New Post and pages coming soon!
New Post and pages coming soon!
When: December 10th, 2016- 11:00 am to 1:30 pm
Where: St. Joseph’s Hospital-350 W. Thomas Rd. Phoenix
Mercy Conference Room, across from Starbucks
No speakers, just snack food and beverages and mingling of our members who can attend. Save the date, that’s why the early invite, and we promise to fill you only with good food and friendship, AND as always, Support!
As the date approaches, we’ll let you know the details!
350 W. Thomas Rd. Phoenix, 85013, Mercy Conference Room, inside the Main Entrance across from Starbucks!
Please bring a small, inexpensive stuffed toy, Christmas or other kind, GENTLY USED, CLEAN is okay! The donations are to help stock Kylene’s Kritter Korner @ Maricopa Medical Center in Sourth Phoenix, in memory of Kerry Lynn Cordier’s adult daughter who passed away. Each child that is in the Hospital is given a toy and for some of these children, may be the only item they receive to brighten their hospital stay or the Holidays!
Please DO NOT WRAP the toy, as we will separate them.
Please respond by 12-3 if you plan to attend. either by FaceBook, email or respond here! Hope to see many of you there!
Happy Thanksgiving to all!
By Shawna Countryman
A diagnosis of syringomyelia (SM) and/or Chiari (CM) may affect us in many different ways. Dealing with the various facets of a long-term condition can leave one feeling alone, frightened and confused. Not only will we have to deal with the physical attributes but also the emotional aspects. Emotions can vary from anger, disbelief, frustration, denial, loss of control, depression, fear, anxiety or uncertainty. An effective way to fight back is to make the most out of our lives. Take the time to experience the good things in life, the things that give us real pleasure.One of the most important things to remember is that this diagnosis is not an end, but the beginning of a new learning life experience. Although it would be nice to pick and choose what our life experiences would be, we are usually not given that opportunity. With the right focus, we can decide whether to look at our situations as negative or as positive. We can choose the direction in which we take the experiences. Living with SM/CM will bring many unexpected challenges, but that doesnt mean we cant be in control of our lives.If we are living with a chronic condition, we are courageous. A longstanding disorder can add a new set of challenges to our lives. In the process of meeting these trials, we will continue to learn how to confront our fears and move beyond them. We may feel that we lose some of our independence if we have to depend on family members, friends and health care professionals more than we did in the past. None of these changes are easy. While SM/CM brings many challenges, there are ways we can face them and live productive, healthy, fulfilling lives.Change our outlook: Realize that only we can change our outlook on life. Some situations cant be changed, so it is up to us to learn how to deal with the situation effectively. Maintaining a positive attitude can decrease stress and help us to get the most out of life. We may not be able to change our diagnosis; however, we can become involved so that we get the most out of our lives by giving ourselves a new perspective as well as renewed hope.Educate Ourselves. Learn all that we can about syringomyelia and Chiari. Knowledge is power. The more we learn, the better we will be able to empower ourselves.Develop a Healthy Attitude. A healthy attitude will help us to balance our positive and negative thoughts.Focus Our Attention on Positive Things We Enjoy. Continue a hobby, project or skill, or start a new one.Express Ourselves. Find ways to express our feelings in a positive way, such as writing in ajournal, exercising, painting or joining a support group.Develop and Use Support Systems. Share our feelings with family, friends, physicians, counselors or others who have the same diagnosis.Realize We Are Not Alone. We may feel isolated and that no one understands what we are going through. Know that we are not alone. Meet and share with others who are going through some of the same things we are.Laugh. Become involved in activities that make us laugh. No matter how sad we feel, laughing can make the world seem like a better place.Relax. Learning how to relax is one of the most important ways to cope with stress in a healthy way.Love. Love ourselves, our families, our friends and others who are important to us.Read. Read something that inspires us. Whether it is fiction, non-fiction, poetry or literature, find something we are interested in and start reading. We can join a book club or web ring, which enables us to discuss our thoughts with others having the same interest.Everyone sees situations differently and has different coping skills. By understanding our reactions and ourselves, we can learn to deal with our diagnosis effectively. Some may be able to continue daily activities as always. Others may have to trade in their favorite activities for new ones. There is no single right way of coping. Each of us must figure out what works best. However, a combination of the following coping skills is ideal.Emotional Identification- we may prefer to deal with our feelings and find social supports.Distraction Identification- we may use hobbies or activities to help take our mind off of the situation.Task Identification- we may feel comfortable analyzing the situation and taking action to deal directly with the situation.Just as stressors wear us down, being active can rejuvenate, restore and refresh us. The following list may help us identify what we can do to remain active. By taking action, we have more control over our lives.Volunteer Work. Helping others can take attention away from our own worries. Find an organizationwhose mission and goals we support; give to others.Use Relaxation Techniques. Meditation helps to ease the mind so we can think calmly throughout the day. It also helps us to focus on the positive. Meditation puts us in control of our thoughts. Other ideas are deep breathing, yoga or massage.Hobbies. Take time to focus on a hobby. Whether it is writing, photography, painting, crafts,collecting, gardening, sports or any other hobby, do it with passion and enthusiasm. Consider it nourishment for our souls.Socialize. Become more active in church; attend a gathering, a concert, arts and crafts fair or a support group.Exercise. If we are able to participate in exercise, it will help to keep our bodies and minds healthy. If we cannot actively participate, we can go to a park and savor the environment; delight in the flowers, birds and trees. Watch others who are also enjoying being outside.Get Away. Taking a break from our day-to-day routine can be stimulating and/or relaxing.Get Enough Rest and Sleep. It is important to give our bodies the rest and sleep they need,especially when we are dealing with a chronic condition.Watch Our Diet. Alcohol, caffeine, sugar, fats and tobacco all put a strain on our bodies. A diet with a balance of vegetables, whole grains, fruits and high in protein but low in fat will help create good health.Devote Some Time Each Day to Ourselves. Take time to relax by listening to music, reading a book, watching a good movie, or playing a game.Tackle One Thing At A Time. Trying to do too much at once will only leave us frustrated. Take our time; dont put pressure on ourselves, and dont try to be perfect.Late, great amateur golfer, Bobby Jones, was diagnosed with syringomyelia in 1956. He described how he faced this challenge when he said, I still cant accept this thing. I fight it every day. When it first happened to me I was pretty bitter, and there were times when I didnt want to go on living. But I did go on living, so I had to face the problem of how I was to live. I decided that Id just do the very best I could.Our situation can bring out the best in our character, such as patience, determination, motivation or empathy. Or it can bring out the worst. It is up to us as to which one we let prevail. People today can get so caught up in work or daily routines that they forget to look at the big picture. Having SM/CM may give us no alternative other than to slow down our hectic lifestyle. Look at this as a positive aspect, for it provides us the time to look at our priorities and make changes if necessary. When we live with achronic condition, every aspect of life takes on a new dimension. Our daily decisions and choices are taken into account more carefully. Take time to let the sun shine on our faces, smell the air after a gentle rain, or just listen to the activities of nature that surround us. And most of all, remember that we are not alone.For more information, please visit the ASAP website at http://ASAP.org
Symptoms of Syringomyelia (not limited to)
*Muscle weakness and atrophy, particularly in hands and arms
*Increased muscle tone (stiffness or spasticity) in arms and/or legs
*Abnormal curvature of the spine (scoliosis)
*Decreased feeling in hands and arms. Depending on extent and level of syrinx cavity, legs may also be affected. Sensation involved may be pain perception, temperature perception or position sense.
*Exaggerated sensation (hypersensitivity) in limbs, particulary arms
*Midline pain over the spine, particulary the thoracic are
*Burning pain in arms, over trunk and rarely, legs
*Join pain, particularly in shoulders
*Urinary incontience, sometimes with spasticity of bladder
*Dysreflexia: wide swings in blood pressure, often accompainede by profuse upper body sweating
*Drooping of one eyelid
*Syncope (fainting or near-fainting), which is relatively rare
It is not uncommon for some of these symptoms to be worse on one side of the body.
(Information from CHIARI MALFORMATION AND SYRINGOMYELIA
A handbook for Patients and their families
Ulrich Batzdorf, MD, Editor
Neurosurgeon Dr. Robert Spetzler was photographed by National Geographic for a story about how science is redefining life and death.