Wednesday, May 31, 2006

(UPDATED AND NEW) Quiet Relay Reflection

This is the draft post I wrote on May 31st and forgot to publish until today. (The information is from May but my reflection has become even more enhanced now that I am part of the Team In Training program to prepare for the Seattle Marathon in November. Friday I met two women in Team Survivor NW - one who had breast cancer and the other who had uterine cancer. They are both training for the Danskin Triathalon in August. Yesterday at team in training I met a man with hearing loss doing who has just been diagnosed with acute lymphocytic leukemia. He will be starting chemotherapy next month. He was a very fast walker and I told him to keep up the good work because it will be even more important when he goes through treatment.)

Yesterday I went to the Seattle Breast Center for a bone density scan.

NF2 Note: The reason we were assessing my bone density is because there have been cases of NF2 patients having premature osteoporosis (age 20s and 30s) due to long term use of steroids. Steroid therapy is commonly used to reduce tumor and/or brain swelling. Often steroids are prescribed following brain radiosugery or traditional surgery. Due to tumor swelling which caused problems and made me sick, I was put on steroid therapy several times (10-11) over the course of a year. I took mostly the steroid Decadron but was also given Predisone for a month or more.

The location of where I had the scan is the same building where the radiology and oncology unit is housed and the NW Tumor Institute. I regularily go there to see my radiologist for followup visits after each MRI. At the same place also where they administer chemotherapy and radiation treatments to cancer patients.

While leaving the building a woman who had or is obviously going through cancer treatment was walking in front of me. She was easily recognized by her lack of hair. Even though I never lost my hair completely (due to an ice cap I wore to freeze the hair follicles), I was taken back to what it was like to go through the horor of cancer. I remember crying over the thought of losing my hair but fortunately for me I had an option. Not everyone does and for a woman you can only begin to fathom what the loss of hair does to one's self esteem and identity.

In any case, this is not about hair. Seeing her reminded me of what I went through and what many with cancer go through. I felt for her, not pity but empathy.

As we reached the sunlight at the door pouring in from outside I noticed more detail about her. She must have been a mother as it seemed she had a young daughter with her and a husband or friend. She was wearing a nice ensemble of capri pants with a floral border at the bottom. As the sun glistened upon her I saw the beauty of life within her. She turned and gave me an angelic smile as we opened the door.

At that moment I felt proud and a warm satisfaction inside. Seeing her was like the difference between seeing a scenic photograph and actually going to the place and experiencing it first hand. Doing the Relay for Life was a good experience for me but seeing someone in live flesh and blood surviving and going through treatment made it more real. Knowing what treatment is like and how it can make one feel, I would dare to say that she was having a good day or was close to or finished with treatment. I saw in her the sparkle of hope that Relay represents.

At that moment I felt a presence greater than myself. I will never know the people who contributed to help keep me alive and give me hope. Likewise they will never know me but their belief in giving people such as myself will live on. My team and all the people at all the Relays around the world may never see who they helped but their efforts and faith make a profound difference in the world.

If I had not done the Relay, invited others to participate with me and contribute to the cause, and if there were not people who establish events like the Relay, that lady and others like her may not be alive, may not be a mother, a friend, a wife, a sister, a daughter, a relative, and would not have the opportunity to do what she was meant to do in her life.

Wednesday, May 24, 2006

On my mind at the moment

"If not me, then who? If not now, then when?"

- more later on what this means (or you can click the post title to view the link for a hint)

Tuesday, May 16, 2006

Guilligan's Cancer Free Island - Here is the Relay Team

This Saturday through Sunday a team of friends and I will be walking/running/jogging around a track at a local high school throughout the night to raise money and awareness for cancer and to also honor all who have been inflicted with the disease.

We are pretty excited. At this time there are 7 of us (including me). I will chronologically list how I came to have the fantastic opportunity to form friendships with all of them.

Yumi, my hiking partner and friend, I naturally met on a mountain top. OOOH I just loved to hike! Being on top of a mountain top was my sanctuary and my insides ached if a nice weekend day went by without taking the opportunity to be on a trail. When I turned 30, Harley got me our dogs (a very loving gift at that) and I would trek with them frequently to the top of Tiger Mountain overlooking Seattle and all of Puget Sound.
Back when I still had some hearing, I never wore my hearing aide on the trail because I would sweat too much. While taking a water break and admiring the late afternoon view, a woman came up to me and tried to communicate. Normally, in that situation people would walk away but this person was more persistent. I did have my aide with me in my pack and we chatted some before she wrote her name and number on a receipt from inside her wallet. Ever since then we have been friends and enjoyed many hikes together (one where we even got lost and had to run out of the woods and ended up in a nearby town!).
Yumi and her husband Dan have also joined me in the NF Challenge in the 3 years that I participated. It is a walking/running event held in Redmond, Washington to raise funding for Neurofibromatosis research towards finding a cure.
Yumi is also taking a glacial climbing class currently and will actually be in the Cascade Mountains the day after the event to practice self arrest skills on ice.
Recently, Yumi and her sister made a trip to Japan and Malaysia to care for her father who is battling lung cancer. We wish him well!

Melody is the second team member I came to know when I started to learn sign language again. After completing my graduate degree and for all practical purposes becoming "audiometrically deaf", it was apparent that the large growth spurt of the tumor on the side of my residual hearing was going to mostly likely leave me in a life of silence. Harley and I took a class at the Hearing Speech and Deafness Center (HSDC) in Seattle with some friends and one of my real time captioners. It was there that we met Melody.
When the class ended I transfered over to the community college and did not meet up with Melody again until we ran into each other at the Bellevue Community College ASL coffee night. At the time (in February of 2005), I had found an online a group of people interesting in sign language but I had not gone to a meeting yet as I was having trouble driving at night. Low and behold, Melody and I discovered that we did not live that far from each other! Thus she graciously offered to pick me up and bring me to the ASL meetups! How could I be so fortunate?
Melody will be leaving us soon and we are all pretty sad but also happy for her at the same time. She has been accepted by Western Oregon University in their Interpreter Training Program. For those who don't know what that means, she will become an American Sign Language Interpreter of the Deaf.

Ok, now we back track a little. After attending the HSDC, I transfered and took ASL II at Bellevue Community College. It was there that I became friends with Kristy. Of all the students there, she was the most interested in SINCERELY getting to know me. We would have good conversations before class, after, and during break using sign. Bless her heart! She really helped me out through that class as I took the class in the summer and that is when I went for treatm
ent. She diligently took very good notes for me and even typed them up! When I got back I was kind of sick and lethargic. Some days it was hard to concentrate but
Kristy was there for me.
Kristy also knows many other languages including Japanese. She is afflicted with a very rare blood disorder called porphyria. Sometimes it makes her very tired and sick but I always see her with a sunny smile on her face and a cheery disposition.

It is hard to remember exactly, but during the fall of 2004 I took both ASL III at BCC and ASL IV at SCCC at the same time. On a night when the classes did not conflict, I had a chance to attend a Silent Voices Club ASL games event. It was there that I first met George and learned that he LOVES to snowboard.
George is one of our Deaf friends who is really patient with us all learning ASL. George moved from the Philippines where he was born. There, he learned Filipino sign language which is different from American Sign Language. Thus, when his family moved here, he and his brother (who is also deaf from birth) had to go through the same classes we have gone through to learn American Sign Language. So actually, George is Tri-lingual (knows two sign languages plus English).
George works at the Fred Hutchinson Cancer Center in Seattle which is an important organization that conducts research and develops new treatments to fight cancer. George and I also share a love of Thai and Indian food. :o)

Okay now we will skip ahead back to where I left off with Melody. I met Laura through Melody that same night she and I reconnected again (at the Bellevue Coffee Night). They were in the same ASL class and we all started going to the ASL meetup together. I would ride with Melody from out where we lived and then we would meet Laura in Redmond and ride together from her house.
If you read back in my blog to last June, the 3 of us went to an annual Deaf community picnic. Melody drove. At the picnic I was still not well and my balance was just horrible. I staggered from tree to tree trying to support myself and by the reaction of some, they must have thought I was drunk. After eating the three of us walked down to the beach and I literally just lost it sitting on a log watching everyone play in the water and on the driftwood. All I could think of was how I used to rollerblade on the path, run on the cliffside trail, scuba dive in the water and walk over the rocks and wood with all my equipment, and just generally walk along the shore with ease.
I became totally depressed and hit with the reality that all of that was gone. I was totally traumatized at that moment and broke down. I tried to withhold my emotion but it was uncontrollable. I can't produce tears so I was kind of hyperventilating and it became extremely hard to breath. Melody and Laura immediately came to my side to calm me. LOL Then the strangest thing happened, like a magician pulling a rabbit out of a hat Laura whipped out some sort of tool out of her purse. She picked up a piece of driftwood and began to carve away until she has created a sailboat with record speed. Like a toddler, I calmed down and sat dumbfounded and amazed! As you can tell, she is a mother and a fantastic one at that to two beautiful children: Cody, an aspiring 13 yr old football player and Destiny, a 9 year old accomplished writer and budding artist.
Laura has the energy of a marathon mother. Not only is she a single mom, but she also works, attends the University of Washington fulltime (studies anthropology), is taking the final ASL level 6 class at Seattle Central Community college to obtain a minor in Deaf studies, is a caregiver for her children's grandmother who is battling cancer, but also found time to join our team in walking in the Relay and has done an amazing job raising funds.

Diana, I met through our sign language meetup group. She is the co-organizer and also attends many Deaf and ASL functions in Seattle and on the east side where we reside. Diana will be soon leaving us too and transfering to the same school that Melody will be attending (Western Oregon University). She is very interested in becoming a teacher of Deaf children and I think she will be a wonderful one! For being much younger than the rest of us, Diana has a rare gift of learning empathy at an early age. She is very in tune to the needs of others and has a profound understanding that would make her an excellent educator.
She is also a very dependable friend. We have gotten to know each other more as we were in the same ASL class last quarter. Over spring break I went to visit my grandpa who is battling cancer. Not only was I taking the train for the first time but I was also traveling alone for the first time as a deaf person. I was very worried about communication obstacles with the train agents, getting the wrong information, and missing the train. Thanks to Diana, I was able to get on the right train at the right time and she was there to bring me home on my return trip. If she had not brought me to the station and came in with me, I most likely would have gone to the wrong place or missed the train. Communication is really harry when people are unwilling to understand that you are deaf, need assitance due to balance, and are unwilling to take the steps (such as writing more specific information about where and when to get on the train) to help you get where you are going.
Diana has also been a God Send with giving me rides home after MY (not hers; she has a different one in the morning) ASL class (due to lack of a car from recent mechanical problems) and to ASL events at night (when it is more difficult to drive). She will also be greatly missed by my team and I.

Last I will mention Josh who is a real sweety. I also met him through our ASL meetup. He has been helping us spread the word and Laura with her donations. Josh put it many hours last year at the Redmond Relay. He is the only person out of all of us who has done a Relay event before. This year he can't walk with us because his senior prom is the same day. However, he is strongly with us in spirit. Josh is a hard of hearing student in the running start program. What that means is that in his last two years of high school he takes classes at the community college for credit. Thus, by the time he graduates high school, he will have either an associates degree in liberal studies or his two years of liberal classes required for a 4 year degree. Josh has been taking ASL at Bellevue Community College and is a member of their ASL club "Silent Voices". He is also smart with computers and has a side business with a friend and is an avid soccer player.

And there you have it........Our fantastic team!!!!!

I am very blessed to know them and have their friendship and support. I can't thank them enough and I keep asking myself and God how I got so lucky. :o)

Sunday, May 14, 2006


Here is a quote I will leave you with that leads me into my next blog post that I will write later:

"Everyone who receives the protection of society owes a return for the benefit."

- John Stuart Mill


I was rudely awaken this morning by a sharp jab in my lower calf muscle (can't remember which one). I had to keep stretching and grab the foot before I could get out of the bed to stand up. Yeah that is fine. That has happened (especially when I am on the Diamox and have not drunk enough fluids).

I made myself some oatmeal with raisins and a ripe banana boiled in(raisins and bananas are high in potassium and help to alleviate leg cramps). I had forgotten to take a potassium glucomate supplement and was planning to make a mango smoothie with the postassium rich yogurt I have.

However, I got lazy about committing to preparing it and forgot that I probably needed in and the supplement RIGHT AFTER THE LEG CRAMP OCCURANCE. As such, I was sitting at my computer just now and nailed by a whopper of a charlie horse. My calf muscle knotted up tight like a knotted rubberband pulled taut. This crap was disabling rendering my leg completely stiff. I had to sit on the floor to stretch it out as reaching down and grabbing my toe from my chair working to no avail.

The muscle is still sore when I get up and try to walk around. I guess I better start adding a regular stretching regimen to my day as well as that potassium supplement. I was all set to write a blog post about the Relay coming up this weekend but I think I better go make that mango smoothie and take a supplement.

Later, eh! Oh and HAPPY MOTHERS DAY to all the mothers out there (even the male mothers too)!

Weird Things Are Happening

As I told you in my previous post, I had to start taking a medication called Diamox again. If you have been reading my blog for sometime, you will recall that I started taking Diamox in January or February of 2005 (I gotta look that up as I should know if for my records). Anyhow, when I first began the medication I was also taking steroids so I would not have known the particular startup side effects other than fatigue and frequent urination.

I took the medicine for over a year and stopped mid-March. Then around Easter weekend I started to get some migranes and visual disturbances. In any case, I took the medicine on May 6th and 7th and then skipped the 8th in order for my doctor to see if there was any swelling on the morning of the 9th. Indeed there was so I started back up with 500 mg on the late evening of the 9th and ever since then.

So here is how it has been going:

I was really tired and yes I guess I will admit this, I started to piss my pants in my sleep on Wednesday morning. I was dreaming that I was at a restaurant and excused myself to go to the ladies room. When I dreamed I finished it seemed like I did not go. "Okay" I thought. "I will try to go again." This time however it felt all wrong and fortunately I woke up to realize what was happening. Therefore, I got up and went to the real bathroom and changed. That was about 9:30 am.

I went back to bed and awoke at 11:30 am. This time I could not get out of the damn bed. My right leg was numb and I could barely feel it! I had to twist around my foot, bend my knee, and work the leg until I had full feeling in it. Then I could stand up but I had to walk around to really get it working.

Thurday morning I awoke as a dang acne patch! I had a rash (like a heat rash) down the left side of my neck and spreading sparsely on my chest. Since then I have had welts develop all over my face.

Friday night after I took the medicine I looked like Rudolph the red nosed reindeer. SERIOUSLY!!! My nose became completely red in color as if it were sunburned.

I don't recall the specific days now (must have been Wednesday and Thursday), I tried to go for a run and I was completely exhausted and weak within minutes. I went for a run in a neighborhood near my house and I think I could only run for 5 minutes where I came upon the hiking trail. My lungs burned like fire and my legs felt like jello. Normally I can run on the easier parts of the trail but I felt all disoriented and my legs were really weak. I feared that with my disoriented vision and loss of leg strength that if I tripped I would not be able to catch myself. I worried that I could become badly hurt in the woods by myself.

Tonight will be sixth night taking the medicine so hopefully my body will become used to it again and some of these side effects will start to lessen. I really do want to do my run next weekend in the Relay so I hope my balance will be better.

Why am I awake right now? Training. lol the Relay for Life event is 22 hours. I will start with a cancer survivor lap at noon, my 3 mile run later in the early evening while it is still daylight, and walking in the evening when it is dark. I am bringing my tent there so that I can take naps.

Wednesday, May 10, 2006

Challenged by Faith

Yesterday I had another appointment with my neuro-ophthamalogist. For those who don't know and have NF2 or Acoustic Neuroma, a neuro-ophthamalogist will become a regular part of your medical care team. This type of doctor is not the same as an optomitrist or a regular ophthamalogist. A neuro-ophthamalogist is also board certified in neurology and has expertise in visual problems caused by brain tumors. An optomitrist is not trained to deal with the special concerns of NF2 and other brain tumor patients. They fit people for glasses and more pertinent matters and conditions are referred over to the ophthamalogists. However, most ophthamalogists are not familiar with vision problems caused by brain tumors and do not know what to look for. Therefore, it is important to find centers such as hospitals who have doctors who address these issues and also to look the board certifications of medical staff when choosing a doctor.

Alright blogger is acting kind of weird today. I started this post on Wednesday but never finished it. My appointment was on Tuesday May 9th. I have been having problems with my eyes where it felt like somebody unexpectedly lit a camera flash in my eyes temporarily blinding me. This was happening on a daily basis and seemed to occur when I was rising from a resting position (from lying down to sitting or from sitting to standing).

When it occured, I could not see and had to grab hold of something stationary for stability. Fortunately each episode did not last long. It seemed to dissipate in under a minute (within seconds). Basically when it happened, I had to stand there and wait for it to pass. I imagine if somebody was looking at me and noticed, it would appear that I had blanked (or spaced out) for a few seconds.

Here is the email I sent to my doctors on April 28th:

"My Major Concern: I am having visual disruptions where my field of vision is narrowed or blocked at periods of time. The effect is similar to the blinding one would experience after having a camera flash bulb go off in his/her eyes. This has been happening frequently (nearly everyday) since I started experiencing the headaches. I notice this occurs when I am rising from a sitting or resting position. The effects lasts for seconds and when it happens I need to grab something for bearing and stand there until I can see normally again. It seems to be more apparent in the right eye and I know my peripheral vision field is greatly decreased when this occurs.

I would feel much better having you look at my optic nerves now that I am off the Diamox and also administering another peripheral vision test to rule out possible swelling of the optic nerves again."

My neuro-ophthmalogist immediately responded and a sooner followup appointment was made. Seeing as I go to the UW Medical Eye Care Clinic which is also a teaching hospital, I am first seen by resident doctors. For the first time ever, I lost control and broke down once they left the room. There was nothing bad about the resident doctor and student, nor the captioner. She actually told me what I was expecting.....that my optic nerves were swelling again.

For whatever reason, it just all became too much and too overwhelming at the moment. I just totally let myself become disappointed. I wanted to believe that this was all going away and ending. I was tired of NF2 and did not want to deal with in anymore....NO MORE...IT TOOK ENOUGH!

When she told me the optic disk was swelling and that they needed to set up the periferal vision test, fear shivered my body. My thoughts were "Oh my God why is it swelling again? What if it does not stop? Will they have to open my head and do brain surgery afterall? Would I live? Would I become more messed up? Will I become blind?" It was a total snowball effect of fear and anxiety. The more I tried to suppress these feelings deep inside, the more it took over me and I could not control it.

Remember that I cannot cry. I lost the ability to form tears. I have not cried tears since probably October of 2004. I realy don't quite know how to explain what happens to me. I guess it is sort of a combination of the "trying not to cry but can't control it effect" coupled with hyperventilation and shaking. This episode was somewhat mild though. The poor captioner was a male and this was the first time I had him! He was the only one in the room with me and I think he asked me on three occassions if I was alright. I finally told him that I am not able to cry and sometimes I kind of hyperventilate. LOL I don't know if that offered him any relief. I crack up thinking about it now.

I did manage to calm down and maintain my composure by the time the medical staff entered the room again. I knew I had to stop shaking in order to take the test. Also, I knew I was starting to loose it and let my emotions get the best of me. I told myself that I walked through this thing with faith and that I had to trust it. I find this is often true of many things in general (that it does eventually work out but sometimes you are really run on the ringer or you feel like you are clinging to the edge).

Later the doctor came in and did agree that my optic nerves were swelling but it was a mild swelling (more of an increase on the side with the larger tumor). He instructed me to get back on the medicine again as it seems to be working in reducing the swelling.

I asked what were to happen if the swelling does not cease and if I would go blind. He said that there is always a risk that I could go blind but that it was unlikely. An option is to undergo surgery to reduce the pressure around the optic nerves but he did not think that it was something I needed at this time as the medicine seems to subdue the swelling and as of now it is mild. He did not know if and when the swelling will stop. I am a case where there just are not answers and he just did not know. It is simply a matter of hoping and praying...FAITH.

That afternoon I was a little down. I kept observing people and wondering about their lives. I have done this over the years when I have my moments. I watch people and wonder about their lives. I wonder if they realize how lucky they are to walk from point A to point B without even really having to think about it. Do they really know all the gifts they have? I contemplated their lives and my life. Does it even enter their minds that something like this could happen to them. Then I saw some people who looked like they could have been doctors. I wondered if there was anyone who was becoming a doctor or who was a doctor who became diagosed with NF2 or some other life altering or dehabilitating illness. Probably not NF2 or I or someone I know with NF2 would have heard about it. What would a doctor do if they found out they had NF2? What decisions would they make?

While distracted from my reading, I fell asleep in the sun on the flat black granite sculpture outside the hospital. When I awoke, I focused on the metal beam structures overhead. It was beautiful and I saw it in a way that I don't think I ever would had I not been in that position at that moment in time. It would have made a fantastic photo! I was amazed that I went to graduate school for 2 years at that University and had never even noticed the sculptures or place where I was sitting.

As the sun had changed position it became a little chilly on the side of the building where I was sitting. I decided to pay visit to the sun on the other side and sit in a park like area I had viewed from windows above but never took the time to visit. When I finally figured out how to get to the other side, there was a nice wooden arbor near some sculturesque built in the ground bird baths. It was all very artitically designed and the curves flowed from one structure to another. I found a nice place on the wood to sit in the sun and read.

After awhile I noticed that 4 birds had joined me at ground level (2 robins and 2 beautiful black birds with feathers that changed to purple, greem and brown in the sun....magpies?) The robins were a little shy and cautious. However, one of the black birds was a free spirit and did not seem to mind me at all. He (or she) came to edge of the water closest to me and took a bath in full splendor! It was an amazing site to watch the bird fully enjoying itself without minding me at all! The robins were still wary but did draw nearer. Soon the other black bird companion took part in the activity. I was completely glued and enjoyed watching them. I then thought to myself, had I not been in this moment and this time, I would have never witnessed this moment. Everyone else was busy scurrying about. It made me think about the many things I have had the opportunity to observe, reflect on, and enjoy, when I know I probably would not have the time to contemplate if none of this had ever happened to me.

Tuesday, May 09, 2006

Fantasy Physical Therapy

I know I should be going to bed and that I need to wake early for a followup/checkup with my neuro-opthamologist, but I wanted to jot this down before it leaves my mind. Actually I have a plethora of things to write about but I am rather occupied right now.

If the sky was the limit and I could arrange absolutely anything I wanted in a physical therapy program here is what I would design:

  1. Treadmills to practice walking and running on a various speeds and inclines. In addition to the treadmill there would be a safety harness or bungee seat device to catch you if you trip, lose balance, and fall. There would be a second person (the therapist naturally) to operate the controls at your command. I found changing speeds and inclines is incredibly difficult at higher speeds if you are trying to hold on to both side bars of the treadmill to maintain balance and your eyes are jiggling around like crazy which inhibits reading the darn thing. Oh and of course the treadmill would be in a room the simulated the surroundings of the outdoors seeing as I can't hear (deaf) and I cannot read the captioning on a tv (due to oscillopsia).
  2. The facility would include a pool of ankle to knee depth which simulates the swiftness and power of a current in a river. In addition, the underwater terrain would include uneven footing such as river rocks. The therapist would hold ones hand and have a safety rope to pull the person up if they fall over.
  3. Of course there would be a regular swimming pool as well with lots of practice swimming with a mask and underwater as well as above. In depths of 4-5 feet the therapist would practice spotting the person with imbalance while the person shuts their eyes and tries adjusting to the orientation underwater and finding the surface with no mask. In addition, there would be practice learning to swim efficiently again and instruction and practice at treading water in depths exceeding 6 feet.
  4. There would be a nice flat track for rollerblading. Walkers with wheels and brakes would be available and practice on how to rollerblade again.
  5. An obstacle/hiking course would consist of uneven board walk about 3 feet in width which changes in 90 degree angles. Some boardwalk would be at ground level whereas some would be about 3 feet off the ground. A spotter is next to the physical therapy patient at all times in case of a fall or momentary loss of balance (those 90 degree turns are hard!!!!).
  6. Curbs in a straight line surrounded by sand or some other soft material would be installed outside. The patient would practice walking on the curb in a straight path.
  7. Paths of different materials (deep sand, rocks increasing in size to the size of large river rock) would be implemented. The person with imbalance would practice walking on these paths with poles, unaided and without a pack, with a pack and poles, and eventually with only a pack if possible. The pack size would change in weight as the person increased in strength and balance (starting at 10 pounds and possible increasing to 70 pounds).
  8. There would be a nice hiking path with smaller hills and a moderate grade. Crushed gravel is nice but not always available in real life. There would also be various hills for practicing on going up and coming down (going down is very difficult!).
  9. Stairs (heaven forbid they are scary). This would be a better indoor exercise if a harness can be attached. The idea is for the person to gain strength and practice going down stairs (going up is much better, much easier, and less fearful).
  10. Remember those rooms fulls of balls that you can jump into when you were a kid? Or even those big air filled things that kids jump around inside. Well these would serve a two fold purpose. First, from what I remember about them, they were hard to walk and balance on but you did not hurt yourself when you fell. These would be great for helping people work out the muscles needed for balance. Also, it would be interesting to use it as a similator for getting up on water skiies. I used to LOVE waterskiing. However, I no longer have the balance to stand up. In the simulator, there could be a device to mimic the tow rope behind a boat. A person could sit on the ground and practice standing up with the tow rope. If the person falls over, there is nice cushioning available.

Okay, I know I have given lots of thought to this but these are the main ones I remember at the moment. I have quite the imagination, don't I? Well it is time to hit the hay! Have a good night!

Monday, May 01, 2006

Riding on the Train

I told you that I wanted to write about the train ride over spring break. It was VERY long! I don't know if it can completely be attributed to NF2 or just antsiness for anyone. I do know that if I do not exercise or walk for 2 days it becomes incredibly challenging to walk straight and maintain balance. For this reason, I need to walk almost daily for an hour or more.

While on the train (if traveling from the west coast to the midwest), walking is not an option. Anticipating this dilemma, I went for a run earlier in the day that my train departed. That still did not solve the problem as I had leg cramps in the middle of the night that knotted up my calves. Fortunately I had some potassium supplements with me so the cramps would not be so bad.

My advice: if you are taking a train for a long distance (longer than a day), get a roommette car. My dad and I did not get one (there were none available) and we had to sleep in our seats. If you thought flying to Europe was long, trying being confined to a train seat for 43 hours! Sleeping in a coach train seat is comparable to sleeping in a Chevy Silverado truck seat. You know how truck seats do not recline all the way back so you are still sitting upright the whole time but just at a little reclined angel.

Of course in this position I could not sleep more than a couple hours and kept waking up. I was actually kind of lucky actually! If the person in front of me had his/her seat reclined, my feet just touched back of that seat. My dad however, has much longer legs and could not stretch them out. I can't even imagine!

If the train was not too packed, you could sit alone and try to sleep in fetal position in two seats next to each other. Even in this position, I continued to get leg cramps.

The second day on the train (after only a night) I thought I was going to go mad! When the train made one of the very few stops where you could get off and stretch out, I jumped at every chance. Aside from the dang smokers billowing practically all breathable air on the outside of the train, it felt good to get off and at least feel the cooler air. In the 10 minutes or less that you are given, I took the opportunity to walk as much as I could the length of the train and back.

Back on the train my legs became very agitated from being in one position for so long. To stretch them out I would try walking the isle of the train which was not a simple task. Surprisingly, I found the train to be more turbulent (yeah it is a joke) than a plane! If it was really bumpy I bounced down the isle clutching each seat and nearly landing on top of seated passengers.

I think one man thought I came from the dining car and was drunk. He laughed at me and try to say something. I, of course could not hear him because I am deaf and told him so. He then motioned something having to do with my wobbling and balance, then laughed again. I told him I had poor balance due to brain tumors. I hope he felt like an ass after that.

Once on stable ground during my visit, I had to walk everyday in order to regain and maintain balance and prepare for the long ride again a week later. The trip back did not seem as bad. I figured out that I could read better either at the seat or at a table. At certain points the scenic car bounced around too much which made reading very difficult with Oscillopsia. If sitting in the seats facing the window in the scenic car, there was more bouncing making it impossible to read a book! The trick is to be facing either the front or the back of the train (same position as the seats you are assigned to). We grabbed a table in the scenic car that was next to the wall and door. This seat to be the most stable in the scenic car and the table offered more stability for reading.

Oh yeah, one more tip: If you have a roommette there is room to stretch out (like actually do some stretching). Also, it is very hard to maintain balance in the bathrooms. It is best to go down there when the train makes a stop and is still. Think of going in a bouncing honey bucket at opposed to a stable one. With balance disfuntion, it is hard enough (if you are a woman) to hover above a public toilet or outdoor john anyway. Boy I could tell you a slew about my bathroom balancing act adventures!

Swimming in the pool

A few weeks ago Harley and I went swimming at the gym pool one weekend. While I am not able to to swim laps quite fluently and to do the lap lane change (you know that summersault thing that turns you the other direct), I am quite comfortable in the water. I have to admit that I prefer to be swimming under the water with a mask and snorkel than on top of the water without.

It is hard to do the crawl stroke without a mask when there are other people in the pool. When there is a little wave action from other people it is very difficult to balance while standing or to swim straight. I also seem to sink more now than float and when I was trying to do the crawl I ended up swallowing lots of water. The turning of the head back and forth in the crawl stroke disorients me so I have to keep my head straight forward and to also use goggles because I can't close my eyes. If I were to close my eyes I would lose all orientation. In addition, I cannot create a tight seal on my right eye and I would get lots of chlorine in it.

I actually practiced kicking on a kick board and also swimming with a mask and snorkel with my head down. I just LOVE having a mask and snorkel. As long as I am wearing a mask, I can do 6 complete summersaults in one breath. Without a mask I cannot complete 0ne summersault and need assistance to find the surface. It seemed easier to find the surface on my own this time than last summer.

I still really love the water. When I was home a week ago I wanted to waterski again if the water was not so cold. I remember how to do all these things, my body just does not balance. I wondered if I could relearn it somehow and make my body waterski again. I always liked waterskiing over tubing. I have never been much of a tubing fan.

This was our first time in the pool for the year. The last time I was in the pool was on our trip to Arizona. I think we were in the pool 2 or 3 times that vacation (in October) and in the pool 3 times in August when we went to Canada. I am really hoping to go snorkeling in June when we go on our cruise. It would seem a sin to not snorkel in the caribbean! I would love to dive but I have not tried it out again yet. If I cannot dive, there are some tourist submarines to be had in Grand Cayman and Cozumel.