Thursday, April 26, 2012

Horse of a Thousand Wishes

Horse of a Thousand Wishes

In the summer of after my stroke, I learned that there was a therapeutic riding center in Winthrop, Moccasin Lake Ranch.  There, Ginger, a barrel chested, gentle chestnut mare and I were introduced.

During my first ride, Annie, the instructor, walked Ginger and me along the trails and dirt roads behind the center. Previously, I had been told by one of my therapists that after sustaining a disability such as I had, to seek out new physical activities rather trying to return to favorite ones enjoyed before the stroke; that it would be less frustrating and more enjoyable.  After my day with Ginger, I felt, I had found one.  A new dream had come true. 
Happy Trails to You!

Back in Kirkland I continued to pursue riding at another therapeutic riding center nearby, Little Bit.  My new dream was developing! After 3 lessons, Little Bit called and reported that my bone density numbers on my left hip were too low and that I shouldn’t ride.  The reason they are so low is because I put very little weight on my left leg as I walk due to my stroke and osteoporosis runs in my family. My dream began cloud over. The Little Bit Riding Supervisor and I spoke for a long time. She did say that I could ride if I signed a liability release. Unnecessarily, she explained that any horse can spook, jump sidewise, or buck causing a fall that could perhaps fracture my hip.  This was obvious.  My love for adventure and physical activity was tempting me to sign it, but then I began to think.  If I injured myself, I would not only impact me but I would also impact my loving husband as well, maybe even more.  This seemed so selfish as he has done so much for me.  So after a time I decided to let go of the dream of riding at Little Bit. 

Given my osteoporosis, it stands to reason that I would give up riding at Moccasin Lake Ranch but I haven’t.  Pondering this for so long has not revealed a satisfying rationale. Subconsciously I must have recognized  significant differences between Moccasin Lake Ranch and Little Bit. Little Bit serves numerous children and adults and most lessons are conducted in groups of 8-10.  There is very little individual attention and I ride a different horse every time.  At Moccasin Lake Ranch I ride Ginger only, a very reliable, comfortable horse.  While in the arena, Annie is always with and there are no other horses.  It is a much smaller program. I am more comfortable and confident at Moccasin Lake Ranch than at Little Bit.


In today’s early morning dream, I was visited by The Horse of Thousand Wishes. As dawn’s early morning mist rose, from the hills and vales of the landscape, an empty, almost desolate camp was revealed. No sounds of active campers, eager to mount their ponies.  No comfortable nickering among the equine friends huddled together in the paddock.

Sweet Ginger, usually saddled, tacked and ready for me, was not there.  Neither was Annie.  There instead was Safire, the Arabian, the one I rode at Little Bit with her fast, erratic, bouncing, uncomfortable trot.  Was she for me? Was I to ride her?  Most campers did not as she is an erratic, uncomfortable mount.  Excitement and trepidation flooded me.  Should I get on?  The stable hand saying nothing, beckoned me to the mounting ramp. Ready to help. Could I ride her?  Should I rider her? My adventuresome spirit urged me to squeeze my right leg on her side.  Her spirited walk startled me, unlike Ginger’s mild plodding.  Should I be doing this?  Sure! Kick her into a trot!  No, into a canter!!  Yes!  I’ve dreamed of getting this far for so long!  But wait.  “Bone density”, “any horse can spook”.  “Do you want to risk a broken hip?”

I woke up.  Hip?  Still  in good shape.  Phew!

The wee hours during which Sapphire visited my dream today have often been occupied by dreams of wishes; running, waving to a friend with my left arm, walking barefoot, holding a baby; the return of simple pleasures really.  But when I awaken, these dreams canter away on the back on the Horse of a Thousand Wishes.

Watch the trailer!


Monday, April 9, 2012

Not Your Mother's Botox!

We all know about the cosmetic uses of botox; used to release the lines on our face that are the imprint of our lives. When I tell me friends that I am going for a botox treatment they inevitably raise their eyebrows in surprise, knowing my feelings about it. I reassure them by explaining that I use it to treat parts of my body affected by the stroke; that this is not your mothers’ bottom!

One of the effects of my stroke is that the damaged part of the brain causes the muscles on the left side of my body to contract so tightly that I cannot use my arm and leg very effectively, if at all. This is called tone. I cannot straighten my left arm. It always looks as if I am about to give someone a hard left hook. My quadricep muscles in my thigh are so contracted I cannot bend my knee. So in order for me to walk I have to swing my left leg way out to the side to clear the floor. My big toe is so contracted it curls under my foot when I walk; causing repeated ingrown toenails and intense pain which frequently forces me into my wheelchair.

Right after my stroke I started seeing a physiatrist who administers botox in stroke survivors. The botox is injected into the effected muscles and relaxes them. Wonderful. We tried it on my arm and it while my arm was no longer in it’s threatening left hook position, I still had no use of it due to the severity of the damage caused by the stroke. Since my leg and foot were my biggest complaint we tried injecting it there. This was problematic. The muscles of my leg and foot are far larger than those in the arm would require a much larger amount of botox to be effective than is recommended. So for the next 4 years I had to endure a excruciating pain in my foot & toe until I broke my knee. Huh? How does that make sense?

While in the hospital recovering from my break I spoke with my rehab doctor, Dr. Lim about the severe pain I have in my leg and foot. He explained that in his training he has learned that much more botox can be used to treat severe tone than had been thought previously. Once I left the hospital and was well on my way to a full recovery I made an appointment for botox treatment in leg, foot and arm. From 3-4pm on a Friday was an extremely long hour as I endured 17 injections! Many were pretty easy to take, others marginal and at least three made me scream out. During the last one in the outside of my left calf, the muscle spasmed so hard it bent the needle. That was the worst!

Two days later my arm was relaxed almost to the point of looking normal by my side, I could bend my knee more easily, making my walking gait more normal. But best of all my big toe is relaxed to the point where it no longer hurts! It has been 5 years that I have walked with severe pain daily. The imprint of the relief and joy show in the smile lines of my face. Those lines I am happy to show to the world!

Saturday, April 7, 2012

The Lokopad @ Pushing Boundaries

The Lokomat at Pushing Boundaries

In July of 2011 I started going to a gym called Pushing Boundaries. This is a gym specifically for people with physical disabilities. The range of disabilities served include paraplegics, quadriplegics, stroke & multiple sclerosis. Pushing Boundaries has an incredible machine called lokomat. It is a glorified treadmill. The purpose of its use depends on the individual’s disability. For hemiplegics and paraplegics the benefits include increased blood circulation and bone density. For stroke survivors it works on neuro-muscular re-education and improvement of the walking gait. This is why I go there. There is a YouTube video of me on it. Its URL is below. The following explanation of how it works will make the most sense after viewing the video.

Watch a video of me on the lokopad. Paste the link below into the URL box.

The therapist puts me in a very tight harness that goes around the abdomen. It is so tight I now think I know what a corset must have been like for women in the past! Once on the lokomat I am suspended by an overhead lift. I call it my Baron Harkonen moment. While suspended the therapist attaches robotic arms to my legs, starts the treadmill and slowly lowers me onto it while the robotic arms move my legs in the proper mechanics of the walking gait. Simple enough but this where the work for me begins. In front of me are 2 screens with moving line graphs displayed on them. One screen monitors the left leg, the other the right. Each screen has 2 lines a white one and a red one. The white line monitors the front muscles, the red, the back. The lines on the graph indicate how much effort I am exerting in each muscle group. We start with one muscle group in my non-effected or strong leg. I set a baseline on the graph using that muscle for 30 seconds, then we switch to the weak leg and work that same muscle group trying to meet the baseline set by the strong leg, very hard to do! The therapist coaches me on timing of the activation of my muscles because if I activate them to soon or too late in the gait the muscle isn’t effective and I walk incorrectly. After 30 seconds we switch to another muscle involved in gait. We usually do 2 rounds of this followed by other less specific walking work. After this we remove the harness and I can breathe again! Then we move to the weight room and work on these specific muscle groups again with weights. We also walk to try to integrate the work on the lokopad into my unassisted walking gait.

I am now 5 years out from my stroke. Of all the therapies I continue to do, the work at on the lokomat is the most powerful in developing strength and correcting my gait. My gait is still not correct but I keep working at it. I was told in the hospital that whatever gains I make in improvement will come in the 1st 2 years after my stroke. Well after 5 years I am still making progress, albeit slow progress. I believe the brain is an incredibly plastic organ and that there will always be improvement. This is why my other part time job continues to be therapy!

Tuesday, November 30, 2010

Greatest Birthday Present Ever!

My Birthday, November 25 this year, happened to fall on Turkey Day. Yipee! That gave me a 4 day weekend in which to celebrate. I received the gifts of good food, good friends, warmth of body, love of family and laughter. I also received the best gift ever; being able to help a family in crisis.

Since my stroke, I have become a peer mentor at the hospital where I survived and began recovering from my stroke. As a peer mentor I go to the hospital and visit with stroke survivors and their families who are about to go home. Going home after suddenly becoming disabled, physically or mentally or sometimes both, is daunting beyond imagining for the survivor and the family. On Saturday of the T-Day holiday weekend I was called to visit a 46 year old woman. I will call her Molly. She had just survived a series of left brain strokes. She has no insurance, therefore, she was unable to take advantage of the in-patient physical & occupational therapy at the hospital. Her family has meager means, thus, her prospects for a robust recovery are slim. Her social worker was able to get her into a "nursing" home for 2 weeks to do some physical & occupational therapy before going home. Molly was refusing to go to the home. When I got to her room her adult daughter was outside the door sobbing, inside the husband was too. They were so frustrated because they correctly saw this as Molly's one chance for therapy. I recognized that she was terrified and also knew that the sooner she engaged in therapy the better were her chances of recovering lost function. After gaining her trust I asked her about her fears. I listened and listened. When she was finally spent I explained the value of this therapeutic opportunity over and over until finally she agreed to go, for "1 week". Hopefully once she's been there for "1 week" she will realize the value of staying for 2. I will never know. But, I do know that the hug of her daughter gave me as I left was topped only by her smile.

P.S. Soon after my return home I read an article out of Stroke Connection Magazine the articles of which are all written by stroke survivors. In this article the author was explaining what was good about his stroke. I couldn't believe it!!! I tossed the magazine. I get it now. If I had not survived my stroke. I would not have been able to help this family.

Wednesday, August 25, 2010

My Greatest Fear

  Just received a text from a fellow Stoke Survivor.  She was in Swedish Hospital for a broken knee AND a hemorrhagic  stroke - the same kind I suffered.  I do not know the extent of her brain damage yet.  Since the survival rate for this type of stroke is only 15% she is considered lucky. If her cognitive function is still good and she doesn't have aphasia - inability to speak intelligibly she in fact is lucky.  She's lucky since the absence of those two afflictions means she can still participate in life.  It is curious to me that when a person survives the tragedy of stroke most people automaticaly assume the victim is 'lucky'. After my stroke I wanted to die.  I couldn't walk or use my left arm. My husband continued to remind me how lucky I was.  That infuriated me! How could I be lucky with these disabilities? I did not understand that I could have lost my cognition, sight, ability to read or speak, all common afflictions of stroke. These abilities are central to being able to participate in community. Even if I can't ski or run or do any myriad of physical pursuits, I can teach children, talk with my husband, laugh at funny situations, etc. If we don't have those abilities we are truly alone.  Greatest Fear!!

Tuesday, August 24, 2010

A New Life of Solving Problems

Once I was moved from the Critical Care Unit to the Acute Rehab Unit, my new life of solving everyday problems began in earnest.
That first morning my occupational therapist, whose job it was to help me with activities of daily living (ADL), helped me transfer to a wheelchair,wheeled me to the sink so I could brush my teeth for the first time in a week! Simple ADL right?, Wrong! One must remember that the stroke rendered my left arm completely useless. My elbow is permanently positioned in a 90 degree angle and and my fingers are constantly clenched in a tight fist. So how does one unscrew the top off of a tube of toothpaste? How does one stabilize the tooth brush so the paste goes on the brush, not the counter? Argh!! So frustrating!!! Sometimes, depending on the task, I recruit my teeth to help out, but I have to take care not to abuse those! I certainly would miss those if I lost them. Life is full of innumerable, seemingly simple tasks such as this and a stroke survivor as to muster up an unfathomable amount of patience to successfully solve them without blowing a gasket. 

The most intensely aggravating of these ADL's is the bra!! Who invented these anyway? Gosh I yearn for those days before children and age made wearing a bra unnecessary! I know I am bordering on TMI. Oh well. Initially my solution was to hook the back closure of the bra together and pull it on over my head; not easy either but after many attempts of getting hopelessly tangle in it, I figured it out. The draw back to this technique is that it did not take long for the bra to get hopelessly stretched out as to render it ineffective. Why bother? My husband suggested that I try one with a front closure. Well those clasps require 2 hands and manual dexterity. With only one functional hand, that was out of the question. After several months I finally took my bra to to a tailor. I described to her that I wanted her to cut the bra between the 2 cups and sew in place two opposite strips of Velcro. It worked, problem solved! 

I have a dear friend who wanted to appreciate just how daunting ADL"s can be for a stroke survivor whose arm is paralyzed. So she restricted the movement of her arm for 24 hours. She kept a journal of her experience. She was struck by just how many ADL's there are that are incredibly difficult to do with only one hand. The task the presented her with the most challenge and frustration? Putting on a bra! I felt validated!

Saturday, August 7, 2010

What about Sex!

Well, It has been quite some time since I posted on my blog.  Life got in the way!!  Yesterday I found myself thinking bout the various questions I've been asked about my stroke and subsequent disabilities.  I am quite open to answering these questions and welcome them. However, I have been presented with a question for which I was not prepared! When I visited my school and  students 3 months after my stroke, a teacher with whom I am collegially familiar but not, shall I say, "close"to  came bounding up to me and in a hushed tone inquired, "How do you have sex?"  Being taken aback, and unsure of  what to say, I said, frankly, "The same way most people do".   To this day I am not really sure what it was she was looking for.  Knowing that the left side of my body was left paralyzed and my sensation of touch was also severely compromised by the stroke,  did she want to know about sexual positions, libido, sexual response, whether mechanical aides are necessary/beneficial? .....I can only wonder.  

 I have pondered this question over the ensuing months/years .  Any reading material I stumbled into that addressed sex  said basically the same thing without exception including:
  * Make sure you  (stroke survivor) maintain good personal hygiene.  This can be a challenge for anyone with disabilites.
  *Intimacy can  be attained without climax.
  * Do only what you're comfortable doing.

While these are important "tips" for anyone engaged in a sexual relationship, I felt all of these articles fell short in addressing  the issues that come up in  a sexual relationship for people with physical disabilities.

If my colleague were to ask me this question today, I would address these points:

If the pre-stroke preferred positions for sex are no longer possible or safe work together to discover new ones.

If the sensory perception is so compromised  a mechanical aide might be helpful in achieving satisfaction.  Try one or two or three, you never know which one will be best. 

I was told by my acupuncturist that the libido meridian is located in the foot. She explained that lightly trailing a soft feather over the feet and the rest of the body during foreplay stimulates the libido.  That worked for me!

When stroke strikes the survivor  and their partner begin a marathon journey of problem solving.  Very little of daily life is conducted the same way.  Partners have to figure out how to do things differently.  The same goes for sex.  Since there are 2 people involved in a sexual relationship, open, honest, kind and patient communication is critical for mutual satisfaction and intimacy to occur.  If the partners had these qualities  of communication in their relationship before the stroke and sex was mutually fulfilling, then mutually satisfying and intimate sexual encounters can continue after the stroke. Both partners simply have to approach sex differently!