Encouraging Words for the New Year
From its inception in 2008, ALS WORLDWIDE has grown and expanded continuously. We aggressively seek and identify new research approaches and protocols that show promise. Our thorough investigation of the treatments and techniques that surface and resurface is an ongoing endeavor in order to separate scientifically based promising efforts from those that are baseless and in some cases, even harmful. To continue this important and valuable work, we need financial support. Please include ALS WORLDWIDE in your year end financial contributions so we can continue our efforts in the years ahead.
Patients and their families often use our services to share their views as well as deliver helpful and creative solutions they've developed to cope with the challenges they face daily. In this Newsletter, we'd like to share important information from two enterprising ALS patients.
Hans Koch lives in The Netherlands. He recently attended the 2009 World Stem Cell Summit in Baltimore and also became a research subject for the autologous stem cell protocol at Tecnologico de Monterrey. One of the issues confronting Hans was a "dropped foot". He's created what we're calling the Hans Koch Ankle Flexion Device for reducing the negative effects of dropped foot. It seems to serve him, and others who have now tried it, much better than the sometimes uncomfortable orthotic ankle devices used by many ALS patients who experience dropped foot.
Attach a strip of double sided Velcro around the ankle, connect one end of a steel spring to the Velcro and the other end to the bottom of shoe laces with a hook or keyholder. With this in place, the foot is reinforced and support is more balanced. Creative, simple and successful ingenuity at its best. Check the link for more detailed photos of this device. Thank you Hans.
John Roberts, also an attendee at the 2009 World Stem Cell Summit and a Tec de Monterrey stem cell recipient, is a sports enthusiast who lives in West Virginia. He's been searching for ways to continue his exercise that can be beneficial to other ALS patients. While stationary cycling is the best option for him, other ALS patients may enjoy swimming or water aerobics more. Cycling is one of the safest avenues to good muscle tone and cardiovascular health for those whose legs are not stable or have foot drop tendency. John uses a recumbent bike and suggests the following: start slow, listen to your body, stay at level one for at least a month, then increase by 15 minutes each week. Monitor heart rate and respiration rate for any signs of distress. If no complications are experienced, then continue to up the ante. Give yourself plenty of resting time when exercise is completed before moving from the cycle.
John recommends the addition of SPD (Shimano Pedal Dynamics) clipless pedals and compatible cycling shoes for foot and ankle support, but other brands of conventional cycling shoes can be used. More information can be found at Exercise for the ALS Patient
The Radiological Society of North America met in Chicago, IL from November 29 through December 4, 2009, at which time the Tecnologico de Monterrey use of MRI Diffusion Tensor Tractogoraphy as a diagnostic and analytic tool for ALS upper motor neuron symptoms was presented and positively received by the RSNA attendees. The presentation was based on research subjects studied in both Phase I and Phase II of the ongoing clinical test study of the autologous stem cell transplant protocol at Tec de Monterrey, now in Phase III. Phase II results are to be reported in a major scientific journal very soon. (To read the presentation more easily, use the zoom feature on the page button to enlarge the image 400%)
As the end of 2009 nears, please support the efforts of ALS WORLDWIDE by contributing generously to this organization. All donations made before December 31 are tax deductible for the year 2009. Forward this email on to friends and family as well. Tell them about the positive impact our organization has made in the lives of ALS patients. Recruit local businesses and corporations to become contributors to our efforts. Spread the word, help us build our base, expand our mailing list, and generate funding for our efforts. With your continuing support, we will bring ALS out of the hidden recesses and into the forefront of public and political awareness. PLEASE DONATE NOW.
Our Best Wishes for the New Year,
Barb and Steve Byer
December 16, 2009
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