Category Archives: MSA

Speech and Swallowing Q&A – 5/13/10 Webinar Notes

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Today’s CurePSP (psp.org) webinar was presented by Laura Purcell Verdun, a speech-language pathologist who is experienced at treating those with movement disorders.  The topics were speech and swallowing problems.  The presentation was designed around some questions she had received in advance.  It was a terrific webinar.

Though today’s webinar was promoted as being about PSP, CBD, and MSA, very little of the info was disorder-specific.  So those coping with any atypical parkinsonism disorder will find value in this post.

There are three sources of info on the webinar:

1- The presenter’s slides have been posted to the CurePSP website:

psp.org/includes/downloads/inarslidestherapistseries1.pdf –> Editor’s Note: this link no longer works

2- The webinar was recorded, and the recording has been posted to the CurePSP website:

psp.org/includes/downloads/spwebinar_therapistsseries.wmv –> Editor’s Note: this link no longer works

3- My notes below.  (I’ve added topic headings and grouped the questions/answers by topic.)

Robin
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Speech and Swallowing Q&A for PSP, CBD, and MSA
Date:  May 13, 2010
Host:  CurePSP
Presenter:  Laura Purcell Verdun, speech/language pathologist, [email protected]

PSP, CBD, and MSA are rare aggressive neurodegenerative diseases that will impact swallowing and communication abilities at some point in the disease progression.  Management of swallowing and speech disorders in these circumstances requires changing intervention strategies as the disease progresses.

CHOKING

Is choking a bad thing?
* Yes
* Sign that the timing, coordination or strength of the swallow mechanism may be changing
* Sign that material (food, liquids, saliva) may be “going down the wrong way”
* Not comfortable and potentially scary
* Receive instructions on the Heimlich Maneuver

Why does someone choke only when eating soup?
* Broth is considered a thin liquid, which move faster than any other consistency.  If the swallowing mechanism is moving slowly, airway protection may be delayed.
* Soups, particularly, broth-based, are multiple-consistency items.  It’s hard for the swallow mechanism to manage the thin liquids, and the solids that need to be chewed, at the same time.
* Options:  use cream-based soups (denser consistency so they move slower) or blend soups so they are one consistency

SWALLOW STUDY

What is a swallowing study?
One type is called VFSS (videofluoroscopic swallowing study)
* this type may also be called MBSS (modified barium swallowing study)
* video xray of eating and drinking
* presented with various consistencies and volumes of food/liquids/pills
* defines present level of swallowing function compared to normal
* guides therapy efforts
Another type is called FEES (feberoptic endoscopic swallowing study)
* swallowing is examined via a flexible nasoendoscope

Do I need to have a swallowing study?
* Not necessarily
* For the swallowing study to be most revealing, it should reflect the home eating environment.  Specific foods, self-feeding, straws, etc.  Bring in 1-2 food/liquid items that have proven to be most problematic.
* Too often the swallowing study illustrates “you’re swallowing fine” because the swallowing study is a very controlled environment
* This study defines the extent of the swallowing problem and what is to be done about it

ASPIRATION

What is aspiration?
* Aspiration is when saliva, food, or liquids travel below the vocal folds into the airway (trachea)
* All these items should travel through the throat (pharynx) directly to the food tube (esophagus) to the stomach
* Chronic aspiration may cause aspiration pneumonia, an infection in the lungs

How do I know if I am aspirating?  Will the impact on my lungs be immediate?  Will I feel discomfort before pneumonia sets in?
* May not know you are aspirating.  “Silent aspiration” is when food, liquids, or saliva go down the “wrong way” without any outward sign.
* Only way to confirmation aspiration is by testing.  Tests include chest xray, swallowing study, etc.
* Effects may or may not be immediate but may be cumulative
* Monitor for chronic low grade fever, increased chest congestion, and coughing (especially coughing that occurs more during mealtimes than at other times of the day)
* Discomfort most likely to arise from coughing

Is it possible to have aspiration for liquids without dysarthria?
* Yes
* Dysarthria = when there is difficulty pronouncing sounds, consistent articulation errors, often with muscle weakness and discoordination
* In these neurodegenerative disorders, these two symptoms (dysarthria and dysphagia) often develop alongside each other
* Once dysarthria is present, there is also concern for changes in swallowing because many of the same muscles and nerves are involved

Who is at risk for aspiration pneumonia?  (From Langmore, et al.  Dysphagia 1998.)
* Altered mental status
* Advanced age
* Presence of a feeding tube
* Prior history of aspiration pneumonia
* Malnutrition
* Physical immobility
* Feeding dependence
* Poor oral hygiene

THICKENERS

Do thickeners taste OK?
* Yes
* They change the consistency of the liquid or food item, not the flavor
* Commercial thickeners come in two types — powder and gel.  Powder = Thick-It, Thick-It 2, Thicken Up, NutraThik, Thicken Right, etc.  Gel = Hydra-Aid, SimplyThick (good choice if you are dealing with diabetes because it’s not starch-based).
* Pre-thickened liquids from Aqua Thick, Thick&Easy Drinks, etc,

Sources for commercially-available thickeners:  [Robin’s note:  start with these websites and then enter the name of the product in the search box] Thick-It:  thickitretail.com
ThickenUp (from Resource):  nestle-nutrition.com
Hydra-Aid:  linksmed.com
SimplyThick:  simplythick.com
Thick & Easy:  hormelhealthlabs.com
Aqua Thick:  cwimedical.com
A good online medical supply store (for thickeners and other items):  brucemedical.com

Are there other ways to thicken without commercial thickeners?
* Yes:  oatmeal, gelatin, fruit purees, blend in frozen fruits, bananas, banana flakes (available at health food stores), potato flakes, Silken tofu (soft)
* Blend vegetable soups to thicken them
* I don’t recommend eating JellO in the presence of swallowing problems.  In my experience, JellO is very problematic to swallow.

More thoughts about thickened liquids:
* May not be tolerated well by lungs if aspirated
* May contribute to reduction in fluid intake such that you can become dehydrated
* Not entirely clear how well water is absorbed in the gut from thickened liquids
* Quality of life considerations

DELAY IN SWALLOWING

What does someone hold foods/liquids in her mouth for 15-20 seconds before swallowing?
* Could be related to changes in the neurophysiology of the swallow mechanism, or cognition, including apraxia or impaired sensation.
* Suggested approach to dealing with this situation:
– stick with food/liquid items where this seems to be less of an issue
– verbal cues may help (“go ahead and swallow”) but don’t rush someone
– manually apply pressure under base of tongue moving forward may trigger swallow
* Meal times should be limited to anywhere from 30-60 minutes.  Consider smaller, more frequent meals.
* Concern is for expending more calories trying to eat than consuming

MEALS

What meals are appropriate for a swallowing disorder?
* Maintain a balanced diet
* Don’t necessarily eliminate foods but prepare foods differently to enhance ease and safety of swallowing
* Stick with moist and tender foods, such as dark meat chicken, fish, casseroles, pastas, stews, cooked vegetables, canned fruit, etc.
* Use condiments, gravies, or sauces to lubricate foods
* Avoid highly textured, particulate (something that breaks into pieces), and dry foods, such as red meats, rice, corn, firm breads, crackers, nuts, popcorn, etc.
* Meats cooked medium rare may be more tender than something well done
* Blend multiple consistency items such as fruit cocktail, broth-based soups, oranges, watermelon, cold cereal.  (Example:  If you are eating a bowl of Cheerios, let the Cheerios sit to soak up milk, then pour off the remaining milk, and eat the soggy Cheerios.)
* Foods may need to be pureed in advanced stages of swallowing difficulties
* Try foods/liquids of different temperatures
* Try carbonated liquids, sparkling vs. still water
* Consider more frequent, smaller meals
* Consider use of nutritional supplements (Ensure, Boost, Carnation Instant Breakfast, Scandishake, etc)

Swallowing cookbooks:
The Dysphagia Cookbook, 2003
Meals for Easy Swallowing, 2005.  See:  als-mda.org/publications/meals
Easy-to-Swallow Easy-to-Chew Cookbook, 2002
Soft Foods for Easier Eating Cookbook:  Recipes for People who have Chewing and Swallowing Difficulties, 2007.
I Can’t Chew Cookbook: Delicious Soft Diet Recipes for People with Chewing, Swallowing, and Dry-Mouth Disorders, 2003.

Swallowing and feeding products:
* Flexi-Cut Cup and Provale Cup:  from alimed.com
* Independence Spillproof Flo Tumbler:  from kcup.com
* Wedge Cup:  from wedgecup.net
* Maroon Spoons:  from proedinc.com
* Scooper Plate with Non-Skid Base:  from bindependent.com
* Skidtrol Non-Skid Bowl:  from maddak.com
* A variety of products from Bruce Medical Supply:  brucemedical.com

Swallowing tips that families or other speech therapists have offered:
* Place a digital picture frame with audio on the dining table.  Play recorded messages for mealtimes that say “eat slow, one bite at a time, small sips” etc.
* Add bananas to thicken smoothies
* Use Fla-vor-ice tubes.  Empty the contents, fill with water or OJ, and position upright and freeze

Will using a straw help with swallowing?
* I can go both ways on this.  Using a straw can be problematic because it can accelerate the liquid to the back of the mouth/throat.  Another issue is that you are sucking in at the same time, your airway is still open.  But a straw may be beneficial because you can limit intake.  Sip – hold for a second in the mouth (letting the throat catch up) – then swallow.  Some people do better by using a straw rather than drinking from a cup.  Some people get a rhythm going using a straw and taking multiple swallows.
* This can be evaluated during a swallow study

How can we plan ahead for swallowing problems in the future?
* No talking and eating/drinking at the same time
* Monitor for mouth stuffing and chugalugging liquids
* Take time to eat

If a family member with PSP is gaining weight, is it OK to exceed 30 minutes for mealtimes?
* I’ve seen weight gain in PSP, not in CBD or MSA.  In PSP, there’s a tendency towards disinhibition, including rapid drinking and rapid eating.
* This isn’t a concern from a swallowing point of view.  It may be an issue for ambulation — both the patient getting around and the caregiver helping the patient.
* Goal should be to keep weight stable

SWALLOWING TREATMENTS?

I started taking nortriptyline, an antidepressant.  It seems to have helped my swallowing.  Could this be the case?
* Would suspect that improvement is not related to the medication
* This medication may dry up secretions somewhat
* Discuss with your neurologist

What is Vital-Stim?  Will it help persons with these diseases?
* Reports to apply small electrical current to stimulate the muscles responsible for swallowing
* Must be prescribed by an MD
* Limited data, no studies specific to neurodegenerative diseases except for one very limited study with MS.  Clinical efficacy and utility of this therapy remains inconclusive.
* I don’t recommend VitalStim for these populations

FEEDING TUBE

When might a feeding tube be indicated?
* Recurrent aspiration pneumonia
* Reduced enjoyment of mealtimes
* Increased duration of mealtimes such that you are burning more calories than you are getting in
* Progressive weight loss or dehydration, despite optimizing feeding situation
* Trouble swallowing coexisting with depressed alertness
* Evidence of significant silent aspiration with swallowing study or other clinical evidence of frequent aspiration

What do I need to consider about a feeding tube:
* Discussions need to take place sooner rather than later, and repeated frequently.  Prefer to initiate discussions prior to a health crisis.  Patient and family should agree in advance with the doctor about what is hoped to be accomplished from trying a feeding tube.  Decisions must revolve around assessment of burdens and benefits.  Requires value judgments and consideration of quality of life.
* Gastric contents and saliva can still be aspirated
* Feeding tube placement does not preclude oral intake
* No randomized controlled research trials to indicate whether tube feeding is beneficial compared to continuation of oral feeding for survival

ORAL HYGIENE

How important is oral hygiene?
* Very important
* Goal is to keep mucosa of the mouth clean and moist to minimize bacteria of the mouth.
* If the mouth is moist, it’s easier to swallow
* May be increased incidence of aspiration pneumonia in those with poor oral hygiene in the setting of swallowing difficulties

What should I do for oral hygiene?
* Scrupulous dental care (visit dentist, changing to a better toothbrush)
* Avoid smoking, alcohol (including mouthwashes that contain alcohol), and caffeine.  Alcohol and caffeine may dry the mucosa of the mouth.
* Drink plenty of water throughout the day
* Minimize non-cooked dairy products as these may thicken secretions
* Rinse out mouth after meals
* Club soda or sparkling water may help cut through secretions
* Avoid gels and mouthwashes that contain alcohol, menthol, or whitening products
* Nighttime humidifier at bedside as these keep the mouth, nose, and throat mucosa moist.  Keep them clean.
* Consider a suction machine, in later stages.  One drawback is that the more you use the machine, the more the nose and throat get dried out, thereby causing the body to produce more secretions.  A suction machine may be helpful to clear the mouth before meals.
* Make sure dentures are clean and well-fitting
* Consult with a dentist

Oral care products:
* Biotene:  toothpaste, mouthwash, and Oral Balance Moisturizing Liquid; products contain three primary enzymes that boost and replenish salivary defenses; available at Target, WalMart, etc.; biotene.com; 800/922-5856
* Oasis moisturing mouthwash
* Plak-Vac Suction Toothbrush:  800/325-9044; trademarkmedical.com/personal/personal-oral.html
* Toothette Swabs:  dental hygienists say that they aren’t good for cleaning out the mouth because they aren’t abrasive enough

How effective are WaterPiks?
* Helpful in getting out large particles.
* I don’t know if they are abrasive enough to clean enamel and plaques.  I view this as a supplement to brushing.
* Also, if someone has swallowing problems, I don’t know if they can tolerate a WaterPik.

SPEECH THERAPY

Is speech and swallowing therapy efficacious?
* Depends on circumstances and what is trying to be accomplished
* Efficacy of exercise is difficult to document given variable rates of progression
* Some studies describe longitudinal progression of speech and swallowing dysfunction.  (Goetz, et al, Neurology 2003.  Muller, et al, Archives of Neurology 2001.)
* Very few studies regarding treatment of speech and swallowing in these populations.  (Article by Countryman, et al, Journal of Medical Speech Pathology 1994.)

What is LSVT (Lee Silverman Voice Treatment)?
* Proven to significantly improve voice quality in PD.  Relevant to our discussion tonight given the similar symptomatology.
* Very specific, intensive treatment program emphasizing LOUD speech.  A loud voice generates improved respiratory support, articulation, and facial expression/animation.
* Developed by Lorraine Ramig, PhD
* lsvtglobal.org

Should I keep doing LSVT forever?
* Specific to these populations, yes…whether it is LSVT or some other form of speech therapy
* Exercises should be maintained daily
* These are progressive disorders.  Communication will deteriorate over time.
* Speech therapy is of limited benefit if those skills learned are not maintained outside the clinic

Will LSVT help my swallowing?
* One report (Sharkawi, et al, JNNP 2002) showed some improved swallowing movements in patients with PD.  The disorders we are talking about tonight exhibit some similar deficits.
* LSVT hasn’t been studied in these populations

A family member completed speech therapy almost a year ago.  Now his speech has declined.  Is it possible to improve a second time?
* This is a common scenario.  This raises the issue of whether direct speech therapy should be considered in the first place, and what techniques specifically should be addressed.
* It’s best to intervene early.  Late-stage interventions are often frustrating.
* Emphasis should be placed on functional communication
* Improvement could be possible.  The issue is:  can it be maintained?  That’s likely to be more difficult as the communication impairment has progressed over time.

I have MSA and I’ve taken speech therapy yet my speech is bad and gets worse.  Is practice over time very helpful?
* Exercise does not appear to be contraindicated in these three disorders
* Whether practice helps depends on:  severity of speech impairment and effect on overall speech intelligibility, state of underlying disease process, specific exercises you are doing
* A trial of speech therapy (a couple of visits) to investigate stimulability is often reasonable.  Can you carry over what you’ve learned?
* Emphasis should be placed on improved speech in the home environment.  You may need to consider assistive communication.

When is speech therapy covered by Medicare or other insurance?  I was told that with PSP, speech therapy wouldn’t improve my speech, so the expenses wouldn’t be covered.
* 2010 Medicare cap is $1860 for combined speech and physical therapy, and a separate $1860 for occupational therapy
* asha.org has two good resources on insurance coverage:
asha.org/practice/reimbursement/medicare/medicare_documentation.htm
asha.org/News/Advocacy/2010/Health-Care-Reform-Legislation-Law.htm
* Depends on what the goals are for speech therapy.  Are you focusing on speech restoration or speech compensation (trying to make adjustments and optimize the abilities you presently have)?  Are you looking at direct speech therapy or assistive communication?

Is the $1860 cap for one-year or a lifetime?
* It’s an annual cap
* It often times gets adjusted from year to year

WEAK VOICE

I can only speak in a 2-word whisper.  What exercises should I do?
* Need to determine why the voice is so weak.  Get an exam by an ENT and a speech pathologist.
* Options:  if speech remains relatively intact, try LSVT.  And consider a personal voice amplifier.  (Example – Chattervox from chattervox.com)

Will breathing exercises help to strengthen my weak voice?
* Taking a breath prior to speech is almost always beneficial.  (“Take a breath and tell me what you want for dinner”)
* Inspiratory and expiratory muscle training can improve respiratory muscle strength and endurance.  But will this change voice and speech production?  Not so, for one MS study.

Is there a procedure to help the voice work better?
* Weakness of voice is common.  This is attributed to vocal fold atrophy and weakness of respiratory drive to keep vocal folds vibrating and project the voice.  (With atrophy, the muscles of the vocal folds are thinner and weaker.)
* Vocal fold augmentation is a procedure where a filler is injected into the vocal folds to bulk them up.  Makes it easier to vocal folds to vibrate against one another.  Variable benefit in these populations.  There are no studies.  Two things that indicate if you would more likely benefit:  if you have strong breathing muscles and if the problem is with voice rather than speech.  See adiesse-voice.com for info on the most common filler.

MUSCLE TRAINING

EMST (expiratory muscle strength training)
* Was found to be helpful to increase cough and swallowing in PD
* Dr. Sapienza (Univ of FL) is presently doing a study with PD and MS.  [Robin’s note:  In 2009, Dr. Sapienza was also studying EMST in PSP.  I will follow up with her because she was going to send me the preliminary data.] * Device called Aspirate EMST 150.  Available as aspireproducts.org.  Simple to use and maintain.  There is a specific routine that is recommended.
* I don’t know if this would be of benefit but it has the potential to help

SPEAKING TIPS

Is there anything else I can do to improve my speech so others will be able to understand me?
* Is it a problem with the voice, meaning the sound source, or the speech, meaning how you pronounce words?
* Make sure to have listener’s attention
* Provide context upfront.  Example:  “I want to talk about what’s for dinner.”
* Optimize environment.  Turn down radio, turn down TV, put your newspaper down.
* Communication is a two-way street
* Make sure hearing impairments are addressed
* Speak slowly
* Exaggerate speech and mouth movements
* Do not trail off — pronounce all sounds.  Voice must be strong from beginning to end.
* Space between words
* Be more forceful with speech
* Use a minimum, yes-no system

ASSISTIVE COMMUNICATION

What do I need to consider with assistive communication?
* Is this serving as the primary means of communication or to supplement speech?
* With whom will you need to communicate?
* What type of info needs to be communicated?
* How will you access the device?  (physical capabilities, visual capabilities)
* Any cognitive limitations?
* What type of environment?
* Consider safety within the home or outside the home.  Medic-alert system.

What assistive communication options are available?
* Two system types:  unaided (rely on the person to convey the message through gestures, sign language, etc) and aided systems (relies on the use of equipment or tools)
* Aided systems range from low-tech (paper, dry erase board, communication board) to high-tech (speech generating devices or written output; electronic or software-based devices using pictures, words or phrases to create messages)

How will someone communicate when he can no longer talk?
* Speak with your speech pathologist to investigate these resources
* Alphabet supplementation with an “alphabet board.”  Speaker points to the first letter of each word spoken.  Or, can spell the entire message.
* Communication board.  One example is a WordPower OnBoard, which is a manual communication board composed of the 100 most common English words.  There’s an alphabet board on one side.  The other side can be customized.  Available from:  store.mayer-johnson.com/us/word-power-onboard.html
* Written-choice communication.  Requires partner support.  Partner establishes the context or question, and written choices.  Partner writes down “milk – coffee – Coke” and asks “What would you like to drink?”
* iPhone, iPad, and iPod application called Proloquo2Go.  Preset communication buttons.  Text to speech.  Save customized sayings.  iPhone and iPod are harder to use because they are smaller.  proloquo2go.com. Might be $190.
* Lightwriter (toby-churchill.com) or Dynavox (dynavoxtech.com):  portable text to speech communication aids.

Will insurance cover a speech generating device (SGD)?
* Yes, Medicare provides benefits for all currently available digitized speech output devices
* There are two good resources on insurance coverage:
asha.org/practice/reimbursement/medicare/sgd_policy.htm
aac-rerc.psu.edu/index-38242.php.html
* Consult with your speech pathologist to determine if this will be helpful and which one to get

AAC online resources:
asha.org/public/speech/disorders/InfoAACUsers.htm
resna.org
aac-rerc.psu.edu
assistivetech.net
isaac-online.org/en/home.shtml
ussaac.org

OTHER DEVICES

Have you had any experience using an electrolarynx to improve speech?
* This is a battery-operated device used primarily in those who have lost their voice/larynx to cancer.  The hand-held vibrating head provides a sound source.
* Listen to a sample of this computer-sounded voice at:  webwhispers.org/library/BobAL.mp3
* Requires hand coordination for neck placement and on-off, as well as relatively intact speech
* Not typically indicated
* I have ever used this device in this population

FINDING A SPEECH PATHOLOGIST

How do I find a speech pathologist?
* Find someone who is ASHA certified (asha.org/findpro) and state-licensed
* LSVT:  lsvtglobal.com
* Movement Disorders Society:  movementdisorders.org
* APDA:  apdaparkinson.org  [Robin’s note:  the Information & Referral Center in your local area may have a list of speech pathologists who work with those with Parkinson’s Disease.] * NPF:  parkinson.org  [Robin’s note:  click on “Find Local Resources” at the top.] * Ask your neurologist for a referral to a speech language pathologist.  Ideally, look for an SLP with experience in movement disorders or any neurodegenerative population.

IN CONCLUSION

Concluding remarks:
* Consult with your MD and speech pathologist to tailor a program specific to your needs
* Continue to follow-up with them

UPCOMING MATERIALS

These flyers will be available in the near future through CurePSP:
* designed for speech language pathologists (“what every SLP should know…”), OTs, and PTs
* on PSP, CBD, and MSA
* you can get them for your SLP, PT, and OT

Physical Therapy Q&A (Webinar Notes, 4-8-10)

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Last Thursday’s CurePSP webinar with Heather Cianci, a physical therapist who is an expert in movement disorders, was very good.  We need more people like this in our communities!

Though the webinar was hosted by CurePSP, all of the disorders in our group will find useful information in the webinar.

Here are some key points from my perspective:

  • Start an exercise program immediately.
  • For fall prevention, consider gait and balance training, home modifications, acceptance that certain things cannot be done without assistance, and adaptations.
  • How should the caregiver help someone walk? Often caregiver will stand to the side and put an arm around the back.  Sometimes holding at the elbow is good enough.  Sometimes holding hands is good enough.  This should be practiced together, in front of a PT.  If someone is less stable but isn’t ready for a walker, consider using a gait belt.
  • As soon as falls or balance problems begin, have PT and OT assessments for “prehabilitation,” education and training.  Learn new ways of transferring, walking (maybe with equipment), balance exercises, turning, bathroom safety, etc.  If someone can’t remember these techniques, someone must be with the patient at all times.  Later in the disease, the patient can’t move safely without falling.  Even when someone is home-bound, all effort should be made to keep someone active.
  • Generally, a 4-wheeled rolling walker that has seat and brakes works the best for PSP.  Durable wheels that make turns (swivel).
  • Examples of devices for getting out of a chair:  chair risers (that attach to the bottom legs of a chair); firm cushion to raise the height of a seat; power chairs.
  • Examples of devices for getting out of bed:  bed rails; wedge pillows; electric beds.
  • Two good websites for equipment are 1800wheelchair.com and sammonspreston.com.

The webinar was entirely questions and answers.  My notes are below.

Robin

——————————————————————————–

Heather Cianci, PT
Physical Therapy:  Questions & Answers
CurePSP Webinar
4-8-10

Q:  Falls play a very significant role in all of these disorders.  I am interested in treatment strategies to assist with managements.

A:  As soon as falls or balance problems begin, she recommends PT and OT assessments for “prehabilitation,” education and training.  Learn new ways of transferring, walking (maybe with equipment), balance exercises, turning, bathroom safety, etc.

If someone can’t remember these techniques, someone must be with the patient at all times.  Later in the disease, the patient can’t move safely without falling.

Even when someone is home-bound, all effort should be made to keep someone active.

Q:  Even with limited exercise or mobility, I get short of breath to the point of not being able to speak in more than a whisper.  How can I exercise and get any benefits if I can’t breathe?

A:  You may need to see a pulmonologist.  If you are cleared by this MD, you may need a supervised exercise program monitored by a respiratory therapist.

972-243-2272 Respiratory Care, www.aarc.org

Q:  I am experiencing extreme muscular soreness in my left quad.  Why?  I am in pain.  My internist provided no answers.

A:  Hard to answer since I can’t conduct an assessment.

The quad plays a role in straightening the knee.  See a PT for an assessment.  If this is a pulled muscle (and that sounds like what it may be), heat and massage may help.

Q:  I have pain above my eyes.  Is this due to muscle problems?  My left eye does not open all the way.

A:  Without being able to do a formal assessment on you, I’m not able to give an exact answer.

See an ophthalmologist about the pain and the eye not opening.  This may be a pulled muscle in the head!

The eye not opening may be due eye lid muscle weakness or blepharospasm.  Treatments for blepharospasm:  botox injections, eyelid crutches, or Lundie loops on the glasses.

Ptsosis can be a problem.

Q:  When my husband sleeps over 12 hours, his balance is much better.  Is there any relationship?

A:  It makes sense that a well-rested person can handle balance challenges.  There is no research supporting this.

There are lots of sleep problems in PSP.

Q:  Could you address the differences in the visual disturbances between PSP, LBD, CBD, and/or FTD?

A:  In LBD, a big problem is hallucinations.  This may come into play when a patient tries to get up and talk to someone they are hallucinating about.  Education of care partners that this is normal.  Don’t try to talk the patient out of the hallucination.  Is there a pattern to the hallucinations?

In FTD, there are no visual deficits.  There are behavioral problems.  There is disinhibition; the usual filter is not there.  Many times these patients experience apathy.

In CBD, many patients suffer from visuo-spatial disturbances.  In a study, CBD patients may not have seen the depth of something (so they missed a step) or they may think a dark spot on a rug is a hole in the floor.

In PSP, there is a marked problem with vision.  Many play into the functional role of people moving around.  First is the difficulty with vertical eye movements.  Some can’t see down.  Some can’t see up.  Obviously if someone can’t look down, they can’t see the floor.

Second, often times the eyes are fixed at a given target.  They experience square-wave jerks.  Third, there can be a misalignment of the eyes.  Fourth, there is a problem with cogwheel tracking of moving objects.  And, they lose the quick phase of movement.  They experience nystagmus.  They have blepharospasm (involuntary closing of the eyes and inability to close the eyes).  Many have a staring look or a look of surprise.  Many have photophobia or intolerance of bright light.  Some with PSP can’t stop blinking in bright light.

Q:  What exercise or therapy has an effect on balance or eye movement in PSP patients?

A:  Cris Zampieri gave the last webinar.  There are exercises to help with this.  Eye movement exercises and balance exercises did better with their mobility than those who did balance exercises alone.  (Zampieri has published two studies.)

There was also a case report on one mixed PSP/CBD patient.  Treadmill study.  Improvement demonstrated.

Another case report on body-weight supported treadmill training.  Improvement demonstrated.

Unanswered questions:  when do we start these exercises?  How do we change the exercises?

Q:  Is incontinence a symptom of PSP?

A:  Yes.  Seen more in the later stages.
Q:  Is it worth focusing on balance and eye gaze when the patient can no longer stand or straighten his head to see?

A:  Always important to continue an exercise program, regardless of the stage of disease.  Exercises can be done in bed, seated, standing while holding on to a chair, etc.  Exercise makes us feel better.

Q:  Is there any type of eyeglass lens that will help to focus things that are below the fixed eyeball?

A:  Consider prisms.  Different prisms are needed for different tasks (eg, reading vs. watching TV).  Bring things up to the level of the eyes (gaze level).

Q:  Is there anything that can be done to prevent nystagmus?

A:  As far as I know, there isn’t anything that can be done.

Q:  My mother is dragging her leg.  Any recommendations on strengthening?

A:  Without doing an actual assessment, it’s not possible for me to say what the exact cause of the leg dragging is, or the best approach.  She may need an assistance device.  She may need to be taught strategies to take a larger step and land on her heal.

Q:  Can anything be done to slow the progression of eye changes?

A:  Nothing can be done to slow down eye changes.  You might consider patching one eye.

Q:  I’ve had PSP for the last 6 years, and have fallen over 1200 times.  Physical therapy has been discontinued.

A:  If you have a medical reason for physical therapy, it should be covered.  If you are not reaching your goals, insurance may not pay.

Look for a fitness class or a fitness trainer.  Go to a local gym.

Maybe you need home modifications, more assistance in the home, and a scooter or wheelchair.  This is dangerous!  The falls must be prevented!

Q:  What is effective for treatment in early/mid stage?  Should we focus on vision training, balance, neck mobility?  What can we do to prevent falls — compensation vs. rehab?

A:  Start an exercise program immediately.

Fall prevention:  gait and balance training, home modifications, acceptance that certain things cannot be done without assistance, and adaptations.

Q:  What is the best walker for PSP patients?

A:  Generally, a 4-wheeled rolling walker that has seat and brakes works the best.  Durable wheels that make turns (swivel).

We like to use 1800wheelchair.com.  800-320-7140 phone.  Get a catalog.

PSP patients should NOT use an aluminum, straight, 2-small-wheeled walker.  You can ask for a replacement for swivel wheels for this walker.

Q:  Is it a good idea to put weights on the front of the walker?

A:  This is done to prevent backward falls.  That’s the theory.  If the person doesn’t know how to properly use the device, this walker won’t work.

It’s best to have a PT assess your walking and suggest the best device.

Q:  What is the best device for getting up from a sitting or lying position?

A:  There are many good devices.  It’s best to have a PT or OT try the devices with you to find the right one.

Examples of devices for getting out of a chair:  chair risers (that attach to the bottom legs of a chair); firm cushion to raise the height of a seat; power chairs

Examples of devices for getting out of bed:  bed rails; wedge pillows; electric beds

Q:  While walking, the feet become frozen.  How do you help the PSP patient “unfreeze”?

A:  These techniques come from the PD world.  Don’t fight the freeze.

1- stop moving and steady yourself
2- take a breath and stand tall
3- make sure the weight is on both feet equally.  (Often with a freeze, the weight is imbalanced.)

Focus on walking; do that activity well.

Don’t pull on or push someone who is frozen. Talk them through it.  Have them shift their weight.  Or count 1-2-3 and take a big step.  Or step over something on the ground.

Lots of auditory and visual cues can help.  Her Center has a handout on this.

Q:  Is PT beneficial for all stages?

A:  Yes!

Q:  Are reflexology and massage beneficial?

A:  Many patients do get temporary relief from pain and stiffness from massage.  There’s no research to support or refute reflexology or massage.

Q:  Why does PSP cause one to run into walls and doorways, even when being guided?

A:  Lots of different things going on with PSP.  Loss of balance.  Visual-perceptual problem.  Loss of ability to scan the environment (anticipatory scanning).  May have double vision.  May be from mental confusion.

Q:  During the Zampieri webinar, did she say that they are running tests with rats who have PSP?

A:  No, these studies were done on rats with chemically-induced Parkinson’s Disease.

Q:  Did these studies slow the progression of PD?  Does this apply to PD?

A:  Different exercises gave different results in the rats’ brains.  In some, the rats were protected from developing PD.  Reduction in symptoms and cell death before the rats were given the PD.  After the rats were given PD, fewer dopamine cells died.

PD – loss of cells in SN that produce dopamine
PSP – weaking of muscles that are controlled by nerve cells that are controlled in the brainstem; this results from tau accumulation in the SN

The medications that treat PD don’t help with PSP.  We don’t know if the effects on the brain of those with PD will be the same on those with PSP.

But it doesn’t hurt to exercise.  Any exercise can be helpful, when done correctly.

Q:  My wife cannot walk by herself.  She cannot push a wheelchair by herself.  What PT can I do?

A:  You already have a great exercise program established.  Without evaluating her, I can’t give specific exercises.

Practice techniques to make the transfers easier to both of you.

Keep working on both cardio and strength training.

Q:  Recent news on PD bikers.  Does this apply to PSP?

A:  We don’t know.

Q:  What is prehabilitation?

A:  When first diagnosed, ask the MD for a referral to PT and OT.  Don’t wait for balance problems.

Q:  Should and can an MSA patient with OH still benefit from PT and what should they be doing?

A:  Absolutely.  OH is a sudden drop in BP when people go from a lying position to a seated position or a seated position to standing.  PT can really help with this.  PT can teach you exercises to pump the blood better.  PT can talk about compression stockings.  PT can help you learn safe ways of moving.

Q:  What about neck mobility?

A:  It depends on the situation.  In PSP, patients can have dystonia so it can drop the neck forward.  Consider botox.

In some, it’s the opposite with patients looking up at the ceiling all the time.  Botox might help with the retrocollis.

Stretch what is tight and strengthen what is weak.

Q:  What specific knowledge about PSP, if any, do you think a PT needs to have to do a stellar job at providing PT to a PSP patient?

A:  Great question!  In school, we might’ve received two minutes of training on atypical parkinsonism disorders.  This is not necessarily a bad thing.  Find a PT who is willing to do some research.  A PT is going to test you — walking, your balance, up and down stairs.  PTs can’t treat the deficit in the brain but they can treat the functional issues.  Are you falling backwards?

We are starting to have people who are specially-trained in PD and atypicals.  See wemove.org for PTs and OTs.

Q:  Problem of restless legs when sleeping.

A:  There is no good PT for this problem.

Q:  Are there any illustrated books available that show the exercises and assistance techniques specific to PSP for the caregiver?

A:  Fabulous question!  We are currently working on getting The Guide re-done.  It will have pictures.  We are also intending to make videos that are downloadable.

There are lots of exercises on the web.  Check with your MD, PT, or OT to be sure they’re safe.

Q:  Is there a catalogue for equipment?

A:  Two good ones:  1800wheelchair.com, sammonspreston.com

Any PT place should have catalogues of equipment.

Q:  How do we locate PTs throughout the US or other countries?

A:  Usually a movement disorder specialist is linked up with specialized therapists.  If you are not with an MDS, check out wemove.org, lsvtglobal.com (LSVT PT/OT or LSVT ST…they are trained in PD and will know some about the atypicals).

In the tri-state area (PA, MD, NJ plus DE), she has recommendations.

European Association Parkinson’s Disease Physio Therapists

Q:  Are ankle or foot weights beneficial or a hindrance for PSP patients?

A:  For balance, this is not helpful.  To strengthen muscles, this is helpful.  Not a great idea to put them on and walk with them.

Q:  How should the caregiver help someone walk?

A:  Often caregiver will stand to the side and put an arm around the back.  Sometimes holding at the elbow is good enough.  Sometimes holding hands is good enough.  This should be practiced together, in front of a PT.

If someone is less stable but isn’t ready for a walker, consider using a gait belt.

Q:  What are some ways to make the home more safe?

A:  Big topic!  You can actually go room through room.  An OT or CAPS certified aging in-place specialist) can evaluate the home.

Q:  Diagnosis of PSP.  The dementia seems to be causing the patient to exclaim they have only a balance problem and not PSP.  How does one overcome the symptoms to convince a patient they have the disease?

A:  Schedule another appointment with the diagnosing neurologist or one of the team members.  Ask for another appointment with the patient and care partner for the purposes of medication.  Seek help also from a social worker, counselor, or cognitive behavioral therapist for the patient.

This is a clinical diagnosis.  Best to find a movement disorder specialist.

Q:  Are there any new methods for treating MSA-C?

A:  Nothing new in the PT realm for MSA-C.

There is a study ongoing at UPenn for Azilect in MSA-P.  See pdtrials.org to learn if the study is happening near you.

There is a 2008 study comparing the cognition of those with MSA-P and MSA-C.  Those with MSA-C have less severe cognitive dysfunction than MSA-P.

Q:  Can you give information about support groups or volunteers that could go in and help people all over the world?

A:  CurePSP, psp.org
Facebook page “Miracles for MSA”
MSA National Support Group, shy-drager.org

Find volunteers through:
* local church or synagogue
* hospitals
* YMCA
* universities with PT, OT, and ST programs
* local clubs (eg, Rotary, Kiwanis)
Medical Education Advisory Board of CurePSP is putting together a series of pamphlets on PSP, CBD, and MSA (three separate booklets).  Information for PTs, OTs, and STs.  These will be available online soon (May).

Helpful Hints from Occupational Therapist (2-11-10 Webinar Notes)

Date
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This post is of interest to everyone in our group even though the speaker’s topic refers to PSP and CBD only.

I’m not sure how many participated in last week’s (2-11-10) webinar put on by CurePSP 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.

My extensive notes are below.

Robin

—————————————————————————–

Helpful Hints from Occupational Therapy for PSP/CBD/Related Disorders:  How to Improve ADLs and Safety!
Webinar Host:  CurePSP
Speaker:  Christine Robertson, OTR/L, Occupational Therapist
February 11, 2010

Speaker’s Background:
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 protected]
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
* OH
* 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.

Reading:
* 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

Telephone 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)

Why exercise?
* 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!

Hand 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.

Resources:

AOTA – American Occupational Therapy Association
301-652-2682 or www.aota.org
[Robin’s note:  AOTA does NOT have a directory of OTs]

APTA – American Physical Therapy Association
800-999-2782 or www.apta.com

LSVT® BIG
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 (CAPS Directory)

Pennsylvania’s Initiative on Assistive Technology (PIAT)
http://disabilities.temple.edu/programs/assistive/piat/

RESNA ­ Rehabilitation Engineering & Assistive Technology Society of North America
www.resna.org

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/statecontacts.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 Parkinson’s Foundation
800-327-4545 or www.parkinson.org

We Move
www.wemove.org
Find a Doctor

Questions & Answers:  All answers were given by Christine Robertson, unless indicated.  I’ve re-organized them along topic lines.

GETTING THERAPY

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?

SAFETY

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
[See:  www.healthcraftproducts.com/superbar.htm ]

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 ([email protected]), 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.

EQUIPMENT

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!

POSITIONING

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.

OTHER

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.

Treatment of dysautonomia in PD, MSA, DLB, etc.

Date
Posted by

This medical journal article provides a good overview of autonomic dysfunction in Parkinson’s Disease, MSA, and DLB.

The non-motor symptoms addressed include:

* orthostatic hypotension:  If you are dealing with OH, I especially recommend you review Box 1, “Nonpharmacological and pharmacological treatment of orthostatic hypotension.”  I’ve copied the box below as best I can.

* supine hypertension:  This is probably the best overview I’ve seen.

* cardiovascular effects of antiparkinsonian drugs

* dysphagia (swallowing problems)

* gastric motor dysfunction (delayed gastric emptying).  Note that the medication “Domperidone speeds up the emptying of the stomach…”  This medication is not available in the US.

* constipation

* bowel dysfunction

* urinary dysfunction.  I had never seen this data before:  “More than 50% of MSA patients suffer from recurrent infections and a significant number (approximately 25%) die of subsequent complications.”

And this is a useful point as well:  “Missclassification of urogenital autonomic dysfunction as benign prostatic hyperplasia has been reported which may increase the risk of unnecessary urological surgery.”

* sexual dysfunction

* sweating abnormalities

I suggest reading only about the symptoms or disorder of interest to you.

Wonderfully, the full article is available online at no charge via the PubMed system:

www.ncbi.nlm.nih.gov/pmc/articles/PMC3002611/

Therapeutic Advances in Neurological Disorders. 2010 Jan;3(1):53-67.
Treatment of dysautonomia in extrapyramidal disorders.
Ziemssen T, Reichmann H.
ANF Laboratory, Department of Neurology, University Clinic Carl Gustav Carus, Dresden University of Technology, Dresden, Germany.

Again, Box 1 about orthostatic hypotension is copied below.

Robin

www.ncbi.nlm.nih.gov/pmc/articles/PMC3002611/table/table2-1756285609348902/

Box 1. Nonpharmacological and pharmacological treatment of orthostatic hypotension.

Nonpharmacological procedures
* Avoid sudden posture changes, particularly after long periods in supine position or during venodilating conditions (i.e. hot baths).
* Increase of daily salt (3-6 g NaCl) and water (2-3 l) intake.
* Diet low in carbohydrates; increase of meal frequency while meal size should be decreased.
* Isotonic exercise such as swimming, aerobic training, bicycling or walking at moderate level.
* Application of counter manoeuvres such as squatting or ‘derby chair’.
* Wearing of elastic stockings or an elastic suit.
* Raised upper body position during sleeping (15-30 cm).

Pharmacological procedures – Increase of blood volume
* Fludrocortisone initial dose of 0.1-0.2mg/d; up to a max of 1mg/d. Caution: cardiac insufficiency, hypocalcaemia, oedema.
* Erythropoietin 4000 IE s.c. twice a week. Caution: iron substitution; increase in haematocrit; hypertension.
* Desmopressin nasal application via pump spray, particularly indicated in nycturia. Caution: hyponatraemia, hypertension.

Pharmacological procedures – Increase of peripheral vasoconstriction
* Midodrine three times 2.5-10mg/d, up to a max 40mg/d; administration not later than 5 pm. Caution: supine hypertension, pruritus.
* Ephedrine three times 12.5-25mg/d. Caution: tachycardia, tremor, supine hypertension.
* Yohimbine two to three times 8mg/d p.o. Caution: diarrhoea, nervousness, panic attacks.
* Caffeine 250mg (=2 cups of coffee) in the morning. Caution: tachyphylaxia.

[fludrocortisone = Florinef; erythropoietin = EPO; desmopressin nasal spray = Stimate or DDAVP Nasal Spray; midodrine = Proamatine]

Improving diagnostic accuracy of PSP-P

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PSP folks –

This article was written by two heroes of the PSP community — David Williams, who is now in Australia, and Andrew Lees, in the UK.

“The aim of this study was to identify particular clinical features (green flags) that may be helpful in differentiating PSP-P from…other disorders.”  PSP-P, the parkinsonism form of PSP (progressive supranuclear palsy), is easily confused with Parkinson’s Disease (PD), multiple system atrophy (MSA), and vascular parkinsonism.  The issue is that the PSP diagnostic criteria include symptoms that are specific to the dementia form of PSP.  But what if someone with PSP-P comes along?

In this study, researchers compared many Queen Square Brain Bank cases:  37 patients with PSP-P, 444 with PD, 46 with dementia with Lewy bodies (DLB), 90 with MSA, and 19 with vascular parkinsonism.

By the way, a total of 127 PSP brains from QSBB were examined.  Of those, 86 had Richardson’s Disease, or the dementia form of PSP, while 37 had PSP-P.  (Four cases must’ve had rare forms of PSP.)  The researchers describe this division as follows:

“PSP cases were further divided according to their clinical features present in the first 2 years of disease. When the clinical notes recorded falls, supranuclear gaze palsy, abnormal vertical saccadic eye movements or cognitive decline within the first 2 years patients they were classified as RD (n = 86). Patients were classified PSP-P when their history included asymmetric bradykinesia, rigidity, a positive L-dopa response or tremor, and the cardinal features of RD were not present (n = 37).”

That breakdown — 29% with PSP-P and 68% with RD — is roughly what we see in our local support group:  most have the dementia form of PSP but about a third have the parkinsonism form.

The authors state:  “The clinical differences between RD and PSP-P are most likely to be due to differences in pathological severity.”  (By the way, an effort is apparently on to rename the dementia form of PSP to “Richardson’s Disease,” or RD, rather than Richardson’s Syndrome.)

Past studies have shown that the diagnostic accuracy for RD is much higher than that for PSP-P: 86% vs. 41%.

After comparing the clinical records, researchers found no clinical features “predictive” of PSP-P.  (No wonder this form of PSP is so hard to diagnose!)

In distinguishing PD, DLB, and PSP-P, three clinical features were found to be most important:  “late drug induced dyskinesias, late autonomic dysfunction, and any visual hallucinations.”  These three symptoms are very uncommon in PSP and “may be helpful exclusion criteria.”  Note that none of these three features is an early symptom.

Researchers also found many features to distinguish MSA and PSP-P:

“Late non-specific eye symptoms and supranuclear gaze palsy were good discriminators of PSP-P. Three other clinical features, when calculated with respect to a diagnosis of MSA, appeared to be reasonable discriminators of MSA, including early autonomic dysfunction, late autonomic dysfunction, and late cerebellar signs, which occurred in more than 50% of MSA patients and less than 10% of PSP-P patients.”

These statements in the Discussion section about differentiating PSP from PD were interesting:

“The nature of bradykinesia has rarely been examined in detail in different diseases, but our impression is that rapid hypokinesia – reduced amplitude of movement, that is, fast and without decay, is more typical in patients with PSP than true bradykinesia typical of PD. Equally, fast micrographia and rapid hypophonia may also be clues to PSP pathology.”

This may be enough for most of you.  The abstract follows.

Robin

———————————–

Movement Disorders. 2010 Jan 27. [Epub ahead of print]

What features improve the accuracy of the clinical diagnosis of progressive supranuclear palsy-parkinsonism (PSP-P)?

Williams DR, Lees AJ.
Van Cleef Roet Centre for Nervous Diseases, Monash University, Melbourne, Victoria, Australia.

Progressive supranuclear palsy-parkinsonism (PSP-P) is a primary tauopathy characterised by neurofibrillary degeneration, which is frequently mistaken for Parkinson’s disease (PD), multiple system atrophy (MSA), and vascular parkinsonism (VP) at presentation. The aim of this study was to identify particular clinical features (green flags) that may be helpful in differentiating PSP-P from these other disorders.

We identified 37 patients with PSP-P from 726 patients archived at the Queen Square Brain Bank. Using a retrospective case notes review the clinical features were compared between the PSP-P group and Lewy body associated parkinsonism (PD, n = 444 and dementia with Lewy bodies (DLB), n = 46), MSA (n = 90), and VP (n = 19), using the chi(2)-test for proportions for a two-by-two contingency table.

The sensitivity, specificity, and positive predictive values (PPV) and negative predictive values (NPV) were calculated for individual clinical features. A specificity of >0.85 or a PPV of >0.85 were considered reliable discriminators.

No clinical features were predictive of PSP-P, but late drug induced dyskinesias (specificity 0.92, PPV 0.99), late autonomic dysfunction (specificity 0.94, PPV 0.99) and any visual hallucinations (specificity 0.94, PPV 0.99) were better in distinguishing PD and PSP-P than predicted using operational diagnostic criteria for PD. PSP-P shares many clinical features with PD and DLB, MSA and VP, but visual hallucinations, drug induced dyskinesias and autonomic dysfunction are very uncommon and may be helpful exclusion criteria.

PubMed ID#: 20108379   (see pubmed.gov for this abstact only – available at no charge)