Wednesday, April 23, 2008

Update on Mary Kay Engel’s Riding for Rehab Cross Country Feat

Mary Kay Engle continues her Ride for Rehab through Louisiana and Mississippi this week. She is riding with a group of other women bicyclists, all over the age of 50. One rider is a stroke survivor. Her goal is to raise money for the Rocky Mountain Stroke Association to be used for scholarships for stroke survivors. In 2006, Mary Kay’s sister, Kathy, suffered a stroke. As is often the case with stroke survivors, Kathy’s immediate care used up available insurance money. Through the efforts of her family and friends, Kathy’s rehabilitation continues. Specifically, through the affordable services and scholarships available through RMSA, Kathy is able to attend weekly therapy classes, gaining improvements physically and emotionally.

Mary Kay’s preparation began months ago as she turned her casual bike riding into true cycling, pushing herself on longer and longer rides. She learned about this group of women planning to ride cross country for various causes and she knew it would be something for her. She made the commitment last fall to join the group, buying a new bike, working out more diligently, and planning how she would be away from her family for two months. Mary Kay’s ride began on March 6 and will end in St Augustine, Florida on May 2nd. when the riders dip their front tires in the Atlantic Ocean!

You can see photos, read Mary Kay’s observations and donate at www.strokecolorado.org.

Tuesday, April 22, 2008

Carman's Corner

My, oh my, oh my! I do believe most of Arvada was enjoying the annual kite show on Saturday, April 5th which we mentioned in the first Carman’s Corner. While most of my expectations were met, I’m so sorry to report that I thought lots of handicapped parking would be possible. What there was, quickly filled up. The day was marvelous with colorful kites stepping into and out of the skies. There was free popcorn, gifts galore, dogs and people. We saw quite a few others with disabilities. If that was you, I hope you enjoyed the color, too!

For something really colorful, if enough of us are interested, Arvada Art Center would entertain the idea of starting a wheelchair dancing class in the fall. The class would explore the joy of wheelchair dancing with instructor Teri Westerman. Teri has been dancing in a chair for over 30 years focusing on square dancing and ballroom. If you are interested, please call The Arvada Center at (720) 898-7200 and ask for the Education Director requesting the class. If enough of us call they would consider holding it again. Then later, after we have learned a move of two, wouldn’t it be fun to have our own dance at Capabilities?

Happy Trails…. Carman

Guest blogger: Elizabeth Ouellette: My Son, CMT, and I

We are so privileged to work with the folks who provide support to those with CMT, Charcot Marie Tooth Syndrome. We have written here before of the disease and its impact on those who live with it. The local chapter that meets at Capabilities brings in speakers of all types who have inspiration, medical knowledge, research, and information about products that help with day-to-day living. At the next meeting on April 26 (see Events for more details and to RSVP), Elizabeth Ouellette who serves on the national board of CMT and is a generous donor, along with her husband, to a fund established for researching a cure for Charcot Marie Tooth Syndrome. We are delighted to feature Elizabeth’s story of her journey with CMT, which affects her son, Yohan. For more information, please contact Diane Covington at (303) 635-0229 or dmcovington@msn.com.

My Son, CMT, and I

My son Yohan, currently 15, has Charcot-Marie Tooth (CMT) disorder, the most commonly inherited peripheral neuropathy; which has nothing whatsoever to do with a tooth or your teeth! CMT affects the peripheral nerves, which in most cases causes high arches, hammer toes, muscle wasting and tightness of the arms/hands and the feet and lower limbs. Foot drop is not unusual and most individuals experience sensory and motor loss, resulting in numbness and muscle atrophy. Other symptoms include muscle cramping, loss of stamina and neuropathic pain.

I had never heard of this disorder before my son was diagnosed by a very sharp pediatric neurologist who recognized his symptoms and requested a genetic test for CMT1A. Neither my husband nor I tested positive for CMT, so Yohan is considered to have a “de novo” genetic mutation, meaning that a spontaneous alteration in a gene occurs for the first time in one family member. Well, the story goes that my husband and I were initially stunned, but shortly following Yohan’s diagnosis, I decided that until there is a treatment and cure for CMT, I would get involved in advancing his cause. Presently, I am very active in spreading awareness of CMT, fundraising for CMT research and continuing to work with the Charcot-Marie-Tooth Association, who is dedicated to finding a cure for this untreatable and often disabling disorder.

Yohan was born in 1993, at which time I was living in Grenoble, France where I had met and subsequently married my husband, Gilles. During pregnancy, I noticed that my feet started to burn and felt painful. I figured it was one of those many symptoms that go along with pregnancy. Unfortunately, the pain and sensitivity only increased following after Yohan's birth. I became a distraught mother trying to take care of a small baby while trying to deal with bilateral foot pain, pain that not even the best French physicians were able to treat, much less diagnose.

I had always been extremely athletic, a bit too competitive and played virtually every sport known to man. If I did not ride my mountain bike ride, climb a mountain or play 10 games of squash in the afternoon, I felt cranky, unhappy and irritated. This foot pain was cramping my style. In addition, I was trying to learn how to take care of a newborn, with my husband, who was working insane hours, and a bit of help from a few friends. How I missed the wisdom my mom had to offer and the attention of my brothers and sisters! Yohan was a great baby, but like many infants, he cried frequently and much of my energy was spent trying to understand what my little boy wanted. My foot pain was growing increasingly worse, as was my anxiety about my inability to walk and exercise.

By the time we moved to California, at the end of 1995, I was no longer able get the groceries, take walks, cook family dinners or much of anything else that required me to be on my feet. After 2 1/2 years of searching and seeing many physicians, many of whom thought that I was a hypochondriac or a malingerer, I still did not know why I was having continual pain and more importantly, I had no idea what to do about it.

Once in California, I sought out a physician who would be able to “get rid of” the chronic pain that had developed. More disturbing was the fact that I started to use the mobility scooters at supermarkets to get my groceries, asked my physician for a handicap placard and even purchased a wheelchair to get out into the world and take part in life.

Consequently, I also decided to go to graduate school and study psychology, a field which has always intrigued me. I figured if I couldn't walk around and enjoy the world on my terms, I would satiate my intellectual curiosity and attain a Masters in Transpersonal Psychology. This course of study not only helped me understand myself, but others as well. In retrospect, this was a good move, as I became very focused on the materials which would eventually help me relate to people on many different levels (my husband hates my analyzing others, especially if it has to do with him!).

As all these events were unfolding, Yohan was growing quickly and seemed to enjoy his new home in California. When he was around five years old, we put him in the French-American school, where he seemed to thrive. He had a lot of friends and he warmed to the teachers easily. Over the next several months, my husband and I noticed that Yohan increasingly walked on his tip toes. However, when I mentioned this to his pediatrician, she told me that many kids walk on their toes and in 95% of the cases, it was nothing to be alarmed about I was dismissed. Nevertheless, I intuitively felt that something was amiss. I must have brought Yohan to see at least four to five physicians, who told me not to worry, but I did anyway.

By the time Yohan was seven years old, his stamina had decreased and his hands betrayed a small tremor, making handwriting a nightmare. He also started to have neuropathic pain and could not walk long distances. His friends started to distance themselves from him as he was not able to hang on the monkey bars, ride a bike or play the same games that they did. His interest in school dropped dramatically and our beautiful son gradually became introverted and self-conscious. This was a very difficult period for the entire family.

Finally, at the age of 7, he was diagnosed with Charcot-Marie-Tooth disorder and most of his physical symptoms began to make much more sense. By this time, we had transferred him to our local public school, but he was missing so much school time because of doctor appointments, the rigid requirements were too much for all of us. Thankfully, we found a private, alternative school where he regained his love of learning, self-confidence and intellectual curiosity. He is graduating this June and, looking back, this was one of the best moves we had ever made as parents!

In the meantime, I found a pain physician who acknowledged and authenticated my chronic pain condition and helped me with a rehabilitation program to regain strength, mobility and hope for the future. First and foremost, he gave me a diagnosis – idiopathic
small nerve fiber neuropathy, which is, in essence, a peripheral neuropathy. I took classes in chronic pain management where I learned to manage my pain with various cognitive behavioral techniques as well as progressive physical therapy. Today, when the pain flares up, I still struggle with the anxiety and worry that I may find myself one day back in my wheelchair, but luckily, that friendly voice in my head reassures me that I am able to deal with the pain and manage it appropriately.

I am no longer in a wheelchair and can now walk up to three miles and stand for more than 10 or 15 minutes at a time. I no longer need little portable chairs at the airport to help me with long lines or the motorized scooter at the grocery store. My pain is still present, but it is no longer in the foreground. It has become a background noise I have learned to live with. Moreover, I do believe that things happen for a reason and if I had never experienced disability and chronic pain, I would have never been able to have the beautiful relationship I enjoy with my son, Yohan. Furthermore, I would have never ever been able to relate to CMT patients or the everyday reality of getting up each morning despite limited abilities from a little known progressive disease.

Presently, I am very involved in the Charcot-Marie-Tooth Association. I love to write articles about my experiences in the domain of CMT and my joys and frustrations of raising a child with different abilities. I am currently on their Board of Directors and my husband and I have set up the fund to help finance CMT research. I also started a CMT support group in the Bay Area as well as provide assistance to those across the country who would like to start or attend a CMT support group. I have enormous hope for the future of CMT research. A treatment will be found in the very near future and a cure for this disease is not far from sight. This I believe wholeheartedly. In the meantime, I am determined to continue all my efforts to provide hope for a better future to everyone affected by this disease.

Sunday, April 20, 2008

CALL FOR PRODUCT TESTERS

Are you a gadget person? Do you love trying out new things? Have you been waiting for someone to ask your opinion about a new product? Now is your chance!

Capabilities hosts a Colorado inventors’ showcase in June (date to be finalized shortly). We are looking for adventurous and opinionated consumers who want to learn about interesting new products and have some fun “judging” them. Owners Pam Pressel and Kathryn Arbour will take your advice into consideration as they make decisions about buying new products for their unique store.

Contact us if you are interested and we’ll fill you in on the details.

Saturday, April 19, 2008

Time to Move! Choosing Mobility That’s Right For You

It’s Spring! It’s all about getting outside and going places again. Whether you have a permanent or temporary injury or illness, or whether you just don’t have the umphh you once had, considering something to assist your mobility might be on your mind. Or if you already have some mobility equipment, it might be time to upgrade. Here are a few tips to keep in mind when shopping for something that will get you where you want to go.

How do your current mobility tools, if you have them, work for you? Knowing what works and does not work for you is sometimes half the battle. If you like some features of your current equipment, but not others, make a note of that before you talk with us. That way you can describe clearly what you like and don’t like.

Where do you want to go? What do you want to do that you can’t do so easily now. Identifying the kinds of activities you most enjoy and need to do is a first step in assessing your mobility needs. You might do just fine with a cane most of the time, for example, but when you go to the zoo with the grandkids or shopping or on a long walk with your honey, you find the cane just does not give you enough support. Looking at a walker with wheels and a seat or an electric scooter for such occasions might make all the difference in your enjoyment level. Consider several different types of tools depending on your activities.

How have your mobility needs changed over time? Are your facing a mobility challenge for the first time or is your condition progressing? Does the time of day or intensity of activity affect you? If you have a temporary situation you might consider renting equipment to try it out. Remember that there are many tools out there, so don’t limit yourself to just what you have seen or heard about before. Talk with us to explore alternatives that might be infinitely more comfortable or suitable to your situation. If you are living with a more permanent situation, or a progressive one that will change your mobility over time, talk with your doctor or physical therapist to get a sense of just how quickly things might change so you can take that into account when making your purchase.

Is the equipment part of your treatment or rehabilitation plan? In many instances involving rehabilitation, it’s quite clear that you will need a mobility device to continue your progress. In other cases, you may know that it is more a matter of your comfort. And then there is the great gray area of whether insurance or Medicare will help cover the costs of your equipment. We have written extensively in our blog about the latest Medicare requirements. For other insurance, you will have to speak with your representative to find out if your needs match eligibility requirements. In any case, speaking with your physician or physical therapist will also help clarify if and how a particular piece of mobility equipment will help you.
What makes you comfortable? While there are lots of techniques we use to ensure that a piece of mobility equipment fits you properly, one of the key measures is how comfortable it feels for you. Don’t settle! Be persistent with trying things out, describing just what makes you comfortable, what you hate. Sometimes renting something is a good way to test the waters, especially if you have never worked with a particular piece of equipment before. Being comfortable will ensure that you will use the equipment. You probably already lots of things lying around the house that you thought you’d love, but just did not work out.

How will you integrate the equipment into your daily life? This is an extension of the comfort question. Let’s suppose your break your ankle while enjoying one of your favorite outdoor activities. Once you get over the initial pain and absolute annoyance of your spring and summer being interrupted, you do have a few choices you can make to ensure you will heal as fast as possible. Nearly everyone knows about the ubiquitous pair of crutches, one of the oldest pieces of mobility equipment on the planet. Did you know you can get comfy armpads and handgrip pads to take the sting and ouch out of using the crutches? You don’t have to wrap a bath towel around it to endure the agony. Or, have you seen the many forms of knee walkers out there? We have one we think is the best around called the Rolleraid. It gives you a kind of independence you just can’t recreate with crutches. Or, if you have been saving to buy a scooter, but don’t think about how you will transport it, you could be disappointed when you find you are still trapped at home because you forgot to inquire about a lift or to check out the travel scooters that come apart in three or four pieces so you can pop them in the trunk.

Whatever your situation, find folks you can trust to talk with. Contact us to learn more about the array of mobility tools that might work for you. Share your experiences about choosing the right piece of equipment here.

Friday, April 18, 2008

Eat, Drink and Be Merry

Eat, Drink and Be Merry! A recent British study revealed more about how important it is for overall health, and especially brain health, to strike the right combination of food, drink and enjoyment. The study underscored some of the tips that are now becoming common knowledge, but still so hard to implement regularly in our lives. Eating fruits and vegetables every day is a sure bet for helping extend a healthy life. They contribute enormously to sound functioning of the brain as well. Drinking plenty of water and a little alcohol (or grape juice if alcohol does not or should not be a part of your particular regimen) also play a role in adding to your overall physical and brain fitness. And, most importantly, enjoying life and minimizing the effects of stress offer the most advantage to living a full, long, healthy life.

Fascination with centenarians (those who live to 100 or more) builds among scientists as the list of those living to 100 and beyond grows. There are new studies now for what are called supercentenarians, those who live to 110 and beyond, currently numbered at 75 known examples by the Gerontology Research Group of Inglewood, CA. For those who have been identified, the New England Centenarian Study draws some blood to research and analyze. Analyzing DNA and genetic composition are the keys to uncovering some commonality that will crack the code of longevity.

Edna Parker of Shelbyville, MD knows all about this exclusive club. She turned 115 on Sunday, April 20. During her celebration her 59 year old grandson commented that she had never been a worrier. Maybe staying cool and calm, handling stress effectively, does have something to do with staying alive longer. Dr. Tom Perls who directs the New England Centenarian Study says that people like Edna handle stress better than most of us.

She was widowed in 1938 and lived alone until 100. She has now outlived her two children, however, and lives in assisted living. She had on a polka dot dress and pearls for her birthday party. She outlives her two sisters, one of whom lived into her 90s and the other 88. Dr. Nir Bazilai, director of the Albert Einstein College of Medicine’s Institute for Aging Research in New York says that “longevity is in family history,” among other factors.

As Edna reminisced and looked at family photos, she became the oldest living person on record. Happy Birthday, Edna!

To see what your prospects are of living to 100, go to livingto100.com and take the survey. It’s an interesting way to see what kinds of habits and lifestyle choices (at least for the moment) that science is considering to be part of the formula.

As for brain health, learn how to get 10 years of your brain life back, Sign up for a free demo of the Brain Fitness software program on June 10. Learn the science behind brain fitness and how fun focusing on your brain health can be. See our Events calendar for more details and to RSVP.

Featured Product: Go-Go Elite

The Go-Go Elite by Pride offers you one of the finest travel scooters on the market today! Designed in a three-wheel or four-wheel version, this electric scooter travels 10 miles on a charge. You can move along up to 4.25 miles per hour! It comes with choices of blue, red or silver shroud covers that you can change depending on your mood and where you are going. With feather-touch disassembly, you can have your Go-Go apart and in your car in a matter of minutes. This modular design not only works with a lifestyle on the go, but it makes servicing a breeze. Price: $1595 ON SALE NOW for $1295. Save $300. (some restrictions apply)

Wednesday, April 2, 2008

Moist Heat Works

No doubt you’ve sprained your ankle once or twice. Or, if you are of a certain age, you have probably felt an ache or two that can be chalked up to a pulled muscle, or the beginnings of arthritis. You might be among the millions who suffer from one of the many forms of arthritis. We’ve written here about arthritis on several occasions. See our previous blogs here.

We all seem to have that instinct when pain arrives whether from a sprain or the first twinges of arthritis to get some ice to the site. And, for the most part that instinct is right. Applying cold therapies to acute situations is an important first measure. We’ll right more about cold therapies a bit later on. For now, let’s discuss heat therapy, especially moist heat treatments.

Applying heat is preferred once an acute situation has become chronic, or once the initial swelling from the acute situation has subsided. Moist heat works extremely well for pain, stiffness and secondary muscle spasms in cases of chronic arthritis. Pain in the lower back, neck and jaw (TMJ) respond well to frequent moist heat treatments. Use also in cases of degenerative joint diseases, soft tissue traumatic arthritis and inflammation of joints causing bursitis and other conditions. (There are, of course, situations where heat is never the preferred approach. Always discuss treatments, even home treatments, with your physician.)

Moist heat is often preferred over dry heat because it provides deeper penetration of the tissue and muscles at the same temperature. It also has the ability to change the temperature of the tissues in questions, thereby obtaining more effective response from the nerve endings.

Using moist therapies that retain warmth to the touch for 30 minutes or more is essential to get the full value of moist heat. Baths, moist heated towels, saunas, and hot water bottles are some of the common sources of moist heat therapy. There are also numerous products on the market that help you achieve relief from moist heat. Many contain beads that when heated release enough moisture to create the soothing and healing effects of moist heat. Others contain gel-like substances that retain heat for long periods of time, while delivering an almost “icy hot” sensation to the affected area.

We are ever on the search for products that help with arthritis. It is one of the most popular reasons people come to Capabilities. We were happy to find a brand new line of arthritis relief products, Therall. Available from one of our trusted suppliers of braces and orthopedic wear, FLA, we already love the simplicity and effectiveness of this line. There are essentially three categories of therapeutic products available through Therall. One features the characteristic beads mentioned above. Therall Foot Warmers, sporting a comfy fleece exterior, become a pleasing temperature when warmed in a microwave. Intended only for use while seating or lying down, these foot warmers provide instant relief to tired, aching feet. Used on a regular basis the foot warmers help improve circulation when combined with exercise and regular foot care.

Because we see so many customers every day with aching backs, we were happy to learn as we investigated this line of arthritis relief that back care features prominently. The Therall Moist Heat Pad offers a large enough surface to use on the back, thigh, or other large muscle areas. It is flexible enough, however, to work well on necks, shoulders and smaller areas. Once heated the oval-shaped pack releases heat slowly and evenly to the affected area.

This product also comes in the form of wraps for joint areas, ankles, knees, wrists.
The Therall Joint Warming Knee Support, for example, is constructed with four-way stretch material for light compression to counteract swelling. The material has ceramic fibers that insulate the joint by retaining heat and slowly reflecting it back into the joint and surrounding tissues. The result is therapeutic heat penetrated deep into the aching joint, muscles and surrounding tissues to provide long-lasting, soothing relief. Circulation around the tender joint is enhanced, thereby improving joint mobility to allow for faster return to daily activities. This support can be used with the Therall Body Warmer Patch (sold separately) for over 12 hours of soothing heat therapy.

Finally, we liked their ointment choices. They offer two, one mentholated for simpler aches and pains, The other, Capsaicin HP, is a powerful ointment that contains purified capsaicin, a natural pain reliever that occurs (famously now after much has been written about it) in hot peppers. This triple strength formula goes up against some of the best known names for topical arthritis pain relief.

The pain and discomfort of arthritis stops many in their tracks, affecting their ability to enjoy everyday activities. For some, work becomes impossible as the pain grows. Getting a handle on arthritis in its early stages can help you manage this condition over long periods of time. Moist heat therapies in conjunction with exercise, the right diet and proper sleep, will help ease the inflammation that is at the heart of arthritis.

Tell us your story. We are always interested to get information on how you cope, what works for you, what does not.

Tuesday, April 1, 2008

What’s Pam Been Up To Lately?

As you know, we both spend a lot of time not only with our customers in the store, but also collaborating with folks in many Colorado communities. Pam writes today about one of the many interesting and engaging groups she has been involved with over the past year. They are developing a model that will become increasingly more common as people look to stay in their homes regardless of age and ability. Please let us know if you are involved in any similar activities in your community. Contact Pam with your questions or if you would like to get involved, too.

Washington Park Cares

Last year I got involved with an innovative neighborhood group, Washington Park Cares, a group whose purpose is to support the idea of “aging in place.” The Washington Park neighborhood here in Metro Denver is what is now called a NORC, Naturally Occurring Retirement Community. There are many other examples of NORCs across the nation, so it is an idea coming into its own because of the aging Boomer population. Many of the so-called “silent generation” also express a desire to “age in place,” that is, to stay in their homes safely as they age.

Washington Park Cares is the result of hard work from two very active members of the community, Bill and Pera Beth Eichelberger. They recognized the difficulties that seniors face as they try to stay in their own home and decided to find ways to overcome the obstacles. Over the past year they researched, had community meetings and gathered a group of like-minded neighbors to establish an organization that has as its mission to “Help neighborhood seniors connect with services and resources to continue life on their own terms, with dignity and independence, in their own homes.” Washington Park Cares is modeled after a successful organization in Boston, MA, Beacon Hill Neighborhood, a membership organization that provides a variety of services to its members, ranging from routine home maintenance and upkeep to cultural events to home health care services.

We began Washington Park Cares with an organizing committee and now have an energetic board of directors. We work with groups from non-profits, such as churches, recreation centers, and governmental agencies to set up the services that will help people stay in their homes rather than having to move to retirement communities or nursing homes. Our goal is to provide volunteer services, referral services and access to social events.

Through a continuum of volunteers, service providers, and community groups, we are establishing a network of support for the residents of the Washington Park area to help stay at home. Washington Park Cares will have a one-call system that will get the services you need whether it is as simple as helping change a light bulb or bigger services such as adapting a home to make it safe and accessible. We are building a group of volunteers; it is our intent to certify vendors for other services.

Our kick-off party for Washington Park Cares will be Tuesday, June 10 from 4 to 7 P.M. at the Boathouse in Washington Park on Franklin St. in Denver, CO. We hope to educate the community about Washington Park Cares and to sign up charter members. There are many opportunities for Washington Park residents to volunteer as well as to request services. If you are local, please plan to join us on June 10th to learn about WPC and other types of NORCs.

As we follow the boomer generation and their journey through the aging process, this type of organization will become even more popular. People of all ages want to stay in their homes. What better way to do that than by bringing back the friendly neighborhoods where neighbors help each other!

Please post your thoughts about this concept or give us details if you are involved in any similar activities in your communities.

Photo credits: MicheKerr, ZenobiaJoy.