THE TIN MAN GUIDE TO STIFF-PERSON SYNDROME
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HOUSEBOUND/BEDRIDDEN

There are special considerations for patients who become housebound and/or bedridden. Prolonged immobility has a cascade effect throughout the body.


Weakness, loss of independence, and limited mobility can lead to depression, anxiety, restlessness, irritability, boredom, apathy, disorientation, passive-aggressive verbal and nonverbal communication, mood swings, listlessness, withdrawal, social isolation, regression, altered body image, and feelings of helplessness.


Lack of stimulation and social isolation increases the risk of depression. Sleeping through the day disrupts your circadian rhythm and interferes with restful sleep, increasing exhaustion, lack of concentration, and irritability.


Blood pools in the legs, increasing the pressure on the vessels and reducing circulation. This makes the heart work harder to pump the blood through the system. There is additional risk of edema (swelling) and blood clots. The small blood vessels are damaged. Blood pressure can drop when you stand, leading to orthostatic hypotension which makes you feel lightheaded and increases the risk of falls.


Immobility and decreased weightbearing spikes the release of epinephrine, norepinephrine, thyroid hormones, adrenocorticotropic hormones (ACH) from the pituitary gland, and aldosterone from the kidneys that mimic those of the stress response, resulting in metabolic fatigue.


Immobility alters the metabolism of carbohydrates, fats, and proteins and causes fluid, electrolyte, and calcium imbalances. There is an increase in serum lactic acid and a decrease in ATP. Protein and glycogen synthesis decrease. This increases glucose intolerance and reduces muscle mass. Fat stores increase. Calcium drains from long bones, causing kidney stones and osteoporosis, and increasing the risk of fractures of the vertebrae, hips, pelvis, and shoulders.


You may experience a loss of appetite due to reduced activity, resulting in weight loss or malnutrition. Conversely, you may overeat due to depression or boredom. You are not burning many calories, so diet restrictions would be necessary to prevent morbid obesity. The risk of type 2 diabetes increases, if you do not already have co-existing Type 1 or 2 diabetes.


Co-existing thyroid disease can also cause problems with mood, sleep, appetite, and metabolism function.


You are at higher risk for heartburn, indigestion, and gastroesophageal reflux. If you cannot sit upright during meals (and afterward for up to one hour) you risk aspiration. You eventually develop constipation and decreased peristalsis, which can lead to impaction, nausea, vomiting, or ileus.


Inactivity also leads to constipation. Many medications prescribed for stiff-person syndrome can have constipation as a side effect. Consult with your physician on how best to handle this complication.


Lying down reduces the drainage of urine from the kidneys. The bladder loses tone and can become sluggish with incomplete emptying. You could experience frequency of urination or even incontinence. The longer urine pools in the bladder, the greater the risk of urinary tract infection. As calcium levels rise, so does the risk of kidney stones.


If you rely on adult incontinence products, excessive contact with digestive enzymes and prolonged contact with feces can cause skin breakdown.


Lying in one position for long periods results in pressure ulcers (bed sores). Healthy adults normally change positions approximately every 11.6 minutes during sleep. Sitting or lying in the same position for hours on end causes a loss of blood supply to the area affected (buttocks, back, thighs). Pressure ulcers can become infected. The risk of infection is higher for diabetics.


Friction promotes abrasions, skin injuries, and breakdown, leading to pain, infection, and other complications.


Immobility leads to reduced muscle mass, strength, and oxidative capacity. It increases stiffness and soreness with movement. Muscles eventually atrophy. Contractures can form in as little as four days. Contractures cause capillary occlusion at bony prominences, contributing to pressure ulcers. As much as 50% to 70% of all pressure ulcers are related to untreated contractures.


Range of motion can be lost in as little as two weeks. Weakness of abdominal and back muscles leads to poor posture and increased pressure on the spine.




Pneumonia is another concern. Secretions build up in the lungs. Muscle weakness and spasms lead to difficulty expanding lungs fully and taking a deep breath due to position. The ability to cough is reduced, weakening the ability to clear secretions. Pooling of secretions increases the risk of pneumonia and lung infections. Secretion build-up in the airways causes collapse of alveoli. Obesity limits lung expansion.


Oxygen and carbon dioxide exchange is impaired, causing reduced ventilation and inadequate oxygen level in blood (hypoventilation and hypoxemia). Inability to take a deep breath causes anxiety and may result in dyspnea. Blood redistribution and fluid shifts increase the risk for pulmonary edema and blood clots. Blocked airways can lead to death.


It is important remain as active as possible as long as possible in any way possible. See the Exercise section.


Pay attention to dental care and brush your teeth at least twice a day.


If you cannot have a full bath daily, shampooing the hair twice a week and sponge bathing every other day will suffice.


Nails and hair should be trimmed regularly. Men should shave at least every other day. Women should wax or shave as often as they desire.


Staying clean and presentable keeps you feeling human. A positive attitude is half the battle.

   

If you use a bedpan, make sure that the genitals and/or anus is wiped clean after each use.


Bed sheets get dirty due to food particles, hair and skin flakes, so change the linen regularly including pillow covers.


Vacuum the mattress once a month. A mattress cover keeps the fabric from being infiltrated by dust and fine particles.


Wash the blankets or run them through a hot dryer cycle once a month, depending on the fabric. Comforters should also be treated once a month.


If restricted to one room, the space should have good natural light and be well ventilated. An attached bathroom is best, but a bed-side commode can be utilized if necessary.


The room should be comfortable and comforting to the person restricted to it. Items should be placed in easy reach. The room should not be cluttered. The floor should be cleared and allow for whatever ambulation the patient is capable of.


If you are fed through a tube or have a urinary catheter, ask the doctor when it has to be replaced and how to care for it.


Keeping a tube or catheter in place for too long may lead to infection. A trained nurse can deflate a urinary catheter before taking it out and put in a new one.

 

Complications from immobility by body system.html

Bed alarms can be installed to alert caregivers when assistance is needed.

Alimed.com  Alarms-wireless

If caretakers are involved in transferring patients, make sure they are properly trained.

Transferring a weak patient from bed

Moving patients from bed to wheelchair

Moving a patient from bed to wheelchair

Transfer techniques

Safe transfer technique


Transfer techniques part 1 of 4 video


Transfer techniques part 2 of 4 video


Transfer technique part 3 of 4 video


Transfer technique part 4 of 4 video


A list of medical alert and safety products can be found under the Emergency Care section.



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