen hamstring problems in PSP or CBD?

A: Yes. Recommendations depend on the cause of the problem (strain, stiffness, weakness, etc.) so will need an exam to figure out what the issue is. Stretching, resting, strengthening, and learning to isolate the muscle are all possible approaches. If stiff then stretch, if strained then rest, if weak/co-contracted, then learn to isolate that muscle.

Q: Will physical therapy help in the long term, and should one ever give up?

A: Exercise is neuroprotective and can slow the progression of motor symptoms. It's important to maintain activity and have a physical therapist on your team for support.

Q: What kinds of exercises can be done if someone is wheelchair-bound?

A: Wheelchair push-ups (lifting butt up with hands on arm of chair and pushing up), scooting, leans, butt lifts, marching, kicking, and even adapted boxing exercises are possible.

Q: If someone can no longer move voluntarily, are there passive exercises that can be done?

A: Yes, gentle range of motion exercises can be done. Caregiver training is also important to help with stretching, transfers, and positioning.

Q: Does insurance like Medicare pay for physical therapy, and what happens when you run out of your prescription?

A: Medicare and other insurance providers typically require medical necessity for ongoing physical therapy. However, people with progressive diseases may be able to get assessments and recommendations even if continuous therapy is denied.

Q: What can be done to help people who lean in a chair?

A: Pillow support, positioning techniques, soft collars, and tilt-in-space chairs can be helpful.