How To Support Someone With Parkinson’s Disease

How To Start Exercising If Youre Living With Parkinsons

Safety is key. The first thing you need to do is talk with your neurologist and primary care doctor to make sure that the exercise regimen that you embark upon is safe for you.

Next, ask for a referral for physical therapy. A physical therapist will be able to figure out what movement challenges you may have and design a program to help you improve. There are certain physical therapists with additional training in Parkinsons. Your physical therapist will work with you for your allotted sessions, and then can help you plan your ongoing exercise regimen that is tailored to you. You can contact the APDA National Rehabilitation Resource Center for Parkinsons Disease for help finding resources in your area.

Additionally, physical therapy can help counteract the tendency for people with PD to reduce the size of their movements. The Lee Silverman Voice Technique has designed a program called LSVT-BIG which trains participants to make big movements. You can search for an LSVT-trained professional near you.

Anyone starting out on an exercise program could benefit from APDAs Be Active & Beyond exercise guide which includes clear photos with simple instructions that are easy to follow, with exercises that address all levels of fitness.

Challenges You As A Caregiver Are Likely To Face

There are challenges that a person with Parkinson’s disease confronts. First, the disease can vary from day to day. There will be times when they can function almost normally and then other times when they will be very dependent. This is a natural part of the disease. But it can make a caregiver feel that the person is being unnecessarily demanding or manipulative. Keep in mind that Parkinson’s is unpredictable and each day can pose new challenges for you and your loved one.

Also, keep in mind that Parkinson’s is a progressive disorder. While medications and surgery can provide significant relief of symptoms, they do not stop the progression of the disease.

Depression is also very much a part of the disease. It is important to recognize the signs and symptoms of depression so you can help your loved one seek treatment promptly. And, if you are feeling depressed and having trouble coping, it’s just as important to get care for yourself.

The Basic Elements Of Exercising With Parkinsons

There are four core elements of exercise that are important for people with PD:

Aerobic e.g. brisk walking, stationary cycling activities that get the heart pumping

Strengthening e.g. using weights or resistance bands to improve muscle strength

Balance e.g. tai chi, dance to help you be more steady on your feet

Stretching e.g. mat exercises, yoga to provide flexibility

Including all four of these elements in your exercise regimen is ideal .

Aerobic activity or high-intensity exercise may be particularly important for Parkinsons and general health

High-intensity exercise has been formally studied in PD with impressive results. The Study in Parkinson Disease of Exercise Phase 2 enrolled 128 people with early PD, who were not yet on dopaminergic medication into three groups:

• a high-intensity treadmill exercise group, in which people exercised at 80-85% of their maximum heart rate
• a moderate-intensity treadmill exercise group, in which people exercised at 60-65% of their maximum heart rate
• a wait-list control group

After six months, the high-intensity group had essentially no change in their motor scores, whereas the control group had a three-point worsening of their motor scores.

Currently, the SPARX3 trial is enrolling participants and underway. This trial is similar to SPARX2, but with a goal of studying many more participants.

Forced exercise

Cognitive challenges in exercise

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Keith Admits That Part Of His Interest In Other People With Pd Is To Make Comparisons With His

Well I suppose Ive got used to having it and think, well it hasnt progressed as rapidly as I feared over the last three years. So if theres somebody in the Parkinsons Disease Society branch support group thats had it for twenty years and I can look at her and think, oh well if thats what shes like after twenty years. And other people have had it for a long time dont seem to be quite as bad as you imagined. So in some way youre trying to measure your own progression and the progression over the last three years is not quite as bad as Id feared. So in many ways Im a bit more optimistic than I was.

Okay but seeing other people helps in some ways?

In some ways, yes. Its got pros and cons really. You can see what theyre like but you feel well you want to ask them how long theyve been like that and you really want to be, asking them all the questions about how long theyve had it and what patterns take developed since they were first diagnosed to see if theres any parallel. But as I said before the symptoms are so individualistic that you really cant draw too many conclusions from other peoples experience unlike lots of other diseases.

Because that would be a concern for people wouldnt it?

You couldnt keep me away now. I find them a great help, because youre talking to fellow sufferers, you are comparing notes, you are enjoying yourself because youre amongst people that can sympathise. We get some very good speakers.

Surgery And Deep Brain Stimulation

Deep brain stimulation is a treatment for Parkinsonâs disease that uses an implantable pacemaker-like device to deliver electrical pulses to parts of the brain involved in movement. The DBS system consists of leads precisely inserted into a specific brain target, the neurostimulator implanted in the chest, and extension wires that connect the leads to the neurostimulator. Though implantation of the system requires a neurosurgical procedure, the treatment itself consists of long-term electrical stimulation. Advantages of DBS include its ability to reduce the high doses of medications , its adjustability , and its reversibility DBS was approved by the Food and Drug Administration as a treatment for PD in 2002 and according to Medtronic , more than 80,000 patients have undergone DBS surgery worldwide.

Typical candidates are those who have motor fluctuations or periods of âoffâ time with troublesome symptoms alternating with periods of âonâ time with good symptom control, and also with possible periods of excessive movement .

Not all patients with Parkinsonâs disease are good candidates for treatment with DBS. Approximately 10â20% of patients considered for possible treatment with DBS include those:

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Causes Of Parkinsons Disease

Parkinsons disease is caused by a loss of nerve cells in the part of the brain called the substantia nigra.

Nerve cells in this part of the brain are responsible for producing a chemical called dopamine. Dopamine acts as a messenger between the parts of the brain and nervous system that help control and co-ordinate body movements.

If these nerve cells die or become damaged, the amount of dopamine in the brain is reduced. This means the part of the brain controlling movement cant work as well as normal, causing movements to become slow and abnormal.

The loss of nerve cells is a slow process. The symptoms of Parkinsons disease usually only start to develop when around 80% of the nerve cells in the substantia nigra have been lost.

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Physical And Mental Changes To Expect

• Physical changes may include: Tremor slowness of movement stiffness of the arms, legs or trunk balance problems freezing of gait small, cramped handwriting reduced arm swing loss of facial expression softness of voice tendency to fall backwards walking with a series of quick, small steps constipation erectile dysfunction bladder control problems drooling sleep problems loss of sense of smell vision changes and restless leg syndrome.
• Mental changes may include: Difficulty with attention, focus, planning, multitasking visual spatial functions apathy or lack of motivation hallucinations and/or delusions impulsive behavior problems with memory.
• Emotional changes may include: Anxiety and depression.

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What Are The Symptoms

The four main symptoms of Parkinsons are:

• Tremor, which means shaking or trembling. Tremor may affect your hands, arms, or legs.
• Stiff muscles.
• Slow movement.
• Problems with balance or walking.

Tremor may be the first symptom you notice. Its one of the most common signs of the disease, although not everyone has it.

More importantly, not everyone with a tremor has Parkinsons disease.

Tremor often starts in just one arm or leg or on only one side of the body. It may be worse when you are awake but not moving the affected arm or leg. It may get better when you move the limb or you are asleep.

In time, Parkinsons affects muscles all through your body, so it can lead to problems like trouble swallowing or constipation.

In the later stages of the disease, a person with Parkinsons may have a fixed or blank expression, trouble speaking, and other problems. Some people also lose mental skills .

People usually start to have symptoms between the ages of 50 and 60. But sometimes symptoms start earlier.

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What Is Parkinsons Disease

Parkinsonâs disease is a progressive, neurological disease that mainly affects movement but can also affect cognition. Parkinsonâs disease results from the destruction of nerve cells in a part of the brain called the basal ganglia.

Different parts of the brain work together by sending signals to each other to coordinate all of our thoughts, movements, emotions, and senses. When we want to move, a signal is sent from the basal ganglia to the thalamus and then to the cerebral cortex, all different parts of the brain. Nerve cells in the brain communicate by using chemicals. A chemical called dopamine is produced in a group of cells called the substantia nigra and is essential for normal movement. When the cells die, they can no longer produce and send dopamine, so the signal to move doesnât get communicated. By the time a person starts to experience motor symptoms of Parkinsonâs, theyâve already lost approximately 50% of their dopamine producing cells. People may experience non-motor symptoms from loss of other neurotransmitters up to ten years before motor symptoms are noticed.

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Home And Occupational Environments

Patient activities and environmental precautions. Patients should take reasonable care to avoid devices that generate strong EMI, which may cause the neurostimulation system to unintentionally turn on or off. Patients should also avoid any activities that would be potentially unsafe if their symptoms were to return unexpectedly. These activities include but are not limited to climbing ladders and operating potentially dangerous machinery, power tools, and vehicles. Sudden loss of stimulation may cause patients to fall or lose control of equipment or vehicles, injure others, or bring injury upon themselves.

Control of the patient controller.Advise patients to keep the patient controller away from children and pets in order to avoid potential damage or other hazards.

Activities requiring excessive twisting or stretching. Patients should avoid activities that may put undue stress on the implanted components of the neurostimulation system. Activities that include sudden, excessive or repetitive bending, twisting, or stretching can cause component fracture or dislodgement. Component fracture or dislodgement may result in loss of stimulation, intermittent stimulation, stimulation at the fracture site, and additional surgery to replace or reposition the component.

Household appliances. Household appliances that contain magnets may unintentionally cause the neurostimulation system to turn on or turn off.

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.

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Find Out How Well They Are Sleeping

It is vital to know if they are getting enough sleep every night. Why? Please think of the brain like a sponge filling up with fluid all-day long during our time to sleep, we squeeze the excess liquid out and restore/refresh our mind. Insomnia is shared from both treatments and as a clinical feature of Parkinsons.

Trained Experts In Parkinsons Disease Care

We understand the rough days when you shuffle more and cant stop the shaking. Our in-home care professionals know just when to nudge you through exercises, when to cook some meals ahead, or when to help you relax and talk through how youre really feeling about the limitations on your body. We notice the changes in posture and facial expression and help you make comfortable adjustments to maintain coordination and balance.

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Bump Up Your Fiber Intake

A high-fiber diet is a proven way to avoid constipation, a common problem for people with PD.

Parkinsons can slow down the intestines and cause constipation, Dr. Gostkowski says. Fiber helps keep things moving. There are plenty of high-fiber foods out there, so choose your favorites. Women should aim for 25 grams of fiber per day, and men should get 38 grams.

What Causes Parkinsons Symptoms

The underlying cause of Parkinsons symptoms relates to a decline in the production of a brain chemical called dopamine. Many of the cells which produce dopamine are in the Basal Ganglia located in the middle of the brain. This lack of dopamine means people can have difficulty controlling their movements and moving freely.

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Impulsive And Compulsive Behaviour

Some patients who take dopamine agonists can experience problems controlling impulsive or compulsive behaviour .

Impulsive behaviour refers to the inability of patients to resist carrying out certain activities, some of these activities could be harmful to themselves or others. In many cases, this behaviour is out of character.

Compulsive behaviour refers to an overwhelming urge to act in a certain way to reduce the worry or tension this urge produces. This behaviour can be expressed in a number of ways, including addictive gambling, impulsive shopping, binge eating and hypersexuality.

Nurses who suspect a patient might be experiencing compulsive or impulsive behaviour should discuss the issue with the patient and the patients neurologist or GP as soon as possible.

Learn More About How Parkinsons Affects Families & Relationships

Much more can be found in a powerful new edition of Davis Phinney Foundations free Every Victory Counts® manual. The Every Victory Counts manual has an entire section on Parkinsons and the family along with tools care partners may find useful along their caregiving journey.

Its jam-packed with up-to-date information about everything Parkinsons, plus an expanded worksheets and resources section to help you put what youve learned into action. Color coding and engaging graphics help guide you through the written material and point you to complementary videos, podcasts and other materials on the Every Victory Counts companion website. And, it is still free of charge thanks to the generosity of our sponsors.

Request your copy of the new Every Victory Counts manual by clicking the button below.

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Be Sure Medications Are Taken

This is crucial: If your loved one is forgetting his or her medicine, he or she may not be functioning as well as possible.

To avoid making mistakes or having to bug or nag your loved one, develop a tool you both agree works, such as a smartphone reminder or a hard-to-miss wall calendar. Being consistent with medication can make a difference in both of your lives and lifestyles.

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Parkinsons Foundation

The Parkinsons Foundation was formed from the merging of two other foundationsthe National Parkinson Foundation and the Parkinsons Disease Foundationwith the mission being to improve the lives of and ultimately find a cure for people living with PD.

The Parkinsons Foundation has a vast network of free, in-person support groups located throughout the country. Most of them are for anyone living with PD, but some are geared toward a certain audience .

The Parkinsons Foundation also offers a free online support community called PD Conversations. Here, individuals can connect with others living with PD, as well as get their questions answered by PD experts. To focus their interactions, the online community is broken up into discussion groupsnewly diagnosed, symptoms of PD, Spanish-speaking patients, and much more.

The Parkinsons Foundation also offers health and wellness classes and free educational resources through its local networks. The organization also raises awareness and funds through various gatherings, such as its annual fundraising event called the Moving Day Walk.

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Volunteer To Help Out

Everyday responsibilities like shopping, cooking, and cleaning become much more difficult when you have a movement disorder. Sometimes people with Parkinsons need help with these and other tasks, but they may be too proud or embarrassed to ask for it. Step in and offer to run errands, prepare meals, drive to medical appointments, pick up medications at the drug store, and help with any other day-to-day tasks they have difficulty with on their own.

Take Action To Improve Your Quality Of Life

When you have Parkinsons, staying healthy can feel like a full time job. It takes a lot of time and energy to exercise, eat well, sleep, track your medications, see your doctors and get the overall care you need however, the payoff is well worth it to feel better.

The Every Victory Counts® manual includes over 34 worksheets to help you keep track of everything and can be very helpful along the way.

As youre probably starting to learn, Parkinsons is different for everyone therefore, learn to be an advocate for your own experience every step of the way.

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