Note that while the speaker's topic refers to PSP and CBD only, there's only one minor section that is disorder-specific.
CurePSP hosted a webinar last week (2/11/10) with an occupational therapist. Though the pace of the presentation was too fast (especially since I was trying to take notes), overall it contained useful information, particularly to newcomers. The Q&A was helpful for its range of questions from webinar participants. (A local support group member asked three questions!) Some helpful resources were provided throughout the webinar and in a list at the end of the presentation.
Here are my notes.
Christine Robertson, OTR/L
CurePSP Medical Advisory Committee
Primary OT at the Dan Aaron Parkinson's Rehabilitation Center in Philadelphia (at Penn Hospital)
LSVT BIG certified clinician
Contact info: email@example.com
Topic: Helpful Hints from Occupational Therapy for PSP/CBD/Related Disorders: How to Improve ADLs and Safety!
Goals of this webinar:
* describe how an OT can assist
* identify changes that lead to ADL dysfunction and decreased functional mobility
* provide adapted techniques
* suggest equipment
How can an OT help?
* assess functional mobility and ADL performance by talking to patient and family
* home safety assessments
* teach new and safer ways to perform activities
* train care-partners on how to safely assist
* recommend appropriate adaptive equipment for the home
Causes of ADL dysfunction [ADL = activities of daily living]
* rigidity/stiffness of muscles and joints
* gait dysfunction (shuffling, freezing)
* narrow base of support
* slowness of movement/reaction time
* decreased coordination
* visual changes
* alien limb
* decreased safety awareness
Using a bed rail to help with getting in and out of bed
* bed rail fits between mattress and box-spring
* assists with rolling and moving up and down
* not covered by insurance plans
* order through catalogues
* recommended website where you can purchase a bed rail: 1800wheelchair.com
Getting out of bed:
* bend up knees
* roll completely on side
* grab the bed rail or sturdy chair
* allow legs to drop off the side of the bed...
* while you push yourself up sideways
Bedroom safety tips:
* make sure floor is clutter-free (shoes, electrical cords, etc)
* have easy reach to light switches or bedside table lamp or night lights
* consider bedside commode or urinal to decrease trips to bathroom if this is a problem
* bed rails to assist with getting in/out of bed
* satin sheets or pillowcase under bottom to improve bed mobility or transfers
* cordless phone or cell phone at bedside in case of emergency
* in cooler months, use heavier PJs and lighter or fewer blankets
Bathroom safety tips:
* remove throw rugs that slide. (Only use rugs with nonskid surfaces on the back.)
* add grab bars where needed
* remove glass partitions in the shower/tub to make transfer in/out easier and safer
* add nonskid surface to floor of shower/tub (eg, rubber mat or nonskid strips/decals - her preference)
* use a shower bench/tub chair with a back to decrease risk of slipping, promote good posture and to conserve energy
* always sit as much as possible when bathing (eg, on shower bench or chair)
* install a hand-held shower head to eliminate all turns in the shower
* use a long-handled sponge to assist with safely bathing hard to reach areas
* use liquid soap or soap on a rope
* keep towels in close reach to dry as much as possible in a seated position or use a terry cloth robe to assist with absorbing moisture after bathing
* avoid extremely hot showers because this can cause dizziness/lightheadedness
Getting in and out of the bathtub safely:
* use tub bench or shower chair as this eliminates risk of losing balance, promotes good posture and conserves energy
* not covered by insurance plans
* order through catalogues
* recommended website where you can purchase a tub bench or shower chair: 1800wheelchair.com
* later comment by Janet Edmunson: one of her support group members recommends a tub transfer chair from Dr. Leonard's (phone 800/785-0880, drleonards.com)
Safety grab bars:
* purchase through medical supply companies, Home Depot, Lowe's, etc.
* lots of grab bars don't have a medical/rehab-look
* she's not comfortable recommending suction grab bars
Getting up from the toilet:
* three-in-one commode can be used at bedside, over the toilet, or in the shower stall
* place just the frame over the toilet to raise seat height and have hand rails
* adjustable height makes sitting and standing easier and safer
* covered by Medicare and most insurance plans with MD's prescription
Grooming tips to help with oral hygiene:
* tube squeezer. Available from Sammons Preston (sammonspreston.com). Easily squeezes tubes flat from the bottom up, making one-handed use possible. Works with toothpaste, lotions, salves, silicones, and other household products.
* Touch N Brush Toothpaste Dispenser. Available from Dr. Leonard's (drleonards.com)
* Water Pick's Oral irrigator: helps fight gingivitis
* Floss picks: pre-threaded; can be purchased many places (even grocery stores)
* consider switching to an electric tooth brush. Crest toothbrush can cost as little as $10 at Walmart.
Grooming tips to help with shaving:
* consider switching to an electric razor. This provides the patient with continued functional independence
Dressing safety tips:
* always dress as much as possible in a seated position to eliminate risk of falling/loss of balance. It's best to sit in a high firm back chair with armrests. Stand only when necessary!
* always dress your affected/most difficult side first
* use a long-handled reacher to assist with lower body dressing (eg, putting pants on)
* sometimes use of a sock aid can help with putting socks on independently depending on the patient
* use a long-handled shoe horn to decrease effort of putting shoes on
* use elastic shoe laces. Make shoes ready to be put on and removed without trying again.
Equipment to assist with fine motor dressing difficulties:
* use a button hook to assist with fastening buttons on shorts and blouses
* use Velcro button aids to replace regular buttons
* both items available at sammonspreston.com
Tips for walking safety:
* think conscious movement!
* slow down and concentrate!
* do one thing as a time (eg, never reach and walk)
* keep your hands free
* never carry something
* to avoid shuffling, walk with the heel hitting down first, not the toes
* be aware of changes in the floor surface by scanning the environment
* avoid stepping back; instead, move sideways or turn
* do not pivot to turn; instead, try a U-turn or military turn
* always go in the same direction as your walker
Tips for preventing falls at home:
* scan your environment
* watch out for pets, papers, cords, etc
* avoid throw rugs without rubber backing
* remove throw rugs on carpet
* rearrange furniture to allow for more space
* keep stairwells and doorways clutter-free and well-lit
* install handrails in trouble spots
Functional mobility safety tips:
* do not over reach! Get as close as possible to the object you are reaching for (eg, in cabinets, refrigerator, closet)
* always stand to the side of the refrigerator, dishwasher or stove when opening
* always lean on something stable (eg, the countertop) with one hand!
* place frequently used items in easy-to-reach places (between shoulder and waist height)
* consider using a microwave instead of the oven or stove
* be aware of water spills to decrease the risk of falling
* utilize counter space to slide dishes, pots and pans instead of lifting and carrying them
* if you are using a walker, use a walker bag/basket for safe item retrieval and transport
* arrange furniture in the home to facilitate safer mobility and to decrease obstacles
Movement technique to help reduce retropulsion (getting pulled backwards or falling backwards):
* stand to side of oven, dishwasher, fridge, and doors when opening them
* user "power stance" while performing activity
* steady self with one hand
Getting up from a chair:
* scoot to the edge of the chair
* separate feet to shoulder width
* position feet slightly behind the knees
* learn forward: "nose over toes"
* push up from armrests
* firm chair is better than cushy couch
Common eating deficits due to decrease in vertical eye gaze:
* difficulty seeing food on the plate and difficulty guiding utensils to the mouth
* care-partner needs to encourage: compensate for downward gaze impairments by cuing the person to move their head up and down during meals and by raising the height of the plate
* put elbows on the table. Anchor elbow on the table. Use arm as lever.
* bring food closer to the patient by increasing the height of their plate/bowl while supporting their elbow on the table
* build up the table surface with a bed tray, books, or a box. Decrease spills and frustration.
Compensatory techniques for eating due to tremor:
* use a nonskid mat or Dycem (nonslip plastic mats) to prevent plates from sliding
* Asian soup spoon (with a deep bowl) or any deep spoon
Assistive devices for eating:
* plate guard aids with scooping and keeping food on the plate
* adapted utensils with built-up handles, rocker knife, pizza cutter, and weighted
* non-spillable cups/thermos to reduce risk of spills and burns
* clothing protectors. Another option: cloth napkin attached around the neck by alligator clips and a chain (often used in dentist offices). Get different colors of cloth napkins to match shirts.
Handwriting compensation tips:
* consider the Pen Again for micrographia. Available from penagain.com
* lined paper to provide visual guidelines or cues
* large grip pen. Example: Bic XXL
* experiment with different types of pens. Examples: Pen Again, felt tip, flair or fine point
* avoid cursive writing, if this is difficult; instead, print and or use block letters
* take time to stretch the hand, given hand rigidity
* write slowly, take your time, concentrate and visualize what you want to write
* support arm on table (elbow to hands)
* think big strokes!
* conscious movement is the key to success!
* use a computer, if able. It's a good form of exercise. Be sure you have an ergonomic setup.
* consciously move your head up and down when reading to compensate for lack of eye movement. The care partner can remind the person to move his/her head up and down.
* book holders. Available from Staples, Office Depot, sammonspreston.com
* audio books
Computer-accessibility options, with Windows 7 (as an example):
* make font larger, magnifier option, change contrast
* keyboard shortcuts or filter keys
* narrator or screen reader option
* voice recognition option. (For older operating systems, consider Dragon Dictate software)
* search in "Help" for accessibility options
* if having trouble dialing the telephone, consider a large button phone (available from Radio Shack) or a cell phone (using the voice dialer option)
* has positive effects on sense of well being
* helps muscles to stay strong and joints to stay flexible, which can help improve function in ADLs, functional mobility, and balance
* examples: stretching/flexibility; relaxation (eg, yoga, massage, tai chi, meditation); conditioning/aerobic (stationary/recumbent bike, swimming, dancing, chair aerobics, walking)
* speak to your MD to be sure you have clearance to exercise
* see a PT or OT who can give you an individualized program
* all exercise should be focused on extension, which is stretching and elongating. Stay away from gripping or flexion exercise!
* extension exercise/stretching can sometimes help with decreasing rigidity and cramping
Conclusion: Remember the importance of activity modification and being open to change. This can help to improve your function, safety and independence.
AOTA - American Occupational Therapy Association
301-652-2682 or www.aota.org
APTA - American Physical Therapy Association
800-999-2782 or www.apta.com
888-438-5788 or www.lsvtglobal.com
Certified Aging-In-Place Specialist (CAPS)
Certified specialist through The National Association of Home Builders
800-368-5242 or www.nahb.org
Pennsylvania's Initiative on Assistive Technology (PIAT)
RESNA Â Rehabilitation Engineering & Assistive Technology Society of North America
National Assistive Technology Technical Assistance Partnership (NATTAP)
Phone: 703/524-6686 Fax: 703/524-6630
[Robin's note: here's a link to the NATTAP state contact list -- http://www.resnaprojects.org/nattap/at/ ... tacts.html
In California, the program is called CATS, California Assistive Technology Systems. See www.atnet.org
Contact Local Outpatient Centers
Rehab Centers associated with Hospitals (particularly non-sports oriented centers)
Ask if they have therapists who have worked with PD, PSP, MSA, CBGD or those who deal with neurological and balance problems
National Parkinsonâs Foundation
800-327-4545 or www.parkinson.org
Find a Doctor
Questions & Answers: All answers were given by Christine Robertson, unless indicated. I've re-organized them along topic lines.
Q: If someone's MD has never recommended PT or OT, should the patient or family ask for a referral?
A: Yes, the patient or family should ask for a referral. Many MDs are not aware of what OTs do. Even in the hospital where I work, some general practitioners are not aware of what OTs can do.
Ask for "prescription for OT evaluation and treatment."
Q: What about LSVT?
A: Go to the LSVT website -- lsvtglobal.com -- to find a clinician near you.
Q: Does Medicare or insurance cover LSVT BIG?
A: I believe so. Talk to the office manager associated with an LSVT BIG clinician to find out about insurance. Find an LSVT BIG clinician at lsvtglobal.com.
Comment by Janet Edmunson, CurePSP Board Chair: LSVT LOUD is for speech. LSVT BIG treats movement, not speech. LSVT BIG applies the sample principles of LOUD to improving motor skills.
Q: Can a program comparable to LSVT LOUD be done at home? We live in a rural area and can't find an LSVT LOUD practitioner.
A: LSVT LOUD includes homework and four appointments per week.
Maybe make one LSVT LOUD consult appointment and learn what can be done at home. Many therapists do one-time appointments, teaching the patient and family as much as possible. Follow up with a less-experienced therapist (OT, PT) in your area after the one-time appointment.
Comment by Laura Purcell Verdun, SLP: Check out LSVTglobal.com for a DVD you can purchase.
Comment by Janet Edmunson: Would training at home via web-cam be an option?
Q: Biggest obstacle is going to the bathroom. We are using a catheter but is there something else you can suggest?
A: More conservative (and non-invasive) is better. How about just a urinal? How about a bedside commode? This requires some bed mobility and the ability to transfer.
Comment from a webinar participant: recommend the SuperPole
EXERCISE AND WALKING
Q: Any suggestions on exercises to help patients move?
A: Without seeing the patient, it's hard to suggest something. It's best to see a patient when prescribing exercising. It's best to have a PT or OT consult with a therapist who knows neurological disorders. We don't have one set of suggestions we hand to everyone. Programs are designed around a person's abilities.
It's nice to find an exercise group with all neurological patients. An instructor can give adaptations. Socializing is great!
Q: What is range of motion exercising?
A: Some of the LSVT BIG exercises are ROM exercises. Big movements. Stretching. Even seated exercises can be helpful. A pulley system can be used. Yoga is helpful. Using the full range of a joint.
She refers the Wii system to lots of people, including the Wii Fit Plus. Have to be careful with the balance programs! The recommendations must be patient-specific.
Q: What about virtual reality, Wii, and Interactive Metronome?
A: We don't use the metronome at our clinic. Some studies say it works by helping the patient keep a beat when he/she is walking, for example. Some people say it works well for them.
Rather than buying a metronome, have someone clap or smacking a table while the patient is walking. This will help determine if the metronome might work for you.
Q: Do you have experience with a body-weight support treadmill?
A: Our center doesn't have one so I can't make any comments on how effective it is. The person is in a harness and on a treadmill.
Comment by Lesley Smith, PT (firstname.lastname@example.org
), a webinar participant: Has experience with the body-weight support treadmill. Email her with questions.
Q: Any tips for battling the stutter step?
A: This might refer to festination. Stutter steps are small, tiny, quick steps. These are often on the toes. To combat this: take your time, start yourself with feet spread, heel first.
Q: Any recommendations for neck support systems?
A: This is more of a PT question. There is something called a "head nester" that Heather Cianci sometimes recommends. This works for some, not all.
Q: Why doesn't insurance cover bathroom equipment?
A: I don't know. You would think that with insurance covering these items, they would save money in the long-run because people would fall less.
Comment by Janet Edmunson: Many insurance policies do have durable medical equipment (DME) coverage. The shower chair for her late husband Charles was covered. There's a limit. Ask!
Q: My husband complains nightly about his left arm bothering him.
A: Look at bed-positioning. Is the person sleeping always on that arm? Can you rest the arm on top of a pillow? Is this the side most-affected by the disease process? Consult with an MD to determine if this is an orthopedic problem, nerve problem, etc.
Comment by Janet Edmunson: A primary care physician diagnosed her late husband Charles as having a frozen shoulder. The MD recommended range-of-motion exercise and stretching.
Q: How can we keep a patient upright in a wheelchair?
A: Add a wedge in the seat. Use the appropriate seat cushion. Put a strap across the chest. Seated exercise: bring arms behind body; bring shoulders back; bring head back. If patient can do this on his/her own, the care partner can assist with this exercise. Work on re-alignment of the body as the disease process may be flexing the body forward.
Q: What affect does a paraffin bath have on a hand that is frozen or contracted?
A: Hand therapists use this for moist heat for 15-20 minutes before passing stretching the joints.
It depends on how contracted the hand is. And just dipping the hand in bath feels good but won't have much impact.
Q: Are there any supplements to help with mobility?
A: Ask your neurologist. In particular, ask if there are any drug trials involving supplements.
Q: What is FMC?
A: Fine motor coordination.
Q: Would hospice early on in the progression of the disease be of value?
A: I don't believe so. As soon as you receive a diagnosis, it's better to go to rehab. Therapists can teach the patients early on as to how to do things.
To get hospice, you have to be pretty progressed.