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Suzanne’s Physical Fitness Q&ACorner 1) Q: I hear so much about the 'core'. What does that actually mean and why is it so important to strengthen? A: The core encompasses the stomach, pelvic, and back muscles. When the core is strengthened then all activities of daily living may become easier, less strain on the joints, and perhaps less back pain. A strong core enables the body to be more erect, more balanced (helps to hold the body in a more upright position preventing any chances of falling), and makes the body feel more stable. A snowball effect will ultimately take place as you may notice an improved posture in the sitting and standing position. Strengthening your arms and legs are definitely needed for a workout regimen. But you're definitely leaving out an important part of the body if you don't work out the core. All the muscle groups work in tandem. If the core is weak, you may notice that you have poor balance, poor posture, back weakness, back pain, and weak stomach muscles. A good core tip is, no matter what activity we are doing it is so important to keep the stomach muscles 'engaged'. That simply means to keep the stomach tight...thinking that your navel is touching your spine. As a result of thinking that way all the time, you'll find that most activities will be essentially effortless. The following exercises are examples of various core exercises: Before you start any exercise program, please consult with your physician first. Please stop the exercise if you feel any sharp pain. It is normal to feel some muscle soreness and discomfort, but it should not be long lasting. A normal time-frame to feel some soreness is 24-48 hrs. after an exercise. The following exercises are safe to be done daily or every other day. a) Modified Sit-ups: lie on your back, knees are bent (if that's difficult - place several pillows under your knees), hands placed behind your head, tighten your stomach as you think of your navel going towards your spine, keep that position as you raise your head and shoulders up and down...keep the stomach tight throughout the repetitions. Perform 20 repetitions. b) Knees into the Chest: lie on your back, knees are bent, stomach tight - think navel towards spine - head and arms are down, raise your knees into the chest then slowly down...Perform 20 repetitions. c) Back Extension: (if you have spinal stenosis or osteoporosis please be extra cautious doing this exercise - do not come up too high)... lie on your stomach, place 1 to 2 bed pillows under your ribcage towards your pelvis, legs are down on the floor, arms by your sides with your palms up, keep your arms down, slowly raise your head and chest up towards the ceiling then slowly lower to starting position...Perform 10 repetitions...then perform another 10 with a 3 second hold. d) Arms Up Overhead: position as (c), raise your arms up overhead, (if that's difficult - please place them at a comfortable range), slowly raise your head, chest and arms up and down...Perform 10 repetitions ...then perform another 10 with a 3 second hold. 2) Q: Why do I have pain every time I try to exercise? Is that normal? A: It is not normal to feel pain. Perhaps the exercise you are choosing is a bit challenging for your body structure, size, and physical capabilities. It is important to realize that when you choose an exercise program, you are only competing with yourself. Never compete with your friend, spouse, family member, or a stranger at the gym. You will only hurt yourself. Exercise should feel good. The following are pointers to keep in mind: a) To tone: keep your weights light and increase your repetitions. b) Never strain to perform any exercise. If you are straining then the exercise is much too difficult or you have chosen too much weight. c) Body Form: is very important. If you find that you're slouching during a standing or sitting exercise...straighten your trunk by tightening your stomach muscles...remember to think of your navel towards your spine. d) Fatigue is normal with any exercise routine. Keep in mind that you don't want to fight the fatigue. That means...rest the body! 3) Q: I'm in a wheelchair for most of the day as I have suffered spontaneous fractures in my lumbar area. What exercises would be safe for me while I'm in my wheelchair? A: Use very light weights for your arms and legs. I would suggest 1-2 lbs. Have someone assist you putting the ankle weights on. Please show your physician the following exercises before you begin. Also, please stop the exercise if it causes too much pain. The following exercises are just a few that may get you started. I would suggest you doing them 4-5 times weekly. a) Knee Extension: slowly straighten one knee and hold the position for 3 sec. then lower ...perform 10 repetitions with one leg then do the same with the other. b) Thigh Raise: slowly lift one thigh up towards the ceiling then lower to starting position ...perform 10 repetitions with one leg then do the same with the other. c) Alternate Arm Push Out: holding onto the weights in each hand, palms face each other, push one arm out in front of you as you're straightening your elbow then return towards your body then push the other arm out...alternate with the pushing movement ...perform 10 repetitions with both arms. d) Bend and Straighten the Elbows: holding onto the weights, palms face each other, bend and straighten your elbows in front of you...alternating arms...perform 10 repetitions with both arms. One thing to keep in mind - NEVER push your weights up towards the ceiling or up overhead - as that puts a lot of abnormal pressure in your lumbar region.
Suzanne Krupskas is a registered physical therapist since 1978. She has experienced multiple symptoms from Gaucher disease since being diagnosed in 1981. Suzanne is an avid speaker on Gaucher disease, and has written several articles on the importance of exercise and physical therapy for those who are living with the disease. She can be reached by calling the NGF or by email: suzkrup@comcast.net. Financial Assistance Programs Available for Individuals with Gaucher Disease Care and Care+Plus Programs The National Gaucher Foundation, Inc. sponsors two financial grant programs to help families and individuals with Gaucher Disease to pay for certain Gaucher-related expenses. To be eligible for either program, an applicant must: a) Have Gaucher Disease b) Demonstrate extraordinary financial hardship for eligible Gaucher related expenses CARE PROGRAM The CARE Program grants funds to subsidize, or to purchase in full, a health insurance policy (primary, secondary or both), to which the patient is entitled or eligible, but for which the patient does not have adequate personal resources to enroll. CARE+PLUS PROGRAM The CARE+PLUS Program provides financial assistance to eligible Gaucher patients for a variety of Gaucher-related expenses, such as diagnostic tests, infusion charges, travel expenses, and over-the-counter medications. The program excludes deductibles and co-pays. Both programs involve an application process and review by the Care Board for determination of financial and medical necessity. The National Gaucher Foundation realizes that Gaucher patients have extraordinary needs that may cause a financial burden on themselves and their families. These two programs have been developed to lighten this burden. For additional information contact: Barbara Lichtenstein, Program Director of the CARE and CARE+PLUS Programs at (866) 346-8176 or (301) 963-4489. NGF’s Fundraiser Items Available Throughout the Year To purchase items in support of the National Gaucher Foundation and individuals with Gaucher disease go to www.gaucherdisease.org and click on Support the NGF. Our wristbands say, “Gaucher - Treat It & Beat It”. They are available for sale at our website at www.gaucherdisease.org for $5.00 each. Funds raised will help individuals with Gaucher disease, through research, education and awareness. If you are interested in selling wristbands in larger quantities, for a fundraiser, please contact Cyndi Frank, NGF’s Director of Development at cyndi@gaucherdisease.org or call her Toll free at 877-649-2742. And don’t forget our “ Little People” pins. They are one of a kind and a treat for the eyes as well as to wear and can be purchased at our website. To see all of the pins that are available, you can visit www.Lucinda.com. Currently in NGFs stock includes” Little People, Nurturing, Angels and Ladies Red Hat Pins( available on request. $14.00 each $5.00 Each If you are interested in selling these pins to help the NGF raise funds for education and awareness of Gaucher disease, please contact Sharon Adams at 800-925- 8885 or by email at ngf@gaucherdisease.org. For the latest News and Events visit our website often at www.gaucherdisease.org. All donations should be mailed to Sharon Adams: 61 General Early Drive, Harpers Ferry, WV 25425
Page 1 and 2: Gaucher Community News Summer, 2006
Page 3 and 4: In addition, the National Gaucher F
Page 5 and 6: Scheduled Events for September 2006
Page 7 and 8: NGF National Publications Overview
Page 9 and 10: National Gaucher Disease Awareness
Page 11: Join Us At The Carnival For Family
Page 15 and 16: Gaucher Awareness Online Auction Th
Page 17 and 18: In Memory Of Sam Bayliss by Mrs. Mu
Page 19 and 20: Genetic Alliance Announces 2006 Awa
Page 21 and 22: Webhits to NGF Site The chart below
Page 23 and 24: This ad, called the “Younger/Coll

Gaucher Community News - National Gaucher Foundation

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