Freezing in Parkinson's Disease

Not all patient’s with Parkinson’s experience “freezing” (a temporary inability to move); but in patients who are prone to freezing episodes, FALLING is a risk. 

(Freezing does not only occur when walking, but can also be observed when eating, lifting a cup, or trying to remember something.)         

 What triggers a freezing episode? 

 

It’s unpredictable, but freezing usually happens when something interrupts the usual flow of movement or normal sequence of events—it can happen during walking, eating, lifting a cup—or trying to remember something . . .

Patient’s who experiencing a freezing episode literally feel “stuck” to the floor or to their chair. 

  

Some of the typical triggers for a "freezing" episodes that occur while walking include:

• Walking towards doorways, chairs, or around obstacles
• Turning or changing directions, especially in a small space
• Entering an elevator
• Becoming distracted by another task or conversation when walking
• Crowded, cluttered spaces or a highly patterned floor
• Parkinson’s medication wearing off or not working very well
• Walking from one texture of flooring to another (for example: going from smooth floor to carpet, or vice versa)

Many patients who experience "freezing" may notice that different tricks (or "cues") can help them "unfreeze."  Here are some ideas to consider:

·  Remain calm, take a deep breath, and think it through.(No one should prod or pull the patient—they could fall.)

·  Concentrate on shifting the weight to one leg—THEN take a step.

·  Change direction:  step sideways first, THEN go forward

·  Shift the focus to another movement (raise an arm, point to the ceiling, etc.); THEN restart.

·  Say: “One, Two, Three—STEP”:  THEN restart  (or start humming a rhythmic tune)

·  Carry a laser pointer—shine it in front of the foot and step on the light—this is a “restart cue” (there are actually special canes made with lasers embedded for Parkinson’s patients.)

·  Tape the floor of trouble spots in the room (corners or furniture or door thresholds) as a visual cue (step on or over the tape).

·  March in place when coming to a halt at a trouble spot to keep moving and avoid a "freeze."

·  Step over an imaginary line to take the first step.

Check out these links for more information about "Freezing" in Parkinson's Disease (or just learn more about Parkinson's in general:

Freezing: Parkinsons Information Sheet (from Parkinsons.org in the UK)

Freezing in Parkinson's (pdf version from the UK Parkinson's webpage)

"Caring for Your Patient with Parkinson's" (This is a very nice, concise booklet for caregivers OR for family)

"Cueing for People with Parkinson's Disease" (Tips for helping someone "unfreeze." A publication of the RESCUE Project, Northumbria Univ. in the UK

"Freezing in Parkinson's" (From the Parkinson's Disease Society)

Parkinson's Disease Foundation (Order publications or learn online at this comprehensive, educational site)

National Parkinson Foundation (Learn online and download helpful publications)

Parkinson's Article from the National Institute of Neurological Disorders and Stroke

Patients with "Bad" Veins Can Prepare in Advance for IV Starts or Blood Draws

          Frequently I have cared for patients with challenging veins.  I prefer to call them "challenging," rather than "bad."  No one wants to be poked and prodded to have their blood drawn or have their IV therapy initiated.  It can be both painful and scary, as a patient, being advised that your veins are "bad" can actually be taken as an insult.  The patient may just feel that the nurse is "bad" at doing the sticking.  To  me, psychologically, it's better to begin with the right terminology to put the patient at ease.

          I have some techniques that have allowed me to have an extremely high rate of IV start success with challenging patients, but as a patient--there are some things that you can also do.  Here is my advice . . .

1.  Push fluids 24 hours prior to your blood draw or IV therapy.  Of course this is not always possible.  But many patients DO know that they will be needing a blood draw or a scheduled infusion on a regular basis. In such cases, really pushing oral fluids the day prior to the IV stick will make a difference.  UNLESS you are on fluid restriction, for some reason, try to take in at least three full glasses of water the day prior.  That extra fluid can make a wonderful difference in plumping up challenging veins.

2.  "Dangle" your hand or arm prior to the IV stick.  Gravity is your friend when it comes to dangling your hand or arm.  Instead of sitting with your hand or arm on the armrest or your lap, if you lower your arm straight down at the side of your chair while waiting for the nurse or technician to assemble the equipment, your veins in that extremity will be a bit plumper, due to gravity pooling some of your blood there.  This can really help.

3.  Apply heat to your veins. Nurses and phlebotomists know that heat applied to the skin above the vein will dilate the vein, making it plump up with blood and helping you have an easier stick.  However, you can't rely on a heating pad or any such helpful device actually being available to the staff.  (I have seen some really creative ways of trying to "make" some applied heat--not always a safe thing to do).  What you can do as a patient is use a hot water bottle that you have prefilled at home--keep it applied to your typically "best" veins to encourage a successful experience.  As an infusion nurse, I always had a heating pad tucked away for a particular patient--or on a day when the weather was so cold that "everyone" seemed to have hiding veins.  Again, that is not something you as a patient can depend on . . . Do ask if there is a blanket warmer available wherever you happen to be (ER usually has those)--wrap a pre-warmed blanket around the arm, and you can get some very good results.

4.  Suggest a vein, but allow your nurse to give a professional opinion.   When I get blood drawn, I usually point and say, "Right there."  But I have great veins, so no problem.  When an experienced provider starts looking at your veins, they make pretty quick judgments about where to go for the IV stick.  I have had situations where I've made my decision and have my needle poised, only to have the patient pipe up with, "You'll never get it there, no one ever does."  Well, actually I may well get it there, but I want every patient to have the right to tell me what works for them--but I'd prefer they tell me right up front.  

5.  Just breathe.  Some patients are better than others about relaxing during their venipuncture.  Some patients go so stiff and tense when the needle touches their skin, that it feels as if their arm has turned to stone.  When very anxious, doing some deep cleansing breaths (getting oxygen to the brain) can only help.  The easiest way to to this is breathe slowly and steadily IN through the nose for a count of 5 and then slowly releasing the breath--on another count of 5.  

6.  Be cautious with the IV.   It seems ridiculous to have to recommend caution, but I have seem some patients who have a hard time with the IV start, soon after start rummaging through their purse and dislodge the catheter!!  Please, don't be that person.  I'm not suggesting you sit completely still--just suggesting that you are extra careful for the duration of your infusion.

Later I'll post some of my favorite tips for the nurse starting an IV on a patient with challenging veins.

If you have a tip to share for patients with difficult veins--please feel free to share that in the comments section below.

Which Vaccines are Live?

(12/18/20:  Sorry for the typos, I will try to update this chart soon.)

 Sources of Information for Vaccines:

• Vaccine Information Statements (VIS): Available in many languages.
• CDC Vaccine Information Statements: Available in an audio version and in Spanish
• National Vaccine Information Center
• National Network for Immunization Information

Basic Information about Dense Deposit Disease (one of the rarest of the rare diseases . . . )

Introducing Jamie Sue

Jamie Sue Turner of Runnells, Iowa is 8 years old and in the second grade. She’s somewhat of a girly-girl favoring the color pink, singing and dancing, and Disney TV fare such as “Hannah Montana.” Her beauty is certainly more than skin deep, yet her wide smile and large, expressive eyes  no doubt added to the "total package" that won her a tiara in a children's beauty pageant at the Iowa State Fair in 2009. But little girls are made of sugar AND spice, are they not? In addition to hobbies like scrapbooking, Jamie Sue is a tough cookie who plays on a youth softball team in the summer.

Until recently, Jamie Sue has enjoyed the kind of idyllic childhood that we all cherish. Her life has revolved around her large family, many friends, pet dogs, hobbies, school and social activities. Due to circumstances beyond her control, Jamie has spent much more of her time at the University of Iowa Hospital in Iowa City than she has at home over the past 10 weeks. You could say Jamie has added another dimension to her active life, and she’s proving that in addition to everything else, she is a tenacious fighter.

Jamie Sue was the picture of robust health until something alarming occurred on December 15, 2009. That evening her ankles were unaccountably swollen. The next day Jamie Sue was at her doctor's office where it was revealed that her kidneys were responsible for the fluid retention.  Early treatment and intervention didn't resolve the symptoms, and her journey within the medical system was well underway . . .  A kidney biopsy early in the course of her illness established a diagnosis of Dense Deposit Disease, a rare autoimmune condition that affects the kidneys.

Dense Deposit Disease (DDD) is the second, and more serious, type of Membranoproliferative Glomerulonephritis. DDD usually leads to chronic kidney failure and the need for regular kidney dialysis. Typically there is a window of time (8-10 years) before the disease damages the kidneys to that extent. Unfortunately, Jamie Sue is an exception to the rule. Her experience with DDD has been rapid and unrelenting so that she is already battling imminent chronic kidney failure as physicians strive to slow the progression of the disease. At the moment, Jamie Sue is receiving a combination of plasmapheresis and occasional renal dialysis for two purposes: to prevent her immune system from continually damaging her kidneys by removing the certain "bad" proteins from her blood, and to cleanse her blood of toxic waste products and excess fluids. Soon Jamie expects to begin clinical trials to determine whether a hopeful new medication may better spare her kidneys from continued damage by her immune system.

About Dense Deposit Disease

 

It’s been written that Dense Deposit Disease (DDD) is rare even among rare diseases.  DDD makes its appearance in childhood, usually between the ages of 5 and 15 years of age.  Experts have estimated that DDD occurs in only two to three people out of 1 million. We can do the math to demonstrate how DDD is “rare among rare” diseases. Taking a rough estimate of 304 million U.S. citizens and expecting to find 2 to 3 cases of DDD per 1 million, we can estimate that significantly less than 1,000 Americans would be afflicted with Dense Deposit Disease. To gain even more perspective, keep in mind that in the U.S. diseases are officially designated as “rare” when less than 200,000 Americans are affected. (So even if there were 200 times more cases of DDD in the U.S., this condition would still fall into the “rare” category.)

 

Basic Information about Dense Deposit Disease

 

A lot of great scientific articles have been written about Dense Deposit Disease. This blog entry doesn’t pretend to be one of them. Instead, this piece intends to take a complicated disease and break some of the key features into understandable concepts in order to help parents, family, and friends be better informed about this condition. When a serious illness affects a child that we love, we want to learn as much as we can in order to be helpful and supportive. As parents we want to know as much as possible in order to advocate for our children. Scientific literature is written in a language all its own and often with explanations that may include unfamiliar and confusing terms. (It’s always best to jot down specific questions as you think of them to ask your child’s physicians). For a great website written by experts who manage and study Dense Deposit Disease, visit the University of Iowa’s website devoted to DDD, it's called Kidneeds, and if you are affected by DDD in some way, you will want to check it out.

What’s in a Name . . . ?

In medical jargon, many diseases and conditions have more than one name. When you are looking for information about Dense Deposit Disease, you will also see it referred to as Membranoproliferative Glomerulonephritis Type II (or MPGN II). Scientists originally felt that Dense Deposit Disease was a variation of two similar types of kidney diseases, therefore it was differentiated by calling it “MPGN Type II.” However, in recent years scientific research has discovered that the unique features of this particular variation makes the name Dense Deposit Disease more appropriate. So although MPGN II is an “older” term, you will still see it in literature about this condition.

What are Dense Deposits?

Physical signs and symptoms are present when the kidneys are functioning poorly.  Nephrotic Syndrome, is a term that refers to the combined signs and symptoms that occur when the kidneys are unhealthy.  More information and test results may be necessary before the physician is able to pinpoint a specific reason for the kidney dysfunction.

A kidney biopsy is necessary to diagnose DDD. This procedure gathers evidence of the underlying reason for kidney damage and allows the physician to make a definite diagnosis. When the tissue from the biopsy is examined with an electron microscope, the unique features of Dense Deposit Disease are clear to the trained eye. As the body’s immune system has malfunctioned, certain proteins have "gone crazy" and started to attack an important membrane deep within the kidneys; bits and pieces of the rogue proteins end up "stuck" to the kidney’s membrane in thick ("dense") ribbon-like patches ("deposits").

An Autoimmune Disease

Dense Deposit Disease is an autoimmune disease.  This means that the patient with DDD is suffering an attack  from within; their kidneys are damaged by their own immune system.

In theory our immune system protects our bodies from outside invaders such as viruses and bacteria.  Sometimes, for reasons that are not well understood, a “glitch” in the immune system causes it to go out of sync.  The out-of-sync immune system triggers proteins that usually protect us to, instead, attack healthy tissues within our bodies by mistake. There are more than 80 different types of autoimmune disorders; each one has resulted from a glitch that is aimed at a specific organ or tissue type. Some well-known examples of autoimmune diseases and their specific targets include Multiple Sclerosis in which nerve sheaths are damaged; Lupus, which affects connective tissue throughout the body; Type 1 Diabetes in which insulin-producing cells of the pancreas are destroyed; and Crohn’s Disease and Ulcerative Colitis which both affect the lining of the digestive tract. Autoimmune disorders are chronic in nature meaning they are not reversible, but there are specific treatments for most autoimmune illnesses that can control or manage the condition.

Why an autoimmune illness affects one person and not another is still a mystery. Roughly 5% of the population is afflicted by some type of autoimmune condition. A number of theories have been introduced to try to explain what goes wrong.  Heredity, environmental factors, viruses and certain drugs have been suggested. It may be that a combination of just the “right” factors is all it takes for the immune system to make a mistake that will spiral out of control and direct damage towards a specific tissue in our body. Much research is directed towards unlocking the secrets behind what really triggers an autoimmune disease. It’s intriguing (and frustrating) that over the years evidence shows that even with identical twins, one twin may be afflicted by an autoimmune disease while the other stays completely healthy.

Glomerular Basement Membrane

An anatomy and physiology reference is the best source for an in-depth understanding of the intricate and complex means in which the complement proteins of the immune system attack and damage the glomerular basement membrane (GB Membrane) in Dense Deposit Disease. However, I can give you a few key points in layman’s terms to provide a very basic understanding of what this illness entails.

The glomerular basement membrane is the part of the kidney that filters extra fluid and waste products out of the blood. On one side of the GB Membrane is the bloodstream, on the other side of the GB Membrane is urine. The fluid and waste that are filtered out of the blood cross the GB Membrane to become components in urine and are ultimately eliminated from the body in the usual way. 

When the immune system damages the GB Membrane, it no longer filters properly. Proteins that circulate in our blood have various important "jobs" to perform within the body so we certainly don't want to lose them. When our kidneys are healthy, there is very little chance of that happening.  Proteins are simply too large to go across a healthy GB Membrane. Unfortunately, a damaged GB Membrane does allow those large proteins to be filtered through, and with terrible consequences. When these useful proteins cross the GB Membrane, they are eliminated with the urine.  Because they are gone from the bloodstream, the specific jobs they are supposed to perform in the body are jeopardized.

(If you are having trouble visualizing this concept, imagine a trampoline--when the fabric is tight we can hit the surface and bounce back off without fear, but if we happen to bounce on a patch of fabric that is loose and frayed we may fall right through and hit the ground instead.  Instead of "bouncing off" the GB Membrane as they normally would, the large proteins go right on through the weakened membrane and are lost to the body when they are expelled by urination.)

With kidney disease the loss of proteins in urine results in a “Catch 22 scenario.” The same proteins that leave the body when the kidneys are damaged have functions that include absorbing unneeded fluids in the bloodstream. Without these proteins to soak them up, the extra fluid in the blood seeps back into the tissues and causes swelling (edema). Importantly, in addition to fluid, dangerous waste products such as creatinine and urea are also retained in the bloodstream.  These waste products eventually become toxic to tissue.  If the kidneys become too diseased to handle removal of these substances, kidney dialysis is essential.

High Blood Pressure, too . . .

 

Along with fluid retention from poor kidney function comes sodium retention.  Damage to the kidneys also causes an increase in a hormone the kidneys produce (called renin).  These three factors combine to cause dangerously elevated blood pressure which must be treated by medication. 

Signs and Symptoms of DDD

The early signs and symptoms of poor kidney function may be subtle.  When the kidneys are unhealthy enough to allow protein to enter the urine, the urine that is voided is often fizzy or frothy looking.  Red and white blood cells may also leak into the urine.  White blood cells tend to make the urine cloudy, while red blood cells may cause a red or pinkish hue (or they may only be detected by a lab test and not visible to the naked eye.)

More dramatic and obvious signs of kidney problems include:

• “Puffiness” or swelling (called edema) around the eyes, feet and ankles, hands, and abdomen.
• A general inability to concentrate and mental confusion.
• Dark, "tea-colored" urine. Dark urine is a symptom of glomerular problems and it is related to the inability of the kidneys to properly filter the waste products from the blood.(But dark urine can also be caused by other conditions and can even result from eating certain foods.) 

Treatment

Plasmapheresis is one way in which DDD is treated. Plasma is the “watery” part of our blood.  Among other things, plasma carries the components of the immune system that cause damage to the "good cells” in people with autoimmune illnesses. In DDD the object is to preserve kidney function for as long as possible, removing the damaging immune components has proven to be a helpful means of doing so.  This is done by plasmapheresis in which the patient’s blood is filtered through a machine that removes their plasma and replaces it with plasma from a donor. The donor plasma doesn’t contain the damaging autoimmune components, so the kidneys get a temporary break. With DDD, the patient's body will eventually produce more of the "bad" immune system proteins which will again be circulated in the bloodstream.  

Over time the damaging effects of DDD leads to chronic renal failure (abbreviated as CRF and also simply called "kidney failure").  About 50% of all individuals diagnosed with DDD will require regular dialysis within 8 to 10 years of diagnosis in order to stay alive. 

Kidney transplants have been performed on patients with DDD, but the nature of the disease makes this only a temporary benefit. The body attacks the donor kidney in the same manner that it attacked the original and the donated organ eventually fails. For patients with DDD and their potential kidney donors, the risk of transplant versus the limited benefit to the recipient makes it difficult for the medical establishment to easily recommend this option. 

Back to Jamie Sue . . .

Lately, as Jamie Sue ponders the future she envisions a career in medicine.  She wants to be a doctor.  She can do that.  She can do anything she wants to do.  Individuals with autoimmune conditions learn to adapt and live life to the fullest while managing their illness and undergoing whatever specific treatments that their disease requires.  Jamie Sue will do this . . . 

How Can You Help?

Support research that aims at finding a cure for DDD.  Participate in Fundraising via the Universtiy of Iowa's Kidneeds program which supports DDD research.

Donate Blood or Plasma.  Plasma donation is a great way to contribute and it costs only your time.  Learn more about the process in the article "Plasma Donation" from LifeShare Blood Centers.  

To learn more about blood donation opportunities and find a location near you:

• Visit American Red Cross website  or call them at 1-800-GIVE-LIFE (1-800-448-3543)
• Visit America's Blood Centers website or call 1-888-USBLOOD

All rights reserved for written content, Carolyn Cooper, MPH, RN, March 2010.

Photos of Jamie Sue Turner used by permission of Misty Turner; photos copyright of Misty Turner.

For Additional Reading:

National Kidney and Urologic Diseases Clearinghouse, "The Kidneys and How They Work"

National Organization for Rare Diseases, Membranoproliferative Glomerulonephritis Type II

Smith, R.J.H.; Sethi, S.; Zipfel, P.F. (2007). Dense Deposit Disease, Membranoproliferative Glomerulonephritis Type II, Accessed online.

Ferrario, F. & Rastaldi, M. P. (undated), Renal Pathology Learning, Type II Membranoproliferative Glomerulonephritis; Accessed online Mar. 3, 2010.

Appel, G.B.; Cook, H.T.; Hagerman, G.; Jeannette, J.C.; Kashgarian, M., Kirschfink, M.; et al. (2005 May; Epub 2005 Mar 30). Membranoproliferative glomerulonephritis type II (dense deposit disease): an update.  Journal of the American Society of  Nephrology, 16(5):1392-403.

Plasmapheresis, The free dictionary online, medical dictionary. 

. .. .

 

Links to Spanish Language Health Information (Patient Instructions in Spanish)

Spanish Discharge Instructions and other Health Teaching  

When making blog articles about specific healthcare teaching issues I look for links to reliable Spanish translations.  So many Google searchers are ending up at a recent blog entry that included some basic English/Spanish translation I decided to make a more helpful page that will lead searchers more directly to helpful and reliable Spanish language health information.  

Don't forget to use the search box in the right hand column to look further, but for now this page provides a variety of helpful links for the Spanish-speaking patient. 

Best Spanish Translation Books for Healthcare Workers:

I have used many Spanish/English healthcare translation books. Far and away my favorites, and the two that I recommend are Medical Spanish, An Instant Translator, by Nasr & Cordero, published by W.B. Saunders  and Spanish for Health Care Professionals, by W.C. Harvey, published by Barron's. 

Miscellaneous Spanish Language Health Information Links: 

Discharge instructions in Spanish for TURP (Transurethral Resection of the Prostate): "Reseccion Trans Uretral De La Prostata, Instrucciones Para Cuidado En Casa.”

• Allergy and Asthma Information in Spanish: Spanish translations from the American Academy of Allergy Asthma & Immunology including information about allergies, asthma, cough and more. Información sobre alergias, asma, tos y más.
• Topics in Spanish from the National Digestive Diseases Information Clearinghouse including information about colon polyps, diarrhea, constipation, cirrhosis, food borne illnesses, various types of hepatitis and more. Información sobre los pólipos de colon, diarrea, estreñimiento, cirrosis, enfermedades transmitidas por los alimentos, diversos tipos de hepatitis y mucho más.
• Information in Spanish about head lice or "Piojos de la cabeza":  .Center's for Disease Control and Prevention, Piojos de la cabeza and National Pediculosis Organization, Piojos de la Cabeza en Espanol.
• Consumer information about safety of cribs, drywall, fireworks, and more: Noticias sobre Cunas, paneles de yeso, fuegos artificiales y mas . . .   U.S. Consumer Product Safely Commission en ESPAÑOL with updates on the latest product safety and recalls: CPSC Spanish language page.  La CPSC, es una entidad reglamentaria federal, que protege al público contra riesgos irrazonables, lesiones y muertes asociadas con productos de consumo.
• Care of the JP (Jackson Pratt) drain from the National Institutes of Health:  Instrucciones después de la inserción de un tubo de drenaje "JP" y otras drenajes.
• Osteoporosis information from the Dairy Council of California:  Mantengan sus Huesos Fuertes, Consuman Productos Lácteos.
• Healthy eating and Meal Planning from the Dairy Council fo California:  Articulos y recetas sobre la Alimentación Saludable.
• National Institute of Health, a Variety of Surgery-Related Topics for download in Spanish.  Pre-operative/Pre-procedure Instructions, after care for these procedures: Biopsy, Bone Marrow Biopsy, Breast Biopsy, Bronchoscopy/Laryngoscopy/Esophagoscopy, Cardiac Catheterization Test, Catheter-Based Treatment, Colonoscopy, Dialysis Access Procedure, Drain Insertion, Endoscopy, Eye Surgery, Gynecologic Procedure, Interscalene Block, Kidney Biopsy, Montgomery Tube/Tracheostomy Placement, Muscle/Nerve Biopsy, Oral Surgery Sinus Precautions, Periodontal Surgery, Port-a-Cath insertion/removal, Septoplasty, Strabismus Surgery (for adults), Strabismus Surgery (for children), Tenkhoff Catheter Insertion, Tenkhoff Catheter Removal, Urological Surgery: cystoscopy, ureteral stent insertion/removal, bladder/prostate biopsy and Postoperative procedure/anesthesia instructions.  Pre-operative/Pre-procedure instrucciones, después de cuidar de estos procedimientos: Biopsia, Biopsia de médula ósea, biopsia de mama, Broncoscopia / Laringoscopia / Esofagoscopia, Cateterismo Cardíaco de prueba, basada en el catéter de tratamiento, la colonoscopia, la diálisis Procedimiento de Acceso, la inserción del drenaje, Endoscopia, Cirugía ocular, Gynecologic Procedimiento, interescalénico Block, la biopsia renal, Montgomery Tube / traqueostomía de nivel, músculo / biopsia de nervio, cirugía oral Sinus Precauciones, cirugía periodontal, Port-a-Cath de inserción / extracción, septoplastia, cirugía de estrabismo (para adultos), estrabismo Cirugía (para niños), Tenkhoff la inserción del catéter, Tenkhoff remoción del catéter, Cirugía urológica: la cistoscopia, la inserción de un stent ureteral / eliminación, de la vejiga / biopsia de próstata y el procedimiento postoperatorio / anestesia Instrucciones.
• Kidshealth, Teaching your kids about menstruation and puberty.  Talking to your child about Menstruation. Hablar con su hija sobre la menstruación.
• 24 hour urine test, patient instructions:  Procedimiento: Recolecta una muestra de orina de 24 horas.  
• Healthfinder.gov in Spanish.  A wealth of health information translated to Spanish is available here, including an encyclopedia of health topics from "the most reliable sources."  Healthfinder.gov en español le ofrece la información más actualizada para que usted y sus seres queridos se mantengan saludables con una Enciclopedia de temas de la salud de las fuentes más confiables.
• Disaster Preparedness (Spanish Version). Spanish version of suggestions for readiness in the event of a natural or man-made disaster.  Preparación para Desastres asesoramiento para la preparación en caso de un desastre natural o de origen humano.
• Caringbridge Website keeps loved ones in touch during times of crisis, information for Spanish-speaking patients and families.  Un sitio web CaringBridge ayuda a mantener informados a los seres queridos durante momentos difíciles. Por otra parte, los familiares y amigos brindan apoyo al paciente y a las personas encargadas de su cuidado a través de los mensajes del libro de visitas.

Worried about difficulty swallowing . . . (dysphagia)

If you've come to this blog entry, perhaps it's because you may have concerns about the swallowing ability of yourself or a loved one. Difficulty swallowing is frightening and it can obviously be dangerous.  Many of the underlying factors that make a person vulnerable for difficulty swallowing are related to muscle weakness from a variety of causes:  stroke, multiple sclerosis, and generalized developmental difficulties, etc.

Asphyxiation and Aspiration

Weakness of the muscles that allow food to pass from the mouth, down the esophagus, and into the stomach can cause  choking.  If the choking doesn't dislodge the food from the windpipe, it can become lodged there and result in asphyxiation when air can't pass into the lungs.

Choking can result in some food or liquid actually entering the lungs.  The medical term for inhaling food or liquid is aspiration.  Aspiration can hurt the lungs in various ways, often a severe case of aspiration pneumonia results..

Swallow Screening for Stroke Patients--Always Necessary

When a stroke is suspected, hospitals require that a "swallowing screen" be performed before a patient is allowed to have anything by mouth.  In addition, among the questions patients are asked when they are admitted to the hospital for any reason is, "Do you experience any difficulty swallowing?"  If they answer, "yes," or give any other clues that make the admitting RN suspicious, the swallowing screening test is easily performed.

RN Swallow Screening Guidelines

Each hospital will have their own particular screening procedure.  This is an example taken from my personal experience in a facility where I was employed, and I'm presenting it to give you an idea about the factors that help define swallowing difficulty.  The RN performing the screening needs applesauce (or if patient is allergic something of the same consistency, like pudding), a graham cracker, and a spoon.  The patient cannot be lying down for this exam.  They need to be sitting almost at a right angle, and suction needs to be readily available in case the patient needs quick intervention.

Positioning

• Elevate the head of the bed at least 70 degrees
• Support the weak side of the body with a pillow if appropriate.  (This keeps the patient from slouching to the weak side.)
• Perform each step of the screening  (bites or sips) in this order and STOP if any item would cause a check on the documentation checklist at any point in the screening.

Procedure

1.  Give 1 teaspoon of applesauce. Watch for any signs and symptoms of dsyphagia (see checklist below.) STOP if any item is checked. If no signs or symptoms Repeat with a second teaspoon. If no signs and symptoms after the second spoonful, proceed to step 2.

Checklist:
__Holds food in mouth without initiating swallow or spits food out
__Significant facial droop with food or liquid coming out of mouth (Facial droop:  one side of the face droops from muscle weakness)
__Pocketing of food/drink in mouth or cheeks (Pocketing:  instead of swallowing, the food/fluid is kept in the mouth, usually held in the "pocket" between the bottom cheek and gums--like a chipmunk holds nuts.)
__Suctioning required during assessment
__Food or liquid coming out of nares (the nose "holes")
__Choking or persistent coughing during any stage of the swallowing screen
__Eyes reddening or tearing
__Wet, gurgly voice
__Patient reports painful swallow or food lodged in throat
__Labored breathing or moist breathing sounds (known medically as "rales")


2.  Give patient one teaspoon size of thin liquid (nurse is to control the amount of liquid placed on the spoon for patient to sip.)  If successfully swallowed, allow the patient to give self a second sip independently. STOP if any sign or symptom occurs.
 
Checklist:
__Holds food in mouth without initiating swallow or spits food out
__Significant facial droop with food or liquid coming out of mouth
__Pocketing of food/drink in mouth or cheeks
__Suctioning required during assessment
__Food or liquid coming out of nares (the nose "holes")
__Choking or persistent coughing during any stage of the swallowing screen
__Eyes reddening or tearing
__Wet, gurgly voice
__Patient reports painful swallow or food lodged in throat
__Labored breathing or moist breathing sounds (known medically as "rales")


3.  Give the patient a graham cracker and ask him or her to take a bite, chew it up, and then swallow.  If successful, offer the rest of the cracker. STOP if any sign or symptom occurs.
 
Checklist:
__Holds food in mouth without initiating swallow or spits food out
__Significant facial droop with food or liquid coming out of mouth
__Pocketing of food/drink in mouth or cheeks
__Suctioning required during assessment
__Food or liquid coming out of nares (the nose "holes")
__Choking or persistent coughing during any stage of the swallowing screen
__Eyes reddening or tearing
__Wet, gurgly voice
__Patient reports painful swallow or food lodged in throat
__Labored breathing or moist breathing sounds (known medically as "rales")


4.  Document results on the sticker and place it in the physician's progress notes.
5.  Obtain an order for a Speech Therapy consult if patient fails screening.
If one or more items are checked in any phase of the screening, the swallowing screen is FAILED.  The patient is to be kept NPO or "nothing by mouth."  Speech pathology consult is ordered.

• If NO items are checked, then the screening is PASSED.
• If the patient passes only on the applesauce (step 1), check with the physician to see if medications may be given crushed and mixed in applesauce while wating for the speech consult.

What can you do?

If you live with someone who is at risk for aspiration because of difficulty swallowing, make sure that their physician is aware of this and follow his or her advice and recommendations.  If they haven't suggested it already, ask for a Speech Pathology evaluation for your loved one.  In some cases, thickened liquids and specific consistency of foods will be recommended.  There are other important tips that a Speech Pathologist will teach you to help you or your loved one prevent aspiration and asphyxiation because of dysphagia.

Also, if you haven't already done so,  learn CPR and the Heimlich Maneuver so that you will be able to quickly intervene on behalf of your loved one. 

• Find a CPR class via the American Heart Association or the American Red Cross

Read more about dysphagia, check out the hyperlinks in this article for additional reading.


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