Site presented by Bill Tillier
- Dysphagia means difficulty swallowing. Here is an excellent overview from the Outlook magazine (2003) of the Myositis Association of America.
- In from 40 to 85% of IBM cases, people will develop weakness in the pharyngeal muscles, the muscles used in swallowing, resulting in dysphagia.
- Dysphagia in IBM is common but underreported by the vast majority of patients if not specifically asked for. In practice, two questions reveal problems: 'Does food get stuck in your throat' and 'Do you have to swallow repeatedly in order to get rid of food'. See articles here. 2008 2009 2012 2014 2016
- A 2006 textbook on dysphagia.
- A 2012 textbook on dysphagia.
- A 2015 textbook on dysphagia.
- This weakness is generally progressive and if present should be evaluated and reviewed for treatment.
- Dysphagia is characterized by food getting stuck "half way down" resulting in choking episodes. In some cases, during these episodes food gets drawn into the lungs, a situation called aspiration. When this happens, pneumonia often develops.
- In IBM patients, dysphagia is a significant cause of death from respiratory complications associated with aspiration pneumonia.
- The following general advice applies to anyone with IBM:
- To reduce the risk of choking while eating, a few simple rules will help.
- Eat in a very slow and deliberate manner, concentrated on what you are doing.
- Before swallowing, take a drink to wet your throat.
- Take small bites and chew well.
- Above all, do not rush and do not speak or attempt to have a conversation while eating.
- If you feel that food is not going down or is stuck, take a very small sip of liquid and swallow, this often loosens and lubricates the food to pass. Once the food has passed, take a larger drink to fully clear the throat.the
- If possible, do not eat while alone.
- Never eat in bed or while reclining.
- Certain foods may be more difficult for you to swallow, if this is the case, either avoid these foods or be extra careful.
- One recommendation is to eat foods in groups, for example, when eating a hamburger, separate the bun from the hamburger and eat them separately. The consistency of the food is important, especially of bread, doughnuts, potatoes and other doughy foods.
- It is optimal if you speak to your companion in advance as to what to do if you do choke. Patting a person on the back is now seen as a marginal approach, the best technique is the Heimlich Maneuver.
- How to perform the Heimlich Maneuver on a Person in a Wheelchair
- Step 1 Ask, "Are you choking?" to a person who is coughing, able to speak and not turning blue. A person who is choking will likely not be able to reply verbally.
- Step 2 Remain calm and encourage the person to do the same. Try speaking to him or rubbing his back or arm to calm him.
- Step 3 Look for signs that the person is suffering from total airway obstruction. These signs include the victim being unable to make any sounds above a wheeze, the face turning blue and hands clutching the throat in the universal symbol for choking.
- Step 4 Engage the wheelchair's brake if it's not already on, or turn off a power chair.
- Step 5 Try to perform the maneuver from the back, standing behind the person's wheelchair. If the back of the wheelchair is too high, do the maneuver from standing in front of the person (with him or her still sitting in the chair).
- Step 6 Lean the person forward, moving her head and torso down at a slight tilt.
- Step 7 Make a fist with one hand.
- Step 8 Place your fist just above the person's navel with your thumb in contact with his body.
- Step 9 Grab hold of your fist firmly with your other hand.
- Step 10 Make a quick in-and-up thrust against the person's diaphragm. You may need to repeat thrusting several times before the object is expelled.
- Step 11 Repeat until the choking person can breathe, the object is expelled or the person loses consciousness. If necessary, lay the person flat and do the maneuver as pictured above.
- Step 12 Call for medical help using 911 or another emergency number if necessary.
- The feeling of choking often results in panic, when choking you need to tell yourself to relax and be as calm as possible until the episode can be resolved.
- Sadly, many elderly IBM patients with dysphagia develop malnutrition because they are afraid to eat, or eat foods that are nutritionally inappropriate but are easy to swallow, for example, ice cream.
- If you are an IBM patient and you feel you are developing difficulty swallowing you need to discuss this with your doctor who will refer you to a specialist for evaluation and treatment. Speech therapists often assess swallowing difficulties and there are tests that can be done, for example a barium swallow.
- Treatment may involve exercises or in some cases an operation on the
- There is a muscle at the top of the esophagus called the cricopharyngeus. This muscle is normally contracted, closing off the top of the esophagus. Normally, when a person swallows this muscle momentarily relaxes opening the top of the esophagus allowing food to pass into the stomach. In some cases, individuals who have trouble swallowing may have a procedure (a myotomy) to disable this muscle, facilitating the passage of food into the stomach.
Injuries caused by tripping and falling are a major risk in IBM patients. Three basic falling scenarios are described. Some patients benefit from leg or ankle braces (Knee-Ankle-Foot Orthosis - KAFO) or (Ankle-Foot Orthosis - AFO).
A KAFO is a long-leg orthosis that spans the knee, the ankle, and the foot in an effort to stabilize the joints and assist the muscles of the leg.
- Falls caused by toe drop.
- Toe drop is the situation where when taking a step the toe does not rise high enough causing the toe to stub and the individual falls forward onto their knees. In IBM, this is caused by weakness in the muscles in my leg responsible for lifting the toe. These falls are often one of the first symptoms noticed by the patient with IBM. A common example is a person stepping up onto the curb and not having the foot go high enough causing the toe to bump into the curb and tripping.
- Falls caused by losing one's balance.
- These falls are often experienced as in "slow-motion," you start to lose your balance and realize that you're falling but you cannot stop yourself and you slowly fall over "like a tree falling in the forest." These falls can often result in back and head injuries. Walking on uneven surfaces like lawns is difficult for the IBM patient causing these kinds of falls.
- Falls caused by collapse of the knees.
- In these falls, the knees collapse without warning and you fall straight down, landing on top of your feet. These types of falls are often experienced instantaneously and you are on the ground before you feel that you are falling. These falls can easily result in knee and ankle injuries.
Generally speaking, edema is a swelling of tissues caused by a pooling of excess fluid. It is often associated with people who are stationary for long periods of time causing fluid to accumulate in the ankles and lower legs. There can be several complications of untreated edema, in the worst case, the fluid can compress the tissues to the point that blood circulation is impaired resulting in damage. The best treatment for this is prevention through the use of pressure stockings which help reduce the pooling of fluid and keep the circulation moving. Unfortunately, these stockings are very difficult to put on by yourself when you have weakness in the hands.
The gentlemen in these pictures have not had proper management (with the use of pressure stockings) to prevent edema and they now face potentially serious complications.
Here is an example of a pressure stocking.
It is important to understand that other medical conditions can also cause edema and if you have swelling you should consult your physician to rule out other problems. As well, your doctor should recommend a strength of compression, the stockings come in different strengths. Usually the doctor will prescribe a stocking; this is better than just going to the drug store and buying one off-the-shelf.
Edema is made much worse by high salt intake and generally speaking, salt should be severely limited in your diet. Flying can also exacerbate edema because of the changes in pressure.
Also see the section on practical coping strategies
- It is important to realize that the effects of IBM on one's lifestyle
may produce secondary issues.
- For example, as mobility is restricted one's dietary intake should be reduced to avoid weight gain.
- Restricted mobility, especially when using a wheelchair may be related to the development of edema in the lower legs and this should be monitored. Edema can be prevented or limited by the use of pressure stockings and the restriction of salt in one's diet.
- Restricted mobility is also an issue in skin care. Skin is prone to
damage from excess moisture and hygiene is particularly important as
urine is a major irritant. Sitting for long periods of time in one position
can cause creases and blisters in the skin. Finally, attention must
be paid to sleeping as remaining in one position for long periods of
time can result in the development of pressure sores. Pressure sores
can result in the breakdown of skin or, in more serious cases, of underlying
muscle tissue. These skin related complications can be very difficult
to treat, therefore prevention is the best strategy.
- IBM presents a significant risk of developing bed sores. Pressure sores or bed sores are a serious complication of people who are relatively immobile. As well, the major muscle atrophy in the thigh muscles seen in IBM adds to the risk. Pressure sores have several major aspects. One is the simple but constant pressure from gravity as it pulls the body down. In cases where it is difficult (or impossible) to move or turn over in bed, pressure sores can rapidly develop (in as little as 12 hours). In cases where there is major muscle atrophy, usually the hip bone pushes down on the thigh muscles (and skin) impairing the circulation and breaking the tissues down. The key to prevent this is to have a soft mattress and to move around enough that a "spot" of damage does not "buildup". In some cases, a special type of mattress surface can be used (often a rubber honeycomb type of pad that cushions the "boney spots.") These sores can also occur if you sit in a chair too long in one position. Another major issue is shear. Shear occurs when your body shifts its weight in one direction, but the skin does not move, it adheres to the surface under you. Sliding down in a bed or chair more than 30 degrees is especially likely to cause shearing, which stretches and tears cell walls and tiny blood vessels. Especially affected are areas such as your tailbone where skin is already thin and fragile. In IBM, shear is a problem as it is difficult to turn using the arms and as the natural tendency is to try to turn over in our sleep, the skin often "sticks" to the covers or mattress and shear forces are created (the body tilts over but the skin does not move (it feels like there is a piece of tape holding the skin from moving). The best solution to this problem is sleeping with the skin directly on a natural sheepskin. The best results are with a fairly thick pile (the thicker the cut, the better). The sheepskin also helps to prevent moisture (sweat) buildup, another major factor that contributes to skin irritation. If excessive mositure builds up, especially in the presence of urine or feces, there can be rapid skin irritation. In cases of IBM, pain perception is usually intact and you will feel your hip getting sore. Do not ignore these pain signals. Lack of pain perception and sensation is a major complication in some cases, usually involving spinal cord injuries or disease. Whatever the cause, an inability to feel pain means you're not aware when you're uncomfortable and need to change your position or that a bedsore is forming, This situation requires active management and careful monitoring.