Empowering The Patient Voice
Women with PD discussed their experiences in relation to risk, symptoms, treatment, and care.
Krischer co-led the Los Angeles forum, where discussions included the difficulty of diagnosis, insomnia, and dismissiveness of some doctors because of PDs association with men.
Another interesting issue was womens experiences with seeking support.
Several women went to a support group only once and never went back because it was almost all men. The only women there were the wives, Krischer said. Theyd look at them and say, Wheres your husband? Isnt he the one with Parkinsons?
Experiences like this were the norm in Sioux Falls, South Dakota, where Mary Tidwell lives. She started a support group for women after her 10-month journey to receiving her PD diagnosis. She believes its the only group specifically for women in the state.
Not surprising given that until August 2018, there was only one movement disorders specialist in South Dakotalocated 350 miles from Tidwell.
Theres a real hunger for opportunities to connect with other people that have the disease, to learn from each other, and to support each other.
Mary Tidwell Patient Partner, Women and PD TALK, Co-lead, Sioux Falls, SD, forum
It can be a very lonely disease, Tidwell said. Theres a real hunger for opportunities to connect with other people that have the disease, to learn from each other, and to support each other.
Who Can Help And How Can I Help Myself
There are a number of trained professionals who can help with a range of queries or problems. Your doctor, or Parkinsons Disease Nurse Specialist , depending on the country in which you live, will be your first contact and they will put you in touch with a suitable specialist:
- A counsellor, physical/psychological therapist or sex therapist in the case of problems relating to intimacy and sexual relationships
- an obstetrician for matters relating to pregnancy
- a gynaecologist for matters relating to menstruation or menopause.
All are trained to deal sensitively with what might seem difficult subjects and will be able to reassure and advise you.
Improving Your Mood And Memory
- Talk to someone about depression. If you are feeling sad or depressed, ask a friend or family member for help. If these feelings don’t go away, or if they get worse, talk to your doctor. He or she may be able to suggest someone for you to talk to. Or your doctor may give you medicine that will help.
- Be aware of dementia. Dementia is common late in Parkinson’s disease. Symptoms may include confusion and memory loss. If you notice that you are confused a lot or have trouble thinking clearly, talk to your doctor. There are medicines that can help dementia in people with Parkinson’s disease.
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How Is Parkinson’s Disease Diagnosed
Someone with the symptoms of Parkinson’s disease may be sent to see a neurologist, a doctor who specializes in the brain, nerves, and muscles. The neurologist may do some tests, including a brain scan and blood tests. These tests will not make the diagnosis of Parkinson’s disease, but the doctor will want to make sure that there is no other problem causing the symptoms. To diagnose Parkinson’s disease, the doctor relies on a person’s medical history, symptoms, and a physical exam.
Neck Pain In Women Linked To Parkinson’s Disease
Is ongoing neck pain in women a possible sign of early Parkinson’s disease? Neck pain can accompany Parkinson’s disease, a condition characterized by tremors, stiffness, and bradykinesia but it is not a symptom of early-stage Parkinson’s disease.
There are many possible causes of neck pain, regardless of whether you’re a woman or a man. Neck pain is common, especially in older adults, and it can result from muscle strain, injury, arthritis, a more serious cause , and several different diseases.
If you have persistent neck pain, you should see your doctor, who can evaluate you to pinpoint the cause of the pain and determine how it should be treated. If it’s caused by your Parkinson’s disease, then treating your movement disorder may help reduce your neck pain.
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Parkinsons In Women Is Less Common
Parkinsons disease is a condition that affects the nervous system. In PD, nerve cells in the brain that make the neurotransmitter dopamine become damaged or die. When this happens, it leads to symptoms such as tremors, muscle stiffness, and slowed movement.
Your biological sex is an important risk factor for developing PD. When compared to women, 1.5 times as many men have PD.
Usually theres a physiological reason for a difference in disease between sexes. How does being female protect against PD? And do women and men experience PD symptoms differently? Continue reading to learn more.
- bradykinesia, or slowed movement
- changes in balance and posture
The symptoms of PD can vary greatly between individuals regardless of sex, and women may have different symptoms than men.
When women are first diagnosed, tremor is usually the dominant symptom. This form of PD is associated with a slower deterioration of motor functions, according to a 2020 study .
In contrast, the initial symptom in men is usually changes in balance or posture, which can include freezing of the gait and falling.
What You Can Expect
Parkinson does follow a broad pattern. While it moves at different paces for different people, changes tend to come on slowly. Symptoms usually get worse over time, and new ones probably will pop up along the way.
Parkinsonâs doesnât always affect how long you live. But it can change your quality of life in a major way. After about 10 years, most people will have at least one major issue, like dementia or a physical disability.
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How Is Parkinsons Diagnosed
Doctors use your medical history and physical examination to diagnose Parkinson’s disease . No blood test, brain scan or other test can be used to make a definitive diagnosis of PD.
Researchers believe that in most people, Parkinson’s is caused by a combination of environmental and genetic factors. Certain environmental exposures, such as pesticides and head injury, are associated with an increased risk of PD. Still, most people have no clear exposure that doctors can point to as a straightforward cause. The same goes for genetics. Certain genetic mutations are linked to an increased risk of PD. But in the vast majority of people, Parkinsons is not directly related to a single genetic mutation. Learning more about the genetics of Parkinsons is one of our best chances to understand more about the disease and discover how to slow or stop its progression.
Aging is the greatest risk factor for Parkinsons, and the average age at diagnosis is 60. Still, some people get PD at 40 or younger.
Men are diagnosed with Parkinsons at a higher rate than women and whites more than other races. Researchers are studying these disparities to understand more about the disease and health care access and to improve inclusivity across care and research.
Aging is the greatest risk factor for Parkinsons, and the average age at diagnosis is 60. Still, some people get PD at 40 or younger.
The Michael J. Fox Foundation has made finding a test for Parkinsons disease one of our top priorities.
What Is Parkinsons Disease
Parkinsons disease is a nervous system disease that affects your ability to control movement. The disease usually starts out slowly and worsens over time. If you have Parkinsons disease, you may shake, have muscle stiffness, and have trouble walking and maintaining your balance and coordination. As the disease worsens, you may have trouble talking, sleeping, have mental and memory problems, experience behavioral changes and have other symptoms.
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Pharmacological Therapy Of Motor Symptoms
In the absence of a disease-modifying therapy, PD treatment is currently based on the control of motor symptoms by levodopa supplementation. However, long-term therapy with levodopa is associated with the development of motor complications, such as levodopa-induced-dyskinesia, wearing off and on-off phenomena. It is generally assumed that dyskinesia is associated with sustained levodopa plasma levels . Commonly, women present greater levodopa bioavailability, which is further supported by lower levodopa clearance levels . Dopamine bioavailability in the central nervous system is dependent on the activity of two catabolic enzymes: catechol-O-methyltransferase and monoamine oxidase-B , whose encoding genes are located on the chromosome 22 and X chromosome, respectively . A study that explored the relationship between MAO-B or COMT functional SNPs and levodopa therapy reported that male PD patients carrying the MAO-B G allele had a 2.84-fold increased risk of developing motor complications when treated with high doses of levodopa .
Are There Differences In Parkinsons Care Between Men And Women
Women with PD may face more barriers to quality healthcare and social support than men. Women are less likely than men to be cared for by a Parkinsons specialist, such as a neurologist or movement disorder specialist, and are also less likely to have a care partner. On the other hand, women with Parkinsons are more likely to do the following:
- Go to doctors appointments alone
- Use home healthcare
- Live in a skilled nursing facility
All these factors mean that women may not have access to adequate Parkinsons care.
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Younger Women And Parkinsons
Alongside their symptoms, women under the age of 50 with Parkinsons will have to manage periods, and later, the menopause. Emma and Sally share the challenges they face as younger women with the condition.
Sally is 51 and was diagnosed with Parkinsons seven years ago at the age of 44. She says: Ive met many people with Parkinsons since I was diagnosed but no one to share the specific challenges that Parkinsons can have for younger women.
Are There Differences In Parkinsons Treatment Between Men And Women
All current treatment options address PD symptoms, but they do not slow down or stop the progression of PD. Levodopa, often prescribed as Sinemet, is considered the gold standard therapy for Parkinsons movement symptoms. However, many people with PD experience changes in the effectiveness of the drug as the disease progresses. And some studies suggest that women are more likely than men to report these fluctuations earlier in the disease course and more frequently overall.
In particular, it seems that women are more likely to have involuntary movements called dyskinesias that occur when levodopa levels are highest in the blood. There are several factors that could be contributing to dyskinesia, including dosage, body weight and age of onset. Lower body weight can affect how medications build up in someones system. Lighter people sometimes need a smaller dose of medication to feel its effect. On average, women weigh less than men. If women and men are receiving similar doses, this may explain how levodopa levels are causing dyskinesias.
Physicians have also suggested that they find it harder to fine-tune Parkinsons medications for women than for men. Women more often experience large swings in symptoms from even small changes in medications or schedules.
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The Plus Side Of An Early Diagnosis
The news is not nearly all bad for those with young-onset Parkinsons. For one thing, patients with YOPD are better candidates for surgical procedures and medical innovations being used or developed to treat Parkinsons disease. For another, younger patients are less likely to be coping with other health problems at the same time.
Targeting Parkinsons-Linked Protein Could Neutralize 2 of the Diseases Causes
Researchers report they have discovered how two problem proteins known to cause Parkinsons disease are chemically linked, suggesting that someday, both could be neutralized by a single drug designed to target the link.
Disease Predictors And Risk Factors
The etiology of PD is not well understood. Despite the presence of familial cases, PD is substantially an idiopathic, multi-factorial disease caused by the interplay between genetic and environmental factors. Genetic studies have identified increasing numbers of risk polymorphisms, whereas little is still known about environmental risk factors and how these affect PD risk.
Heinzel and coll. recently highlighted the sex-related differences in prodromal PD. They concluded that women and men show distinctive prodromal markers of PD , suggesting that these differences should be taken into account to guarantee the diagnostic accuracy of prodromal PD .
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Kitty Fitton New Zealand: Im Strong Im Tough Ill Be Just Fine But Sometimes Im Not
One of the hardest things about lockdown has been ensuring my children get everything they need. Keeping them happy, safe and secure has often fallen at my door, as I dont have anything to do. You reckon? You should see my to-do list. But nobody else is going to do it. Ive been a mother, carer, counsellor, sports coach, teacher, musician, cleaner, gardener, IT whizz, cook and special events coordinator. Lets not discuss hygiene and the subject of two boys. That takes special powers. Oh and the part-time job. But its only part-time right? Its not really that important.
I dont want sympathy or tucking away in a chair wrapped in a shawl for my Parkinsons, but I do find some things hard. Its tougher to get going in the morning, and I worry about going to the supermarket.
Im strong, Im tough, Ill be just fine. But sometimes Im not. Im human and sometimes I want to scream and kick because Im scared too. The modern take on having it all means doing it all and if we complain were told were being too demanding. But we go on. Because we are strong. And we dont have a choice.
As we say in NZ, Kia kaha, kia maia, kia manawanui: be strong, be brave, be steadfast.
Parkinsons Symptoms For Women
According to Healthline.com, common symptoms of Parkinsons disease include:
- Tremors
- Loss of balance
- Depression
- Sleeping disturbances
- Urinary issues and constipation
Women dealing with Parkinsons have different symptoms than men do. Healthline.com also shares, There is some evidence that men and women are affected differently. For instance, men appear to retain a better ability to understand spatial orientation. Women, on the other hand, retain more verbal fluency. These types of skills are influenced not only by sex but also by the side of PD symptoms. Left side or right side motor symptom onset reflects which side of the brain has the largest dopamine deficiency.
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Stooping Or Hunching Over
Are you not standing up as straight as you used to? If you or your family or friends notice that you seem to be stooping, leaning or slouching when you stand, it could be a sign of Parkinson’s disease .
What is normal?If you have pain from an injury or if you are sick, it might cause you to stand crookedly. Also, a problem with your bones can make you hunch over.
Impact On The Menstrual Cycle
Emma was diagnosed with Parkinsons two years ago, in her early forties. At 43, she says: So much of the expectation around me is that Ill cope. However, her menstrual cycle is a monthly challenge.
Every four weeks, my Parkinsons symptoms are aggravated. In particular, my tremors can escalate and sometimes its like Im jogging just sitting down!
Her balance can also be affected and she has trouble multi-tasking. I also have fatigue and I struggle with this a lot more during my monthly cycle. Its particularly difficult to get a restful nights sleep.
On an emotional level, she feels that her anxiety is heightened during her period. My family are supportive but put any regular worsening of my symptoms down to parky days rather than being connected to my menstrual cycle.
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Gender Differences In Clinical Symptom Presentation
In a larger-scale study, Scott and colleagues contrasted symptom characteristics at disease onset and later . Relative to onset, at time of second evaluation men listed more symptoms, though women reported that their symptoms caused them more distress . The investigators suggested the reporting differences may have arisen from âdifferences in social acceptance of communicating emotionality.â
What Medications Are Used To Treat Parkinsons Disease
Medications are the main treatment method for patients with Parkinsons disease. Your doctor will work closely with you to develop a treatment plan best suited for you based on the severity of your disease at the time of diagnosis, side effects of the drug class and success or failure of symptom control of the medications you try.
Medications combat Parkinsons disease by:
- Helping nerve cells in the brain make dopamine.
- Mimicking the effects of dopamine in the brain.
- Blocking an enzyme that breaks down dopamine in the brain.
- Reducing some specific symptoms of Parkinsons disease.
Levodopa: Levodopa is a main treatment for the slowness of movement, tremor, and stiffness symptoms of Parkinsons disease. Nerve cells use levodopa to make dopamine, which replenishes the low amount found in the brain of persons with Parkinsons disease. Levodopa is usually taken with carbidopa to allow more levodopa to reach the brain and to prevent or reduce the nausea and vomiting, low blood pressure and other side effects of levodopa. Sinemet® is available in an immediate release formula and a long-acting, controlled release formula. Rytary® is a newer version of levodopa/carbidopa that is a longer-acting capsule. The newest addition is Inbrija®, which is inhaled levodopa. It is used by people already taking regular carbidopa/levodopa for when they have off episodes .
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How Is Parkinsons Disease Diagnosed
Diagnosing Parkinsons disease is sometimes difficult, since early symptoms can mimic other disorders and there are no specific blood or other laboratory tests to diagnose the disease. Imaging tests, such as CT or MRI scans, may be used to rule out other disorders that cause similar symptoms.
To diagnose Parkinsons disease, you will be asked about your medical history and family history of neurologic disorders as well as your current symptoms, medications and possible exposure to toxins. Your doctor will look for signs of tremor and muscle rigidity, watch you walk, check your posture and coordination and look for slowness of movement.
If you think you may have Parkinsons disease, you should probably see a neurologist, preferably a movement disorders-trained neurologist. The treatment decisions made early in the illness can affect the long-term success of the treatment.