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