Monday, December 23, 2013
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
Monday, December 9, 2013
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!
Wednesday, October 9, 2013
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.
Sunday, July 7, 2013
Sunday, June 30, 2013
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!
Wednesday, June 26, 2013
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!
Tuesday, April 30, 2013
Saturday, January 5, 2013
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.
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!
Sunday, September 30, 2012
StemCells, Inc. Achieves Spinal Cord Injury Milestone With First Neural Stem Cell Transplant Into Patient With Sensory Function Below the Level of Injuryhttp://www.nasdaq.com/article/stemcells-inc-achieves-spinal-cord-injury-milestone-with-first-neural-stem-cell-transplant-into-p-20120927-00627
Saturday, August 25, 2012
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.
Thursday, December 1, 2011
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.
Thursday, September 29, 2011
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
Thursday, August 25, 2011
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.
Sunday, April 3, 2011
Thursday, July 8, 2010
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,
Sunday, April 4, 2010
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".
Thursday, December 17, 2009
Saturday, October 10, 2009
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
Wednesday, June 3, 2009
Monday, May 18, 2009
Wednesday, April 22, 2009
I continue my work in San Francisco with my fabulous home therapist Michael and Sonya at CPMC.
Sunday, February 22, 2009
Thursday, February 19, 2009
Monday, January 5, 2009
Wednesday, December 17, 2008
Wednesday, August 27, 2008
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!!
Wednesday, July 30, 2008
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!
-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!
Thursday, May 15, 2008
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 firstname.lastname@example.org.
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!
Wednesday, November 21, 2007
Happy Thanksgiving, Love Cynthia and Trevor
Sunday, November 11, 2007
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!