Wednesday, June 27, 2007
Last June (the 26th to be exact) is the first time I stepped into the ocean waters since boogie boarding after my first brain radiosurgery treatment in July 2004. Prior, my last dive (scuba) was at Titlow Beach in Puget Sound (Washington) in March of 2004 just days before it was discovered that one of my tumors grew substantially and was in immediate need of treatment.
From the treatment I developed a vertigo in the water which prevented me from the water activities I used to love. Fortunately, I was able to overcome these challenges and enjoy my love of the sea snorkeling on a vacation last year.
It was absolutely MARVELOUS! I had so longed to back in the sea with the fish and marine life (in my element). The clear water, colorful fish, coves, and reef life were stunning. We had fun poking our heads into little nooks and crannies to see what surprise awaited us.
When we rounded a rock outcropping we came upon an interesting site which I have known about for a long time but have never witnessed. Sitting peacefully in the water were two large round cement structures with portholes covering the body of the spheres.
I became extremely excited of my find and swam around to inspect the new life growing on the structures which had probably not been laid there long (maybe only a year or two or even months old). It was interesting to see how a faint light blue and yellow fish with black stripes took on the duty of guardian of these great spheres. It was protector of all within the sphere and the new life growing on it. The sphere had become its "artifical reef" and home now.
I was so pleasantly pleased to witness this spectacular site and the new life emergining. It made me giddy and happy inside but also curious of how the spheres came to be and what was the story behind them.
You may also be wondering what these spheres were. They are actually part of an eternal reef memorial. I have know about them since I was in college (shortly after I became a certified scuba diver at age 19). In leu of a plot burial, a jar of ashes, or ashes scattered in the wind, one can decide to continue on with life and become part of a "reef". Hence "old life" gives birth to "new life" and the cycle continues on.
In fascination and awe, my mind weaved tales of their being. There were only two spheres. Were the spheres of an older couple who had once honeymooned there together? How romantic. It is unsual for eternal reefs to be placed alone in international waters. This particular part of Haiti is owned by an American Cruise Line which is private and only for cruise guests. Thus I wondered if this was a magical and memorable place for these two people where they wanted to be laid to rest and become something bigger (part of the whole).
Eternal Reefs: http://eternalreefs.com/
Atlantis Memorial Reef Project: http://www.atlantismemorialreef.com/project.htm
Well I have not experienced that physically draining of a bad dream since then that I can recall. However, the dream last night did not necessarily pull me into the reality I was expecting and upon waking I had a scary experience.
Here is the dream: I don't know much about it but I recall other people were living in our house or we were living in a house with other people. It was weird. We were living there because we were alike and had some kind of connection. Were we all brain tumor patients? I honestly don't know.
Somehow, somewhere I met someone who wanted to be a part of our group but the person had to escape from the people who were holding him. I cannot give you details because I can't remember. It was a strange situation. I agreed to allow this person into our group (to live at our house/compound/whatever it was). The person was to arrive that evening when it was safe to escape.
The evening came and I had told the others that this person was going to join us. I think they were leary and unsure about my decision. To my dismay, the person betrayed us. When time came for him to arrive, our house was under attack by a militia with guns!
I knew everyone would be upset with me. Harley was with me but sleeping through everything. Although I am deaf I could hear in the dream and know what was going on. I became very stressed and felt the pressure I experienced when having a nightmare when I was young. In my dream I pulled the covers over my head to hide and did not want to come out. It became so overwhelming to me I could not stand it and could not hide from my fear!
Then somehow with the desire to want to escape, I hoped it was a bad dream during an unconscious state and if I came out from the covers it would be over. Therefore, I mustered the courage to open my eyes and realized I was home in my own bed and room.
But it was not over. The pressure in my head did not stop. I was utterly terrified!
Did one of the tumors grow pinching my brain stem? Oh God the horror! I sat up hoping it would go away. I felt no pain but just this intense pressure that I am unsure how to describe at this moment. I rocked back and forth to comfort myself hoping that it would disipate. No do! Therefore, I decided I would take something to reduce swelling which may have been the cause of my current problem. The diamox was sitting on my dresser (medication I take daily) but I did not want to put my dosage out of wack on a prescribed medicine. The next best thing would be IB Profen.
I made my way downstairs with the pressure still knawing at my brain. Ok this is a good sign I thought as I was able to make my way out of bed without stumbling or falling. I continued down the stairs with no falls and no pain which provided me some sense of ease. I made my way to the kitchen and took 2 IB Profen and then headed to the couch to lie down and relax.
For a moment I wanted to get upset and cry internally but I reconsidered realizing that any further stress would increase the pressure or not help the situation. I focused on relaxed breathing and pictured my friend Laura in my mind of how she calmed me 2 years ago when I got upset at the beach. (Incidentally, from the moment on, I often picture her showing me to breath deeply whenever I get upset.)
Above the TV is a framed poster of the coast of Italy. It is very serene and peaceful. I focused on being in the beautiful and peacefull setting and my friend guiding me through relaxed and deep breathing. Within a few minutes it ended and I was able to go back to sleep. Phew!
Tuesday, June 26, 2007
Age – 12; Hometown – Middleton, Mass.; Condition – neurofibromatosis, type 2
Wish: To meet David Ortiz
Stephan, who had his own locker in the Red Sox clubhouse, met Ortiz for a personal tour of Fenway’s ‘Green Monster’
One of our young NF2 patients Stephan Zepeda LeColst (age 11), was recently a Make a Wish child. His wish was to visit with David Ortiz who has been his hero since he was 3 years old because David is big and strong.
They met last week and ESPN will air a program about their visit on Tuesday 6/26. ESPN Sportscenter airs from 6-7pm ET each night, and then again from 11pm-12am and 1am-2am. It then reruns again six times the next morning. ESPN has also written an article about them which I have attached. (sorry, I could not get the attachment and include it here)
A humorous story about Stephan - the day before they were scheduled to meet, David Ortiz called him at his home in Middleton to introduce himself. Stephan (who has hearing loss) thought it was his neighbor playing a joke on him and hung up the phone. Big Papi thought it was very funny, and called back! As you will read in the article, they had a great day.
Karen Peluso, Executive DirectorNeurofibromatosis, Inc., Northeast*9 Bedford StreetBurlington, MA 01803781-272-9936
fax 781-272-9937cell 617-529-9562http://www.nfincne.org/* A Member of the National NF Coalition
Saturday, June 23, 2007
(Busy busy here so not much time to write.)
I love any outdoor body of water: pond, lake, ocean, quary, creek, stream, river, waterfall. I am fascinated by the movement of water.
When in Belize on our honeymoon (2000), we met another diver who was actually a hypnotist. He would use nature videography to calm and hypnotize people (for theraputic medical purposes). At the time I was dabbling in some very amateur underwater videography and Harley was starting his underwater photography career. We thought it would be a great idea to use underwater videography for relaxation! Even the surface above water has always had a calming hypnotic effect on me.
I remember the days when I could avidly water ski. Salom skiing was my favorite. I was entranced by leaning over and gleaning at the water. The fast pace of movement and percision made me imagine of being a powerful shark cutting through the liquid glass at high speed. I was also drawn by the foaming and bubbling of the water behind the boat's motor. It was glorious and dazzling in the sun!
I have not water skiied or dove (scuba) since before the radiosurgery. The treatment left me without the incredible sense of balance I once had. In fact, without my eyes open or a mask while in the water I get very disoriented and cannot tell which way is the surface (vertigo). However, I am still hynotically drawn to the water. It calls to me. Whenever I see it I long to jump in or at least touch it.
Last night when walking the dogs at Marymoor dog park, I decided to walk them to Lake Sammamish after one lap around the park. When we arove a sense of nostalgia and peace overtook my being. It completed the day by providing a satisfying reward by just seeing it. A herring flew above in the pink and lavendar lined clouds of the setting sun while the lake water gently weaved underneath the beautiful lilypads and white blossoms. In the distance we could see the reflection of the setting sun shedding a pinkish hue on Sauk mountain and a lone outboard boat with two fisherman lazily relaxing in hopes of an evening catch. It was so incredible that I did not want to leave but time had to pull us away as I had to get to get in some weight lifting at the gym before it closed.
Today I felt a little panicky thinking about the approaching date of my medical consultation and the thought entered my mind about maybe needing to cut off my hair for a surgery. Thank God I have a nice series of underwater videos that I can retreat to. I popped in the Blue Planet DVD "Seasonal Seas and Coral Seas" and immediately the microscopic Copepod environment enthralled me in interest and the gracefully swimming jellyfish put my mind at rest.
Now I can get on with the day.
Monday, June 11, 2007
Well this is rather interesting. The actual cancer they are conducting clinical trials on using curcumin is Myeloma which my grandfather had as his second cancer.
So anyone out there with Myeloma (or Pancreatic) cancer, if you have run out of treatment options, there is currently a clinical trial being conducted at MD Anderson in Texas.
Here is the clinical trial study on the usage of curcumin for Myeloma. I will also include the link which you can access by clicking the lighthouse icon in my post title.
P.S. - clicking on the link above provides an easier to
read format of the study I pasted below. It will also bring you to the MD Anderson website for which you can view other clinical trials and treatment programs.
Study SummaryNo. 2003-0436:.......Myeloma......Saroj Vadhan-Raj......Palliative Care & Rehabilitation Medicine.
Study Summary Title
Pilot Study of Curcumin (Diferuloylmethane Derivative) With or Without Bioperine in Patients with Multiple Myeloma.
New Patient Referral
800-392-1611 (in U.S.A.) 713-792-6161 (outside U.S.A.)
Palliative Care & Rehabilitation Medicine
800-392-1611 (in U.S.A.) 713-792-6161 (outside U.S.A.)
713-792-7966Contact us about clinical trials
Phase of Study:
Every 4 weeks.
Curcumin and Bioperine are both in pill form, therefore, could be taken orally at home.
Only at MDACC
EstimatedLength of Stayin Houston:
None for the treatment
The goal of this clinical research study is to compare curcumin alone to curcumin given in combination with Bioperine in the treatment of multiple myeloma. The safety of these two treatments and how the disease responds will also be compared..
Study Objectives / Outcomes
(1) To evaluate clinical tolerance and response to curcumin alone and in combination with Bioperine in patients with multiple myeloma.(2) To compare the pharmacokinetics and pharmacodynamics of curcumin and curcumin + Bioperine and evaluate the effect of Bioperine on the bioavailability of curcumin.(3) To evaluate the biologic effects of curcumin alone and in combination with Bioperine on the expression of NF-B and related genes in the MM cells..
Study Status Information
Study Activation / Registration Date:
IRB Review and Approval Date:
If you do not meet the enrollment eligibility, there may be other treatment options for you. Please Contact the Referral Office for more information.
1) Multiple myeloma patients who have been previously untreated, are asymptomatic and without serious or imminent complications, have relapsed or failed treatment with conventional treatment or progressed on no or limited maintenance, or are in stable partial remission.2) Bone marrow plasma cells >/= 10% and serum M-protein level >/= 0.5 g/dL and/or urinary Bence Jones protein >/= 100 mg/24 hr. When the bone marrow (BM) plasma cell differential is <10%> 1000/mm^3, platelet count > 100,000/mm^3, Hgb > 10 gms/dL), renal (serum creatinene <>/= 6 months.7) Effective means of contraception for women of child bearing potential.8) Women of child-bearing potential must have a negative pregnancy test.9) Ability to comply with study visit schedule and protocol requirements.
1) Pregnant or lactating women.2) Previously untreated patients with high tumor mass, symptomatic or impending fractures, hypercalcemia or plasma cell leukemia.3) Patients with benign monoclonal gammopathy (MGUS) or non-secretory multiple myeloma.4) Significant cardiac disease, dysarrhythmia, or recent H/O MI or ischemia.5) Comorbid condition which renders patients at high risk of treatment complications.6) History of significant neurological or psychiatric disorders including dementia or seizures that would impede consent, treatment or follow-up.7) H/O curcumin or Bioperine supplement in prior 4 weeks.8) Patients on anti-convulsants, anti-coagulant treatment, or anti-arrhythmic medications for cardiac arrhythmia other than atrial fibrillation.
Yesterday we decided to go out and enjoy the taste of tumeric and curry. Recently researchers at MD. Anderson in Texas have found the ingredient "curcumin" in many curries of Indian and Thai dishes to be effective in shrinking tumor in mice. Currently they are conducting clinical trials on cancer patients and are hopeful that it will be useful in shrinking NF2 tumors as an alternative form of medicine.
Tasty curry might have a fringe benefit
Updated 1/8/2007 8:13 AM ET
By Dibyangshu Sarkar, AFP/Getty Images
Former Indian model Divya Chauhan cooks a curry inside her kitchen in Bangalore, India. Studies have suggested that the spice could protect against heart disease, cancer and Alzheimer's.
IT'S THE SPICES THAT HELP YOU
Indian food offers many benefits, especially if dishes are prepared with a healthy oil such as canola instead of butter or ghee, says Alamelu Vairavan, co-author of the book Healthy South Indian Cooking. She recommends preparing dishes loaded with brightly colored vegetables, which contain natural disease-fighting substances called anti-oxidants.
Indian food typically contains curry powder or turmeric, which scientists believe contains a compound that protects against arthritis, Alzheimer's and other diseases, she says. Curry powder is a blend of spices that includes turmeric, a mild-tasting spice made by grinding up the root of the curcuma plant, she says.
• Appetizer Tuna masala served with sliced French bread
• First course Cauliflower soup
• Side dish Bell pepper and tomato rice with cashews
• Entree Chettinad chicken kulambu
• Side dish Cucumber and tomato yogurt salad
• Dessert Carrot halva
Source: Healthy South Indian Cooking by Alamelu Vairavan and Patricia Marquardt ($24.95 Hippocrene Books)
By Kathleen Fackelmann, USA TODAY
Five years ago Darci Jayne hardly ever touched a vegetable and pretty much lived on pizza, pasta and fast food.
That diet led to weight gain and health problems, including severe joint pain. "I was close to 200 pounds and getting scared," she says.
By cutting portion sizes she lost 50 pounds but always felt as if she were on a diet. Then Jayne took an Indian cooking class that emphasized fresh vegetables and curry spices.
She began to whip up an Indian dinner once or twice a week — and soon she noticed she wasn't always looking for a late-night snack. And the curry in the food offered her a bonus: It seemed to ease the pain and swelling in her joints.
"I have arthritis," says Jayne, 55. "But I'm moving better now."
Preliminary research suggests Jayne may be right. A study in the November issue of Arthritis & Rheumatism suggests turmeric, one component of curry spice, almost completely prevented joint swelling in rats with arthritis. Other studies have suggested that the spice could protect against diseases such as heart disease, cancer and Alzheimer's, a degenerative brain disease that afflicts nearly 5 million people in the USA.
Rates of Alzheimer's in India are about four times lower than in the USA, says Gregory Cole, a researcher at the University of California-Los Angeles. His studies suggest that curry contains a powerful substance that might protect the brain from damage that leads to Alzheimer's.
Surprising findings in mice
Can scientists prove curry wards off such diseases as Alzheimer's or cancer? Not yet, says Bharat Aggarwal at the University of Texas-Houston. But he says the growing file on curry includes compelling evidence gleaned from animal and human studies.
The findings from Western science fit with what traditional Indian healers have long said about turmeric. "They call it the spice of life," says P. Murali Doraiswamy, an Alzheimer's expert at Duke University in Durham, N.C.
For centuries, doctors trained in Ayurvedic medicine, a traditional medical system in India, have turned to turmeric to treat inflammatory diseases such as arthritis, says Janet Funk, a researcher at the University of Kansas. In the USA, many people with arthritis take over-the-counter supplements that contain curcumin, the active ingredient in turmeric.
In the November study, Funk and her colleagues gave rats that were bred to develop rheumatoid arthritis injections of turmeric. "The turmeric almost completely prevented the onset of arthritis," Funk says. The spice also seemed to help stop joint destruction in rats that had already started to develop the disease, she says.
Curry also may offer some protection against cancer. "Indians eat from 100 to 200 milligrams of curry every day, and that might be enough to prevent cancer," says Aggarwal of the M.D. Anderson Cancer Center at the University of Texas.
The curcumin in curry seems to shut down genes that trigger the development and the spread of breast cancer, animal studies in Aggarwal's lab suggest. And a preliminary human study suggests curcumin supplements might — in a handful of cases — be able to stabilize pancreatic cancer, he says.
Epidemiology studies in humans also have linked frequent use of turmeric spice to lower rates of breast, prostate and colon cancer, he says.
Large clinical studies still needed
Other research suggests curry might shield the brain from Alzheimer's, Cole says.
The studies on curry and Alzheimer's include:
•A test-tube study by researchers at UCLA in October showed that curcumin could help clear the human brain of toxic protein deposits thought to cause the memory loss and confusion of Alzheimer's.
•A study of more than 1,000 older men in Singapore last year found that those who ate lots of curry-spiced food did better on memory tests than those who rarely ate the spice.
The findings from Singapore suggest curry may help keep the aging brain in top shape. But to get the proof that curcumin fights cancer or Alzheimer's or arthritis, researchers will have to conduct large clinical trials, Cole says, and those studies will be expensive and take years to complete.
Americans don't need to wait for the proof on curry to enjoy a diet that includes more of this spice, says Alamelu Vairavan, co-author of the book Healthy South Indian Cooking. "You don't need to gulp supplements," she says, adding that cooks can find turmeric in Indian specialty shops and in most grocery stores.
Americans should give Indian food a try, Vairavan says. "This kind of food is very tasty and satisfying."
Eating more Indian food has worked for Jayne, who lives with her family in a small town outside Milwaukee. A family physician who recently retired because of disabling arthritis pain, Jayne says she knows there's no hard evidence of curry's health benefits. But that won't stop her from enjoying a lunch of tuna masala or an Indian stir-fry for dinner. She says the food seems to warm her joints and helps keep her in a size 8 dress.
"You can't argue with success," she says.
Thursday, June 07, 2007
Good moments today and the past few days:
When I was struggling with dispair and hope while fear began sinking in, I read that Sean Swarner is back on the mountain (Denali) and will "Keep Climbing" to achieve his goals and be an inspiration for the cancer community.
To read his journal and follow his journey go here: http://www.cancerclimber.org/climb.html
I discovered that my long time friend has found someone truly special and is engaged! Congratulations Joanne and Travis!
To see photos of their spectacular sailing journey and where Travis proposed, go here:
I am blessed with a wonderful and supportive husband who is always there for me. We have had many good times together and our life is always full and an interesting journey.
My dogs (even though almost 6 years old) are still as cute as puppies and bring a smile and much joy to my life everyday.
Last night I was able to stand on the BOSU ball trainier for over 5 minutes setting a new personal record!!!!!
The other day on a walk with the dogs, we saw a fantastic site! We witnessed a large bird which I assume was a majestic Great Herring at the pond for the first time this year. On the same walk there was a fresh rain that cleared with the sun breaking through the clouds. The aroma of the fresh earth and grass reawakened my spirit as I inhaled the breath of living.
A few days prior when we were out for our walk on the same trail, a lovely couple bird watching and taking pictures stopped me to show their wonderful discovery. Even though I am deaf, they were still interested in communicating (the man knew how to fingerspell) and pointed out the very RARE site of an American Bittern which I have never seen in the wild before. If they had not been so kind and eager to share their discovery, I would have missed the opportunity.
Saturday was nice and I had the chance to visit one of my places of refuge here at the Bellevue Botanical Gardens. The blooms and perfection of landscape are just lovely! It is an art I truly appreciate mostly especially because I do not have a green thumb! It is nice to have such peaceful places nearby to visit. As an added bonus, Harley surprised me and showed up. We had text messaged each other as we had different agendas that day and I thought he was in a complete different location. LOL While taking a photo of some gorgeous rhododendron trees, he came up to me from behind! hehe ;o)
Here is a quote that has instilled inspiration and hope for me today. I have read it before but it left my mind and today was a perfect time to revisit it!
You gain strength, courage and confidence by every experience in which you really stop to look fear in the face…You must do the thing you think you cannot do.
- Eleanor Roosevelt
Tuesday, June 05, 2007
LOL I must look like a dang fool compared to what they are doing in the short video on this site! I am quite literally blown away!
Check out the link I have included by clicking on the lighthouse in the post title. OR if that does not work for you, past the following into your browser to view the website for TWIST CONDITIONING INC. - the sport conditioning specialists:
The small video automatically appears when you open the page and is not at all boring. It is very fast paced and almost makes my head spin.
Here is another site I found with the BOSU balance trainer
(WTNH, July 20, 2003) _ It's hard to believe that bouncing on a squishy half moon shaped ball can actually get you in shape. But, it can! The new form of exercise is called BOSU. From rehabbing a reconstructed knee to setting world records, BOSU allows you to find your "point of challenge" and develop beyond that point.
A local aerobics instructor will be here to show us how to do it.
Watch the interview
For more information on BOSU Balance Training: http://www.bothsidesup.com/.For more information on Club Fitness: www.guilfordfitness.com/index.cfm
Well this morning I feel like I have a searing red hot poker in my good eye!
Here is how it goes: with NF2 I cannot produce tears or enough to actually cry. In addition, the eye lid of my right eye (the side which I have experienced facial paralysis on) does not actually close fully when unconscious (sleeping). Therefore at night I have to use Refresh Gel Drops in my eyes and wear an eye mask (obtained from an airplane trip in 2004) to keep my eye closed. Most people with NF2 tape their eye shut but I have not resorted to that as I get up many times a night to use the restroom. If my eye was taped shut I would have to remove it and reapply it each time while not fully awake.
The result is that I wake up in the morning with irritated eyes most often one of which is completely pasted shut (the left good eye) and the other not fully pasted shut but crusty. I need to use the restroom immediately upon waking. Hence my eye mask sits on my head and I use the one eye (the poor one) to stumble my way to the bathroom.
Normally I could take time to readjust by putting Refresh Tears on my eyes (which are thinner to loosen the dried gel). This would take a transition period though and I don't have that kind of time when I wake. My urge is immediate. If I can consciously become aware fast enough, I splash some tears on my eyes and hurriedly make my way to the restroom trying not to take off a shoulder, trip, or break my arm when I sit on the toilet seat (I often have to reach out and grab the floor to keep from falling).
After my relief is the time when I make the routine of splashing warm water (or using cold while waiting for the water to heat up) on my eyes to unpaste them. Sometimes when the water warms I use a hot washcloth compress on my eyes and lie back down to let the warm dampness unglue them. However, I have been known to fall back asleep when I do this.
In all it probably takes me a half hour to an hour to adjust to the vertical world from hours in the horizontal. Yes this is a rather significant transition and important daily ritual for many people with NF2 before they can function for the day.
Back to the searing hot poker.........Somehow something went wrong and happened to my good eye that gets pasted shut. I awoke with burning pain in that eye. I recall getting up during the course of my sleep to use the restroom. When I awoke very early this morning I noticed that my lower lid was dried hanging open a little (kind of if you slightly pulled your eye lid down to look for a hair in your eye). At that time I noticed I was half awake and disoriented. I think I splashed water on my eyes to get the gel off. Then I returned to bed and I THINK I reapplied the gel drops to both eyes and put on my eye mask. I really can't remember nor can I remember from when I woke up as the pain distracted me.
My right eye seems fine. Yet my left eye burns really bad and I have applied water rinses and several tear drops to try to wash it out. I thought maybe a hair got stuck under my eye lid.
Upon inspecting my eye with a flashlight (I cannot do this with the right eye), I noticed that it was all blood shot. The little red aggravated capillaries covered the white space of my eye ball. I could find no hair or debris. The only thing I can figure is that maybe one of the hard crusties fell it my eye and scratched it! I have scratched the cornea of my other eye before and the pain does feel similar.
WONDERFUL! THESE ANNOYANCES OF NF2 DO NOT MAKE FOR A PLEASANT START TO THE DAY!
I have gained minor relief by reapplying gel drops to that eye and lying down for a few minutes. It has improved and I can see out of it but it is sore and giving me dull head pain on that side of my head.
If I use the ointment not only will it blur my vision, but the ointment has caused a slight burning irritation in my eye in the past.
So for now and for this morning or maybe even today, I guess I will have to contend with a "red hot poker".
It's a flying saucer! Look out! LOL No the above photo is actually my latest toy device at Gold's gym. It is called a BOSU (both sides up) balance trainer. It is like a swiss balance ball cut in half and mounted on a hard plastic base.
Apparently there are several exercises you can do with it (what I would consider extremely difficult and advanced....not sure if I could ever attain some and others I know I cannot). However I just try to simply stand on the thing.
I remember the first time Harley was showing off and jumping up and down on it while I had extreme difficulty just maintaining 5 seconds of stationary standing without falling off. Yeah I have walked a marathon and climbed the tallest tower on the west coast but I just make you think things are easy when actually they are not. My legs are continually bruised from falls in just normal daily life and I have fallen down the stairs bruising my tailbone and most recently spraining my other ankle (I sprained the opposite one when I came home from treatment in summer 2004).
Anyhow, I am really proud to say I have gone from finding it extremely challenging to stay on the device for 10 seconds to my recent accomplishment a couple days ago of staying on for over 5 minutes.
I had a major breakthrough the day I climbed the Columbia Tower and met the Ershlers. After the climb I decided to stop off at the gym and workout seeing as it only took me 15-16 minutes to climb the tower. I had no idea really how long it would take to climb the tower as the Seattle marathon lasted hours to complete.
For a few weeks of practicing over and over again, I just could not seem to exceed 10 seconds and actually averaged 5 seconds as many tries resulted in 3 seconds before falling off. I was so elated after the tower climb that I was in a very determined mood. I am not even sure how many practice attempts it took me. I figured out that focusing on the striped colored wall in front of me helped immensly compared to a plain white wall with people walking past in my side view.
The stripes were large so I focused on the border between them that was near eye level. Then I noticed a few light scuffs on the wall in front of me and focused really hard on them until my eyes were not bouncing so much. My legs shaked as if they were about to crumble. I pictured the image of Susan Ershler's face and envisioned her telling me I could accomplish this feat. Finally after 150 seconds (yes that zero really is meant to be there) I released from the device happy and feeling "On Top of the World". What a great day! Not only did I climb the tower but I also drastically broke my measily 10 second record with an astonishing 150 seconds!!!!!
Now some people may observe me with strange curiousity or you yourself may wonder what the fuss is all about. For some, they would question why I was having such a struggle. I have to admit that I would have been one of them before losing my balance. Now I understand.
Often when I go to the gym, this is one of the balance activities I have been working on improving. About 6 weeks ago I broke my record again and almost made it to 5 minutes (I think it was 4 and a half). Yet when I came home it after dark, I got disoriented in the driveway and fell twisting my ankle badly and landing on it. Frustrated that my foolish foible would interupt the strides I made and hard work I had accomplished, I knew I would have to start again.
Fortunately I did not have to go back to the drawing board. I abstained from practicing on the BOSU trainer until my ankle felt a little stronger. After two or three weeks I could not contain myself any longer, jumped on one day and accomplished 2 minutes after some practice. Sunday night I accomplished over 5 minutes but I noticed the device I was standing on was re-inflated to its maximum capacity. I am not sure if this makes it easier or if my balance is actually improving. I will have to test out the difference tomorrow night.
About the ankle......Here is how it happened and something those of us with NF2 or balance challenges deal with DAILY!!! I should have known better really. As I said, I came home at night (dark out) when it is important to be more cautious as those of us balance challenged have a hard time with less light. (The best I can describe this is the difference between day driving and night driving...your perception and reflexes to situations drastically change. Now imagine having night blindness on top of that.)
I got out of my car at home not thinking in the right frame of mind about needing to be more cautious. My hair should have been tied back and it was not. I leaned down to pet the dogs and my hair fell in my face resulting in wild disorientation. I had no sense of direction (succumbing to a sort of land type vertigo). As I began dancing around to avoid falling and to get my bearings I twisted my ankle. Then the final icing on the cake was my heavy gym bag sliding off my right shoulder and causing me to come crashing directly on top of the twisted ankle.
It was excrutiating pain! The dogs were dumping on me and licking me all over my face as they worried about me hurting myself (they tend to do this when I hurt myself or I happen to be sad). LOL I am just editing this now and realized what I wrote here!!!!! ROFL I meant to say that my dogs were "JUMPING" on me and not "DUMPING" on me! Eeww! Gross! I am sure glad I have to ability to laugh at my foibles! ;+)
For the first few days I did not go anywhere as I had injured my right ankle. It hurt too much to drive and was painful going down the stairs. Five or six weeks have passed but it is still swollen (larger than the other one) and hurts in certain positions or just plain bothers me to the point where I feel like pulling it off my leg.
Yes I had it looked at 3 weeks afterward, but the doctor did not want to do xrays and said this was typical for a sprain. As a result, I have had to cease my running that I was making improvements in (was hoping to run some 5 Ks this summer and work up to a 10K). I also stopped going to the water aerobics which I have really enjoyed and is good for my balance as there are certain moves or running in the pool which would cause the wrong kind of strain on the ankle. If it is doing better I can commence running in July. Perhaps I will try returning to water aerobics next week.
What else have I been doing to keep active and work on balance? Well fortunately I can still walk without my ankle bothering me. Last week I tried running for short spurts and took the next day off completely. I have also been back to lifting weights this year as I am trying to gain back muscle strength that will help me improve my balance. In addition, there is this machine I really like developed by Cybex which takes impact and jarring off the ankles. It is like a combination of running, cross country skiing, and stair climbing. It is great!!!!
By the way, check out the link to find out more about what a BOSU is by clicking the lighthouse link in the post title. It is cool!