Jo Horne

Cheat Sheet / Updated 09-12-2022

Having Parkinson’s disease (PD) makes for a challenging journey. Use the succinct information in this Cheat Sheet to recognize the important PD terms and acronyms, know where to look for related support, manage medications, and prepare emergency contact information.

Article / Updated 03-26-2016

Although the actual causes and risk factors for getting Parkinson's Disease (PD) are still mysterious, the primary signs that signal the presence of PD are very clear. You may have noticed one or more of these signs but then dismissed it as something slight, easily explained, or due to an entirely different condition. Several resources use the acronym TRAP to illustrate the four primary signs of PD. And, because PD seems to trap your body with your brain's compromised ability to communicate, the acronym makes the top four symptoms easy to remember. T = Tremor at rest (uncontrolled shaking) PD was originally called shaking palsy because the resting tremor (it goes away as soon as the hand is engaged) rarely occurs in other illnesses. Characteristically, the resting tremor begins in one hand and moves to the other hand years later in the disease. The tremor may extend to the leg or foot on the same side and sometimes to the lips and jaw — or you may have no tremor at all. Tremor in the head and neck, however, is less common in primary Parkinson's disease. Variations of the resting tremor include: Postural tremor (obvious when arms are extended to hold a position or posture) Action tremor (present when certain tasks, such as holding, are performed) Internal tremor (the patient feels the tremor but can't show it, almost as if it's coming from inside) While tremor is the most obvious symptom of PD, it doesn't have to be present for diagnosis. R = Rigidity (stiff muscles) Rigidity is probably the most ignored and easy-to-explain-as-something-else sign. In plain English, rigidity means stiffness. (Who doesn't experience stiffness in joints and limbs that makes movement more difficult as they age?) If your doctor observes rigidity (without other signs of PD), he may first suspect arthritis and prescribe an anti-inflammatory medication. But, if medicine doesn't relieve the stiffness, you need to let your doctor know. A = Akinesia (absence or slowness of movement) Especially early on, people with PD (PWP) may experience slight bradykinesia (unusually slow movement).Much later in the progression, that slowed movement may become akinesia (no movement). Get to know these terms because, if indeed you or a loved one has PD, you'll hear these words again and again. Kinesia means movement in the sense of knowing what you want your body to do. So akinesia and bradykinesia indicate problems initiating or continuing an action. For example, to walk across the room, you stand up and your brain tells your foot to step out — but with bradykinesia, your body doesn't move right away. The problem can extend well beyond simply walking from here to there. Bradykinesia can also affect Facial expression because it slows blinking eye movement and the ability to smile. Fine motor movements, such as the ability to manage buttons or cut food because the fingers lack the necessary speed and coordination to perform these detailed actions. In addition, fingers may curl or stiffen because of rigidity. The ability to easily turn over in bed because of lack of coordination between the various parts of the body that need to move in sequence; again muscle stiffness and rigidity may further complicate this normally routine task. P = Postural instability (impaired balance) In a healthy person, the natural movement is to alternately swing the arms and step forward with assurance. For PWP, however, the swing slowly decreases; in time the person moves with small, uncertain, shuffling steps. (PWP may adapt by propelling themselves forward with several quick, short steps.) Other PWP experience episodes of freezing (their feet feel glued to the floor). Problems with balance (resulting in falls that can cause major injuries, hospitalization, and escalation of symptoms) are usually not a factor until later stages in PD. In time, PWP may lose the ability to gauge the necessary action to regain balance and prevent a fall. They may grasp at doorways or other stationary objects in an effort to prevent the loss of balance. Unfortunately, these maneuvers can make PWP appear to be under the influence of alcohol or other substances.

Article / Updated 03-26-2016

With Parkinson's Disease and the medications that can make you more prone to falling, a check of your home is imperative to your safety. You may want to schedule one as often as you check the batteries in your smoke detectors — which is at least once a year, right? Your local fire or police department may offer a home safety assessment at no cost. If so, take advantage of this great community service. There are also home safety assessments offered by trained nurses, and this service is usually covered by Medicare and some insurance companies. If neither of those professional surveys is available for you, you can also go through the following checklist to get started on your own home safety assessment: Oh say, can you see? • Make sure lighting is adequate both inside and outside the home. • Pay special attention to lighting in stairways and hallways. • Place nightlights in the bathroom and along the path from bedroom to bathroom. • Check lamps and electrical appliances. Do the cords and wiring show wear and need for repairs? • Avoid using extension cords if at all possible; when they're absolutely necessary, anchor them to the wall (not the floor) to prevent tripping. • Bundle and tie up excess footage on computer and other electronics cords; then anchor them safely under the desk or along the baseboard. Underfoot stuff can be dangerous! • Get rid of all scatter rugs (even those with rubber backing) and carefully check for worn carpeting or edges that are coming free of their tacking; make necessary repairs. • Make sure floors (tiled, wood, or uncarpeted flooring) aren't slippery. • Test floors in a pair of socks. If you can do the slide, the floors need to be stripped of the wax or compound that's making them slippery. • Remove any raised threshold strip that separates one room from another; make the transition smooth. • Install nonskid runners on uncarpeted stairways. Each stairway needs a sturdy handrail on at least one side and light controls at the top and bottom of the stairway. Use bright neon tape to mark stairs in especially dark places. • Shop for shoes with nonskid soles and no laces, the kind boaters prefer. Two key spaces are accidents waiting to happen. • In the kitchen: Standard safety rules apply. Keep curtains or flammable materials away from the stove and make sure all appliances are in good working order. Assess whether items in the kitchen are convenient for you. For example, are glasses better on a lower shelf? Can you move the skillet from the drawer under the oven to a hook or a higher cabinet? • In the bathroom: Place nonskid strips in the bathtub and shower; install grab bars wherever they make life easier — bathtub, shower, and toilet. Set the hot water heater at 110 degrees or lower to prevent accidental burning. Don't forget: • Place emergency and other medical contact numbers next to every phone. • Install smoke detectors (or check present ones) in every stairway and in the kitchen; place fire extinguishers in an accessible place on every floor level including the basement; determine an escape route in the event of fire. • Check for needed repairs to sidewalks and driveways: broken asphalt or concrete, uneven brickwork in paths and sidewalks, and so on. Consider installing ramps for the time when managing even a few stairs becomes difficult. • Double-check your house's security. Are all locks on windows and doors working properly? Be sure screens, storm windows, and doors are properly and securely installed. Get to know your neighbors and let one or two trusted neighbors know who to contact if they have concerns about your safety or the security of the property. If possible, make this a family project. List everything that needs attention and then subdivide that list into large and small jobs. Tackle any fairly extensive changes for improving movement (such as removing threshold strips) first. Such structural barriers — usually in multiple places in your home — may put you in the greatest danger for falling.

Article / Updated 03-26-2016

The same symptoms that indicate Parkinson's Disease (PD) can also indicate other conditions, thus parkinsonism is a generic term referring to slowness and mobility problems that look like PD. Parkinsonism is a feature in several conditions that have different (and perhaps known) causes, but those conditions don't progress like PD. As a result, years may go by before the differences between PD and the other disorder are apparent; the PD diagnosis may then be reversed. Taking antiparkinsonian medications (such as levodopa) may be the first indicator that parkinsonism isn't actually PD. By definition, PD promptly responds to this medication, which improves its symptoms in a consistent way, at least for a few years. But, in parkinsonism, improvement is often erratic or nonexistent from the beginning. In fact, your neurologist will always closely monitor your response to treatment in order to rule out the possibility that your condition is a disorder other than PD. Two categories of non-PD disorders are: Parkinson's Plus syndromes: This group of neurodegenerative disorders has parkinsonian features, such as bradykinesia (slowness), rigidity (stiffness), tremor (shaking), and gait disturbances (balance). However, they are also associated with other complex neurological symptoms that reflect problems in brain areas other than the dopaminergic system (the network of neurons able to make and release the neurotransmitter dopamine). These conditions progress more rapidly than PD and don't respond as well (or at all) to antiparkinsonian medications. The most common Parkinson's Plus syndromes are Multiple System Atrophy (MSA), Progressive Supranuclear Palsy (PSP), Cortico-Basal Ganglionic Degeneration (CBGD), and Lewy Body Dementia (LBD). Secondary parkinsonisms: The symptoms of these disorders relate to well-defined lesions in the brain from strokes, tumors, infections, traumas, or certain drugs. Like Parkinson's Plus syndromes, these syndromes are usually less responsive to levodopa. However, if the primary cause of parkinsonism is controlled, these symptoms tend to be less progressive. In addition to Parkinson's plus and secondary parkinsonisms, Essential Tremor (ET) is another source of possible confusion. As the most common movement disorder — as much as 20 times more common than PD — ET's only symptom is a tremor that affects the hands (only while they're moving) but may also affect the head or voice. ET can run in families and is usually benign and non-disabling. The much-admired actress, Katherine Hepburn, may have suffered from ET — not PD.

Article / Updated 03-26-2016

One sure way to get past the poor-pitiful-me piece of dealing with Parkinson's Disease is to focus less on yourself and ramp up your attention to other people. This simple change can also remind other people to stop viewing you as someone with an incurable condition and start seeing you as the vital, loving, and giving person you've always been. Here are some ideas to get you started: If a clerk or service person gives especially good service, tell him and then tell his boss. Offer to trade seats on a bus, train, or plane to let a family or couple sit together — even if you end up with the dreaded middle seat. Find old pictures of family members, frame them, and send them to the person with a note that recalls what the photos mean to you. Look beneath the surface. When a friend's in a crummy mood, know that it probably goes well beyond the surface. Acknowledge that she seems to be having a bad day and ask if there's anything you can do to help. Pass along a good book you've just finished or make special scrapbooks or family recipe books for the children in your family. If you're a gardener and need to divide your perennials, offer the new neighbor some plants from your garden. (They can do the digging!) Put an extra coin in an expired meter. Call the clerks and other service people that you regularly see by name. Take a treat to your co-workers, even if you have to buy rather than bake it. Use the magic words, "Please" and "Thank you," and make a big deal out of someone going the extra mile for you. Focusing on other people — caring for and about them — is possibly the simplest way to move beyond your self-pity and angst about Parkinson's Disease. Of course, it's not a cure for clinical depression or anxiety, but caring for others is a major first-step in changing your destructive, negative self-talk to something far more positive and life-affirming. Bottom line? It is indeed better to give (care and concern) than to receive (pity and avoidance).

Article / Updated 03-26-2016

It makes sense for everyone to carry a list of emergency contacts, but if you have Parkinson’s disease, carrying such a list is essential. Print out a list of contact information — home, work, and cell numbers — for the following people and carry it in a prominent place in your wallet or bag. Posting the list in your home isn’t a bad idea, either. Primary care partner Primary doctor Secondary care partner Neurologist Neighbor Pharmacist Support group member/leader

Article / Updated 03-26-2016

If you have Parkinson’s disease, you most likely manage some symptoms with medication. Managing your Parkinson's medications can be a challenge in itself, but the tips in the following list can help you stay on top of things: Carry a complete list of current prescription (Rx) and over-the-counter (OTC) medications. Give a copy to your care partner as well. Tell all doctors of allergies or other problems. Ask the doctor: Name of medicine Purpose Dosing schedule (how much, how often) How to take and how long to take Side effects Ask the pharmacist to: Check new Rx with your current Rx and OTC meds for possible interaction Print label in large print Provide easy-to-open cap Explain how to take med At home: Add new med to list of meds you carry with you Read and file information print-out Take med exactly as prescribed

Article / Updated 03-26-2016

Having Parkinson’s disease (PD) certainly doesn’t make you immune to accidents and ailments that can land you in a hospital — it may make a trip to the ER more likely, in fact. To make sure that a surprise trip to the emergency room (is there any other kind?) or a planned stay in the hospital doesn’t leave you worse off than before you went in, use the following tips: Have copies of the following information ready; give them to the Admissions office, the doctors, and ER or floor staff: Your neurologist’s contact information — phone, pager, e-mail, and fax info Your doctor’s written instructions for stopping and starting your PD meds during ER or hospital treatment A list of all prescription and over-ther-counter medications you currently take A list of the red-flag medications that interact badly with PD meds, including antinausea dopamine agonists, gastrointestinal anticholinergics, antipsychotics, and postoperative pain-management drugs — Demerol in particular Examine meds you are given in the hospital. If you don’t recognize a med, ask what it is, who prescribed it, and why you’re taking it. Make sure your care partner has copies of all personal info including insurance info and copies of your advance directive and living will. Have your care partner monitor all ER- or hospital-administered meds. Before leaving the hospital, get a list of medications you’re now taking. After you’re home, contact your neurologist to review the list.

Article / Updated 03-26-2016

The following classes of medications may be incompatible with routine medications you take to manage Parkinson’s disease. Provide the following list to all medical professionals before they prescribe any new medicine (prescription or over-the-counter), and review any new medications with your neurologist before you begin taking them: Antinausea dopamine agonists Gastrointestinal anticholinergics Antipsychotics Postoperative pain-management drugs (Demerol in particular) Contact the National Parkinson Foundation (or call toll-free 1-800-327-4545) for a wallet-sized card that lists drugs that may be contraindicated.

Article / Updated 03-26-2016

If you have Parkinson’s disease (PD), you know that few things are quick and easy — except the following list that helps you remind yourself that living well with PD is possible. Read this list once a day — twice if it’s a rough day: Challenge — Acknowledge and face the facts. Humor — Find and revel in the absurd. Empowerment — Refuse to surrender your life and relationships to PD. Collaboration — Team with your family, friends, and healthcare providers. Knowledge — Know the difference between myth and fact and keep up with the latest developments. Integration — Treat the body, mind, and spirit. Never give up!