Speaking Up

In August of 2016, I opted to have a Baclofen pump implanted  in my abdomen. It was my hope that the pump would help reduce the spasticity in my affected leg allowing me to run again. Of course my decision was based on more than just running. I wanted to be able to keep up with my boys, be less conscious of how I walk and gain the confidence I had lost.  I understood that the pump is only a tool, and I would need to put in the work to reach my goals.  And I was and am willing to put in the work.  I stretched, exercised and stretched some more. I am putting in the effort to rewire my brain to recognize that my foot is actually a part of my body.

One year and two months later,  I have not seen much success from the pump.  I  noticed small changes like my foot no longer curls up allowing me to wear sandals again (yay!), my foot now lifts completely from the ground allowing for a much easier heel to toe movement. Although it still happens once in a while, my leg no longer swings out from my hip when I walk. Otherwise, the spasticity is still high which results in  my leg still feeling like it is 50 pounds heavier than the rest of my body, my knee still does not bend when i walk giving me a very awkward gait and poor balance. 

One might think that running is simply putting one foot in front of the other in a faster pace than walking.HA! The biomechanics of running is complicated so I will not even try to explain, but let the experts educate you.  

All my life I have been conditioned to listen to my doctor and to follow orders without question.  After all, doctors know everything, right? Naah.

My email to my doctor got an auto “out of office reply” so I am waiting for him to get back so I could discuss my issue with the pump.  I have been warned that the tone in my leg might be what is holding me up.  Hence, the hesitation to raise the dose.  I have told the doctor that I feel it is much easier to work with no tone, than too much tone. I’ve not tested this theory, but i am willing to try if I am given the chance.  I am willing to take the chance. So, bring it on!

I understand doctors are cautious, I understand there are protocols to follow but I know my body. I know how far and how hard I can push myself.  

The New York City Marathon is happening next weekend. NYCM is my bucket list race and it was my goal to run the 26.2 miles this year. I have not given up.

I may have overestimated the “power” of the ITB pump, but I do know that I had put in the work. And I am willing to put in more. 

Much love,

Momma Berna

 

 

My Year of Running Virtually

I have been an ambassador for a local running club three years in a row.  Represent Running is a group which promotes running locally, meeting and running with awesome people and promoting 3 Bay Area races in three different, but equally beautiful cities: San Jose (408k), San Francisco (415k) & the East Bay (510k).  Each race highlights the beauty and culture of the city it is representing. My job as an ambassador is to promote the races, spread running joy  and discounts on social media. In the past years, I have been able to  to run/walk the races “live” meaning I am there at the event toeing the start line along with everyone. Unfortunately for this year, I was sidelined for all three of the races! I had to run the races virtually – This type of virtual running does not involve virtual reality glasses while sat on the couch. 

The 408k ( 8k-4.9 miles) is my favorite local race. After all it represents San Jose, runs through downtown and local neighborhoods. Accentuated by the Mariachi mile at around the 4 mile mark. The finish is at the tony Santana Row where area restaurants lure in finishers with bottomless mimosas. The week of the race I was struggling with vertigo. Staying on my feet made me incredibly nauseous.  I was hoping the symptoms would go away that weekend. Vincent & I picked up my bib at Santa Row.  We walked the Row for a bit, but after a couple of stores I thought I was going to hurl on an overpriced shawl (tbh, I probably felt sick about the price too). I was feeling optimistic so I got my race gear ready, set my alarm and went to bed early with hopes that I would be able to stay on my feet next day.  Unfortunately, when i got up on race morning, I felt like I just came off a triple loop roller coaster instead of my comfy bed. 

The 415K is the San Francisco installment of this race series. The backdrop of this race is the Golden Gate bridge. The 12k takes runners across the bridge and the 5k runs along the Pacific Ocean. The weekend this race was on, the Bay Area was experiencing a heat wave. My silly, dumbass self thought it was a good idea to walk a couple of laps at the Relay for Life for our city.  The day of the race, I woke up with excruciating neuropathy on my foot. It felt like I was walking on hot coals.

 The 510k was the final installment of the Run the Bay series, this one is set in the East Bay.  I missed that one too, I was scheduled for cranial angiogram the next day and my anxiety was running high. 

The virtual race:

 For those uninitiated, a virtual race is where one signs up for a specific race, for a distance specified by the race but instead of joining the hundreds of people on race day, one would set their own date & location. I find running a virtual race challenging.  There are no cheering crowds, no aid stations, be no cheery faced volunteer handing me my medal at the finish line. Instead, the medal arrives in the mail and the only race photos are selfies (at least they’re free!).

A virtual runner’s aid station.

The race becomes a battle in my own head. I have to fight the voice that tells me it’s time to quit, the voice that says I don’t need to put myself through this. I could just stop no one is watching. 

I am quite fortunate that I only had to run one of these virtual races alone.  My long time friend and partner in insanity Tammy has joined me in most of my virtual races.

408k Virtual at Shoreline in Mountain View,CA

Writing this makes me sad. I am realizing that I have been experiencing setback after setback. I have not reached goals that I have been working hard for. I thought I would have been further along in my recovery.  Instead, I gave up on a 10k earlier this year. I have two more 5ks coming up before the end of the year and I really would like to do them live. 

As much as I love being an ambassador for Represent Running, I am debating if I will apply to be in next year’s team.  I do not feel that I am representing if I am not running.

 The connections between my brain and leg have not yet established my need to run. I still have to constantly remind my legs I am running. Otherwise,  I will start walking . This constant dialogue is mentally and emotionally exhausting.  

I long to run with my friends again. I want to be an active part of a running community. I will continue to work hard to get my running legs back and to get my body and mind stronger.

Much Love, 

Momma Berna

To know Me is to Understand Me

I am sure you are all familiar with “knowledge is power”.  It is a well-worn adage thrown around as part of valedictorian speeches & candidate statements during campaign season.  Commuters have been enlightened by the phrase through bumper stickers for ages.

We expect professionals to be knowledgeable in their fields. Heck we expect them to be downright geniuses at their chosen profession. This is especially true for our medical providers.

Thankfully, most of the medical professionals I have met are very knowledgeable.  They have a very good grasp of issues related to strokes & their treatment.

Knowledge is gained through education & experience. Keeping up to date with the latest information, research & constant study helps expand knowledge in their chosen field.

But just because doctors know what they are treating, does that mean they understand their patients?  

Knowing how medications work, how our bodies are supposed to work and how those meds affect our body, are great qualifications, but for me it isn’t enough. 

As knowledgeable as my doctors and therapists are, I certainly would be appreciative if they also understand me as a person. Understanding is acquired on a deeper, psychological and personal level. I would like to be treated beyond being just a  diagnosis and medical record number.  I want this because if someone understands who I am and what my goals are, we could together forge clearer path to reaching that goal.

I met with a new physical therapist recently. As we enter her office, before I even sat down her first words to me were “You know, it has been 3 years, you should not expect too much progress right?” I slowly sat down, took a deep breath and worked on not crying my eyes out. I told her “ I will run again”. To which she replied “you could always try the paralympics”.  Her words hurt and hit me hard.  Not that paralympics  is a bad thing, but up until that moment the thought of being a paralympian has never crossed my mind. I was and is still convinced that I will regain my “normal” running legs. I wish she had taken the time to speak to me first, get to know who I am and talk to me about my goals before she abruptly told me about the paralympics. It would also have appreciated a little more information about the paralympics before she sprung it on me. 

The psychologist  I saw pretty much said the same thing. She gave me the “you’ve plateaued” speech.  I made an appointment with this psychologist because I wanted to talk about my frustrations and anxieties about my recovery. The first thing I told her was “I don’t want anymore meds.” She went through her list of questions, I opened up a bit. Then she says “I’m going to set up an appointment with one of our psychiatrist, he can talk to you about maybe adding more medications or increasing your dose. I met with her wanting to have someone i could objectively speak to  regarding my fears, anxieties & frustrations about my recovery.  I did not want  someone who will medicate me to numbness.  She continued to insist on medications. I did not make a return appointment.

Hospital staff & medical professionals are short on time. They are under pressure to get patients in & out of the clinic in order to serve more people.  But taking a few minutes to ask questions, looking beyond a medical record would mean so much to the patient who you will see on a regular basis. Be a person we can trust to not judge our deficiencies and dismiss our goals. Be one who is willing to help us reach those goals. If the goals are unrealistic, please meet us in the middle and help us to get there. Stroke survivors fight daily to overcome our deficits. Although, we have support from our family and friends It really helps to have our medical professionals understand us so that all of our bases are covered.  Healing and recovery goes on much smoothly if we are well supported.

What would you want your doctors or therapists to understand about you?

Do you feel that you are able to talk to your medical team and express your needs & goals?

P.S I have been seeing the same PT, we’ve had a couple of sessions since that fateful first meeting. I believe I have shown her what I am capable of achieving. Her & I are now working hard to get me back to running!

 

Do You Have the Time?

Let’s talk about doctor’s appointments. No one ever really looks forward to them, they take up a lot of time and we don’t usually get the best news from a doctor’s office ( don’t eat that, lose this, start doing that).  So when we head to an appointment, we already some anxiety building up.

Earlier this week, I had an appointment with the Physical Rehab & Medicine doctor. My husband and I left the house one hour before the appointment which was 11 miles away. But this is the Bay Area and the traffic is a nasty bitch.  Even with the extra time, we were going to be late.  I called the office to let them know. The person I spoke with asked how late will we be, I said about ten minutes. She replied “Oh okay, that’s fine. If it’s fifteen minutes, we will have to reschedule”.  We made it and were only five minutes late! Yay! I checked in & was informed that the doctor was running 20 minutes late! Half an hour later, they called me in. As soon as I stepped into the exam room, I was once again told “the doctor will be right with you, he is with another patient.” Really ? Really? I called to tell them we were running late, they couldn’t have told me “ oh that’s ok, take your time. Tell you what, stop by and grab a coffee. “ Instead, I was sat in the exam room for another 25 minutes. I had done some complaining on Facebook and the only magazine in the room was a year old copy of Arthritis Monthly. It was a bad time for me to leave my Kindle at home.  I was scheduled for an adjustment of my Baclofen pump and Botox for my arm.  The doctor arrived, apologetic. He apologized for being late and he apologized for not having the adjustment machine! There is only one for the Santa Clara area. Hey, I know medical equipment can be expensive, but this is a big hospital system!

I  got Botox shots for my wrist & hand. I have to choose where I think it would be most helpful as I can only get so much Botox at a time.  The Botox is only effective for three months, so in those three months I have to work, work, work my hand! See, all these treatments are temporary. The hard work of re-wiring is all up to me.

I made another appointment for the adjustment,  keeping my fingers crossed they will have the machine that day. Getting to appointments is still complicated as I am not driving yet. The doctor wants to do another assessment.

Thank you for reading through my rant. I know it is WAY too much to expect to get a courtesy call from doctor’s offices to let their patients know that they are running late or them to consider that our time is valuable too. 

Have you had an experience similar to mine?

Does your clinic or doctor give you a courtesy call if they are running late?

Much Love, 

Momma Berna

I Didn’t Hit a Wall, I Straight Up Ran Head First Into It.

The Brazen Western Pacific race was my first ever 10k back in 2013.  I planned on making this year’s race as my first post stroke 10k. I trained, I was pumped and I was ready. I asked my son Vincent to run this race with me.

I had trained, I walked around the neighborhood, walking up the hill and even attempting runs around the city track. Tuesday before the race, I walked/run 4 miles and I still felt good afterwards.

So hopeful at the start line.
My favorite oldest son.

 I posted my flat runner on social media and admitted I was a bit nervous for the following day. I was excited to do this race with Vincent. My plan was to have him run the 10k, finish get his medal and then have him wait for me at the last mile. He said “No, I want to stay and walk with you”. He gave me a boost of confidence!  So we line up at the start, took the obligatory start line selfies and off we went! I decided to run intervals for this race. I did not use this method while training, but I figured it wasn’t going to make a lot of difference since while training, I run/walk anyway. I set my Garmin for a 2 min run 1 min walk. Vincent was goofing around (it’s nice to be at the back of the pack coz we had the trail to ourselves!) doing walking lunges during the walk phase on the intervals. Of course that didn’t last very long. Ha!

Cross Training?

We kept up with the 2:1 intervals. It was 9:30 and it was already getting warm!  I had lots of water in my pack so I wasn’t worried. Vincent & I were chatting and having a nice time. After the two mile mark, a very nice woman stopped me and told me how inspired she was to see me out there. She’s also had her share of health issues and she started crying, which of course set me off crying too!  She ran the 10k and was on her last mile. She told me “no matter how long it takes you to finish, the important thing is that you finish!” I had her words in my head for the rest of the race. I had to finish.

My son was very impressed with the kindness and encouragement of the runners. He asked me how I knew all these people, I told him I didn’t know them,  runners are just nice like that!

As we approach the turn around for  the 10k, my leg started spazzing out. When my affected left leg spasms, it will kick out uncontrollably.  I had to stop, stretch out a bit then continue. As with all Brazen races, the aid station was stocked with all kinds of goodies. Orange slices, candy, pretzels everything a runner needs to fuel up. I helped myself to some oranges hoping to get my energy level up again. We headed back. Vincent was getting very worried as I was  leaning onto him while walking. I was determined to finish. A few runners were stopping to ask if I needed pain relief, others asked if they could get a course monitor to get help. I really must be looking pretty bad. I urged Vincent to keep walking. I was slowing down, but I wanted to finish. We were at 4.20 mi! (yes, my kid thought it would be funny to take a pic of my Garmin at 4.20)

4:20, runner, distance
Somehow this is funny!

 I keep trying to convince him to continue we were so close!  Mind over matter right? Focus on the finish! One step at a time.  I had filled my mind with positive self talk (they didn’t work). I kept moving. I was willing my leg to move. I was literally talking  to my leg out loud “swing, land on heel, roll to toe.”  Since I was using my right to compensate for my left, I started having shooting pains going up my right leg.  Vincent was clearly worried. It was nearing 11:30 am and the sun was beating down on us. Many of the runners could tell I was in trouble. Vincent had already asked one of the returning runners to let people the next aid station know that we neeeded help (despite my protests).

At this point, the lines of communication between my leg and brain have completely stopped. My foot was rolling over at every step, my leg was frozen and i was completely hunched over to my right. As hard as it was, it was time to admit defeat.  A runner helped my son walk me to the bench. It was clear that walking was not happening. As we sat waiting for help to arrive, I was still contemplating the last mile. It was so close. I tried standing up, but Vincent held me back. I saw relief on Vincent’s face when the ranger’s truck finally pulled up and he had the a/c on at full blast.

As we were nearing the finish area I could hear Sam (the Brazen race coordinator)calling out the names of the finishers, the audience cheering and I could see the happy, triumphant faces of the runners. I was devastated. I had let myself down, my brain worked against me. I so wanted this to be a victory, not just for me but for other stroke survivors as well. I wanted my family & friends to be proud of me. I feel that I had let a lot of people down. The exhaustion that I felt from the race, did not measure up to the sadness, pain and disappointment I felt inside.

Now that a few days have passed since the race, I’ve had some time to think about what happened. Although I didn’t finish the race, I still tried my best. I am grateful to have a 19 year old son who still likes to hang out with his crazy momma. He and I got to witness the kindness of other runners who were willing to help and lend support when we were in need.

I have also received so many positive feedback and support from my family and friends. Am I still sad about this? Yes, I definitely am. I am also still experiencing pain in my hip and shoulder. My brain is still a bit foggy. Neuro fatigue takes a bit longer to recover from.

I am sad and disappointed. But I’m in no way stopping! I might lick my wounds for a few days, rest up the old noggin and come up with a better training plan. There will be another race, another 10k and I will come back!

Thank you, thank you to everyone who slowed down, stopped and offered encouragement, Advil, Bio-freeze and Gu. i know those few seconds mattered in terms of a PR.

I would like to give a special shout out to  my son Vincent for putting up with me. We had nice conversations and talked about anything under the sun.  He knew I wanted to finish the race, so he tried his best to give me emotional boosts and physical support. He was propping me up, urging me to keep walking. But it came to a point where he knew it was time to just stop. In his gut, he knew I could be in danger. I am grateful to him for looking out for me.

sons, family,love,stroke survivor mom
Vincent was my hero for the day.

 

 

Much love,

Momma Berna

P.S. I was able to connect with the runner I spoke with on the trail. Thank you social media! She is one brave, inspirational woman! This is her Facebook page: https://www.facebook.com/lifeinthedayofarunner

 

 

 

 

Great Expectations: An Update on My Baclofen Pump

So, it has been 6 months since I had the Baclofen Pump surgically installed inside my body.  Yup, had my stomach cut up, and a foreign device inserted to get medicine pumped directly into my spinal column to get my stroke affected leg to move somewhat normally again.  This quite invasive surgery had set me up with  great expectations. I had that scene from Forrest Gump in my head. You know, the part where Forrest was running  from a pack of bullies, Jenny cheering him on with “run, Forrest, run!!!” His leg braces flying off  and he takes off! Yup, I envisioned myself running as soon as I got out of the hospital. Reality hit me smack in the face.  My leg still felt like it was 20 pounds heavier than the rest of my body. I noticed some improvement. I felt my knee bending, my leg felt lighter ( 20 lbs is better than 30 right?), but running is still proving to be difficult. My foot is still curling in too.  I am able to walk faster, and have even tried jogging.   I use the term jogging very loosely. My walk is much faster than my jog 🙂 My doctor and I are still working out the kinks. Still trying to figure out the correct therapeutic dose. Too much and my leg will turn to spaghetti, too little and the implant will be pointless.

In late November, when the pump was refilled the Doctor changed the concentration of the medicine. It is now heavier which means I only need a smaller dose (theoretically).  He told me that it will take a few days for me to feel the difference. Unfortunately, I did feel a difference. But it was for the worse. My leg has

Further proof that I am dragging my foot. I am collecting dog hair as I go.

returned to  pre pump status. My leg feels so much heavier and my friends and family are noticing that I am dragging my foot again and my knee is not bending.  The nerve pain on my thigh also returned. Unfortunately, The nerve pain has also been really bad on my shoulder. I have been stuck in an insurance limbo this past December, so I am unable to call my doctor for advice and assistance. Read about that mess  here:

I am sad that the pump is not working out as quickly as I expected. I would be really angry if it does not work at all. I am still putting on the work: walking regularly, going to the gym, stretching and strengthening not only my leg, but my body.

I am broken hearted. I had that huge goal of running the NYC marathon in 2017. A wise friend advised me to take a step back, analyze my goals and slow my roll.  Perhaps, I will start with actually running first. No matter how slow, I will get myself to run again. I need to build my endurance. I need to start training. I need to set short term goals. I know for sure that I will do the 408k in March.  I would like to actually run that race. And not take two hours to finish.

As hard as it is, I have to put aside my NYC marathon goal for now. FOR NOW! I will revisit this in a couple of years.

Getting the pump refilled.
Getting the pump refilled.

What do you do when you experience a set back?

Much Love,

Momma Berna

East Bay 510

The East Bay 510k was the final race of this year’s Run the Bay series.  As usual, it was a well organized, well supported event.  I’ll start with the free parking close to the finish line and the busses to the start line. That was totally rad! Parking has always been a major stress factor for me during races. So having this perk was very much appreciated.

I love the shout out from the start line, it truly made me feel special.  The new course was lovely! it was mostly flat and the waterfront view was very pretty. The kayakers gracefully gliding on the water were interesting to watch. Running through the park which was a nice break from the usual blah views of road races.

This was the first race that I had done in two years where I did not have to hold anyones hand or had to  use a cane. I can say that I walked this race all by myself! I have to admit that I didn’t think I was able to finish. I was just not ready!  I had spent most of my summer exercising in the pool.  Then I had to sit out 7 weeks after I had surgery for the Baclofen implant.  And it was warm at 8AM in October!! I was exhausted and disappointed. I thought that my leg would be more cooperative specially after the surgery. It was supposed to make my leg looser, but I have not felt much of a difference. Hopefully a few more tweaks to the amount of medication will do the trick.  I was relieved to reach the finish line.

I was feeling sentimental about this race. As I had mentioned, this was the last of the Run the Bay Series for the year. I had so much fun being an ambassador for this series. Represent Running was a great group to be a part of.  I do hope that they will the program again next year.

 

Much Love,

Momma Berna

Ha! Not sure if this was about me or the weather!
Ha! Not sure if this was about me or the weather!

 

A part of the waterfront course.
A part of the waterfront course.

Pump Me Up

A few weeks ago, I underwent a trial to see if I was a candidate for a  Baclofen pump As the results were positive, I elected to ahead and go through with the surgery. The doctors told me, that there was going to be a two to three month wait to get something scheduled. I was eager, but was not bothered by the wait time. I was going to use that time to work-out, strengthen my core and just get stronger all over, After all, I  will not be able to exercise the way I am used to for 7 weeks after the surgery and there will be no pool exercises till the incision heals (one month).

i will miss Aqua Zumba!
I will miss Aqua Zumba!

One week after the trial, the doctor called and told me that there is an available time on August 25th, a mere three weeks after the trial! I think I mumbled something that goes ” Like, this August? In like two weeks?.” The doctor replied that I can have the rest of the day to think about it and to let him know the next day what my answer would be. I panicked a little, thinking I let go of an opportunity. I talked things over with Armando and we both agreed to give it a go.

The day of the surgery came, we check-in and get settled into the pre-op room. As soon as I get into my hospital gown, the nurse told me that the surgery time was moved forward, The surgery in front of me got cancelled.

I look too happy for someone who is about to go under the knife. The drugs must be working already.
I look too happy for someone who is about to go under the knife. The drugs must be working already.

Waking up, I am now officially battery operated. The battery would last seven years, but I would need a “top off” every few months.

To be honest, I expected to “run”  out of the hospital. I didn’t expect the pain that I was going to be in.  I knew going in that I will be given the smallest dose to start with but it was still disappointing that the result is not instantaneous. It was like opening a much desired Christmas present, but the major parts are still missing. The medicine will be slowly adjusted until it reaches the best therapeutic dose. I now need to work much harder as I have been given a major tool for recovery. I do have to take it easy for a few weeks to let the “equipment” settle into my body. This next few weeks I am only allowed to walk, lift no more than 5 lbs, no twisting and no reaching up, no sit-ups and no jumping. Yikes! I really have to watch what I eat to stay healthy.I will be seeing my physical therapist soon, so I will work with her on safe and effective workouts.

One of the nurses asked me what my plans are now that I have the implant. I had only told my close friends and family this goal:, I plan on running the NYC Marathon in 2017. I will enter the lottery in January, and if I do not get picked through the lottery, I will enter as a fund-raiser.  I heard a saying once (not really 100% sure of the words) that goes “If you let your intentions known,the universe will conspire to make it happen” So here you go universe I have set forth my intention: I will run 26.2 miles of NYC!

Much Love,

MommaBerna

What Happens Next?

I had done the five day ITB Pump trial.  I can say that the results were amazing! For a couple of days, I was able to feel how to walk “almost” normally again.

  • I “checked in” on Monday. After getting out of my street clothes and changing into the standard issue uber sexy hospital gown and settling into my room, the nurse took vitals and I set to wait for the doctors.  The doctors came in and gave me a rundown of what was going to happen the next five days (We were in constant phone contact prior to this day, so this was just a review).
  • The doctors then prepped my back for the insertion of the catheter which will infuse Baclofen directly to my spine. They start with  a super low dose. After the insertion, I am to lay flat on my back for 6-8 hours to allow the insertion site to heal. Otherwise, I run the risk of getting a spinal headache. Which according to  the doctors, is the worse headache one could ever experience. I was not even allowed to bend my legs. Apparently, I did not follow this direction to a T coz I got a headache that kicked my ass the next day. I wanted to do a test walk, so I lied and told the Dr. I was fine.
  • The first day at a low dose, I already felt a difference! My steps felt lighter and my foot was not curling in. The doctor and I walked a couple of times around the floor. My headache was getting worse, so we had to stop. And once again I had to lay completely flat on my back for a few hours.
  • Wednesday, the physical therapist came by to walk with me. We once again just walked around the floor. I asked if they had a treadmill, unfortunately they didn’t (i brought running clothes!!). I really wanted to try my new legs! She watched the video of me walking before the medicine was hooked up. It turned out that I was walking the wrong way. I was walking fast and steady, but I had adapted by walking while swinging my leg outwards to make big steps. I now have to relearn how to walk again.  I also walked around with Armando and Scotty, they even noticed the difference! Scotty said “You don’t walk like Frankenstein anymore!”
  • Thursday I was at full dose. My leg felt light, I didn’t feel any tone or spasticity, I wanted to run! Later that day, they started tapering down the medicine I was receiving. I had so many mixed feelings. I have many questions, I was anxious. I knew that when I wake up the next day the little bit of freedom that I had was going to be gone. My light legs will be gone.  I was sad.
  • Friday was check out day. The catheter was removed and I was placed on flat bed rest again for the rest of the day. The doctors came in and talked to me about the results of the trial. He was glad that I had thought to record myself walking as it served as a  good reference for the trial. We took a before and during video during the trial. Both the Doc and the PT  were very encouraged by the results, they think  I will get very good results from getting the implant. The decision is mine.
  • As I was flat on my back, I was apparently getting attacked by a Pokemon. My valiant husband rescued me!
    As I was flat on my back, I was apparently getting attacked by a Pokemon. My valiant husband rescued me!

The medicine is now completely off my system and I can definitely say that it made a big difference. I have talked it over with my family, I have thought about it the past few days. I am leaning towards getting the implant. Do I have HUGE expectations? You bet! I have some time to think about this, I have many questions. My family and I also have our reservations because as with any surgery there are risk. But seeing the difference, how could I even have a second thought?

 

Trials and Expectations

On Monday July 11th 2016, I will be checking in at Kaiser Redwood City for 5 days.  This time, I am going in on own volition.  I was reading up on post stroke treatments and there are many out there. Many of these options were not brought up by my doctors.  In my research,  I learned about the Intrathecal Baclofen Pump or ITB pump. Baclofen is a medication that I take that helps relieve the spasticity and tone that was the result of the stroke. In simple terms, spasticity is why my hands stay clenched or why my knee does not bend when I walk. I’ll get into detail about tone and spasticity on another post.

I have worked hard at getting to walk again, I can even try do a quick jog. But when I do, my left leg feels like it is wrapped in a cement block. By getting the pump, I hope that the tone on my leg would ease up enough so I could run again.  I won’t be in constant fear of falling on my face again,   and I wont be causing damage to my other joints.

This 5 day stay will be to determine if the pump is suitable for me.  The trial period involves the insertion of a catheter through my spine where the medicine will be delivered. During the hospital stay, they will determine if the medication is a good fit for me.  They will also determine the right amount of medicine that I will need. I am to get physical therapy twice a day to get an objective view of my progress or lack of. After the trial, if the medication is effective, I can decide if I will go ahead with the implant surgery.

I maybe putting too much hope into this trial. I am expecting that this trial will show that I will be able to run again. That my leg will function as it should again. That it will stop the painful spasms that wake me up in the middle of the night as if someone is tightening a vice grip on my thighs. I have very high hopes. After the trial period, I will have a few months to decide if I would want the surgically implanted in my abdomen with a thin catheter attached to my spine delivering medication.

The doctor has informed me that this method had worked very well for people with such high spasticity that they are not able to get up from their wheelchairs. In my mind, this sounded like this “if it helps people who cannot walk get up and walk again, then imagine what it can do for me!”. The doctor quickly burst that bubble by saying “you might not notice much difference in you” BUZZKILL!!!!

I am scared, I have high expectations, I am hopeful. If there is a chance that this will work, this trial is where I get to find out.

Please send out some positive vibes for me! Stay tuned!