Living With Parkinsons Disease
Depending on severity, life can look very different for a person coping with Parkinsons Disease. As a loved one, your top priority will be their comfort, peace of mind and safety. Dr. Shprecher offered some advice, regardless of the diseases progression. Besides movement issues Parkinsons Disease can cause a wide variety of symptoms including drooling, constipation, low blood pressure when standing up, voice problems, depression, anxiety, sleep problems, hallucinations and dementia. Therefore, regular visits with a neurologist experienced with Parkinsons are important to make sure the diagnosis is on target, and the symptoms are monitored and addressed. Because changes in your other medications can affect your Parkinsons symptoms, you should remind each member of your healthcare team to send a copy of your clinic note after every appointment.
Dr. Shprecher also added that maintaining a healthy diet and getting regular exercise can help improve quality of life. Physical and speech therapists are welcome additions to any caregiving team.
Learn About The Brain
The Brain-Gut Connection is an exploding area of research for Parkinson’s for a variety of reasons. As it turns out, your brain and your gut are intricately connected. As youre venturing into this new diagnosis of Parkinson’s, shifting to eating in a way that’s healthy for your gut is crucial as it impacts your brain health tremendously. I get dozens of questions each day on nutrition for Parkinsons, which is why I created a free four-part video series all about how to maximize your gut health. You can check it out here:
Foster A Good Relationship
Lastly, maintaining your relationship and communication with the person with Parkinsonâs can be the most challenging and rewarding aspect of caregiving. As Parkinsonâs disease progresses, the roles change and the person with Parkinsonâs may go from being an independent head of the household to a very dependent person requiring a significant level of care. However, research shows that despite high levels of strain, caregivers with good quality relationships have reduced depression and better physical health. Remember, as a caregiver your service to your loved one is beyond measure in terms of love, depth of care, and concern.
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Learn More About Parkinsons Disease: Overview
Give Yourself Time To Adjust
Over time, youll likely become an expert in Parkinsons disease but right now, youre a newbie. Give yourself time for the diagnosis and all it might mean to sink in. Then, get educated: Ask your doctor for information you can take home and read, find other people with Parkinsons in your community or online to talk to, and browse sites like the National Parkinson Foundation and the Michael J. Fox Foundation for Parkinson’s Research.
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Mood And Mental Problems
- Deal with 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.
- Deal with 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.
What To Expect After Dbs For Parkinsons Disease
Deep brain stimulation, or DBS, can relieve the motor symptoms of Parkinsons that are helped by levodopa tremor, slow movement and muscle rigidity. However, the results of DBS are different for everyone. The information on this page explains what you can expect after DBS.
Remember that you have just had two major surgeries. When you return home, rest as much as possible, and slowly return to regular activities. You have an especially high risk of falling in the weeks after DBS. Patients often become overconfident just after surgery. If you used a walker or cane before surgery, keep using it for a while until you are stronger and steadier.
Taking care of your incisions
Keep your incisions clean and dry for the first two weeks after surgery. If they accidentally get wet, gently pat them dry as soon as possible. You do not need to cover the incisions, except when showering, for two weeks following your surgery.
What is normal?
Some bruising near the surgery areas is normal. This will fade with time. Swelling around your eyes is also normal, and should get better in a week or two. Tenderness or numbness near the incisions and behind the ear may last as long as a month.
We will shave some hair on the top of your head for the first surgery. Your hair will grow back. If you have questions about this part of the procedure, please ask your care team.
How long does it take to get the full benefit of DBS?
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How Can Hospice Help Your Loved One In The Final Stages Of Parkinsons Disease
Hospice care is an extra layer of support to help you care for your loved one with end-stage Parkinsons disease. It is a special kind of care that provides comfort, support, and dignity at the end of life.
The comprehensive program focuses on physical, emotional, and spiritual quality of life through the help of a team of experts. The team includes a board-certified physician, nurse, social worker, certified home health aide , spiritual support counselor, and volunteer.
The nurse will explain the prognosis and what to expect in the upcoming days or weeks. They will also monitor pain and other symptoms. The CHHA helps with personal care needs like bathing and changing bed linens. The social worker helps address social, emotional and practical challenges including complex and inter-related needs. The spiritual support counselor helps explore spiritual concerns.
Most importantly, the hospice team will be there for you during this difficult time, bringing you peace of mind. The team is on call 24 hours a day even at 2:00 am.
Hospice is about making your final months and weeks as good as possible. This means focusing on what really matters to you.
Parkinsons Medications And Sweating
In some cases, excessive sweatingor insufficient sweatingis part of the disease process due to autonomic nervous system involvement. In Parkinsons disease, excessive sweating affects the face, head, and trunk, while the palms may sweat less than usual.
Additionally, too much sweating or too little sweating can be side effects of some Parkinsons medications, although sweating too little is less common.
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What You Can Do
As of 2021, there is no definite cure for Parkinsons disease. There is also no definite known cause. Its likely due to a combination of an individuals susceptibility and environmental factors. Most cases of Parkinsons disease happen without a genetic link.
According to research published in 2012, only report having a family member with the disease. Many toxins are suspected and have been studied, but no single substance can be reliably linked to Parkinsons.
However, research is ongoing. Its estimated that
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The 5 Stages Of Parkinsons Disease
Getting older is underrated by most. Its a joyful experience to sit back, relax and watch the people in your life grow up, have kids of their own and flourish. Age can be a beautiful thing, even as our bodies begin to slow down. We spoke with David Shprecher, DO, movement disorders director at Banner Sun Health Research Institute about a well-known illness which afflicts as many as 2% of people older than 65, Parkinsons Disease.
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How Is Parkinsons Disease Treated
There is no cure for Parkinsons disease. However, medications and other treatments can help relieve some of your symptoms. Exercise can help your Parkinsons symptoms significantly. In addition, physical therapy, occupational therapy and speech-language therapy can help with walking and balance problems, eating and swallowing challenges and speech problems. Surgery is an option for some patients.
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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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Drug Therapy And Research
If the disease progresses beyond minor symptoms, drug treatment may be indicated. Drug therapy for Parkinsonâs typically provides relief for 10â15 years or more. The most commonly prescribed medication is L-dopa , and this helps replenish some of the depleted dopamine in the brain. Sinemet, a combination of levodopa and carbidopa, is the drug most doctors use to treat Parkinsonâs disease. Recent clinical studies have suggested, in the younger person, the class of drugs called âdopamine agonistsâ should be used prior to levodopa-carpidopa except in patients with cognitive problems or hallucinations. In those older than 75, dopamine agonists should be used cautiously because of an added risk of hallucinations.
Other drugs are also used, and new drugs are continually being tested. It is common for multiple drugs to be prescribed because many of them work well together to control symptoms and reduce side effects. Contrary to past beliefs, starting Sinemet in newly diagnosed people does not lead to early symptoms of dyskinesia . Current knowledge is that the disease progression causes dyskinesias, not a âresistanceâ to the drug.
Quality of life studies show that early treatment with dopaminergic medications improves daily functioning, prevents falls, and improves a personâs sense of well-being.
Can You Die From Parkinson’s
Advanced symptoms of a long-term condition like Parkinsons can make people more vulnerable to poor health and increased disability. These complications can sometimes result in someone dying. When this happens, Parkinsons can be recorded as a cause of death.
Complications can include:
- aspiration pneumonia
- chest infections and pneumonia
This is one of the reasons why its important to manage your condition as well as you can, with the support of specialist healthcare professionals.
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How To Talk To Someone With Hallucinations Or Delusions
- It is usually not helpful to argue with someone who is experiencing a hallucination or delusion. Avoid trying to reason. Keep calm and be reassuring.
- You can say you do not see what your loved one is seeing, but some people find it more calming to acknowledge what the person is seeing to reduce stress. For example, if the person sees a cat in the room, it may be best to say, “I will take the cat out” rather than argue that there is no cat.
Page reviewed by Dr. Chauncey Spears, Movement Disorders Fellow at the University of Florida, a Parkinsons Foundation Center of Excellence.
Medications Used For Treating Psychosis
Antipsychotic agents are designed to balance abnormal chemical levels in the brain. Up until the 1990s, the use of antipsychotics in PD was controversial because the drugs used until that time work by reducing excess dopamine. This alleviated psychosis but caused dramatic worsening of PD motor symptoms.
Fortunately, medications that are better tolerated by people with PD are now available. Today, there are three antipsychotic medications considered relatively safe for people with PD: quetiapine , clozapine and the newest agent, pimavanserin . They cause limited worsening of PD while treating hallucinations and delusions.
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You Have A Name For Your Symptoms
You just won a name for your symptoms. That’s one of three differences between yesterday and the avalanche that is today’s diagnosis. There is no difference in your health other than what took you to the doctor in the first place. Those new changes won’t come overnight, and neither did those changes. Enjoy your life as well as you can. No timelines.
Whats It Like Living With Parkinsons Disease
Whether you’ve just been diagnosed with Parkinsons Disease or you know someone who has, you may wonder what it’s like living with Parkinson’s disease. Life with Parkinson’s disease can be hard to imagine unless you have experienced it. In addition to motor symptoms like tremors, rigidity and slow movement, people with PD may also experience sleep disorders, mood changes, and relationship issues. Here are some of the main challenges of the condition, as well as tips to boost your quality of life or help someone living with Parkinson’s disease.
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I’ve Heard From Thousands Of People Who’ve Been Diagnosed With Parkinson’s And Every Single One Of Them Is Different
You have a different background.
You have a different presentation.
You have a different support system.
You have so many different individual things going on that it’s impossible to predict what your experience will be with Parkinson’s.
On the other hand, we do have a lot of promising research developing thats beginning to shed some light on what can be done to prevent Parkinsons, prevent the worsening of symptoms, and the most effective treatment methods and techniques.
What were going to focus on are the things that we do know that help you improve your symptoms now and maximize your longevity and your independence for the long run.
I’m going to share with you a lot of those things today, but I want to just encourage you to do two things.
Signs Of Parkinsons Disease
In 1817, Dr. James Parkinson published An Essay on the Shaking Palsy describing non-motor, as well as, motor symptoms of the illness that bears his name. Parkinsons is not just a movement disorder, explained Dr. Shprecher. Constipation, impaired sense of smell, and dream enactment can occur years before motor symptoms of Parkinsons. The latter, caused by a condition called REM sleep behavior disorder, is a very strong risk factor for both Parkinsons and dementia . This has prompted us to join a consortium of centers studying REM sleep behavior disorder.
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Other Pd Treatment Options
Beyond medications, you may be a candidate for deep brain stimulation. Deep brain stimulation acts to block faulty signals in the brain, which improves movement problems.
Discuss with your doctor the benefits and short- and long-term risks of DBS based on your specific situation and symptoms.
In addition to PD treatments approved by the FDA , there may be new, investigational Parkinsons disease drugs and therapies. Your doctor may talk with you about participating in a clinical trial for these therapies.
What Are The Surgical Treatments For Parkinsons Disease
Most patients with Parkinsons disease can maintain a good quality of life with medications. However, as the disease worsens, medications may no longer be effective in some patients. In these patients, the effectiveness of medications becomes unpredictable reducing symptoms during on periods and no longer controlling symptoms during off periods, which usually occur when the medication is wearing off and just before the next dose is to be taken. Sometimes these variations can be managed with changes in medications. However, sometimes they cant. Based on the type and severity of your symptoms, the failure of adjustments in your medications, the decline in your quality of life and your overall health, your doctor may discuss some of the available surgical options.
Living With Parkinsons Disease: What You Should Know
Living with Parkinson’s disease can be unpredictable and difficult for others to understand. Someone with PD may look normal from the outside but be suffering pain, fatigue, and depression on the inside.
Whether youve recently been diagnosed with PD or you know someone who has, heres what to expect from life with Parkinsons disease:
Pain is often unpredictable
People with PD say that it is hard to make plans because the pain can be so unpredictable. The physical symptoms of Parkinson’s disease can also be exhausting, so someone with PD may be able to socialize and live fairly normally on one day and not another.
Parkinson’s is more than a movement disorder.
Because tremor is the hallmark symptom of Parkinson’s disease, people may not understand the effects it can have on a person’s life. Patients often report that the non-motor symptoms of Parkinson’s such as depression, sleep disorders, fatigue and problems with memory are more debilitating than the movement-related symptoms.
Depression is common
Over 50% of people living with Parkinson’s disease will experience depression. This is thought to be due to the chemical changes that take place in the brain, as well as the physical and emotional impact of living with PD. Certain lifestyle changes, alternative therapies, and antidepressant medications can help relieve symptoms of depression.
Parkinsons disease is a progressive illness
Parkinson’s often leads to dementia.
Stage Five Of Parkinsons Disease
Stage five is the most advanced and is characterized by an inability to rise from a chair or get out of bed without help, they may have a tendency to fall when standing or turning, and they may freeze or stumble when walking.
Around-the-clock assistance is required at this stage to reduce the risk of falling and help the patient with all daily activities. At stage five, the patient may also experience hallucinations or delusions.
While the symptoms worsen over time, it is worth noting that some patients with PD never reach stage five. Also, the length of time to progress through the different stages varies from individual to individual. Not all the symptoms may occur in one individual either. For example, one person may have a tremor but balance remains intact. In addition, there are treatments available that can help at every stage of the disease. However, the earlier the diagnosis, and the earlier the stage at which the disease is diagnosed, the more effective the treatment is at alleviating symptoms.
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