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HEMOPHILIA: “A ROYAL DISEASE”

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HEMOPHILIA is a rare blood disorder in which the patient’s blood does not clot normally because it lacks sufficient blood-clotting factors. An inherited disease, it is usually passed from mother to son. Because it was prevalent in European royal families, it is also known as “a royal disease.”

According to https://hemophilianewstoday.com/2017/05/24, it is believed that Victoria, Queen of England, was a carrier of hemophilia and that she passed the disease onto three of her children. Prince Leopold died at age 30 from a post-accident hemorrhage. Princess Alice and Princess Beatrice married royalty in other European countries.

Princess Alice, a hemophilia carrier, had a son who died from the disease in early childhood. One of her daughters, Irene, married Prince Henry of Prussia. She passed the gene to the German royal family. Alice had two sons, one of whom died at age 4. The other son died at age 56.

Alice’s second daughter, Alix, married Tsar Nikolas II of the Russian royal family. Tragically, all of their children were killed during the Russian revolution. The mutant gene ended there.

Princess Beatrice’s daughter, Victoria Eugenie, married King Alfonso XII of Spain. They had five children—one daughter and four sons. The daughter was a carrier of the hemophilia gene, but her children did not inherit the disease. Two of the four sons had hemophilia, but they died without having children.

It is interesting to note how the mutant gene, hemophilia, affected history. Today, hemophilia has affected people from all walks of life including actors, sports legends, and ordinary people. Richard Burton, the British actor and husband of Elizbeth Taylor, had hemophilia. In 1964, he and Elizabeth Taylor set up the Richard Burton Hemophilia Fund. He died in 1984 from a stroke at the age of 58.

Cyclist Barry Haarde is a hemophilia advocate who has cycled across the United States twice to raise awareness for the disease. He was infected with HIV and hepatitis C during a blood transfusion more than thirty years ago. He is the only man with HIV, hepatitis C, and hemophilia to have cycled across the country.

Ryan White was diagnosed with severe hemophilia A at three days old following extensive bleeding after his circumcision. During the 1980’s he contracted AIDS from unscreened blood transfusions, and he inadvertently became the poster boy for AIDS.

If you have a family member who suffers from hemophilia and needs private duty nursing, call American Home Health at (630) 236-3501. The agency can provide round-the-clock nursing care by Registered Nurses (RNs), Licensed Practical Nurses (LPNs), and Certified Nursing Assistants (CNAs). Our service area covers fifteen counties in Northern Illinois including Cook, Lake, McHenry, Boone, Winnebago, Ogle, Lee, DeKalb, DuPage, Kane, Kendall, LaSalle, Grundy, Will, and Kankakee. American Home Health is licensed by the State of Illinois and accredited by the Joint Commission. For further information, go to www.ahhc-1.com, or call (630) 236-3501.

—By Karen Centowski

Education, Information

STIFF-PERSON SYNDROME

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When Laura was thirty years old, she began having episodes of muscle stiffness in the trunk of her body and in her limbs. During these episodes, she would also have severe and prolonged muscle spasms in her legs. As a result, she fell several times. She also suffered from anxiety and depression.

Laura made an appointment with her primary care physician. After ordering some initial testing, the doctor referred Laura to a neurologist. Laura also saw physicians in several other fields including allergy and immunology, rheumatology, and orthopedic surgery. Three years later, she was diagnosed with Stiff-Person Syndrome.

Stiff-Person Syndrome, originally called Stiff-Man Syndrome, is a rare disease which affects only one in a million people. The syndrome affects twice as many women as men. According to the Cleveland Clinic article “Stiff-Person Syndrome/Cleveland Clinic” at https://my.cleveland clinic.org/health articles, it is characterized by “muscle stiffness in the trunk and limbs and heightened sensitivity to noise, touch, and emotional distress, which can set off muscle spasms.” Patients may have abnormal posture, such as being hunched over. Muscle spasms and muscle rigidity may cause patients to fall.

Individuals usually start experiencing symptoms between ages thirty and sixty. Because the disease is so rare, getting a diagnosis can take years. According to the Cleveland Clinic article, “One commonly used tool is a blood test to detect the presence of glutamic acid decarboxylase (GAD) antibodies. About 60-80% of affected people have antibodies against GAD that can be detected on a blood test. Therefore, the absence of GAD antibodies does not rule out SPS, but the presence of high levels of GAD antibodies in people with symptoms of SPS strongly supports the diagnosis.”

Treatment of Stiff-Person Syndrome focuses on the specific symptoms present in each person. Doctors may prescribe benzodiazepines, diazepam, or baclofen to treat muscle stiffness and spasms. Pain medications and anti-seizure medications may also be effective for some patients. In addition, doctors may prescribe antidepressants to relieve the anxiety and depression associated with Stiff-Person Syndrome.

If you have a family member who suffers from Stiff-Person Syndrome and needs private duty nursing, call American Home Health at (630) 236-3501. The agency can provide round-the-clock nursing care by Registered Nurses (RNs), Licensed Practical Nurses (LPNs), and Certified Nursing Assistants (CNAs). Our service area covers fifteen counties in Northern Illinois including Cook, Lake, McHenry, Boone, Winnebago, Ogle, Lee, DeKalb, DuPage, Kane, Kendall, LaSalle, Grundy, Will, and Kankakee. American Home Health is licensed by the State of Illinois and accredited by the Joint Commission.

For further information, go to www.ahhc-1.com, or call (630) 236-3501.

—By Karen Centowski

Education, Information, Status

DIAGNOSIS: RHEUMATOID ARTHRITIS

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Sandra was forty years old when she first noticed that the joints in her hands and toes were tender, warm, and swollen. In the mornings, the joints were stiff, and her body ached. She said she felt like she had been run over by a Mack Truck. She knew something was wrong so she made an appointment with her doctor.

The following week she met with her doctor. Sandra described her current symptoms (pain, stiffness, tenderness, warm and swollen joints). The doctor examined each joint, looking for tenderness, swelling, warmth, and painful or limited motion. He noted that the joints on both sides of her body were affected. (Rheumatoid arthritis tends to affect joints on both sides of the body.)

Next, the doctor ordered blood tests to measure inflammation levels. The blood tests also look for biomarkers such as antibodies (blood proteins) linked with rheumatoid arthritis.

Finally, he ordered a magnetic resonance imaging scan (MRI) to look for joint damage, such as loss of bone within the joint and narrowing of joint space. Note that the lack of joint damage does not rule out rheumatoid arthritis. It may mean that the disease is in an early stage and hasn’t yet damaged the joints.

While she waited for the results of the tests, Sandra researched osteoarthritis and rheumatoid arthritis on her computer. She discovered that osteoarthritis is the most common form of arthritis. According to https://www.everday health.com/rheumatoid-arthritis, it affects over 30 million adults in the United States. It is also known as degenerative arthritis, and it is also called wear-and-tear arthritis. Osteoarthritis typically occurs in older adults.

By contrast, rheumatoid arthritis is an auto-immune, inflammatory, systemic disease. The immune system attacks healthy cells in the body by mistake. This results in inflammation, pain, and swelling in affected body parts. Rheumatoid arthritis typically attacks several joints symmetrically. It may also affect organs such as the heart, lungs, and eyes.

The test results showed that Sandra did indeed have rheumatoid arthritis. What caused this? Doctors don’t know what causes rheumatoid arthritis. However, according to https://www.mayoclinic.org, the following risk factors have been identified:

  • Being female.
  • Your age. Rheumatoid arthritis most commonly begins between the ages of 40 to 60.
  • Family history. If a member of your family has rheumatoid arthritis, you may have an increased risk of getting the disease.
  • Smoking. Cigarette smoking increases your risk of developing rheumatoid arthritis.
  • Environmental exposure. Exposure to asbestos or silica may increase your risk for developing rheumatoid arthritis.
  • Obesity. People who are overweight or obese appear to be at somewhat higher risk of rheumatoid arthritis, especially women diagnosed with the disease when they were 55 or younger.

If you have a family member who has a serious illness and needs private duty nursing, call American Home Health at (630) 236-3501. The agency can provide round-the-clock nursing care by Registered Nurses (RNs), Licensed Practical Nurses (LPNs), and Certified Nursing Assistants (CNAs). Our service area covers fifteen counties in Northern Illinois including Cook, Lake, McHenry, Boone, Winnebago, Ogle, Lee, DeKalb, DuPage, Kane, Kendall, LaSalle, Grundy, Will, and Kankakee. American Home Health is licensed by the State of Illinois and accredited by the Joint Commission. For further information, go to www.ahhc-1.com, or call (630) 236-3501.

—By Karen Centowski

Education, Information

MUHAMMAD ALI’S FIGHT WITH PARKINSON’S

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MUHAMMAD ALI AND WIFE LONNIE
WASHINGTON, DC
JUNE 11, 2001

In 1964, a twenty-two-year-old boxer known by his birth name, Cassius Clay, Jr. entered the ring for a match with Sonny Liston, who had been the world heavyweight boxing champion since 1962. Clay had spent the weeks prior to the match trash-talking Liston’s fighting abilities, trying to get inside his opponent’s head. Clay won the fight in a major upset. He then changed his name from Cassius Clay, Jr., which he called his “slave name,” to Muhammad Ali.

Ali described his fighting style as “Float like a butterfly, sting like a bee. The hands can’t hit what the eye can’t see.” He considered himself “The Greatest.”

In 1966, two years after winning the heavyweight title, he refused to be drafted into the United States military. He gave as reasons his religious beliefs and opposition to U.S. involvement in the Vietnam War. He was arrested, found guilty of draft evasion, and stripped of his boxing titles. He was sentenced to five years in prison, fined $10,000, and banned from boxing for three years. The U.S. Supreme Court overturned his conviction in 1971.

Ali was provocative and outlandish and arrogant and fearsome. Before his famous “Rumble in the Jungle” match with George Foreman in 1974, Ali continued his pattern of verbal assault. “I wrestled with an alligator, I tussled with a whale, I handcuffed lightning, thrown thunder in jail. I’m a bad man. . . last week I murdered a rock, injured a stone, hospitalized a brick. I’m so mean I make medicine sick.”

Ali retired from boxing in 1981 at age 39. In 1984 at the age of 42, he was diagnosed with Parkinson’s disease. Some reports attributed his condition to boxing-related injuries, but both Ali and his physician disputed this.

In 1998, Ali began working with actor Michael J. Fox, who has Parkinson’s disease, to raise awareness and fund research for a cure for Parkinson’s disease. In 2002, they made joint appearances before Congress to push the case. Ali worked with the Michael J. Fox Foundation for Parkinson’s disease to raise awareness and encourage donations for research.

As his condition worsened, he made limited public appearances. He was cared for at his home by members of his family. Muhammed Ali died June 3, 2016 at age 74 after a 32-year battle with Parkinson’s disease.

If you have a family member who has a serious illness and needs private duty nursing, call American Home Health at (630) 236-3501. The agency can provide round-the-clock nursing care by Registered Nurses (RNs), Licensed Practical Nurses (LPNs), and Certified Nursing Assistants (CNAs). Our service area covers fifteen counties in Northern Illinois including Cook, Lake, McHenry, Boone, Winnebago, Ogle, Lee, DeKalb, DuPage, Kane, Kendall, LaSalle, Grundy, Will, and Kankakee. American Home Health is licensed by the State of Illinois and accredited by the Joint Commission. For further information, go to www.ahhc-1.com, or call (630) 236-3501.

—By Karen Centowski

Education, Information, Status

A FORMIDABLE FOE: LEWY BODY DEMENTIA

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Born at St. Luke’s Hospital in Chicago on July 21, 1951, Robin Williams was the son of Robert Fitzgerald Williams, a senior executive in Ford Motor Company’s Lincoln-Mercury Division. His mother, Laurie McLaurin, was a former model from Jackson, Mississippi. During a television interview on Inside the Actors Studio in 2001, Williams credited his mother as an important early influence on his humor. He said he tried to make her laugh to gain attention.

Williams attended public elementary school at Gorton Elementary School in Lake Forest and middle school at Deer Path Junior High School. When he was twelve, his father was transferred to Detroit. When he was sixteen, his father took early retirement and the family moved to California.

He began performing stand-up comedy in San Francisco and Los Angeles in the 1970’s. He also starred in numerous films including Good Morning, Vietnam (1987) and the box office hit Mrs. Doubtfire (1993).

On August 11, 2014, the world learned that Williams had committed suicide by hanging himself in his California home. He was sixty-three years old. The autopsy report showed no alcohol or illegal drugs were involved. Prescription drugs in his system were at “therapeutic” levels. The final autopsy report noted that Williams had been suffering “a recent increase in paranoia.” An examination of his brain tissue suggested Williams suffered from “diffuse Lewy body dementia.”

According to a Mayo Clinic article “Lewy body dementia” at https://www.mayoclinic.org., “Lewy body dementia, also known as dementia with Lewy bodies, is the second most common type of progressive dementia after Alzheimer’s disease dementia. Protein deposits, called Lewy bodies, develop in nerve cells in the brain regions involved in thinking, memory and movement (motor control).

“Lewy body dementia causes a progressive decline in mental abilities. People with Lewy body dementia may experience visual hallucinations, and change in alertness and attention. Other effects include Parkinson’s disease-like symptoms such as rigid muscles, slow movement and tremors.”

If you have a family member who suffers from Lewy body dementia and needs private duty nursing, call American Home Health at (630) 236-3501. The agency can provide round-the-clock nursing care by Registered Nurses (RNs), Licensed Practical Nurses (LPNs), and Certified Nursing Assistants (CNAs), Our service area covers fifteen counties in Northern Illinois including Cook, Lake, McHenry, Boone, Winnebago, Ogle, Lee, DeKalb, DuPage, Kane, Kendall, LaSalle, Grundy, Will, and Kankakee. American Home Health is licensed by the State of Illinois and accredited by the Joint Commission. For further information, go to www.ahhc-1.com, or call (630) 236-3501.

—By Karen Centowski

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WITH A LITTLE HELP FROM CNAs

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Fifty years ago, subdivisions were sprouting in the cornfields and bean fields in Illinois. The 1960’s and 1970’s were a time of rapid growth in the housing stock at the edges of major metropolitan areas such as Aurora, Rockford, and Bloomington-Normal.

Ranch houses, tri-levels, and two-story homes were popular styles. Most had attached garages, and the backyards were often enclosed with chain link fences. The homeowners planted shade trees on the boulevard and in the backyard. They spent time and money mowing, watering, and fertilizing the grass. They took pride in ownership of a beautiful new home.

Margaret, her husband, and their four children lived in one of these new houses. She was a stay-at-home mom, and her children were allowed to be free range children. That meant they roller skated on the sidewalks, shot basketballs into hoops mounted on rooftops above the garages, and played baseball on the diamond at the elementary school. The boys on the street made a go-cart out of wood and an old lawnmower chassis and gave rides to the younger boys.

AND THERE WERE THE DIRT HILLS. Since this was a new subdivision, the last row of houses backed up to a large piece of vacant land. The builder had dug a retention pond, installed concrete sewer pipes, and piled up a huge mound of dirt next to the retention pond. Many a young boy rode his dirt bike down from the top of the mound of dirt. In fact, some became so skilled that they could ride at full speed down the dirt hill and land on a raft in the lake.

The children grew up, got married, and moved away. Margaret and her husband continued to live in the house. When Margaret was in her late seventies, her health began to fail. She could no longer climb the steps into the house so her husband built a ramp in the garage.

As Margaret’s illness progressed, she needed 24/7 care from CNAs who came to her home. This was a tremendous help to Margaret and to her husband. It allowed her to continue to stay in her own home for a period of time. Later, she was admitted to a hospital and died there at age eighty-one.

If you have a family member who needs private duty nursing, call American Home Health at (630) 236-3501. The agency can provide round-the-clock nursing care by Registered Nurses and (RNs), Licensed Practical Nurses (LPNs), and Certified Nursing Assistants (CNAs). Our service area covers fifteen counties in Northern Illinois including Cook, Lake, McHenry, Boone, Winnebago, Ogle, Lee, DeKalb, DuPage, Kane, Kendall, LaSalle, Grundy, Will, and Kankakee. American Home Health is licensed by the State of Illinois and accredited by the Joint Commission. For further information, go to www.ahhc-1.com, or call (630) 236-3501.

To hear the Beatles, the English rock band, sing “With A Little Help From My Friends” from their 1967 album Sgt. Pepper’s Lonely Hearts Club Band, go to With A Little Help From My Friends—You Tube at https://www.youtube.com/watch?v=0C58ttB2-Qg.

—By Karen Centowski

Education, Information, Status

HEADS-UP ON TRAUMATIC BRAIN INJURY

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When you hear the words “traumatic brain injury,” what do you think of first? Serious head injuries on the battlefield? Head injuries in motor vehicle crashes? Concussions occurring in contact sports such as football? You might even think of Muhammad Ali, a famous boxer who endured repeated blows to his head and developed Parkinson’s disease at the age of forty-two.

According to the Centers for Disease Control and Prevention, falls were the leading cause of traumatic brain injury in 2013. In fact, falls accounted for 47% of all traumatic brain injury related emergency department visits, hospitalizations, and deaths in the United States. According to the CDC report at https://www.cdc.gov/traumaticbraininjury, “Falls disproportionally affected the youngest and oldest age groups. More than half (54%) of the TBI-related ED visits, hospitalizations, and deaths among children 0 to 14 years were caused by falls. Nearly 4 in 5 (79%) TBI-related ED visits, hospitalizations, and deaths in adults aged 65 and older were caused by falls.”

What is a traumatic brain injury? According to the article called “TBI: Get the Facts” at https://www.cdc.gov//traumaticbraininjury, “A TBI is caused by a bump, blow, or jolt to the head that disrupts the normal function of the brain. Not all blows or jolts to the head result in a TBI. The severity of a TBI may range from “mild” (i.e., a brief change in mental status or consciousness) to “severe” (i.e., an extended period of unconsciousness or memory loss after the injury). Most TBIs that occur each year are mild, commonly called concussions.”

You need to be especially careful to prevent your family members from falling. Make some small changes to make the home a safer place. Below are some tips from a Mayo Clinic article called “Fall Prevention: Simple Tips to Prevent Falls” at https://www.mayoclinic.org:

  • Remove loose rugs (throw rugs) from the home.
  • Immediately clean up spilled liquids, grease, or food.
  • Turn on the lights before going up or down stairs.
  • Place nightlights in the bedroom, bathroom, and hallways.
  • Store flashlights in easy-to-find places in case of power outages.

If you have a family member who has suffered a traumatic brain injury and needs private duty nursing, call American Home Health at (630) 236-3501. The agency can provide round-the-clock nursing care by Registered Nurses (RNs), Licensed Practical Nurses (LPNs), and Certified Nursing Assistants (CNAs). Our service area covers fifteen counties in Northern Illinois including Cook, Lake, McHenry, Boone, Winnebago, Ogle, Lee, DeKalb, DuPage, Kane, Kendall, LaSalle, Grundy, Will, and Kankakee. American Home Health is licensed by the State of Illinois and accredited by the Joint Commission. For further information, go to www.ahhc-1.com, or call (630) 236-3501.

—By Karen Centowski