Sep 16 – Dr. David Vargas, D.C., will share his views with acupuncture and its effects on people with PD.
Oct 21 – Mr. Fred Taube visits again. This trip he will not only talk about the latest developments in Medicare and Medicaid, but he’ll have information on how the new healthcare program will affect both our health and our pocketbook.
July Support Group Meeting
Dr.Michael Munz, neurosurgeon, our featured speaker, talked to us about Deep Brain Stimulation Surgery (DBS). DBS type surgeries have been around for about seventy-five years. DBS surgery itself has been around since about the mid 1950’s. DBS is used to lessen tremors, rigidity, bradykenisia, and diskenisia.
DBS became more prevalent as a means to lessen the over medication of PD patients. It is a symptom reducer, not a symptom eliminator. DBS will not stop the progression of PD. After DBS fewer medications are needed, but cannot be stopped altogether.
Understand that DBS is not performed to address balance issues, postural impairment, speech problems, bowel irregularities, esophageal (swallowing) difficulties, or intellectual functioning.
In Indiana DBS surgery is done in two steps. The firs while patient is awake so the placement of electrode in the brain is most accurate. The second step is to implant the pacemaker and connect the electrode leads. The surgery targets three areas of the brain: the Thalamus, Sub-thalamic Nucleus, and the Globus Pallidus.
Once the surgery is complete, adjustments are made with the electric impulses to maximize DBS effectiveness. Most batteries are replaced after about six years, but some newer devices are rechargeable.
DBS is covered by insurance (Medicare and Medicaid included)
DBS is most successful in younger, healthier patients. But can be performed on patients and healthy individuals in their70’s and 80”s. Dr.Munz stated that patients with severe dementia, depression, heart problems, poor pulmonary function (lungs), or near death cancer are most generally NOT candidates for DBS.
Bruce Gardner, Medtronic’s representative, was on hand to answer questions regarding DBS hardware, etc. Bruce provides valuable insights in that he assists Dr. Munz during each DBS surgery.
Also at the July meeting were representatives of the Ft. Wayne Philharmonic: Our own Russ Eplett, plus Gregory Lopez, Administrative Assistant, and board members, Dr. Pamela Kelly, and Dr. Nancy Jackson. They are inviting interested members of the FWPSG to take part in their “Music in Medicine” project, to research the effects of music in alleviating medical issues in Parkinson disease patients. Attendance at live concerts (with spouse) and completion of a survey are the basic requirements. As soon as Purdue University places their stamp of approval (expected in September, 2010) on the project, specific information and direction will be forthcoming.
This provides us with yet another opportunity to have a part in researching to find a cure for our disease. Plan to participate!
Up and Coming Dates
Parkinson’s Disease Annual Symposium For Patients, Families & Friends
Saturday, October 2, 2010
1-5 PM Doors open at noon
Indy West Conference Center
(same location as last year)
402 N. High School Rd.
Indianapolis, IN 46214
For more information or to register,
contact Sheri: (317) 255-1993 or sheripaaci@sbcglobal.net
Your editor highly recommends the informative event listed above.
Rock Steady Boxing
Bar-B-Que!
Sunday, October 3, 2010
For more information:
www.rocksteadyboxing.org
Or call (317) 223-2970
North10th St.Rockville Rd. in Indianapolis.
Flyer provided to us by Leo G. Rafail, BSW Social Worker Indiana Parkinson Center for Care
A NOTE FROM DAN SPANGLER
Mark your calendar for September 16, 2010. It’s the Annual Senior Information Fair at the downtown ACPL branch.
This year we have elected to staff our own booth. We will need five “pairs” of volunteers to staff the booth, and make it successful. Time’s are as follows:
9:00 am – 10:00 am
10:00 am – 11:00 am
11:00 am – 12:00 n
12:00 n - 1:30 pm
1:30 pm - 3:00 pm
Again, you will be greeting booth visitors, answering questions about PD and the FWPSG, plus distributing literature. What a great way to spread the word. Sign up by calling Dan Spangler 486-4893, or responding at the support group meeting or exercise class.
Thanks to your willingness and support in these efforts. As a result more people than ever are learning about us, what we do, and how we can help.
TIPS TO MAKE YOUR LIFE BETTER
Some people with PD propel themselves forward when walking, so that they have difficulty stopping quickly enough to avoid walking into furniture or through a glass door. If this is a problem for the person you help, strategically arrange the furniture so you create soft landings, like the arm of an upholstered couch. Note: When considering this option, always consult the person with PD before arranging any furniture so that he/she does not lose familiarity with the surroundings.
Replace glass shower doors with a lightweight shower curtain for easier access to the shower, greater safety, and convenience.
Store daily use products like towels, dishes, food, medications, and cleaning supplies between waist and eye level; this will help you to avoid reaching and bending, which can throw you off balance and lead to falls.
Use “reachers” to relieve the strain of bending, stooping or stretching to pick up something off the floor or on a high shelf. Many different types of reachers are available; some models have pistol grips, others work like a giant pair of tongs, and some fold completely to take with you. The cost for these ranges from about $10 to $30 and can be purchased at home builders supply or drug stores.
Replace regular doorknobs with lever handles. They are easier to operate—just push down with your hand, arm, or elbow. Lever handles are especially helpful if you are carrying things in your hands and need to open the door. Purchase lever handles at hardware or home building supply stores. If you purchase the same brand as what you already have the store clerk can “key” the lock so you can continue to use the same key that you have been using for the doorknob.
Submitted by Ed Gatke
The Caregiver's Role
The role of a caregiver is usually one that a person must take on without any prior warning. It is a major change to anyone's lifestyle. A caregiver must be on-call twenty-four hours a day. They must always be on their toes. They must be organized, well informed and watchful. They must be very patient, helpful and warm-hearted towards their loved one's changing physical/mental condition. All this is difficult to master. A caregiver must also have inner strength and determination to carefully balance the new demands that lie ahead.
We hope the information in this section helps define the role of caregiver and sheds light on the importance of this role. It takes a special kind of person to care for an ill or disabled loved one.
The symptoms of Parkinson's disease vary.
It is important that caregivers understand that this disease affects different people in different ways. In other words, the symptoms won't always be the same in all patients.
Since there are such a wide variety of symptoms, caregivers should not jump to any conclusions if Parkinson's disease is suspected. Even if it is diagnosed, they should not expect a "worst!"
The early signs of Parkinson's disease are often subtle.
Some form of a tremor may be the first symptom noticed – but not always. Other early symptoms may include a patient becoming shier, or perhaps showing signs of depression.
A softer voice may be noted with some patients. In other patients, an early symptom might be that handwriting becomes harder to read (smaller or a bit scratchy).
Some patients have even complained of not being able to play golf or tennis as well as usual. They don't realize that this may signal the presence of Parkinson's disease.
Many patients who display the most common symptoms of Parkinson's never experience anything worse.
The most common symptoms of Parkinson's disease are tremor, muscle stiffness, slowness of movement, and/or sexual problems in men. Even with these symptoms being the most common, not all patients experience them.
In cases where these symptoms are present, the disease can be managed successfully for many, many years, especially with the help of prescription drugs. Often, patients taking these drugs may never experience the worst symptoms of Parkinson's.
Caregivers are strongly encouraged to go with the patient when visiting their doctor if Parkinson's disease is suspected.
The caregiver's view is often the most important link in helping the doctor make an accurate diagnosis. That's because some patients may not be able to notice – or may not be willing to admit – the first symptoms. Indeed, many patients may think (sometimes correctly, sometimes incorrectly) the symptoms are part of the aging process.
Also, because symptoms of Parkinson's disease may be hard to notice, it probably makes the most sense to have an evaluation performed by a doctor who routinely works with Parkinson's patients. At the very least, get a second opinion after an initial examination by a family doctor.
The symptoms that are the most difficult to manage usually happen in a small number of patients.
When they do occur, they tend to show up much later in the course of the disease. These more serious symptoms include patients having problems maintaining their balance, periods of extreme confusion or hallucinations, or more severe depression and/or withdrawal.
Caregivers may find it impossible to effectively take care of patients with these serious symptoms. In such cases, some form of professional assistance or nursing home support is generally recommended.
Pharmaceutical drugs have proven to be highly effective in treating Parkinson's disease and newer drugs make this form of treatment even more promising.
Most drugs available for the treatment of Parkinson's disease work to imitate the effect of dopamine in the brain. That is because low dopamine levels in the brain have been linked to Parkinson's disease. These drugs are made to "trick" the brain into thinking it is receiving dopamine. The brain's need for the chemical is then reduced. These drugs have few side effects – the most common are swelling and increased sexual drive (this could become a problem for the caregiver). If a patient has one or more of these side effects, the physician usually will try another drug.
Surgical options are also available for patients who do not respond well to drug therapy.
There is a broad range of therapy available for this disease, and research and development work continues. Caregivers have every reason to be hopeful and confident that an effective treatment will be available for their patient.
Caregivers need help too.
Providing 24-hour care for a patient suffering from any disease is a major responsibility. Caregivers must realize that they may feel anger, withdraw or depression from the pressure of such responsibilities.
Caregivers should be on guard and watchful for these symptoms in themselves. It is better to take steps to prevent them than let such symptoms affect their ability to care for the patient.
Caregivers need to make every effort to maintain a well-rounded, balanced schedule of social activities. And by all means, don't be shy about getting additional help in the house to assist with the caregiving.
The most effective caregiver is well informed, prepared and asks for help and support from all resources that are available!
We have provided links to a wide variety of support groups and educational web sites. In addition, your local "County Office of Aging," and even local religious groups, may be excellent sources of information, support and supplies.
Also, be sure that important documents such as a will, living will and emergency plans for children are updated and in place to your satisfaction.
Taken from myparkinson.org. Visit their website for further info.
Providing Care for Parkinson's Disease
"Constant reassurance that my loved ones are supportive, patient, caring, understanding, and loving is, I believe, my greatest asset and most secure source of happiness." Dwight C. McGoon, M.D., a Mayo Clinic surgeon with Parkinson's Disease
High-fashion thermos coffee mugs, electric toothbrushes, hand-held showerheads and, yes, satin sheets - these are just a few of the items that make life easier for a person with Parkinson's Disease. Read on to learn more about providing care for a Parkinsonian.
Take Charge of Parkinson's
Take an active rather than passive role. Learn all about Parkinson's Disease - its causes, symptoms and treatments. Find the most knowledgeable and experienced physicians and health professionals in your community. Physicians, Nurses, Neuropsychiatrists, Occupational Therapists, Physiotherapists, Dietitians, Speech-Language Therapists and Social Workers are just a few of the people who can help you with the many aspects of providing care for someone with Parkinson's.
A cure hasn't yet been found, but that doesn't mean there are no effective treatments for the symptoms of Parkinson's. If one approach to treatment doesn't work, insist that others be considered. Take charge.
Learn the course Parkinson's may take in the future and be prepared for changes in the level of care you will have to provide.
Parkinson's is life altering, not life threatening. This means life with PD will change. All the same pleasures are out there to be enjoyed, they just need a bit of modification. If your care recipient enjoyed running, some of the same enjoyment of the outdoors comes with walking. Look for versions of the same kinds of activities to keep your care recipient active, independent and interested in life.
Stress and Anxiety
The symptoms of tremor, rigidity and bradykinesia (abnormal slowness of movement) are made worse by anxiety, stress and pressure. Be a calming influence. Don't pressure your care recipient to speed up. The anxiety you create will make movement slower.
Depression
Up to 50% of Parkinsonians suffer from depression. Watch for signs of depression and get treatment for your care recipient right away. Depression can affect short-term memory and concentration that will aggravate Parkinson's Disease. There is a risk of suicide.
The signs of depression include:
- Sadness
- Suicidal ideas
- Sleep disturbance
- Fatigue
- Problems concentrating
- Weight loss or gain
- Appetite change (usually loss)
- Feelings of worthlessness
- Anxiety
- Irritability
- Apathy
- Unwillingness to socialize
- Loss of interest in sex and reduced performance
Parkinson's and its medications combine to make constipation a problem. Take preventive action to avoid a crisis that will need medical attention.
Increase fluid intake, especially in hot weather. Your care recipient should drink eight cups of fluid every day.
High-fiber foods are traditionally recommended to prevent constipation but these may cause intestinal gas and cramping that are not tolerated by an older person with Parkinson's. Instead of raw fruits and vegetables, nutritionists recommend dried fruits, hot prune juice, canned fruits and soft cooked vegetables. If you introduce bran or high fiber cereal into the diet, start slowly with small amounts and increase fluid intake.
Fatigue
Persons with Parkinson's have to pace their activities and take lots of rest breaks. It isn't lazy; it's smart.
When your care recipient is having a really good day, feeling well and full of energy, there will be a tendency to do too much. Gently remind him or her that overdoing it will mean exhaustion and inactivity for the next couple of days. Better to ration that newfound energy.
Irritability and Frustration
Everyday tasks take longer with Parkinson's. They may take even longer on bad days. Allow time for this. Don't rush. Respond with tact and humor, not irritability and frustration. Place yourself in the mind and body of your care recipient and imagine how irritated and frustrated he or she must feel.
If it's a bad day, set some activities aside for another day and do just what is possible and necessary. If you don't make these allowances, you create a stressful situation that aggravates the Parkinson's symptoms and may actually slow your care recipient even further. There's always tomorrow.
Pets
They are wonderful companions but be careful that they aren't surprise obstacles that cause tripping or falling.
Drugs
Be sure your care recipient's physician tells you about all the expected side effects of medications so you know what to expect. It doesn't hurt to ask your pharmacist for more information. Be able to recognize when side effects are becoming too severe or unpleasant and contact the physician.
Some medications may cause nightmares and vivid dreams. Taking medications a few hours ahead of bedtime may help. Reactions to the dreams may make the sleeper noisy and violent. The person with Parkinson's will sleep on while the rest of the household thinks war has broken out.
Hallucinations may be another side effect. Your care recipient may see small animals or children. Usually the Parkinsonian knows it isn't real but if he or she insists it's real, maybe you should pay attention. One family got a bit of a surprise. Their family member with Parkinson's insisted that there was a mouse in their home. No one believed her until she presented them with a dead mouse in a trap.
If your care recipient sees a number of physicians, make sure all physicians know the complete list of medications your care recipient is taking. This will help prevent unpleasant or dangerous drug interactions. It's a good idea to consult your pharmacist.
Be careful about botanical or natural remedies. Ask your physician for advice. These remedies may interact with the medications your care recipient is already taking.
Never change dosages without guidance from your physician.
Exercise
A well-designed exercise program can increase the benefits of Parkinson's medication, fight depression and promote an overall sense of well being.
Your care recipient will benefit from three types of exercise:
- Stretching and range-of-motion exercises to maintain joint and soft tissue flexibility
- Strengthening exercises to improve and maintain strength of abdominal and back muscles
- Aerobic exercises to aid cardio-respiratory fitness.
Don't stick to a rigid schedule. Instead, help your care recipient exercise when medications are working well and movement is easier.
Urge your care recipient to be patient. The gains of regular exercise are not immediately obvious but they will come with time.
Exercise should be fun. Look for organized programs at local community or commercial centers. If there is a Parkinson's support group in your community, they may offer programs specially designed for your care recipient. It may be possible to combine exercise with some social activities that are so important in fighting depression and maintaining a sense of independence.
Walking
It's great exercise for you and your care recipient. Here are some tips that make it easier and safer for someone with Parkinson's.
Help your care recipient by encouraging him or her to stand up as straight as possible. Heads up - avoid looking at the ground. At home, remove unnecessary furniture and anything on the floor like loose rugs that could cause a fall. Avoid shoes with rubber or crepe soles. They can stick to the floor and cause a tumble. See a physiotherapist for tips on helping your care recipient if there are problems with starting, stopping or maintaining momentum when walking. Offer your arm as support but try to avoid hanging on to your care recipient. It's easier for a person with Parkinson's to maintain balance if he or she isn't pinned to your side.
To prevent falls, encourage your care recipient to consciously lift each foot. This strategy combats the foot drag that may come with Parkinson's.
When turning, a person with Parkinson's should avoid pivoting on one foot to change direction. Balance problems make this a dangerous maneuver that leads to falls. It works better to take several steps in a U-turn.
If your care recipient appears to freeze, feet glued to the floor or sidewalk, you can be sure that is exactly how it feels. Remain calm and quiet while he or she concentrates on getting going again. You can work together to find ways to overcome this temporary problem. Try rocking from side to side to get the feeling of moving again, or tell him or her to imagine stepping over a crack in the sidewalk or a small object immediately in front of one foot. You might try '1-2-3-go' or bending the arms and swinging them to set the rhythm for walking.
Make it Easier in the Kitchen
Here are some hints to encourage your care recipient to help out in the kitchen.
Be patient. People with Parkinson's move slowly and take longer to get things done. Allow extra time.
Use a microwave to shorten cooking times. This leaves more time for your care recipient to get food ready for cooking. It means less pressure to hurry.
Encourage your care recipient to sit rather than stand. It's less tiring and safer if balance is a concern.
Provide a cart with wheels - like a tea trolley - for moving things. It takes less energy and has the added advantage of providing support for maintaining balance.
Keep frequently used items like the kettle, teapot and tea at countertop level. A lazy susan is ideal for making items accessible.
Safety in the Bathroom
The greatest danger is falling. The bathroom floor, bathtub and shower are slick and slippery when wet. There isn't anything in the house more punishing in a fall than the unyielding sides of the bathtub.
Install a grab bar by the tub or in the shower. Test it to be sure you feel confident it will hold your care recipient's weight. Don't use a wall-mounted soap dish or a towel rack as a substitute.
If your care recipient is unsteady in the shower, get a shower bench. It's like a waterproof chair for the shower. If you don't have a hand-held showerhead, install one on the existing showerhead outlet. It makes a 'sitting-down shower' much easier.
Non-skid strips or rubber mats in the tub or shower are a good idea but you have to be careful. If they accumulate soap residue, they are just as slippery as the tub or shower.
Use soap on a rope. It's always within reach and stays out from under foot.
Getting on and off the toilet can be a real challenge for someone with Parkinson's when the toilet is quite low relative to the floor. Use a raised toilet seat with armrests to help maintain balance and prevent falls.
Consider getting your care recipient an electric toothbrush. It isn't a safety issue; it just does a better job cleaning teeth because it mimics the quick wrist movements that can be difficult for someone with Parkinson's.
Comfort in the Bedroom
Getting in and out of bed and turning in bed can be a real problem for your care recipient. These tips will make it easier.
Adjust the height of the bed so it is neither too high nor too low.
If you thought satin sheets were only for the rich and famous, you're in for a surprise. These slinky bed linens are great for people with Parkinson's because they make it much easier to turn and move in bed.
There are different approaches to help your care recipient get into bed. You might suggest sitting on the edge of the bed, lowering sideways onto an elbow and then bringing the legs up onto the bed. Try having your care recipient kneel on the bed and crawl further onto the bed and then lower his or her body sideways. Another choice is to have your care recipient sit on the edge of the bed and fall back onto a pillow. Then you can help raise his or her legs onto the bed.
Turning in bed can be difficult if your care recipient has trouble initiating movement or is rigid. Suggest that he or she bend the knees and place the feet flat on the bed. Then he or she can turn the head in the direction of the turn. By reaching across the body toward the edge of the bed, the trunk and hip will follow - like rolling a log. It helps if they can grab the edge of the bed or a grab bar on an adjacent wall. This is where satin sheets make sliding and turning much easier.
Getting out of bed is much like getting in. With your care recipient on his or her side, bend the knees toward the chest so the feet are near the edge of the bed. By supporting him or her with a forearm, the care recipient can push up using an elbow and hands and at the same time swing the feet over the edge of the bed onto the floor.
An occupational therapist will have further suggestions that apply to your specific situation.
Falls
As Parkinson's progresses, gait (the kind of step used in walking) and balance problems are more pronounced. Hard as you try to prevent it, a fall may happen. Keep these points in mind, just in case:
When a fall happens at home, encourage your care recipient to stay still and rest in a comfortable position for a few moments before getting up. Remain calm. If your care recipient becomes anxious, it will be more difficult to get up. If there appears to be injuries that would be aggravated by trying to get up, call for medical help.
Don't attempt to lift the person from the floor unless you have been trained to do it in a way that won't cause you to injure yourself.
If there are no apparent injuries, bring a chair to your care recipient and ask him or her to roll onto hands and knees. Have him or her bend one leg and put a foot firmly on the floor. With the opposite arm on the chair your care recipient can use arms and legs to push up to a standing position. Provide support in case of dizziness or lightheadedness.
Have a hug, a laugh and a cup of tea.
Taken from PDcaregivers.org
Thanks to all the caregivers. We appreciate you.
