Embracing our Imperfect bodies

A woman I have met through various rehab facilities here in the Bay Area, recently gave a Tedx talk that I wanted to share. She has MS and her story of acceptance and transformation while living with a disability has cajoled me into taking a look at my own acceptance of what (she jokingly refers to) as the trainwreck that is now my body. Her talk made me laugh and feel better. It inspired me to remember to be true to myself. Hopefully I can carry through on finding out what that means. Onward! Here is a link to her talk-I highly recommend it!

Learning to Embrace and Celebrate Our Imperfect Bodies | Elizabeth Jameson | TEDxStanford

Insult to Injury

A insightful talk on how neuropathic pain effects people with spinal cord injuries and ways to help cope with it.

https://spinalpedia.com/video/Z2vD7G6PDpJ

What a Year Brings

sunset on crater

The long,chilly nights of December invite the time to reflect. I always enjoy collecting the letters and emails of friends and family recollecting what the year has brought them. Of course, before social media, this was usually the only way to find out what was going on in others lives. I appreciate those that take the time to connect personally. So  I am-here we are-ending 2016. I am not going to touch on the turmoil felt over the world, politically speaking, though I will reiterate one idea I have heard,  that I feel very lucky to have been born as I am and in this time. Anywhere else at any other time and I (we) would be either suffering more than we can fathom, or we would be dead. Heavy stuff to think about on New Year's Eve, but I think it is appropriate, because it is these thoughts that make me feel gratitude and at peace. So I may be physically alone tonight, just me and my dog, but I have the company and comfort of good friends, a loving family and abundance on so many levels. So, I will not lament the things of the past year that I cannot control, but have gratitude for what has happened and strive to make my life better in 2017 in the hopes that it will ripple out and impact other lives in a meaningful way.

If it were not for the positive and hopeful actions of others, I would not have had the honor of receiving two wonderful gifts this year. One is the van I received last January (see former post) and the other was the amazing opportunity to travel to Maui for 3 weeks. A dear friend funded the opportunity to travel there to train in a specialized Neuro rehab as well as experience the beauty and healing powers of the island. I worked two intensive hours 5 days a week and on my days off I was able to body board once, dip my body in the sea next to a sea turtle, watch a never ending sunset atop a magical crater at 10,000 feet, and face off on anxieties and fears that had been plaguing me for
several years.

surfing in maui

I came back from that trip with a renewed desire to keep striving to be stronger, both physically and mentally, so I can find relief from the pain, fatigue and anxieties that holds me back.

Several infections weakened me considerable this year, and making a comeback requires more physical therapy than I have been able to afford these past few years. I have received such an embarrasement of generosity that I honestly feel guilty and ashamed to seek out more in the way of funding, but I know people will only give if they are able and if they believe I deserve it. Maybe I don't, and I can accept that. Either way, I will always be grateful for the belief in me that has fueled my recovery until now. If you are interested -donations can be made to HelpHopeLive.

Whatever 2017 has in store for me-for us- I will do my best to always seek out the grace in whatever situations I encounter and I invite you to do the same.

Love and blessings for a peaceful New Year.
-Cynthia

Swimming in Maui

New Adventures Await

On January 14th I was given a gift I had dreamed about for the last several years-keys to a ramp van that I will be able to drive. Many of you know the story and were essential in transforming this idea into a reality. NMEDA hosted a celebratory party and many friends and family joined in the celebration. I have had my first driving lesson-and although I feared that I would careen into oncoming traffic, I managed through the 2 hour lesson and felt exhausted but empowered! Before I know it, driving will just be part of my life.

 I will always remember to feel gratitude to all the collective energy that put me behind the wheel. I was utterly blown away with the enthusiasm engendered from friends and family-YOU made this happen! The votes, the money raised to cover the taxes and the donations from NMEDA, Honda, VMI, MobilityWorks and other vendors just shows that there is generosity and good in this world and I will do my best to be deserving of it and spread it around. Thank you all so much for your unwavering encouragement and support!

Vrooooom!

On June 23rd, I got the phone call that will profoundly and positively impact my life- I won a brand new, fully converted mobility van! This was one of three vans awarded in a contest that I entered in May. Many, many people  voted throughout the month of May to get me into the top 10% and then an independent panel of judges chose the finalists. I am just stunned at this tremendous gift. This is the work of many hands and I am extremely grateful for everyone's efforts to make this happen.

This van means so much more to me than just transportation. It means more independence and greater opportunity to be more involved with my community and reach out to others in need! With this blessing does come financial responsibilities and I am hoping this blessing does not become a burden. The van I am getting is valued at over $70,000 and since it is a prize, I will have to pay income tax on it at cash value, which will be over $15,000. As they say, "there ain't no free lunch."

But this is a good problem to have!

 I have received so many blessings these past eight years since my onset with TM and I give thanks everyday for those.

With the help of some wonderful people, we are now fundraising and anyone who is able to give, we kindly ask to go to: https://helphopelive.org/campaign/2763

 Prefer to write a check?
Payable to: HelpHOPELive Memo line: In Honor of Cynthia Noonan
Mail to: HelpHOPELive
Two Radnor Corporate Center
100 Matsonford Road
Suite 100
Radnor, PA 19087

Matching gift opportunity! Heartworks, an acts of kindness organization from my hometown, are matching up to $6,000 for all donations made before August 26th!

I plan to use this van to create hope and happiness in other peoples lives so I can pay forward all the gifts I have received.

All donations are tax deductible.

When I won the van, I was flown to Tampa to film segment on a daytime tv show with the winners. You can watch the video here:Tampa Video

.

Vote for Cynthia Noonan - Emeryville, CA in the 2015 National Mobility Awareness Month Local Hero contest!

Click here to Vote for Cynthia Noonan - Emeryville, CA in the 2015 National Mobility Awareness Month Local Hero contest!

See ya later 2014...

Posting this belatedly: Although this post is not as upbeat as the usual, I still wanted to share. Quick update- health and strength seem to be slowly improving, for which I am thankful and much relieved, though there is still much work to be done!

 I have to say, I will be glad to part with 2014. There are parts that I will keep and put up on a shelf with cherished memories- the Revolution Ride, watching my friend Molly get married in Montana, and my favorite-getting Freckle the wonder dog from Canine Companions for Independance. Of course there were many smaller moments of love, laughter, joy and triumph and I cherish those moments as they are what sustain me through the darker times, and 2014 had plenty of dark times. It is these moments I wish to forget, but I know that these moments -as painful and terrifying as they have been- have brought me to a place of introspection and, hopefully, growth. As I write this I am still struggling with my biggest back-pedal since my onset of TM. I have had a few set backs over the past few years, but this one has been the harshest and most sustained. For 3 weeks now, my physical abilities have spiraled down to where many easy tasks I used to be able to do (like transfer from my wheelchair to the bed) have become lost. Where did they go, you ask? Hopefully they are just having some down time while I am treating a UTI. I have 2 more days left on my antibiotic, so I'll be done just in time for Christmas. We'll see if a Christmas miracle follows. If not- I'll just keep my head down, spirits up (yes, please!) and count my blessings. I will do my best to not be terrified and to remember that-just like in the quote above- there is a light that will reach us after our darkest times.

Haven't seen Freckle yet? Well, here she is!

Revolution Ride

It's that time of year again when I  begin training for the BORP Revolution Ride. This will be the 4th year that me and my incredible tandem partner, Elizabeth, will cycle the hills of Sonoma and raise money for an organization that has helped me and so many others.

This year the Revolution is on September 27th and this also marks 7 years since my onset of Transverse Myelitis changed my life forever.  BORP- which stand for Bay Area Outreach and Recreation Programs- has been crucial in my physical and mental health. Not only has the organization allowed me enjoy the physical activity I have always loved, but it has also introduced me to an amazing community of people who haven't allowed their physical disabilities stop them from living their lives to the fullest.  This community continues to support and challenge me.

 I would be grateful if you are able to help me reach my fundraising goal! No amount is too small. Or maybe you would like to register and join my team! The Revolution is not only a ride, but a great family friendly party and one of my favorite days of the year! Volunteers are also needed. So many ways to be a part of the day and BORP!

To donate or join-please go to

http://org.grouprev.com/cynphonics

To learn more about BORP and all the wonderful things they do, visit their website at www.borp.org

Thank you so much for your continued support!
Freckle doesn't want to beg- but she does love to go cycling at BORP!

Drug may reduce chronic pain for spinal cord injuries - The Almagest

As someone who suffers from chronic neuropathic pain, I am always on the lookout for promising research. At this point I feel like I can deal with paralysis- but the pain is far more debilitating.
Neuropathic pain is extremely difficult to treat and I feel like I have tried most drugs, usually with side effects that reduce my ability to function properly, so not really worth it-plus they don't relieve the pain. I've been on gabapentin for 5 years now so my body is used to the effects of the drug. I know it is reducing my pain levels only because when I am late taking it, my pain level increases. I've decided that, for now, I am going to make a commitment to practice mindful meditation regularly as a way to decrease pain- along with my gabapentin.  I'd love to not take any drugs, but if there is something that could improve the quality of life for me and countless others, I would be on board, in a heartbeat.

Drug may reduce chronic pain for spinal cord injuries - The Almagest

The Disability Treaty

I found this Op-Ed piece in the LATIMES today written by Mathew Reeve, Christopher Reeve's son. It is an important reminder that the Senate needs to ratify this important treaty to ensure equal treatment of people with disabilities globally.  Read on!

 Honoring Christopher Reeve's Legacy

You can't always get what you want, but...

A yoga teacher once told me that "stress is resistance to what is." Pushing against it is like banging your head against the wall; you don't get any where and you end up with a headache, or worse, a bloody head.  As much as I know this, I still find myself, when in difficult situations, pushing instead of taking a deep breath and having faith. Thankfully, what I will call my angels, will intervene and I'll be reminded to focus on the present and all the grace I have received. I would like to say that I am then relieved of my worries, but they do return. I am at the very least, grateful for the reprieve. Okay, why am I blathering on about this?

Well, for one, Trevor and I are once again needing to move as our rent as sky rocketed due to the crazy rental market that is the SF Bay Area. For months we've been spending all our free time looking at apartments that either had stairs, or usually the case, the bathroom was too small for my wheelchair. I don't drive (yet) so it has to be close to public transportation and all the services I need. It has been stressful and disheartening. The best thing we found was, well, dingy and depressing, and I thought "well, if that is what it is going to be I will make the best of it." And I honestly felt at peace with that. After another day of looking at four apartments and not a one working out, the clock was ticking and I was ready to concede. The next day, we had yet another appointment and... we found the place! It's not exactly what we had hoped for, but it will give us what we need and we both feel positive about it. woohoo!!

Finding the apartment did not magically transform me into an enlightened being, but it lifted a few bricks off my back. I am now ready to tackle the other challenges ahead, and I will do my best to recall Miss Jane Fonda when I am ready to take my head to the wall, "don't forget to breathe." ahhhhhh

Another blessing was my third Rev Ride to support BORP (www.borp.org). It is seriously one of my favorite days of the year.  It's one of those days that I wish I had a pause button. This year proved again the magic of community and that nothing beats having the wind blow through my hair as I wind through the hills of Sonoma!  Here is me and my tandem ride partner and amazing friend Elizabeth as we get ready to ride 20 miles.

Groundbreaking recovery for spinal cord injury patients: WHAS11 | uoflphysicians.com

Groundbreaking recovery for spinal cord injury patients: WHAS11 | uoflphysicians.com

Leap in spinal regeneration claimed | The Japan Times

Leap in spinal regeneration claimed | The Japan Times

This is very promising news on research.  Dr. Wise Young is a highly regarded doc here in the states based out of Rutgers University. I have no idea if they will also look to use this treatment for TM but I don't see why not.  Anyway- something to be hopeful about a few years down the line and all the more reason to stay fit!

Flip It

I find myself once again inspired by those dear to my heart who have left behind their earthly bodies but still live on to bestow wisdom- or grace droplets as I think I'll call them from now on. Before I get to the inspiring part I'll give a little background.

This spring has been an especially difficult time for me and my family.  We held each other nervously through the winter as my dad went through a bone marrow transplant that resulted in a five month journey in the hospital. His journey was fulfilled with his death two-minutes to midnight on May 15th.  Even as his health got more dire, we all still lived in the hope that he would fight it out. Lord knows he did his best to get better, but it was just too much in the end.

We celebrated his life with family and many friends in New Jersey. After a long day and a 6 hour flight filled with bouts of tears, Trevor and I arrived back to our apartment in Berkeley to find that our corporately owned  apartment building is raising our rent 10%. Talk about insult to injury!

The last month I have been overwhelmed with trying to find a new apartment that is safe, wheelchair accessible, in a wheelchair accessible neighborhood, near public transportation and... affordable. All the while trying to negotiate some leniency with the corporate doohickies.  Not an easy assignment.  So here's me, feeling overwhelmed by life. Grieving and broke with all these other ailments that were just bringing me down- hard! And all I've been thinking is "I CAN'T, I CAN'T, I CAN'T" - not very inspiring or grateful, huh?

I was prepared to write a new blog post ticking of all the things that were wrong, why I'm so helpless and life is so challenging. But then- intervention from Dadio! I was going through my gigantic box of papers  and I came across this little business card he gave me a few years ago.  On the very top it reads "Attitude= the difference between Ordeal and Adventure." And it was just like the proverbial switch,  my attitude just changed.  I tapped into my strength and realized I don't have to feel helpless, that my reality may not be ideal at this given moment, but I have options and opportunities. I just need to be aware of them. 

At this moment I feel positive with strength and love, so I need to remember this grace droplet so when that despair comes creeping back I can flip it.  Thanks dad!

Repeat After Me

"I'm mad as hell and I'm not going to take it anymore!!" Don't just say this, open up your mouth and yell it, several times. Now stop and be present. Don't you feel just a little bit better? Today I learned a valuable lesson about anger, that you can actually harness its energy and feel good.  Now, I'm not planning on going completely off the deep end a lá Peter Finch in Network (if you haven't seen this movie, it's fantastic!), but I'm allowing myself to be pissed off every once in awhile. Toss it out to the universe and create a positive from the negative

Days Gone By

    Struggling as of late to write on the blog, or write anything for that matter.  I cope with the side effects of Transverse Myelitis- pain, fatigue and depression, yet so often my problems seem insignificant while so many are struggling with illness, poverty and profound grief.  I've used this blog as an outlet to mainly share my triumphs and I desire to keep the focus on the positive, but I selfishly will use it now as a catharsis. Ready? . . . There- that feels better.  Though  2012 I have absorbed my own and others hardships,  I do feel I have overcome many obstacles and would like to reflect on and celebrate them.  Mother Nature was on my side for most of the year and we enjoyed dry and temperate temperatures until recently.  I had concerns that a rainy winter and spring would impede my new found freedom as my wheelchair cannot get wet and I already had mega fear about just being out alone in the big, bad world. Not having to worry about getting stuck in a deluge allowed me to face my fears.  Now, having gained more confidence, if the sky threatens rain I just pack my poncho and go.  Thankfully, I have not yet had to "rock" the stylish red poncho. If only they could make rain gear for a wheelchair that doesn't make one look like a float in a parade.
     Being out on my own has helped me overcome my anxiety and pride about asking for help.  If I need it, I'll ask and if it's offered at an appropriate time, I'll accept.  To clarify my own boundaries, if I am able to do something on my own, I'll decline the offer.  It's interesting how people relate to me now that I'm in a wheelchair.  They sometimes want to share there own stories of injury or illness. My favorite this year was the random, yet seemingly sane, stranger who said to me as I passed him "I was in a wheelchair for 3 months and it sucked." Ummm, yeah. Thank you for sharing (insert profane word here).  This is when I do my best to avoid eye contact and just ignore that person, though a large part of me would like to share with him that his comment was insensitive. I think that people just want to, in some way, communicate or identify with what they fear- so I just go about day and leave them to ponder.  There is also the kindly woman who owns the nearby flower stand who asked me what was wrong with me and then offered to give me a massage.  If we are going there- how about free flowers? (This was not offered).
     Now that the cycling center is just a few blocks away (for real!) I was able to log many miles on the handcycle and also started going out on my own. Though hills are still a struggle, I can cycle on the flat trail by the bay for four miles.

The Cynphonics!

    October was a awesome month that kicked off with cycling event (the "Rev") in Wine Country where my friend Elizabeth and I rode tandem for over 20 miles and me and my team, The Cynphonics, raised over $5,000 for BORP.  BORP is the organization that not only runs the cycling center but also runs many adaptive sports programs.  Many thanks to all my incredible donors and supporters who made that happen!
A few days after the ride, Trevor and I were able to take a much needed getaway to Yosemite!
A visit from my dad shortly followed, making October one fun filled adventure after another.
As 2012 comes to a close, my focus now is get a J-O-B.  I've kick started a new venture into grant writing and will start volunteering with a few organizations in January to get some experience.  More to follow!
If you would like to see more photos of the ride,click here

Thanks to Scot Goodman who allowed me to use some of his professional photos!

Getting Closer!

StemCells, Inc. Achieves Spinal Cord Injury Milestone With First Neural Stem Cell Transplant Into Patient With Sensory Function Below the Level of Injury

http://www.nasdaq.com/article/stemcells-inc-achieves-spinal-cord-injury-milestone-with-first-neural-stem-cell-transplant-into-p-20120927-00627

In the Blink of an Eye

     Summer is coming to an end; time to update those blog posts.  Within the last week several of the bloggers I follow, who are as remiss as I am about posting, have updated their sites;  I thought I should follow suite.  Being the youngest child of three (and the only girl),  I am constantly scrambling to catch up, and this is no different.
    I openly apologize if this post sounds like an annual holiday letter, but it has been a year and there has been a myriad of change.  Oh forget it, I'm not going to go through my grocery list of changes, so banal -I'm having a brief love affair with my thesaurus so forgive me-, instead I will tell a story (she says chewing her pencil into pulp).
     The last backcountry excursion I took with Trevor before my TM onset was July 2007. We were in the Cascade mountains for four days and we spent our days hiking from our base camp to explore the mountain.  Even though it was July, there were still snow patches to traverse and we hadn’t bought crampons, but we were not concerned and felt well-prepared.  We crossed one such patch in the morning and the snow was firm and we were sure-footed as we continued down to one of many lakes, all alone save for the beasts and one fanatic, yet inspiring, ultra marathoner out for a run with his dogs.  I enjoyed passing through the soft meadow dotted with wildflowers down to the surprising starkness of the lake, but my thoughts would drift with anticipation to our eventual ascent to the top of the mountain where the promise of the yet unseen vista beckoned.
     Hiking back from the lake we discovered that the firm batch of snow we handily crossed was now soft, slippery slush.  This alone would not be a problem but the trail hung narrow on the side of the mountain and to lose our footing would mean a serious and dangerous slide.  We crossed together and it felt like walking on a pile of banana peels, soft and slick. Trevor had a frightful moment as his foot slipped off the trail and (thankfully) landed on his butt.  We managed to navigate safely across, and now had to cross another narrow strip to continue toward the vista or we could  return to base camp.  Trevor, sweaty and out of breath, declined to cross with me. Try as I might I could not persuade him, so I headed over on my own.
    Grabbing two pointed stones I made my way across like a spider, toe jamming into snow followed by stone in hand buried in the snow, securing my place. Once I hit the hard packed soil, I scrambled to the top and caught my breath.  It may not have been one of the highest peaks on earth, but the expanse of the valley floor 8,000 feet below coupled with the adrenaline rushing through my veins and I felt I was in the presence of something greater than myself.  My only sadness was that Trevor was not there to share it with me.  I ambled along the narrow ridge breathing in the thin, clean air and caught a glimpse of another version of myself following that trail onward towards more adventures.  I looked down again, had a moment of vertigo and envisioned myself falling off that mountain. I decided then to turn around and make my way back to Trevor, who was patiently waiting on the other side.           
     There is no doubt that I desperately long to be able to throw my backpack on my back and go wherever the hell I want, but there are still an infinite amount adventures out there for me.  I have been enjoying challenging myself to explore new territory - taking public transportation solo and pursuing new interests and a new career.  But above all- I always have Trevor patiently waiting- that is my greatest treasure.

                               
Researchers find possible breakthrough to relieve pain following spinal cord injury

                                A collaborative research group – led by researchers at Cleveland Clinic – published findings that indicate a one-time injection immediately after spinal cord injury can limit pain for an extended period of time.

                           

Four Years But Whose Counting?

September 27th came and went with little fanfare and nary a thought.  It wasn't even on my radar  until the night before as Trevor and I were driving back from dinner with friends.  I asked Trevor what he thought about this upcoming anniversary.  What came to his mind is how much I have improved over the last few years- that there are so many things that I am able to do for myself now that we didn't even think possible.  Bravo for Trevor's positivity!  I myself felt that slight tinge of mourning I always feel of possibilities lost.  The "what if" portion of my process.  I usually fight this self indulgence, but being the eve of my TM onset anniversary,  I felt certainly justified in this guilty pleasure, and hey, it's less calories than an entire pint of ice cream- which I also felt deserved of.

The amazing thing was that I woke up this September 27th and it didn't cross my mind, not once all day.  I literally forgot all about it until the next day when I realized "hey- that day went by and nothing happened."  I did get one email from a friend on the day after who said she had been thinking about me, but I felt glad that she did not actually contact me the day of.  It just goes to show that life keeps moving forward.

I met a man tonight at yoga class ( yes, my first yoga class in four years!) who commented on my positive attitude of acceptance.  I said that I was accepting of my situation now as I strive to live in the moment, but I will not give up hope for the future and its possibilities of further recovery.

To demonstrate my idea of living in the moment- here is a short photo montage of a recent cycling event I participated in- a truly beautiful day- Cycling Photos

Stepping Out

Well, I did it folks.  No, I'm not walking, though I'm not giving up on miracles yet, whether they are from science or from some  "other source", the big news is that I have made another significant move towards independence.  Yesterday, I went out into the big, wide world all on my own, and you know what? It was exhilarating (and surprisingly easy).  The whole point of me and Trevor moving across the bay to Berkeley became crystal clear as I shut the door behind me, turned the key(with my special adaptive key device) and pushed my power assisted wheelchair down the long hallway, to the elevator and out.. the.. door. Freedom! Say what you want about Mel Gibson, but I felt like that dude in Braveheart as he bellowed out, "they'll never take our freedom!"  So I say to this disability!

My first foray consisted of getting picked up by Paratransit which is a bus system for us disabled folks.  It requires making an advance reservation, but it's door to door transportation for very little cost.  I went to a safe place, this new building call the Ed Roberts Campus that is home to many non-profits focused on disability issues and one organization has yoga classes.  It was my intention to go to a yoga class, but alas, it was cancelled.  Instead I checked out the facilities and enjoyed reading my book and chatting on the phone on the roof deck, shaded by an umbrella as the trees swayed in the breeze.  I was picked up a few hours later and delivered promptly to my doorstep by the driver. Success!

Trevor had at first been a little wary to let me venture forth without a dress rehearsal, but as the saying goes, "Life ain't no dress rehearsal!" In the end, Trevor was encouraging and proud and we celebrated yet another achievement.

So, where do I go from here? I have my laundry list of things to accomplish and as I check things off I will continue to add things on.  I recently read Christopher Reeve's autobiography, Still Me,  and yes, I found myself crying with abandon at many of the passages as he wrote with such honesty.  At the end, he reflects on how painful it is knowing he will never be able to do so many of the physical things he enjoyed doing, so he tries to not to linger on the past, but to "live as fully as possible in the present," no matter how difficult it may be.  Sound words of advice from an inspiring man.

Do I Have To?

My mother recently and gently mentioned that I hadn't posted anything on my blog for quite some time.  Apparently someone actually checked! Well I don't want to disappoint all my readers (Hi Mom!) so I am here to regale you all with an update.  Self-deprecating humor aside- there are reasons why I have avoided the update.  I suppose I feel when I started this blog my progress was much more tangible and dramatic.  When starting from the bottom, everything seems like a tremendous gain.  My progress is much less of the leaps and bounds and more like "where do I go from here?" So there it is- where do I go from here? My goals of walking and being fully functioning in a "normal" body- although still the ultimate dream- have now been replaced with how can I be more independent and go back to work while struggling with fatigue and constant pain?  So you see, these goals are a lot less fun and dramatic.  I don't think a video of me looking through craigslist for a new apartment would be very enticing.  But, I do continue on and am VERY thankful for all that I do have! I do have the most awesome, loving and caring husband. I do have supportive and loving friends and family.  I am so thankful for the gifts that have been given to my recovery fund.  I really cannot imagine my life without the security of knowing I am cared for.  So, to anyone reading this, big hugs and lots of love and light.  THANK YOU!  I will try and write more often. Promise.

Living My Life Like It's Golden

Well, here we are again.  Another season another blog post. Since my last posting, things have been looking up.  A good friend of mine recommended a fantastic acupuncturist and I also have a new home PT whom I am seeing once a week.  I am enjoying the changes I was so fearful of. 
It is hard to believe that it is already July and the summer is in full swing, which in San Francisco means cold and foggy days, brrrrr! But, after hearing the news of triple digits on the East Coast, I think I'll take the fog (Trevor calls the fog nature's air condition). Plus, we can pretty much drive half an hour and be in summer time weather.  Anyway, I will be enjoying (?) the heat and humidity soon enough as I am traveling east in a mere two weeks for a visit to N.J. and also back to Baltimore and Kennedy Krieger.  Baltimore in July, I must be crazy! I am looking forward to my visit and am thankful we are able to pull it off.  I wasn't sure it was going to happen as Trevor got a new job in April and would not be able to take two weeks off this summer, sooo I am going to be traveling without Trevor for the first time since my TM onset.  I'm not quite ready to travel solo, so mom and dad will be flying out to San Francisco for a visit and then I will be traveling back with them and at their mercy for almost two weeks (or is it the other way around).  It's a big step for me and although I feel the butterflies, I am excited to test out my nerves. Trevor will fly out at the end of the trip for a quick visit and then we will travel back together.  Another step towards independence!

Although I haven't had any major gains physically in the past few months- I do feel like I am gaining my life back and exploring what I can do with what I have.  To paraphrase Ferris Bueller, life is too short and I don't want to let it pass me by, so I have been trying new things and challenging myself both mentally and physically.  I am wrapping up an online writing class, a small step towards going back to school and I also started outdoor cycling.  The cycling is incredibly freeing and allows me to enjoy exercise that is fun! The cycling program is run by fantastic center for people with disabilities called B.O.R.P and they have all kinds of bikes to use for a very low fee.  I am slowly working my way up and hope to one day buy my own bike and train for a marathon.  I'm at 2.5 miles an hour right now, ...  it may be a while.  You may be wondering at this point, "gee, I wonder what Cynthia looks like on the bike?" Well, you are in luck because I just happen to have a video. Enjoy! VIDEO
Love and Peace,
Cynthia

Change is good, right?

Spring is a time of change.  It is usually a welcome change from the doldrums of winter.  We all look forward to seeing the new blossoms on the trees and flowers popping up.  In our back garden (kept up by neighbor, friend, and landlord Petra), the calla lilies and forgot-me-knots have taken over and it is quite spectacular.
I have been fervently hoping for change in a few different ways.  The obvious is that I would like to see change physically.  I'm still diligent about physical therapy, but improvements have been difficult to gauge.  Certainly nothing dramatic has happened in many, many months.  Unfortunately, the most obvious change  has been increased pain.  I am not writing that in order to illicit a sympathetic response, I'm just telling it like it is.
The other changes I have been hoping for are things such as Trevor getting a new job, us finding a reasonable priced (yet fabulous) accessible apartment, me becoming more independent and other treatment options becoming available.  These are just a few in a long list, but you get the idea.  Well, Trevor did get a new job (yeah!), but he will be working weekends (boo!).  I wouldn't mind the weekend working thing if I could get out more independently, but those other changes haven't happened yet.  So while I'm trying to get used to the idea of a less freedom from our apartment,  there are other changes happening that I did not wish for.  How dare this happen.  I mean, really!  It seems that other people are busy living their lives as well, which means change for them.  The big three right now are my much beloved home PT Michael has taken a new job that is full time, so no time for me.  He is helping to find a replacement though.  Also, my acupuncturist Laurence is on sabbatical to France for a year.  Another replacement to try and find.  I've been working with both Laurence and Michael since coming home from the hospital over 2 years ago, so replacing them will be difficult, but hopefully not impossible.  The last change saddens me the most.  My dear friend Jennifer is moving to Cincinnati.  She is not replaceable.
Here is the change that I have been desiring, yet I have the blues.  As is often the case in life, the things we have least control over can have the most impact on our lives.  Kind of like a giant meteor.
So I will buck up and try to see the positive.  After all, the saying goes, "April showers bring May flowers".

Swimming with Elvis

2009 got away from me before I was able to recap my last Baltimore experience (with accompanying video, of course). I am going to make this post short and sweet although I have been feeling more introspective as we pass from one year into another. Another time.

As always, it was great to visit with family and friends before heading down to Baltimore for two weeks of some serious physical and mental exertion.

The trip was full of ups and downs, but the general outcome was very positive.

The main let down for me was not having any big "aha!" moments. This by no means implies that the quality of therapy was disappointing. It was excellent as usual! This also does not imply that I didn't work hard. I was there 100% everyday. After 2 years, physical return becomes harder. NOT that it doesn't happen, it just happens in slower increments. That doesn't mean that I don't go to sleep every night believing I may wake up the next morning and jump out of bed!

I was so happy to work with Cyndi as my main therapist again, especially since I was her last client at KKI. She has since moved to Hawaii. (lucky Hawaii).

The new facilities at KKI are astounding- especially the pool. I wish I could use this pool everyday in San Francisco like I did in Baltimore, with their excellent therapists. Sad it doesn't exist here.

Baltimore was great and we were there over Halloween- party time.

Here's a video of my pool experience- you'll get the title of the blog now. VIDEO

Back To "Charm City"

Pardon my much belated blog update. I suppose I should start off by explaining where the heck "Charm City" is. The short story is that back in 1974, some ad man thought up the nickname "Charm City" as a marketing ploy to reinvent Baltimore's image to attract tourism. As Trevor cand I prepare to embark on our fourth visit to the Kennedy Krieger rehab in Baltimore, I have been thinking about how I feel the need to reinvent myself as well.

It's been two years since my TM onset, which is actually quite hard for me to wrap my head around. The first year was such a blur as we scrambled about, trying to figure out how to deal with this new way of living our lives. I'm still surprised and quite incredulous when I find myself unable to do things.

Whose body is this anyway?

I have continued my therapy regime by seeing my home PT, Michael, twice a week, going to outpatient PT with Sonya once a week and I have also added a new element to my recovery at SCI-FIT- an intensive workout, once a week. SCI-FIT is similar to other programs throughout the country, such as Project Walk. Although I have to travel an hour each way for a 2 hour workout, it is totally worth it. The atmosphere is charged with positive energy and they really kick my butt (see video at end).

I continue to get stronger and I don’t think I could ever give up on that. I have been thinking about what my next steps are, so to speak. I would like to go back to work, so I am taking this opportunity to decide what I want to be when I grow up. Perhaps I’ll go back to school. I’m not sure yet what the future holds, but I am looking forward to whatever it is.

I still remain positive about my recovery, but as time passes on and I learn about how the spinal cord and nerves heal, I realize that my body will probably need some help from the medical community to get back to a fully functional state. There are new discoveries being made at a more rapid pace. All I can say at this point is "gooooooo science!!".

Back to Baltimore. Kennedy Krieger recently opened a new state of the art facility and I am excited to check it out! I am starting a two week stint there on Oct. 19th. It may be a bit longer before we are able to go back to Baltimore, so I am really thankful we have this opportunity to go now. I am also incredibly grateful, knowing this could not be a reality without all of the generous support we continue to receive; in fact, the majority of my therapy would not be a reality without it.

Speaking of therapy- here is a video of me at SCI-FIT (Trevor picked the background music) http://www.youtube.com/watch?v=9xLhq99Kl7w

Onwards and upwards! Downwards and sideways?

This past week and a half was a full roller coaster of events therapy wise.  Friday, May 29th, at CPMC I arrived and Sonya had decided that I was ready to use the walker without the extra arm supports.  Ummm, ok, sure, why not? Needless to say I was fairly skeptical, but I trust Sonya fully, so we gave it a go.  Unbelievably, we were able to do it.  It was challenging and it took the help of three people instead of the usual two, but I was stoked. :-)

Monday I went back, and this time it was just me, Sonya and Charlene, and I have to say, it was awesome.  I felt so connected and strong and with their help, walked over 100 feet in three attempts.  AMAZING! On Tuesday, I was at the pool with Michael.  With him and Trevor beside me, I walked in three feet of water.  WOW!  Michael said I definitely took a jump healing wise.   

I was very excited about this turn of events and had visions of continuing on this trajectory.  I arrived in therapy on Wednesday ready for another incredible session... or not.  Turns out my body had other plans.  For some reason that I, nor my therapists, can understand,  what I could do that day was a pale comparison to what I did just two days before.  Everything was so much harder and I had to stop several times, barely going a few feet each time.  Why o why?  Not to be defeated, I chalked it up lack of sleep and overexertion.  My session at home with Michael the next day was fair and we discussed possible reasons for it.  O.k.,  I'll rest.   After a easy weekend of just doing the bike and standing frame, I was ready to show my stuff on the walker Monday.  The beginning was good and I felt strong and then five minutes later, fizzle.

(insert favorite swear word here)!  I have to say, I felt defeated.  Again, saw Michael the next day and felt a bit stronger and he soothed my ruffled feathers.  I haven't used the walker again yet, but will try again next week.  I know what I did that Monday will come back again and that I won't be doing it alone (literally and figuratively).  For all you faithful readers- here is a taste of what I did on Monday (and there is not a soundtrack).  http://www.youtube.com/watch?v=pcmIhRv46Z4

Video Update

Here are a few video highlights from spring training in Baltimore. I'm learning how to use the iMovie program, which has been very fun though I'm not quite ready for the Oscars yet. The video is about three minutes long.

Springtime In Baltimore

Our trip to NJ and Baltimore this March was fantastic. Not only did we get to see and spend quality time with family and friends, but we had another productive visit to Kennedy Krieger.

This our third visit to KKI, and we continue to be thrilled with the awesome therapists and professional program. It was three weeks of intensive therapy-four hours a day. This time in Physical Therapy we really focused on the lite gait program, sit-to-stands and lots and lots of core work (yay sit ups!). Occupational Therapy was all about the hands. We worked on fine motor skills for the left and using electrical stimulation to wake up those muscle on the right hand.

Function wise, the right side in general is still lagging behind the left, but making small, yet significant gains. The last day at KKI, I used a special walker and walked 60 feet with my therapists! Very cool. Yes, I have video and am working on making on a fun montage of the trip. Coming Soon!
I continue my work in San Francisco with my fabulous home therapist Michael and Sonya at CPMC.

A Breakthrough!

I recently started going back to outpatient therapy at CPMC, thanks to a new year beginning and insurance starting over. So in addition to my three days of home therapy with Michael, I am now at the CPMC gym twice a week for 45 minutes. Sonya, my CPMC therapist, is terrific! Not only has she been a PT for 20 years, but she is also a 5th degree Black Belt and is the head instructor at a local martial arts facility, so she brings a certain disciplined, yet fun, aspect to  therapy. My last session on Friday, we decided to try walking at the parallel bars, something tried once before without much success. Well, we gave it a shot and boy, did it work out. It's difficult to describe what the actual procedure entails, but let me just say it what was QUITE exhilarating! I felt euphoric. Me and the therapists were all pretty pumped, my only sadness was that Trevor was not there to see it. BUT, it will happen again and this time there will be videotape.  I was able to walk the length of the bars- about 10 feet- with assistance. We did this at least 10 times and even backwards a few times- my own version of the moonwalk. All the hard work is truly paying off and I am excited to bring this progress to Kennedy Krieger in a few short weeks!

Here is a link to the video... Walking At Parallel Bars

Video from KKI Sept 08

KKI Fall 2008

Me and my crew of excellent therapists at Kennedy Krieger from the September 2008 visit. We look forward to our visit in the spring! Just a few short months away.

Hope

hope is a word that has been somewhat overused as of late, but is not a word to be taken lightly. i started to think about hope after my friend laurie left me a message saying she had been outside the other night thinking of me and praying to see a shooting star so she could make a wish- as she has done many other nights before. as she was praying a star shot across the sky and she was so excited she almost forgot to say her wish- but she did. in her message to me she stated that she could not tell me what her wish was (as we all know, it would not come true), but she wanted to let me know that this had happened. while listening to her message i started to cry as her voice was so full of hope and in turn it filled me with hope. her hope is that her wish comes true. my hope is that her wish comes true.

August Update

It is difficult to believe that August is almost over and that we leave for Baltimore and Kennedy Krieger in 10 days! August has been full of visitors, trials and triumphs. Michael, my main therapist with whom I work with 6 hours a week, was away for 3 weeks. Although I still had a few PT sessions at the hospital with my therapist, Sonja and did some therapies at home with mom and Trevor, my body and mind really missed the extra hours of physical activity. Needless to say, Michael is back and I am thrilled. I had my first pool session in a month yesterday and showed much improvement by standing for longer periods of time and walking for longer distances. I'm also getting a lot of core strength back, which is more difficult to quantify, at least for me. I mostly take Michael's word for it.
A significant triumph is that I've been able to move my left leg without any assistance while using the lite gait walking machine.
On another note, the Pereyra family has two new additions to the clan, Asher Caden and Conor Thomas- congrats to Ken and Lori, Tom and Julie!!

Update July 29

It's been awhile since the last update, so I will concentrate on the highlights of the last few months since the last update.
Friends and family have been working hard organizing fundraisers to help us with medical expenses. These events have been amazingly successful and Trevor and I are in constant awe at the generous outpouring of time and money. The inspiration this has given me to push myself to recover is incalculable. I feel like I have all these investors!
Triumphs:
-We have returned the hospital bed!! I am so thrilled about this. I now can sleep in my own bed with no issues.
-I am now able to do my own transfers in and out of a car using a special transfer board. Another step towards independence and less work for Trevor.
-My overall strength continues to improve, especially my core strength, essential for standing and walking.
-I am now walking 25 minutes with lite gait machine and three therapists and have taken a few steps in the pool with minimal assistance.
-I have an actual triceps muscle in my left arm! Also, the left hand continues to show improvement. The right hand and arm continue to lag behind, but I am confident they will catch up.

We are planning our second trip to the International Spinal Cord Center at Kennedy Krieger in September.
We will be there for three weeks and are very excited for the outcomes.

Both my mom and Trevor's sister-in-law, Samantha Noonan, are visiting separately in August. We look forward to seeing them and also to have the extra help to give Trevor some much needed respite.

It's obvious I am the tortoise, not the hare, in this race. But, we all know the moral of that story!

Therapy Photos

June Fundraiser in West Orange

Update from Cynthia May 15

Hello- Just wanted to post the latest news on what is going on.
Triumphs:
I am now able to transfer myself from the chair to the bed and back with a slideboard 100% on my own! This means , among other things, that Trevor does not need to be here when I schedule acupuncture, massage and cranial sacral therapy appointments. I can also transfer myself to the sofa w/o a slideboard and am working on the return- it is uphill so more of a challenge.

I am now able to basically do my own dressing, everything except my supertight stockings and anything with hooks and snaps elude my not so nimble fingers. But the rest, the rest I can do!

Working with my at home therapist, Michael, three times a week now (bi-weekly at the pool). One of the goals we have been working on is getting myself up from the floor to the sofa and then to the chair. I'm hoping I will have this goal met in 4-6 weeks. We bought a big floor mat so that the floor work is easier and more fun. Hard wood floors aren't very therapeutic. :-) At the pool I have been able to paddle around on my back wearing a flotation device and using my arms and left leg (right leg still a bit slow to the game). The fact that I can hold myself up demonstrates a lot of core strength.

In my out atient therapy appointments we have begun using the lite gait machine over a treadmill- very exciting. Of course we started this and then insurance ran out... BUT

Finally heard back from insurance and... they approved 24 more therapy appoinments to be used within the next twelve weeks at CPMC (where I currently go for outpatient therapy). This is a great start, but I am hoping for more because...

We booked our next trip to Kennedy Krieger in Baltimore starting Sept. 8th for 3 weeks! A big trip for us in many ways. KK is really one of THE best spinal cord injury rehab facilities and we truly believe that 3 weeks of therapy there is equal to 3 months of therapy elsewhere. We will be going regardless of insurance approval.

With this in mind, my dear friends on the east coast have been starting to work on fundraising ideas. Dana and Laurie have some great ideas and would love to share them with other east coasters. If you would like to hear more about what they are doing, please email Dana at danauhler@yahoo.com.

Trevor's doing well- still being the super husband! I did hire someone to come in once a week to help around the house. A handyman/housekeeper, etc... who is just a wonderful, sweet guy. This should help.

I'll end with a "This can only happen in a wheelchair" story. Trevor and I were on our way to a therapy appointment a few weeks ago. Since we had the time, we decided to take public transportation, even though it requires two different buses. We get on the first bus-it's a brand new bus and we discover that we can lock my new wheelchair wheels in much easier than the old buses- isn't this great. Our stop comes up and since this is a new type of lock, Trevor is unsure how to release it. "press down on the lever" the driver advises. Trevor does, it doesn't work. So he does it again and then the steps on it- SNAP! - the lever breaks. Now we are stuck on the bus with the wheel lock broken. All the other passengers have to get off and the driver calls the fire dept. Oy vey! The fire dept. arrives in about 10min (not too bad) and pries the lock open- I'm free!! AND we still make the appt. Oh, we find out to release the wheel, one needs to lift UP on the lever. Well, now we know.

Love you all! Couldn't do this without you!

Cynthia

Happy Thanksgiving from Trevor and Cynthia

Hello Everybody,Greetings from the California Pacific Medical Center Davies Campus. Cynthia and I cannot begin to thank you all for the kindess and extraordinary support we have received during this challenging period.

Happy Thanksgiving, Love Cynthia and Trevor

LIVERPOOL LIL'S FUNDRAISER

Trevor has worked at Liverpool Lil's for 10 years serving drinks. Lil's is generously hosting a fund raiser for Trevor and Cynthia on Saturday, December 8th from 12-5. If you are local please stop by the bar and show your support. You can buy raffle tickets there to win restaurant gift certificates, wine, and other prizes. The proceeds from food, beverage and raffle sales will be donated to the Noonan family.

Lil's is online at www.liverpoollils.com and the bar is physically located at 2942 Lyon @ Lombard in San Francisco, CA. 415.921.6664

See you there!

Brian