Gaucher Community News - National Gaucher Foundation

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Suzanne Krupskas has been a registered physical therapist since 1978. She has experienced multiple symptoms from Gaucher disease since being diagnosed in 1981. She is an advocate and speaker on the subject of exercise and physical therapy and has written many articles on its importance for those who are living with Gaucher disease. She can be reached by calling the NGF or by email at suzkrup@comcast.net. Exercises to alleviate pain 1) Q: When I sit for a long period of time my right buttock hurts and at times causes pain down the leg. I had a right hip replacement 11 years ago. This pain started approximately one month ago when I changed my desk chair. Is there anything I can do to relieve the pain when I’m sitting A.R. from Rochester, NY A: Yes. You may try to place a folded hand or dish towel under your right buttock. That way your weight would be distributed more on your left buttock. You may not realize it, but you most probably weight shift more on your right buttock than your left. As a result, you are putting too much pressure on the sciatic nerve. Many times placing the towel underneath one buttock will solve the problem. Every individual places a certain percentage more weight-bearing on one buttock – and most often it is their dominant side. This advice should help – also try this in your car. 2) Q: My left hip has signs of avascular necrosis. I’m holding off on having a hip replacement as long as possible. I find that when I walk on my treadmill at approximately 3.2 mph at elevation 1 I do not limp however, if I walk outside – after 10 minutes I begin to limp. What is the difference D.K. from San Diego, CA A: When you are on the treadmill you are most likely holding onto the side or front safety rails. When you are holding onto the rails it takes a lot of pressure off your hip. Outdoor walking is different: there is wind resistance and uneven terrain. There are so many advantages to do both. Outdoor walking is beneficial due to being outside and getting fresh air and sunshine (vitamin D) – great for the bones. If you choose outdoor walking the days you are not doing the treadmill, you may consider using a cane. You would place the cane on your right side. To walk with the cane at a good pace you would move the cane simultaneously as you move your left leg forward. You may not want to use it, but at least it would be with you just in case you start to limp. The advantage behind using the treadmill is that you can use it rain or shine and there won’t be any wind or other extraneous resistance. Both methods of doing a walking program are beneficial for bone density and prevention of osteoporosis. 3) Q: I have a herniated disc in L-4, L-5 area. I also have a compressed vertebra in L-3. My orthopedist has recommended that I do an exercise called ‘press-up’. That’s when I get on my stomach and my hands are essentially under my shoulders and I push my hands into the floor as I straighten my elbows - my pelvis relaxes into the floor – my lower back arches. This exercise hurts a lot and causes more pain down my leg. The exercise that makes my back and leg feel better is a pelvic tilt. What should I do M.A. from Annapolis, MD A: You must discuss this with your orthopedist. He most likely wants you to perform a press-up so that the herniated disc relieves itself from the nerve. Going onto your stomach, helps to push the disc away from the inflamed nerve. My suggestion is to perform the press-up with a small pillow underneath your pelvis and not to come up as high as you may have been. The pillow will help to support the lower back. The pelvic tilt is working the back the opposite way. As you are tilting the pelvis back – you are strengthening the abdominals and the lumbar region. The best way to perform the pelvic tilt is: lie on your back, knees are bent, place hands by your sides, rock your pelvis back as you tighten your buttocks…think of pushing your bellybutton in towards your spine and hold the position for 3 to 5 seconds. Also the ground surface is hard and unforgiving on the joints, whereas the treadmill has shock absorbers to relieve a lot of the weight-bearing compression. 24
4) Q: I’ve been reading your articles for years and I always admire how you help others. Perhaps you can help me. I have extreme right shoulder limitation. I had a bone crisis in the shoulder at least 8 years ago – but I never did get full use after suffering with the pain and fever. Do you have any exercises I can do to get more range of movement or is it too late K.P. from Charlotte, SC A: It all depends on how limited you are. It sounds as if you have accommodated for the decreased shoulder joint motion, however there is a chance for the muscles, ligaments and tendons to elongate with the correct form and exercise. First, consult with your doctor prior to performing any exercise routine. Compliancy with the exercise regimen is important to see and feel the improvement. Only go to the range of movement you have and then hold that position for the described count. YOU MAY FEEL A LITTLE SORE WITH THE ROUTINE – BUT YOU SHOULD NEVER FEEL PAIN. Perform the following exercises 3-4 times weekly: 1) lie on your back, clasp your hands (palms to palms), knees are bent, pillow under your head, raise your arms up towards the ceiling keeping your elbows straight – try to raise them up and over your head – hold the stretch for 10 seconds…repeat for 10 times; 2) lie on your back, (same as #1), place your hands underneath your head, push your elbows back in towards the pillow and hold the stretch for 10 seconds…repeat for 10 times; 3) sit on a firm chair, clasp your hands (palms to palms), both feet on the floor, raise your arms up towards the ceiling without tilting the body – hold the stretch for 10 seconds…repeat for 10 times. May 8, 2009 Dear Stan Yesterday, I lost my dear friend. My heart is breaking and tears are flowing. You left us all too soon. I was proud to be your friend and co-president. Your strength gave me strength. I will miss our conversations and your wisdom. Your energy and selfless devotion inspired me. I admired how you took tragedy and turned it into a constructive force. Working with you was an honor. Thanks for being you. What will we do without you We will celebrate your life to keep your memory alive. We will continue your never ending crusade to eradicate genetic diseases. We will cherish our memories of you. We will keep you in our hearts forever. Your brilliant light will never fade. Your star will twinkle brightly in the sky. Correction to Spring 2009 Gaucher Community News With love and friendship, Marion Yanovsky Co-President - NTSAD, NY Area The NGF incorrectly listed the following donation under “Individual Gifts” (page 6). We apologize for listing Alan and Carole Kushnir’s donations in the $1 - $99 category. The listing should have appeared under the $100 - $499 category and we thank them for their generous donations. 25
Page 1 and 2: Gaucher Community News Fall/Winter
Page 3 and 4: Emily’s New Adventure Emily’s N
Page 5 and 6: Dear Gaucher community, Shire HGT I
Page 7 and 8: Neuronopathic Gaucher Disease Gauch
Page 9 and 10: To our children who are still fight
Page 11 and 12: The intense part of her marathon tr
Page 13 and 14: NGF STATEMENT OF PUBLIC SUPPORT REV
Page 15 and 16: IN HONOR OF • Luvenia Corbin for
Page 17 and 18: IN HONOR OF • Izzy McFalls Walk f
Page 19 and 20: IN HONOR OF • Mr. and Mrs. Larry
Page 21 and 22: IN MEMORY OF • Herbert Kaufman fr
Page 23: More Patients on Zavesca® (miglust
Page 27 and 28: In this issue of Gaucher Community
Page 29 and 30: I’ve always felt in debt to many
Page 31 and 32: Pfizer and Protalix Announce Partne

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