Guest guest Posted April 22, 2002 Report Share Posted April 22, 2002 PERSPECTIVES Vol. 2 Issue 13 April 2002 IN THIS ISSUE: 1) Dreams, Goals, A Mentor and My Own Animal Planet - by J.J. 2) Stress Relief and This Old House - by Stuart H. 3) The Pleasure of My Modified Driving Van - by Alice R. 4) Windows on My World - by Mike M. 5) Disability, Procreation, and Hope - by Paolo Vinci, M.D. 1) Dreams, Goals, A Mentor and My Own Animal Planet - by J.J. It's no secret that CMT doesn't affect our brains. I must have intuitively known this, as my childhood dream was to become an astronaut. Never mind women weren't even much involved in the " space race " , and my hero, Glen, was male. As an only child growing up in the country, I learned to be alone comfortably and nature gave my imagination freedom. While my friends built treehouses, or played with dolls, I continued to build 'flymobiles'. Only problem was I keep falling out of the cockpit and none ever got off the ground! During my teens I had two serious CMT foot surgeries that kept me out of school for months on end; good thing too, as I was quite bored. My parents hired a special tutor who came 4 days a week and made sure I kept up my basics in English, Math, History and Science. Somehow going to school in bed was a lot more fun than those musty classrooms and I did not have those fire drills to contend with. Martha was an interesting tutor in many ways; perhaps the most intriguing issue was she had survived polio. She walked with 2 canes and had a brace on one leg. As our relationship developed, I discovered Martha was the smartest, bravest, and neatest person I ever met. Forget Glen. I had a new hero! She was quick to pick up my interest in sciences, the natural world and animals (ok, so my 2 dogs and 4 cats attended our tutoring sessions too!) I continued meeting weekly with Martha during the rest of my high school years. I suppose my parents " arranged " this, but her influence on me made me who and what I am today. This was all way before " mentoring " was a common word and " disability awareness/rights " were issues. She did much more than just make sure I passed English. To this day I credit her with enhancing my self-worth and self-esteem; which has carried me a long, long way. Sometimes we would just take short walks in the woods as our abilities allowed and watch nature unfold from our " secret spot " . This was a lovely, shady, woody glen next to a creek and beaver damn. What a 'school' that was! Or we would meet for a soda and burger in town to talk. In many ways, I grew to love Martha, I suppose she was like a big sister to me --one I didn't have and always wanted. Martha helped me prepare my college applications and calmed my fears about flunking the SAT tests. We stayed in touch all during my college years and met as often as possible. One day during my junior year she simply said " Now what? " There I was caught off guard, I hadn't thought much father ahead. " What are your goals, your dreams, what do you want to accomplish in life " , she questioned further. Goals. Dreams. Accomplishments. Life. It appeared CMT just had melted invisibly into the whole pot, thanks to Martha's " you can do anything, so long as you try and work hard " approach to my life! So I told her I would be majoring in Biology. She seemed pleased and the next thing I knew Graduate School catalogues started arriving in the mail. Can you believe it? All this from one tutor who cared enough to be interested in me getting along OK with CMT in all aspects of my life. I read and read and read. Zoology, Botany, hmmm, just WHERE WAS I going? And then, there it was larger than life " Veterinerary Medicine " ! It turned on like a 150 watt light bulb! I first shared this discovery of new direction with Dad, who seemed a tad worried it might be too demanding for me. Then I sprung the news on Martha. " OK, great, I knew this all along, but you had to find it yourself! " So, onward to filling out more applications (just 2 schools) and taking some extra elective work my senior year to 'prove' I was 'academically worthy'. I was accepted at both schools, and attending my first choice for what felt like the rest of my life. Demanding? Of Course! Was I tired? All the time! Did I ever think of giving up? Just about every other day! But I didn't! I graduated among the top 2% of my class after all and now, years later, have established my own small animal clinic with a colleague. Our patients are mostly cats and dogs, with a few ferrets, a raccoon, snakes, several birds, turtles, and rabbits. Not too long ago I arrived at work earlier - 5 am to catch up on paperwork in the morning's peace. Someone had left a skunk with a broken leg and five babies in a box on the clinic doorstep! Who needs Starbuck's at that hour with six scared skunks in your face?! After a rabies check and x-rays, I set the mother skunk's leg and we placed the babies in an incubator to nourish and keep them warm. Soon, they calmed down and fear left, then mother and babies were reunited in a special, secure area of my office. I didn't even think about getting sprayed. I just did my job and hoped for the best. Soon the skunk family had nicknames and the babies fattened up. The family was the hit of my clinic and received much attention, care, and yes, even special treats. We supplemented their diets with extra nutrients - in other words, we bottle fed them! I especially enjoyed watching their littermate antics and once Mrs. Skunk's leg healed, she was a doting mother. I crated them at night under a heat lamp, as skunks are nocturnal and I had a messy desk of papers needing to stay put! I hated to part with them, as I do all my 'patients', but I found the skunk family found a nice home at the local wildlife reserve, with plenty of habitat-specific plants, trees, flowers, ground cover, etc. and some new critter pals to boot! Meanwhile, Martha and I continue to write, call and visit often. She was witness to the Skunk Family recovery and just kept saying " I am so proud of you, what's next? " AH! THAT question! What's next for me now is to set new goals: included in this is a Part-time teaching position, (including mentoring!) along with time for research, and eventually putting my ½ of the clinic up for sale. Yes, goals spur me on to new adventures. I'd also like to do some wildlife rescue work. Maybe it is time to meet the grandkid-skunks? Who knows? And Martha continues to be a blessing to me, her wit, wisdom and grace over the years have sustained me like nothing else. She's older now so I make most of the trips to see her. When her dogs Buster and Phideaux bound down the drive to greet me, I feel I am coming home. She has taught me so much, about disability, about self-defeating limitations and about who I am. And she tells me how lucky she is to know me and reminds me, after all, how many people have ever had the opportunity of bottle feeding a skunk?! So you see, the kid who wanted to discover the planets as an astronaut,did in fact 'discover herself and her own 'animal planet' as a Veterinarian! 2) Stress Relief and This Old House - by Stuart H. Enjoyment of pastimes gives me great pleasure and releases stress. For this reason, and my passion to preserve history, I restore old homes in my spare time. Well, really, I do mostly minimal work, or shall I say the 'expensive' part! I buy, move, gut and start over with a beautiful empty shell. I contract out the major carpentry, electrical and other building work, as I am too busy with my real job, and everything must be brought up to code before further work can be done. Then comes the fun part; researching the history of the home and restoring staircases, window boxes, turrets, nooks and flooring. I like to let my mind wander through the house, savoring the life that once lived there. I imagine, the people, the families, the festivities of years gone by. Yes, this is a great stress-reliever for me! From wallpaper to antique doorknobs, I will try to restore a home as close as I can to its original state. Sometimes my children accompany me to antique stores and I have discovered this is a very interesting way of teaching them about history. Maybe I only spend one weekend a month on a project, but it is deeply satisfying. My current project is a turn-of-the (20th) century, n. My goal is to have it completed by Fall 2004! Yes! That's right - 2004! That's because primarily on this fun stressless endeavor, I don't set goals as I do in my 'real world' job nor am I accountable to partners. I work at my own speed on my own time. That's what makes it fun and almost easy! When a house is finished, I am thrilled! Some joy, some relief, but by then I am ready to sell, as the fun for me is in the 'process' After a good sale follows, I meet with the new owners to " let my baby go " and am off to look again for Another Old House! 3) The Pleasure of My Modified Driving Van - by Alice R. I purchased my modified van in May 2000. How and why is the subject of this article. My first symptoms of CMT showed at age 3 in 1941. I believe the diagnosis was made at age 11 after a muscle biopsy and EMG. Foot deformity was very rapid but was corrected by night splints designed and made by my father, a precision machinist and mechanical genius. Through a progression of braces, triple arthrodesis on both feet, a walking stick, AFOs, and crutches over the next 57 years came the time for an electric scooter any time I'm outside the house. For 37 years I drove my faithful VW bug. Obviously I could not transport my scooter so I depended on my husband to load the scooter into his VW camper, deliver us and return later for the trip home. Needless to say,we both wanted more independence for me, so the search for an appropriate vehicle began. I posted requests for personal experience on several web sites but got no useful replies. Edmonds.com, an automotive information site, started a forum for special drivers' needs but the only information I got there was from a mechanic who recommended the Dodge over the Ford Windstar as being easier to service. I could not have a Honda, my first choice, or a Toyota because no one was adapting them. Basically, I was left pretty much on my own to make this major decision. One of my first decisions was selecting the person who would be responsible for maintaining the adaptive equipment. As luck would have it the perfect couple live in my hometown with their business located 20 miles away. They recommended Vantage Mobility International for quality,reliability and customer service. In Santa Ana, CA at the Abilities Expo, I looked at vans in different configurations from many different companies. I chose a side ramp for safety reasons. Even a slight rear end accident can jam a rear latch and leave a person imprisoned. Not a pleasant thought. Next choice was a slide out ramp over the fold up so when a passenger opens the door nothing is in the way. With a toggle switch I can choose to have the right rear kneel to lessen the slope. If the ramp fails it can be manually extended or retracted by an able bodied person or by a ratchet tool that takes lots of time but almost no strength. A disadvantage is less ground clearance and the chance of scraping or mashing the exhaust pipe. So far, I have identified only two driveways that pose a problem. I test drove a Ford Windstar with a hand control to be sure I could manage it. I have no grip strength but my hands are pain free. The hand control was a revelation but I felt closed in by the design of the " cockpit " . After I got the Dodge it took about 10 minutes to know that I would be comfortable with the hand control and one-hand steering. My maintenance man added a parking brake operated by pressing a toggle switch. My husband designed a tie-down specifically for my scooter and worked with a machinist to build and install it. It's an aluminum bar that fits over the scooter floorboard onto two upright posts and is secured with two metal pins. It takes only seconds to secure with no fumbling with straps and clasps. Cost is a major factor. My choice was $16,450 plus the cost of the van. I consider it money well spent because independence is mine. I go where I want, when I want. Since I plan this van to last my lifetime I needed to be careful with my choices. My van is a pleasure to drive and I believe I made the correct decisions. 4) Windows On My World - by Mike M. Fun as a 'stamp collector'? Not! Stamps were for nerds, so I thought.But, as my life 'grew up', two types of stamps have become a great source of fun for me and given me unique " windows on my world " . As a child of the Consular Corp, often my sister and I were given various postage stamps from countries of visiting dignitaries. This was seen as a gesture of friendship from children of one country to another.Now, my sister could care less, and being older, was more interested in boys, so, you guessed it! I became the sole owner of some incredibly designed and handsome foreign stamps. I spent hours and hours at a huge table sorting, cataloguing, and guarding my prized cache! How I loved this time alone to consider these mysterious lands I had not traveled yet, or people I had not yet met. Considering this all started when I was about nine, I now have walls and special frames for my stamps, and I am still collecting! I loved the people, buildings, commemorations and designs on these stamps. As I grew up and we continued moving and traveling the globe, my stamp collection grew! And now, I was also collecting passport stamps! Ah! What fun! Both types of stamp fun connected me with our world and her people in a very unique way. I have a special office where I keep all my stamps, some in frames, some in special acid-free wraps and boxes, and some just on my desk to marvel at. My stamps from Egypt of the pyramids and my stamps from the World's rain forests countries are among my favorites. In addition, I have recently purchased two of the first edition CMT stamps that I found out about through our group. Certainly an eclectic collection! While in Egypt on a dig for school, my host family, having saved many old letters, simply sat around the family area evenings and started cutting. I was early getting home one night, and came upon this weird scene - I couldn't figure out what they were doing!!! Once I entered the room, they stopped, and quickly put everything away! On my last evening with them, after our meal and party, my hosts and friends presented me with a big box! What could this be? After all I had already bought every T - shirt in the country! Slowly, carefully, I opened the elaborately dressed box! Peering inside, I saw literally thousands of postage stamps, from all year and dates, from Egypt, Africa and parts of the Middle East! I was simply astounded! They had cut the stamps off all old letters AND asked their friends to do the same - all of this was a surprise to me - nobody let me in on this! I estimate this took a few months' time, since I was there for most of the summer. My gratefulness knows no end to such kindness and generosity. Many of the stamps date far back into the reaches of postal history, and gave me much to learn and study. My gratefulness for this gesture knows no end. My host family and I are still in touch, even though my recent studies and digs are taking me in opposite directions. I have not been much into trading or exchanging, but now with the new U.S. issue of attractive 'states' stamps, I just might - after all, since my many world friends have asked ME for a 'window' on MY world! Now, for the passport stamps - over the years I managed to fill up many pages; even some countries would not stamp the Consulate Corps, I would beg. And those stamps serve as another type of 'record' of my life. My old passports are worn and torn and I have protected them in special pouches. But not before I made bright copies of each stamp - to frame and make notes upon. I also found the coloring is more intense this way and many details not previously noticed, emerge. So, within my home office, along with my graduate work, piles of books and papers, tests to correct, hung elegantly on the walls, surrounded by a world map, are my special 'fun' insights into a world of greatness I have come to know. I have seen some magical lands and met some of her people. What is important to me is to keep going - despite any CMT 'challenges' because I am not done yet! I know there are more " windows " to open! 5). Disability, Procreation and Hope - by Paolo Vinci, M.D. I have been asked to write about procreation in case of CMT, both as a physician who visited and spoke with hundreds of CMTers and as a patient affected with quite a severe form of CMT since the age of six. Since I live in Italy and almost the totality of my patients are Italian, what I'll say is the result of an experience made in Italy and that may be not valid in other countries. For example, in Italy it is not easy to find or change a job, even if you do not have CMT. So in case you have CMT, unless you have a recommendation to get a public employment, you risk to remain unemployed all the life (especially in case you are severely affected or you could not get a master's degree) or to be fired in case your boss realizes you are not normal. In addition, the Italians are very worried about aesthetics: girls must wear miniskirts and heeled shoes, men must be full of muscles and wear shorts while playing soccer. If you are different, you risk to be isolated, which is frustrating especially in adolescence. One of the most important problems for a CMTer is related to the acceptance by a healthy partner of the risk of giving birth to a sick child. A healthy partner may love and accept a CMTer with walking problems, but not to have a not-normal child. The only idea of this may upset him/her. Speaking with my CMT patients, I realized that they all worry a lot whether to procreate or not. Most of them, especially the women, are really scared about transmitting the disease to their children. Almost all the parents who have children affected with CMT were not aware of having a hereditary disease before procreating them. Especially in case of onset in infancy and a severely form, they generally say: " If I had known before, I would have avoided making a child. " This is probably the result of their sensation of failure in giving their child the same chances as other children. These parents are also worried about the problems their sick child will face in their future in the society, as described before. In addition they are stressed by the management of their child's disability, obliging them to take him/her to physicians, physiotherapists, orthotists, instead of enjoying childhood. In no case a decision not to have children was made because of worries not to be able to grow children up, because of a parent's CMT. These same considerations made me decide not to have children. Of course it was a personal decision, a suffered decision. It was based on my personal experience in a society where the handicap is still seen as " a mark of shame " and the disabled person is not respected (e.g. even the policemen park in the reserved places for the disabled!). Perhaps if I had lived in another place, my decision might have been different, I don't know. Perhaps if I had not started with those ugly AFOs at the age of 11, my decision might have been different, I don't know. When I decided, I thought that there are millions of healthy children who die of hunger and that in case in the future I felt the need to feel myself as father, I might adopt one of them. However, I think that any decision about procreation is up to the parents'. As a physician I inform them about the percentage of risk of transmitting the disease and about the possibility (in most CMT1 cases) to know if the fetus inherited the pathological gene, in order to decide whether continuing pregnancy or not. I also inform them about the gravity of the specific genetic defect, if known: for example, CMT1A due to duplication is never very severe, whereas there are some point mutations that cause severe muscle wasting of the distal and proximal muscles and there are some CMT2 forms where the disease is more severe and starts earlier in the second generation. I hope that scientific studies comparing the disease gravity in each genetic form are made soon, in order to allow couples to decide with better awareness. ********************************************************************************\ ****** Quote Link to comment Share on other sites More sharing options...
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