What It Feels Like: Deep Brain Stimulation For Parkinson’s Disease
Manzil Bacchus was diagnosed with Parkinsons disease in 2008. Initially, he was told that there was nothing he could do to stop the progression of the progressive nervous system disorder that affects movement. Manzil and his wife, Sadia, continued to manage the increasingly worrisome symptoms which included tremors and the growing amount of medication that he had to take each day.
After Manzil was diagnosed with colitis, a chronic digestive disease that has been linked to Parkinsons, the family began investigating a new surgical option. In deep brain stimulation , electrodes are inserted in regions of the brain that have been affected by the Parkinsons, with an impulse generator battery also inserted in another area of the body. When turned on, the electrodes send gentle electrical pulses to help improve symptoms like tremors and motor control.
Manzil and Sadia sat down with Healthing to talk about Manzils experience having brain surgery during the COVID-19 pandemic and the difference that deep brain stimulation has made to his quality of life.
When was Manzil diagnosed with Parkinsons?Manzil: Back in 2007, my hands started shaking. I was volunteering at a mosque, helping people to take a pilgrimage in Saudi Arabia, helping with their application for visas and stuff like that. One of the girls noticed my hand shaking and asked why. I thought I was just tired. After that, I also noticed that my left foot was dragging when I walked.
Sadia: Sadia: Sadia:
Types Of Parkinson’s Pain
Most of the time, discomfort in muscles and joints is secondary to the motor features of Parkinsons lack of spontaneous movement, rigidity, and abnormalities of posture what is known as musculoskeletal pain. The most commonly painful sites are the back, legs, and shoulders and it is usually more predominant on the side more affected by parkinsonism.
But there are many other categories of pain associated with Parkinsons disease. Radicular or neuropathic pain is experienced as a sharp pain that can start in the neck or lower back with radiation to arm or leg respectively and is often associated with numbness or tingling, or a sensation of coolness in the affected limb. It is usually secondary to a pinched nerve due to something like a slipped disc.
Dystonia related pain occurs as its name suggests, at times of dystonia most often experienced in the foot, neck or face and arm at different points in the dosing schedule, particularly the off phase when there is not enough dopamine replacement but can uncommonly also occur at peak-dose times. It can be one of the most painful symptoms those with Parkinsons can face.
Akathisia pain is experienced as restlessness, a subjective inner urge to move, an inability to stay still and the inherent feelings of discomfort that it brings. It is primarily experienced in the lower limbs and can often be relieved by walking around.
How Is Parkinson’s Disease Diagnosed
There is no test that can prove that you have PD. The diagnosis is based on you having the typical symptoms . In the early stage of the disease, when symptoms are mild, it may be difficult for a doctor to say if you definitely have PD. As the symptoms gradually become worse, the diagnosis often becomes more clear.
PD is sometimes confused with other conditions. Some conditions can give ‘Parkinsonism’ features – that is, symptoms similar to PD but caused by other conditions. For example, some medicines used to treat other conditions can cause side-effects which resemble symptoms of PD. Some rare brain disorders can also cause similar symptoms.
Therefore, it is normal practice in the UK to be referred to a specialist if PD is suspected. The specialist will be used to diagnosing PD and ruling out other causes of the symptoms. They will usually be either a neurologist or a doctor specialising in elderly care. If there is still doubt about the diagnosis, sometimes a scan of the brain is carried out. This helps to differentiate PD from some other conditions that can cause Parkinsonism features. Other tests sometimes needed include blood tests and tests of your sense of smell.
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Increased Feelings Of Anxiety Or Depression
Anxiety and depression have been linked to Parkinsons. In addition to movement problems, the disease can also have an impact on your mental health. Its possible that changes in your emotional well-being can be a sign of changing physical health as well.
If you are more anxious than usual, have lost interest in things, or feel a sense of hopelessness, talk to your doctor.
How Does Parkinsons Disease Affect The Brain
The part of the brain that is affected is called the basal ganglia, which functions like the autopilot of your brain, facilitating subconscious movements. Because PD causes the brain cells in this deep circuitry to deteriorate, patients natural movements become slow and stiff. Many patients describe feeling as if they had aged overnight.
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Dont give up.
At times, not giving up is easier said than done, especially when you feel alone and abandoned. You may feel your friends and family have abandoned you, but its often more a case of them not understanding your new journey. Its probably best to give those people in your life a free forgiveness pass and move on as you make new friends in the PD community who truly understand what living with PD is like.
Parkinsons disease causes grief, but we can choose to live joyfully and intentionally in spite of what we feel has been taken from us. It is not a death sentence, and we must learn to readjust to our new life. And a new life brings new opportunities. As one person said, never lose hope and keep the faith because God is doing miracles every day and you may be the one He is working through to accomplish just that.
What Are The Symptoms Of Parkinsons Disease
Symptoms of Parkinsons disease and the rate of decline vary widely from person to person. The most common symptoms include:
Other symptoms include:
- Speech/vocal changes: Speech may be quick, become slurred or be soft in tone. You may hesitate before speaking. The pitch of your voice may become unchanged .
- Handwriting changes: You handwriting may become smaller and more difficult to read.
- Depression and anxiety.
- Sleeping disturbances including disrupted sleep, acting out your dreams, and restless leg syndrome.
- Pain, lack of interest , fatigue, change in weight, vision changes.
- Low blood pressure.
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What Is It Like To Have Parkinsons Disease
You have Parkinsons disease . If someone were to observe you, what would they see that is attributed to having Parkinsons disease? What wouldnt they see that is attributed to having this disease?
I have culminated the answers from a very un-scientific study, the questions above posed to over 1,500 people with Parkinsons disease.
This is not my story. This is the story of all those who live with Parkinsons disease, in order to show what it can be like for those who daily live with this debilitating disease.
Changes In Sleeping Patterns
As Parkinsons progresses, you can also develop problems with sleep patterns. These may not happen in the early stages, but can be noticeable later. You might wake up often in the middle of the night or sleep more during the day than you do at night.
Another common sleep disturbance for people with Parkinsons is rapid eye movement sleep behavior disorder. This is when you start acting out your dreams in your sleep, such as verbally and physically, which can get uncomfortable if someone is sharing your bed. Dr. Rundle-Gonzalez says many times a bed partner will be the one to notice sleep problems.
REM sleep behavior disorder can also happen in people who dont have Parkinsons. However, if this isnt something youve dealt with before, its likely related to your disease. There are medications your doctor can prescribe to help you sleep comfortably through the night.
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First Type Of Leg Pain Is Central Pain
This pain is described as constant burning sensation with occasional burst of sharp pain. As it was in my case, this pain is commonly exacerbated by cold and by light touch. I could not stand the sheets to touch my skin and being in a cold room sent my pain through the roof. This type is usually bilateral but it may start on the side where other Parkinsons symptoms begin. For me, it was the leg where my rest tremor began.
Medication Not Working The Way It Used To
In the early stages, taking medicine works well to get rid of symptoms. But as Parkinsons progresses, your medication works for shorter periods of time, and symptoms return more easily. Your doctor will need to change your prescription.
Dr. Valerie Rundle-Gonzalez, a Texas-based neurologist, says to pay attention to how long your medicine takes to kick in and when it stops working. She says you should feel like symptoms significantly improve or are almost gone while on medication.
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What Causes Parkinson’s Disease
Parkinson’s disease occurs when nerve cells, or neurons, in an area of the brain that controls movement become impaired and/or die. Normally, these neurons produce an important brain chemical known as dopamine. When the neurons die or become impaired, they produce less dopamine, which causes the movement problems of Parkinson’s. Scientists still do not know what causes cells that produce dopamine to die.
People with Parkinson’s also lose the nerve endings that produce norepinephrine, the main chemical messenger of the sympathetic nervous system, which controls many functions of the body, such as heart rate and blood pressure. The loss of norepinephrine might help explain some of the non-movement features of Parkinson’s, such as fatigue, irregular blood pressure, decreased movement of food through the digestive tract, and sudden drop in blood pressure when a person stands up from a sitting or lying-down position.
Many brain cells of people with Parkinson’s contain Lewy bodies, unusual clumps of the protein alpha-synuclein. Scientists are trying to better understand the normal and abnormal functions of alpha-synuclein and its relationship to genetic mutations that impact Parkinsons disease and Lewy body dementia.
Leg Pain And Parkinson’s
Interestingly enough, one of my early symptoms of the disease was deep searing pain in my left leg, the type of pain my grandma had complained about many times. Initially this type of pain was worst in the morning as well as at night, making me think is was some sort of fasciitis. However not only did typical anti-inflammatories and muscle relaxants not alleviate my pain but pain worsened over time to a constant burning pain that felt as if someone was tearing the muscle and pouring hot oil on it. The pain was so excruciating it was permeating into all aspects of my life. I was constantly in need of deep tissue massage asking my husband to massage my legs just as my grandmother had asked of us time and time again. This helped only temporarily.
Which brings me to the four types of leg pain in PD.
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Is Parkinsons Disease Inherited
Scientists have discovered gene mutations that are associated with Parkinsons disease.
There is some belief that some cases of early-onset Parkinsons disease disease starting before age 50 may be inherited. Scientists identified a gene mutation in people with Parkinsons disease whose brains contain Lewy bodies, which are clumps of the protein alpha-synuclein. Scientists are trying to understand the function of this protein and its relationship to genetic mutations that are sometimes seen in Parkinsons disease and in people with a type of dementia called Lewy body dementia.
Several other gene mutations have been found to play a role in Parkinsons disease. Mutations in these genes cause abnormal cell functioning, which affects the nerve cells ability to release dopamine and causes nerve cell death. Researchers are still trying to discover what causes these genes to mutate in order to understand how gene mutations influence the development of Parkinsons disease.
Scientists think that about 10% to 15% of persons with Parkinsons disease may have a genetic mutation that predisposes them to development of the disease. There are also environmental factors involved that are not fully understood.
Fascia And Parkinson’s Disease
for a detailed explanation and the potential ramifications for PD. In particular, it is the fascia which gives the body the ability to stand up against gravity. Together with the bones, the fascia gives the body a very special structural property called Tensegrity, flexible, yet able to withstand tremendous forces, and able to maintain shape. Indeed, in her book
Deanna Hansen writes
“… the degeneration of our bodys tissue resulting in pain and disease. The ultimate driver of this is gravity… as we go through time, we decrease in our internal space we get shorter and wider as we age we compress. The constant force of gravity is relentless at pulling down on the body. We dont even recognize this force and how it acts on the cells because it is always present”
perhaps until it becomes more apparent when we develop conditions like PD.
Deanna describes fascia as
and I believe everyone who has experienced PD could attest to this statement.
Deanna goes on to explain that diaphragmatic breathing is the key driver to maintaining the anti-gravity tensegrity properties of fascia, and hence for our bodies to be able stand up against such forces. Again, this is a vital new understanding for anyone affected by PD, since our ability to breathe from the diaphragm tends to be well and truly shot. Unfortunately, the link between posture and diaphragmatic breathing seems to be yet another one of those vicious circles which people with PD suffer from,
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How Do I Prevent Falls From Common Hazards
- Floors: Remove all loose wires, cords, and throw rugs. Minimize clutter. Make sure rugs are anchored and smooth. Keep furniture in its usual place.
- Bathroom: Install grab bars and non-skid tape in the tub or shower. Use non-skid bath mats on the floor or install wall-to-wall carpeting.
- Lighting: Make sure halls, stairways, and entrances are well-lit. Install a night light in your bathroom or hallway and staircase. Turn lights on if you get up in the middle of the night. Make sure lamps or light switches are within reach of the bed if you have to get up during the night.
- Kitchen: Install non-skid rubber mats near the sink and stove. Clean spills immediately.
- Stairs: Make sure treads, rails, and rugs are secure. Install a rail on both sides of the stairs. If stairs are a threat, it might be helpful to arrange most of your activities on the lower level to reduce the number of times you must climb the stairs.
- Entrances and doorways: Install metal handles on the walls adjacent to the doorknobs of all doors to make it more secure as you travel through the doorway.
Understanding Parkinsons Disease: What Does Parkinsons Disease Feel Like
Parkinsons disease is a neurodegenerative disease caused by a lack of dopamine produced in the substantia nigra the part of the brain that controls your voluntary movements like swinging your arms or walking. The lack of dopamine, combined with the effects of a protein found in the brain called a-synuclein forming toxic clumps, and the loss of neurons, communication cells in other parts of the brain and nervous system, causes a wide range of symptoms. Its important to remember, though, that not everyone with Parkinsons disease experiences all possible symptoms. Each case is unique.
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Second Type Of Leg Pain Is Caused By Dystonia
When related to levodopa, it usually occurs as a wearing off but can also occur at peak dose. In most cases this leg pain is unilateral and has direct correlation to medication intake. When pain is due to dystonia, it is more common in early morning. This type of leg pain is usually accompanied by toes curling and foot abnormally posturing.
Medicines For Parkinson’s Disease
Medicines prescribed for Parkinson’s include:
- Drugs that increase the level of dopamine in the brain
- Drugs that affect other brain chemicals in the body
- Drugs that help control nonmotor symptoms
The main therapy for Parkinson’s is levodopa, also called L-dopa. Nerve cells use levodopa to make dopamine to replenish the brain’s dwindling supply. Usually, people take levodopa along with another medication called carbidopa. Carbidopa prevents or reduces some of the side effects of levodopa therapysuch as nausea, vomiting, low blood pressure, and restlessnessand reduces the amount of levodopa needed to improve symptoms.
People with Parkinson’s should never stop taking levodopa without telling their doctor. Suddenly stopping the drug may have serious side effects, such as being unable to move or having difficulty breathing.
Other medicines used to treat Parkinsons symptoms include:
- Dopamine agonists to mimic the role of dopamine in the brain
- MAO-B inhibitors to slow down an enzyme that breaks down dopamine in the brain
- COMT inhibitors to help break down dopamine
- Amantadine, an old antiviral drug, to reduce involuntary movements
- Anticholinergic drugs to reduce tremors and muscle rigidity
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.