February 2011

Feb 17 - Caring and Sharing - Split into two groups to discuss issues.

Mar 17 - working on a program about sleep issues

Apr 21 - Dr. Fen Li Chang gives an update on Parkinson's issues since 2000

May 19 - Dr. Heidi Musgrave talks on Depression and Dementia

January Meeting

"DISABILITIES AND DISASTERS"

The program was cancelled due to inclement weather. Plans are to reschedule this summer.


A NOTE FROM DAN SPANGLER

Thanks for your understanding as we cancelled the January support group meeting because of the weather. We will be rescheduling “Disasters and Disabilities” for later on this year.

Regarding bad weather…

Anytime there is a “Level Two” emergency in the city, Turnstone will automatically close and all activities at the center suspended.

Also, anytime Turnstone’s Executive Director feels the weather is such that travel is hazardous, she may close Turnstone even if there is no “Level Two” emergency in the city.

Anytime you suspect support group activities may be cancelled, please check the following:

WANE-TV, Channel 15, or wane.com
WPTA-TV, Channel 21, or wpta.com
WOWO radio, 1190 AM, or wowo.com
Turnstone Center, 260-483-2100

These media will mention closures on the air, run them in the “crawl” across the bottom of your TV screen, and/or list them on their websites.

And, of course, you may always choose not to venture out regardless.

CAREGIVERS' CORNER
by Ed Gatke

Honor your father and your mother, so that
your days may be long in the land that the
Lord your God is giving you.
Exodus 20:12

The Alchemy of Caregiving

Alchemy: 1. A power or process of transforming something common into something special. 2. An inexplicable or mysterious transmuting. Transmuting: 1. To change or alter in form, appearance or, nature, and especially to a higher form.

Terry Hargrave writes...

My mother-in-law, Genevieve, grew weaker by the day and the Alzheimer's was rapidly claiming her mind. My wife and I both took care of her. Bathing her was never my responsibility until one day when my wife was out of town and I inherited the task. Genevieve hated the indignity of being bathed, but in the midst of my clumsily helping her into the shower, she said, “You aren't doing it right, but I guess we will make it okay.” With those words my chore became our common task, and as we entered into the process, my discomfort also washed away. I tried to help her clean physically and she helped me clean emotionally. I faced the measure of my willingness to serve and she received an opportunity to be a gracious receiver. Giving to one another, Genevieve and I made it through.

People most often think of caregiving as something to help parents or obey one of God's commands. But the charge to honor father and mother leads to a promise that our days will be long. I believe this is not a promise for long life so much as one that humility between the generations is what makes us a humble people of God. At the moment of caregiving, both giver and receiver discover something intensely personal. The giver faces the purity of his love. The receiver must encounter her willingness to turn over control to someone else. In caregiving, one's natural independence is laid aside for a symbiotic relationship –well-assured that both giver and receiver have much to learn from the other.

God doesn't instruct us to honor our parents for their sake, although it does contribute to their well-being. He gives us caring to lead us into fundamental humility necessary in our relationships with others and with Him. The act of caring sharpens our need to love purely and unselfishly; at the same time it teaches us the necessity of one day graciously accepting honor and care from our own children. We may think that caregiving is for the sake of our parents, but if we are willing, it is part of God's alchemy. He turns what we do to make another's life richer into an enriching, life-changing experience for ourselves.

Questions for Discussion:

Is caregiving drudgery or something God can use to teach you?

What needs to change in your life so that you can receive care in an honorable way?

TIPS TO MAKE YOUR LIFE BETTER
by Ed Gatke

This month's submission is a continuation of last month's when I wrote about ways to improve your communication. It is the second of a three-part series. Most of the material herein is from Parkinson's Disease: 300 Tips for Making Life Easier by Shelley Peterman Schwartz.

Take time to organize your thoughts and plan what you are going to say. If you have trouble remembering or pronouncing a particular word, think of a related word to get your idea across: cooling appliance rather than air conditioner; salt, pepper and ketchup rather than condiments, etc.

Take a breath before you start to speak, and pause every few words, or even between each word. Learn to use your diaphragm when you breathe. (Your stomach will move up and down rather than in and out.) When you breathe correctly, it will help to improve the volume at which you speak, and you will have enough air to finish a sentence.

Face your listener. It will be easier to communicate if you both can see each other's face and if you have each other's attention. Don't try to carry on a conversation with someone who is in a different room or whom you cannot see.

Have conversations in a quiet environment, so that you can hear and be heard better. This is especially important if your voice is soft , or if one or both of you have trouble hearing.

Swallow any excess saliva before you attempt to speak. If you have excess saliva you might try chewing gum; this will cause you to swallow more often. If dry mouth is a problem, keep water nearby so that you can take a sip when needed.

Express yourself in short, concise phrases or sentences. Use shorter sentences, or use only the necessary words to get the message across, even if it's not in complete sentence form.

Exaggerate your pronunciation of words. Force your tongue, lips and jaw to work hard as you speak. Enunciate as if your listener is hard of hearing and needs to read your lips. Finish saying the final consonant of a word before beginning the next word. Precise word endings are necessary to determine word meaning (e.g., them versus then).

More next month on communicating. Why not try some of the above to see if they work for you? These TIPS are not easy and will require some practice for most of us.

PHILHARMONIC RESEARCH PROJECT

Our first concert was held at the Rhinehart Recital Hall, on the IPFW campus, on Sunday, January, 16th. The Freimann String Quartet performed.

Concert number two will be held at the Rhinehart Recital hall, February 13th, 3:00pm. Performing will be the Falcon Quintet. If you were scheduled to participate in the research project, but missed the first concert, you are still welcome to attend the other two, but may not participate in the study as this will taint the results. Remember, concerts are free.

Concert number three will be held in the Rhinehart Recital Hall on Sunday, March 6th, 3:00 pm. The Brass Quintet will be performing.

"Parkinson Support Groups: Invisible Threads that Bind"

Leonard M. Zunin, MD

Northwest Parkinson's Foundation - Dr. Leonard M. Zunin is the Facilitator of the Napa Support Group and has generously shared this information with us.

"We cannot live by ourselves alone. Our lives are connected by a thousand invisible threads."
Herman Melville

Support groups - A time-tested strategy

In the 1960s, they were revolutionary. In 2011, support groups are a mainstay in a rich, multi-faceted approach to Parkinson's care.

Parkinson's support groups promote a form of focused social interaction in which a small group of people with Parkinson's (and perhaps their caregivers and sometimes their friends), meet regularly with a facilitator. The purpose? To share information, address common problems, improve coping strategies and foster camaraderie.

The very act of listening and sharing offers each individual the opportunity to function more effectively, continue to grow emotionally with the challenge of their illness, and help with problems. The wisdom and the power of the group help to accomplish these goals.

Sharing challenges, sharing solutions

Individuals respond to a Parkinson's diagnosis with a variety of emotions: disbelief, anger, fear, embarrassment, depression, and anxiety among them. Participants come to a support group for many reasons, but all come hoping to improve their lives. Each participant is unique, as is the nature of their disease. Each brings to the table different coping skills and life experiences.

They benefit from the group in different ways and at different rates. Yet, watching others cope with and overcome similar problems successfully often instills hope and inspiration. New members or those feeling particularly challenged - even in despair - are frequently encouraged by hearing others' positive experiences and successful coping strategies.

Moving out of the shadow of isolation

We are social beings with lives characterized by relationships with others. Thus, much of self-esteem is developed via feedback and reflection from others. Some distortions in the way we see ourselves and others are part of the normal pattern of living. Yet, we need to be watchful. These distortions can damage even our most important relationships. The support group provides a forum in which to safely talk about and test our perceptions.

A common feeling among people with Parkinson's is that of being isolated from others. Many experience great difficulty sustaining interpersonal relationships. They may feel unlikable and unlovable. The support group provides a powerful remedy to these feelings.

For many, it may be the first time they feel understood and see similarities to others dealing with the hardships of Parkinson's. Enormous relief often accompanies the recognition that they are not alone. This is a special benefit of a support group.


Frequently, isolated people with Parkinson's feel that their behavior and responses in the face of the disease, are abnormal. Helping people see that their reactions are a normal response to an unanticipated life altering illness, is called normalization.

Support groups provide an opportunity for members to improve their ability to relate to others and live far more satisfying lives as they meet the challenge of Parkinson's. Belonging to a support group can also provide a powerful healing factor as individuals replace their feelings of isolation and separateness with a sense of belonging, acceptance and sharing.

Gaining knowledge enhances coping.

An essential component of a support group is increasing participants' knowledge and understanding of the common problems of Parkinson's. Explicit information about the nature of the shared illness is the keystone. Most leave the group far more knowledgeable about their specific symptoms and challenges than when they entered.

This makes them increasingly able to help themselves and others with the same or similar problems. How is this accomplished? By group sharing and knowledgeable presenters. Along with the voices of the participants themselves - voices imbued with direct experience - presenters and speakers from outside the group, often professionals in specific areas such as voice therapy or current medication options, offer an important learning experience about various aspects of Parkinson's, treatment and self -help.

When we reach out to others, we reach in to the best in ourselves.

Perhaps one of the greatest strengths of Parkinson support groups is that they offer members a unique opportunity to help others. Often those with Parkinson's believe they have very little to offer others because they have needed so much help themselves.

The result can be profound feelings of inadequacy. The process of helping others is a powerful therapeutic tool that greatly enhances feelings of self-worth. In addition, caregivers in the group not only learn about Parkinson's disease, but receive support for their efforts and share coping strategies and challenges with each other and with those for whom they are caregivers.

Support groups vs. psycho-therapy groups

A skilled support group facilitator models active listening, gives non-judgmental feedback, and offers positive support. Over time, members often pick up these behaviors and incorporate them. Facilitators strive to create a safe environment for group interaction and coordinate activities to help provide avenues of involvement for each participant.

The facilitator of a support group is typically not a professional therapist. A therapy group often includes the issues noted above, but in addition the focus of the group and qualifications and role of the therapist is different.

Like support groups, psychotherapy groups aim to increase the individual's sense of their own well-being.

However, the therapist uses range of techniques based on experiential relationship building, dialogue, communication and behavior change. Some Parkinson's patients may find value in participating in both a support group and psychotherapy. However, most people with Parkinson's find great benefit in support groups alone.

The mystery of an unimagined life

"We cannot live by ourselves alone. Our lives are connected by a thousand invisible threads."
Herman Melville

No one's life unfolds exactly as they'd imagined. No one asks for a diagnosis of Parkinson's. No one puts "support groups" on their bucket list of things to do. Yet as Melville said, our lives really are connected by a thousand invisible threads.

The people we meet in Parkinson's support groups are connected by some of those previously invisible threads. In support groups, these unique threads are woven together as we share our stories. The groups help us to make connections, to remind us of the preciousness of each moment, and to appreciate more fully the deeper dimensions of giving and receiving.

Some of what we learn in groups is immensely practical. Yet, when things are just as they should be, support groups also provide a portal to the mystery and wonder of life and the positive aspects that can be found in all things.

Taken from the Northwest Parkinson’s Foundation website

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Dental Health and Dry Mouth
Taken from webmd.com

We all need saliva to moisten and cleanse our mouths and digest food. Saliva also prevents infection by controlling bacteria and fungi in the mouth. When we don't produce enough saliva, our mouth gets dry and uncomfortable. Fortunately, there are many effective treatments for dry mouth.

What Causes Dry Mouth?

There are several causes of dry mouth, also called xerostomia. These include:

Side effect of certain medications. Dry mouth is a common side effect of many prescription and nonprescription drugs, including drugs used to treat depression, anxiety, pain, allergies, and colds (antihistamines and decongestants), obesity, acne, epilepsy, hypertension (diuretics), diarrhea, nausea, psychotic disorders, urinary incontinence, asthma (certain bronchodilators), and Parkinson's disease. Dry mouth can also a side effect of muscle relaxants and sedatives.

Side effect of certain diseases and infections. Dry mouth can be a side effect of medical conditions, including Sjögren's syndrome, HIV/AIDS, Alzheimer's disease, diabetes, anemia, cystic fibrosis, rheumatoid arthritis, hypertension, Parkinson's disease, stroke, and mumps.

Side effect of certain medical treatments. Damage to the salivary glands, the glands that produce saliva, for example, from radiation to the head and neck and chemotherapy treatments for cancer, can reduce the amount of saliva produced.

Nerve damage. Dry mouth can be a result of nerve damage to the head and neck area from an injury or surgery.

Dehydration. Conditions that lead to dehydration, such as fever, excessive sweating, vomiting, diarrhea, blood loss, and burns can cause dry mouth.

Surgical removal of the salivary glands.

Lifestyle.Smoking or chewing tobacco can affect saliva production and aggravate dry mouth. Continuously breathing with your mouth open can also contribute to the problem.

What Are the Symptoms of Dry Mouth?

Common symptoms of dry mouth include:

A sticky, dry feeling in the mouth

Frequent thirst

Sores in the mouth; sores or split skin at the corners of the mouth; cracked lips

A dry feeling in the throat

A burning or tingling sensation in the mouth and especially on the tongue

A dry, red, raw tongue

Problems speaking or difficulty tasting, chewing, and swallowing

Hoarseness, dry nasal passages, sore throat

Bad breath

Why Is Dry Mouth a Problem?

Besides causing the aggravating symptoms mentioned above, dry mouth also increases a person's risk of gingivitis (gum disease), tooth decay, and mouth infections, such as thrush.

Dry mouth can also make it difficult to wear dentures.

How Is Dry Mouth Treated?

If you think your dry mouth is caused by certain medication you are taking, talk to your doctor. He or she may adjust the dose you are taking or switch you to a different drug that doesn't cause dry mouth.

In addition, an oral rinse to restore mouth moisture may be prescribed. If that doesn't help a medication that stimulates saliva production, called Salagen, may be prescribed.

Other steps you can take that may help improve saliva flow include:

Sucking on sugar-free candy or chewing sugar-free gum

Drinking plenty of water to help keep your mouth moist

Protecting your teeth by brushing with a fluoride toothpaste, using a fluoride rinse, and visiting your dentist regularly

Breathing through your nose, not your mouth, as much as possible

Using a room vaporizer to add moisture to the bedroom air

Using an over-the-counter artificial saliva substitute.

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