Stroke Story Archives * Page 2 of 4 * Survived to Thrive by Momma Berna

Left Frustrated

The moment I was able to flip the bird with my left hand again felt like victory and awesomeness.

When my brain broke, I Iost the use of my left side. The technical term is hemiplegia. It is often referred as one sided paralysis. My left arm, shoulder and hands clung to my side tightly. It was painful to even try to move. My fingers were in a closed tight fist so thst my nails were cutting into my palm. Spasticity keeps my fingers stuck together as if they are bound by a thick rubber band.

It is incredibly frustrating that very simple things are so very difficult to do. Getting dressed, eating and even holding a book became impossible (thank goodness for Kindle). I had to learn a new way of dressing myself, how to put on a bra – ladies, it wasn’t easy nor was it pretty. Getting tangled in my own bra was quite interesting.

At first, I was embarrassed to ask my boys or my husband to cut up my food. I would have gone hungry. I’ve learned to order food that does not require any cutting when I am out with friends, I did not want to ask them to slice up my dinner for me. Eating a sandwich is still tricky and messy.

I am right handed so I thought that not having the use of my left would not be a big deal. Wrong! I took for granted how seamlessly my shoulders, arms and hands worked together. I live the metaphor “with one hand tied behind my back”.

Three years post stroke, I still have a long way to go for my left hand to be fully functional. I do a lot of stretching, weight bearing and fine motor skills training (picking up small and large objects etc.).

Looking back, I have made major improvements:

I am able to tie my own shoes again! Youtube has multiple videos of one handed shoe lace tying, but they are more complicated than I preferred. I had elastic, no tie laces which were very helpful, but I wanted to tie my laces on my own. Who knew that at my age (don’t ask), I would celebrate being able to tie my own shoe laces!
I could now keep my fingers open. This is great because: I am not hurting my own hand anymore, I could cut my own nails without someone else prying my hand open. I could get manicures! I could even cut my right fingernails with my left hand. With some modifications.
“It puts the lotion on it’s skin” that’s with my left hand on my right arm.
I am now able to use a can opener. The manual one. I won’t starve anymore. YAY!!!
I could open a bottle of wine! (this should be number one on this list).
I could turn the door knob with my left hand.
I am now able to lift my arm up to my ear and hold it there for a few seconds without assistance.
I could fold laundry (sshhh, let’s keep that on the d.l).

gym hair, pony, left hemiplagia,stroke survivor hair, pony, long hair, — ***Gym pony by the hubby. He’s good,right?***

There are many things that are done day to day that for most of my life I have taken for granted . Just combing and putting my hair in a ponytail takes the coordinating action of my shoulder, upper arm, lower arm, hand and freely moving fingers. My husband has gotten really good at putting my hair up. He still needs to learn the fine art of French braiding, I also need to get my boys trained at this skill. I am happy to say that both of them have learned how to help me with my jewelry.

I am still wary around knives. Cutting veggies is scary when at any time my left fingers could slip right under the blades of a sharp knife.

Typing is literally a pain. Typing with one hand is slow and tedious. Typing with one hand and having a crappy short term memory is very, very frustrsting. I am using this program to improve my typing skills, right now I am up to 10 words a minute! WOOHOO!!! I looked into speech to text software, but the price tag left me…umm…speechless.

I have been stuck with the idea that using adaptive equipment means I am giving up. Lately, I am realizing things would be less frustrating if I adapt rather than struggle. I would be more self reliant if I use things that could aid me, rather than getting frustrated because it’s “too hard” do things. This one handed chopping board is an example.

My accomplishments are small, yet they are the steps that I build on. Eventually, my brain synapses will fire up again and make new connections. It is a long, frustrating road. Imagine traffic on the Interstate during rush hour. Or for my Bay Area readers hwy 880 anytime of the day (emirite??)

splint, hand splint, stroke survivor, occupational therapy — ***My super sexy night hand split. It is to train my fingers to stay straight.***

I continue to hone my gross and fine motor skills. My arm and hand moves like an amusement park claw machine. Slow, unreliable and drops things when you think you’re about to get the prize.

Much Love,

Momma Berna

Low Heels, High Expectations

I love shoes. I would switch between sexy heels and sweaty running shoes. Nowadays, I live in Tom’s canvas shoes and since it’s winter, I get to wear boots with the fur (enjoy that earworm. You’re welcome 🙂 )

My husband and I were invited to a birthday party. I wanted to get all dressed up. I ordered myself a form fitting dress and feeling brave, I picked up a pair of not so high heeled sandals. I practiced walking around the house and I did fairly well. I was able to keep my balance and my left foot felt strong.

The day of the party came. I got my hair and face done, squeezed myself into my dress and strapped on my shoes. As an afterthought, I had my husband bring a pair of my trusty canvas shoes.

We got lucky and found a parking spot about a block away from the restaurant and club where the party was happening. By lucky, I mean we had to drive around downtown for an hour where every parking structure and over priced lots were full.

Walking on the sidewalk is a whole different ball game than walking around the house. I was very, very wobbly. I was grabbing on to my husband’s arm as if my life depended on it. It did. I was trying to walk gracefully, but it was not happening.

As we walked in the restaurant, a few people were staring. Looking at my feet, looking at me and shaking their heads. Since I really do not have any visible damage from the stroke, wobbling the way I did and having a death grip on my husband made it seem like I was drunk. I knew people were looking and judging. I kept walking knowing I have good friends, good food and good champagne waiting.

I headed to the bathroom after dinner, my foot at this point was done. Walking really poorly, I managed to roll my ankle and I heard a slight pop. Panic set in and I was leaning on my husband not wanting to put weight on my foot. That was when two young women walked out of the bathroom. They stared, whispered and giggled. I was visibly upset thinking that I had sprained/broken my ankle. Armando led me to one of the chairs in the lobby and the two young women were standing by the elevator still giggling, phones out. I’ve had enough. I told them loudly “I am not drunk” (which on hindsight made me sound like a real drunk). I was about to tear them a new one, but my husband stepped in and diffused the situation. I was in pain and I was scared that I had broken my already weak ankle that I have been working so hard to get stronger. I was upset that there are people who would laugh at another’s suffering.

What happened to kindness, empathy or sympathy? Was I expecting too much? I was obviously in pain and was distraught and the young ladies quite possibly were sharing my situation on their social media. When have people become desensitized to another’s pain that instead of offering comfort, they offer social media fodder. The amount of “likes” and responses validates the poor behavior. I got over the judging looks and whispered remarks, heck I know I looked drunk and wobbly. What bothered me is that there are people out there who callously would laugh about someone else’s pain. Finding validation for bad behavior will only encourage those young ladies to find their next “victim”. There were many opportunities for someone to show kindness that evening. A kind word or a sympathetic smile would have been sufficient.

laughter, expectations, party — Still Standing

Thankful that I brought my reliable Tom’s and my foot was not broken, I was still able to hobble and I still looked hot (or a hot mess) at the party. It was AH-MAY-ZING!!! The music was heavily 90’s and the dancing was fun. Drinks were flowing and the company great. Lots of laughs and shenanigans ensued. One of the advantages of having a crappy short term memory is that I temporarily forgot about the ugliness at the restaurant and I enjoyed the party! My husband and I had a much needed night out.

Hope the New Year brings you joy, love and kindness!

Much Love,

Momma Berna

high expectations, low heel, — **The Aftermath**

Thank You and Thankful for You

Thanksgiving week is over, I hope that everyone enjoyed platefuls of turkey and stuffing followed by a tryptophan induced nap and have survived the annual mass hysteria known as Black Friday. In the spirit of gratitude, I’d like to give a

online shopping, friday, gratitude — *How I Black Friday.*

big shout out and a big thank you to the people who support, help and encourage stroke survivors and other survivors to lead more productive, healthy and thriving lives.

I am fortunate to be surrounded by amazing family who are also my caregivers: My husband, My children, my sister And my mom. My mother and sister-in-law also give tremendous help and support.

Caregivers give so much, it seems impossible to tell them how much they are appreciated. Material things will not be enough to express our thanks. I know this list is short, I have wracked my brain for answers and I cannot seem to come up with something that would be able to truly express my gratitude.

*The Turkey Trot has become a family tradition. The family that wobbles together… The boys run, the husband & I wobble.*

1. Say what you mean. Our caregivers are not mind readers, we sometimes feel that they “should” know what is it that we want or need. Try not to say things like “it would be nice if I had a warm blanket” or “ Is there anyone here who could get me some water?”. It might be hard to ask, specially for the simple things we used to be able to do. But being direct, but polite eliminates a lot of misunderstanding and resentment.

2. Give them space. The first year after the stroke specially the first six months, I was worried about being left alone. I also did not like going outside. My family was held “hostage” by my fear. Armando, my husband was still working full time, so he would put in 9 hour work days, then come home and take over for my mom to care for me. The boys were busy with school, so they help out when they can. Armando was essentially “on” 24/7. He needed a break. I managed to kick him out of the house to hang with friends before he burned out. Since then we have learned that having some time for ourselves is essential for our sanity. He now works from home, so getting some alone time is even more important. The people who take care of us, must also take care of themselves, be it some time at the gym or going out with friends. Time when they can just breath and relax without having to worry about pain levels, medications or cutting up food.

3. Encourage them to join a support group. As much as we need support and other people who understand & know how we feel, our caregivers need the same. They need other people to be a sounding board, to get new ideas from and most importantly a place where they could bitch about us (Ha!).

4.Give your recovery your best effort. We all want to get back to our normal lives and to be able to do things on our own. Our caregivers want the same for us. Armando beams with pride when he sees me working out or doing physical therapy. I know in my heart he is happy to see me working hard and trying. He posts more photos on Instagram than I do! Our loved ones our caregivers have invested a lot of time with us and for us. I feel that watching us work hard, putting in the effort and slowly make our way back to recovery is as satisfying to them as it is to us.

5.Say “Thank You”. Seems obvious, I know. But there are times I forget or worse yet, I take their help for granted. Sometimes I get caught up with my deficits and self pity I fail to see how much my family does for me. Our caregivers give us the support we need: emotionally and/or physically. Express gratitude often and openly. This simple phrase means so much.

I know this list is short and inadequate. I cannot come up with anything that would be able to truly express how grateful I am. Do you have any ideas? If you are a caregiver, what is it that you would like? Please let me know in the comments!

Much Love,

Momma Berna

Pain in the Ask

I have chronic pain. Some days are worse than others. I work hard on my recovery and sometimes I over do it and only a strong pain killer gives me relief. When I asked my Pain Management and Rehab doctor for a refill of my meds, he flat out refused. I waited a couple of days before I emailed Dr. K in order to avoid calling him an egotistic, arrogant, jerk-face (I’m keeping it PC 🙂
Last Monday, November 6, I went to Dr. K my PM&R doctor. It was a scheduled visit to get my Baclofen pump adjusted and get Botox shots for my arm. Dr. K was condescending from the get go. I told him about my frustration with the pump. He tells me, “It could always be removed”. The removal process is a major surgical procedure. As was the installation. He didn’t care to discuss what my frustration was nor did he suggest what could be done for improvement. Having had the pump for a year, I mentioned that I hoped that the pump would be effective enough that I would have been able to run a marathon by this time. I think the eye roll he tried to hide almost broke him. He was so incredibly dismissive.
He adjusted the pump and when I asked what the dose was, he just said “I increased it by 10%”. Thanks pal, you couldn’t have given me an actual dose? It felt as though he didn’t want to be there.
When I asked for the medication refill, he gave me this explanation “ Narcotic or opiate pain medication could alter pain receptors in the brain when taken on a regular basis.” He also said that “people tend to misuse them”. He suggested instead to increase another medication I am currently taking. Why would I want to increase my meds on a daily basis, if I only need to take a pain medicine once in a while? I was so upset when I left his office that day.
I was upset because Dr. K didn’t even look at my chart, had he done that he would see that the last time I filled my script was back in June. He made a generalization about me based on my request. I sent him an email a few days after my visit. I had to calm down, gather my thoughts and figure out what I wanted to say. In my email, told him I felt that he incorrectly assumed i will be abusing my meds, I have tried over the counter medicines and they have not helped. Pain increases my blood pressure – the cause of the stroke.
His reply included a blurb about opiates are not helpful long term for chronic pain. I felt once again that he completely ignored what I said. He recommended pain management courses and chronic pain support groups.
I am upset because I feel like I am begging for a better quality of life. I cannot prove or disprove the doctor’s perception that chronic pain sufferers have a tendency to abuse pain pills.
I understand what he is trying to do. There is a huge opioid addiction happening in the U.S right now and doctors are understandably cautious. He is protecting me from what could be a horrible addiction and he is also protecting himself.
In the meantime, people like me who suffer chronic pain are left to well…suffer. In the spirit of advocating for myself, I sent the email. I do not plan on using breathing exercises when I could hardly breath due to pain.I use alternate therapies, but sometimes only pain medication helps. I am in the process of looking for a different doctor. This recovery process is going to be a long road and I need people who are willing to support me along the way.

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!).

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

A Kaiser Cocktail & a Bikini Shave

Three weeks ago, I had my annual MRI. An annual MRI was recommended by my neurologist since she found two unruptured aneurysms in my brain and wanted to monitor them for changes in size etc. Two hours after the MRI the neurologist called, it didn’t think it was a good sign when the doctor calls immediately and on a Friday afternoon! She called to tell me that one of the aneurysms have gotten larger and needed to be treated. I needed to get a cerebral angiogram to determine what treatment is needed. I would have two choices: coiling or clipping both are invasive (clipping more than coiling) and there are major risk involved. Besides, I do not really want anyone tinkering with my brain. I was freaking out. The angiogram was scheduled for September 18th. I was a bundle of nerves that week. I looked up YouTube videos of the procedure, my level of anxiety was high. Friday before the procedure a nurse called to reschedule the appointment! Ahhhhh one more week of hand wringing!

September 25th, Vincent drove me to my appointment at the Kaiser in Redwood

Cheesing it up before they take pics of my brain. PC: Armando

City. I was told that the procedure would last about an hour with a 4-5 hour recovery time. After being prepped with IVs and a short chat with the neurosurgeon, I was wheeled into the procedure room.

There was a large monitor just above the bed and multiple medical cameras. One of the nurses told me he was giving me a “cocktail” through the IV. I was given combination of Versed and Fentanyl. Another nurse proceeded to shave a small area by my groin. She even shaved the other side “to make things even” haha. Feeling relaxed and loose I said something like “wow, this is just like a resort vacation! I get a cocktail and a shave!” the nurses laughed as I am sure they hear all kinds of drug induced mutterings.

After I was injected with a local anesthetic, a catheter was inserted into my femoral artery. I found out that the femoral artery is a direct highway to the neck where a dye will be injected and more detailed pictures of my brain could be taken. I was instructed to hold my breath while the cameras took photos of my brain. I felt a slight warming sensation when a dye is given to me prior to taking the photos. When I closed my eyes, I saw bright, colors! I guess now I know the inspiration for “Yellow Submarine”. One of the nurses put pressure on the incision for 20 minutes to stop the bleeding and to seal the cut. It was awkward! I asked him a bunch of questions to make time go by quickly. I asked why the cut is done by the groin, when the neck would be closer.

colored angiogram slide. — My brain is lit!

I was wheeled back to the recovery area where I had been instructed to lie still for the next 4 hours. I. was. STARVING. I haven’t eaten since 9 P.M the day before and it was already 2:00 P.M. A nurse brought in a bland turkey sandwich I had to eat lying down. I fell asleep despite the every 15 minute wound check.

The neurosurgeon came by with really good news. He said that the aneurysms are small and would not need to be treated. Yay! No one would need to drill a hole in my head! He mentioned that he still needs to confer with the neuro team regarding the results, but they usually listen to his recommendations, so he was confident with the initial prognosis. He also mentioned that the MRI & the angiogram results are complicated, as my brain is more complicated than others he has seen. Now I have medical proof that I am complicated!

I am grateful that I do not have to worry about this too much anymore. Having two unruptured aneurysms in my brain had been on my mind these past couple of years. I referred to them as two ticking time bombs. In a way, I am glad that this cerebral angiogram was ordered. It gave me a more realistic vision of what is in my brain. I am relieved. I now could focus on recovery and getting stronger. I could prevent the aneurysms from growing by keeping my blood pressure at the normal range which I can achieve through a healthy diet and an active lifestyle. And avoiding stress (yeah I know, easier said than done.)

The doctor, nurses and other staff at Kaiser Redwood City were very knowledgable, nice and accommodating. They definitely put me at ease. If any of them happen to read this, Thank you so very much!

For the next couple of days, I have to take it easy. No heavy lifting or strenuous walking. But by this weekend, I will get back to the grind!

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!

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Walking Universal

Harry Potter experience,Universal Experience — *The entrance to magic!*

July 20th 2017, my family set out on our first “real vacation” after the stroke. I was apprehensive. I used to be in ~~control~~ charge of every detail of our vacations, down to packing up the car for the road trip. I dubbed myself the Tetris champion of luggage packing. I was able to cram luggage for 4 people, snacks and “other essentials” in the back of the Impala (may she RIP) and now the CR-V. It is not easy to not be in ~~control~~ charge anymore. The boys are older and they can pack their own luggage– so what if they only pack one pair of undies– and I instructed them on how to arrange the bags in the car trunk. My anxiety was still high. What if I get sick in the car? What I didn’t bring enough meds? What if ? what if? What if I just take a deep breath and just enjoyed myself?

elevators, crowds, — One of four very long & crowded escalators.

Saturday, July 22, 2017, my sister celebrated her birthday at Universal Studios Hollywood. She booked us for the VIP tour and boy it was posh! The day started with a delicious breakfast which we almost missed coz our GPS led us astray. After inhaling yummy pastries (sorry no pics), we met with our guide. VIP perk #1 we get to jump the line on any ride we choose! Which was very much appreciated. It was around 1,000 degrees and the park had about a million guests that day! Our first stop was the lower studio. I had forgotten that “lower studio” meant four super crowded, super long escalator rides down. And we had to keep up with our fast moving tour group. I love the rides at Universal, I love thrill rides in general. But this time I was apprehensive, I didn’t know how my broken brain will react to the jostling, shaking and speed of the rides. The boys were worried that I will have another stroke if I get on the rougher (fun) rides. I got on Jurassic Park since I know it was pretty mild and really wet which was a plus in the hot weather.

***The big dinos were out to say hello!***

Jurassic ride, Universal Studios Hollywood — ***Whew !!! it was wet!***

The moment i have been waiting for finally arrived! We were at the Harry Potter Experience! I was so giddy, I swear I would have floated away if Armando wasn’t holding my hand. It.Was.Glorious!!! The snow on the roof tops, the shops and the owls! And of course Moaning Myrtle was in the bathroom being her old, irritable self. It was understandable that my son was nervous about my getting on the The Forbidden Journey ride. Our guide

Hogwarts castle, magic, Harry Potter — Hogwarts:The outside was great, but inside was enchanting!

described it as fast paced, rough and with lots of flashing lights (in my mind: FUN). The ride was UH-MAY-ZING! I would love to get into detail, but it is something to be experienced. Yes, I went twice.

I am proud of myself for keeping up with the tour group. I am proud of my mom for keeping up s well. It was definitely fast paced. I am sure the other folks in the group were a tad impatient with us. My mom braved the Walking Dead attraction. Speaking of, how many people could say “I was bit! I was bit” while exiting the attraction and actually walk the part!

zombies,amc walking dead,scary — ***The Walking Dead Attraction***

I knew that going on vacation will not be the same after the stroke. I will be slower, the kids will worry and for now, I will have limitations. But I am determined that I will not be held back. I was going to rent a wheelchair for the day. I am glad that I decided against it. This was a challenge I overcame. The heat, the crowds, the noise and the pace of the tour were challenging. We had to keep up with a group of 6 able-bodied people. I more than once considered dropping out of the group, but I am glad I didn’t. We saw places at Universal Studios that are not open to the general public. At the end of the day, I was wiped. I could not think straight, my leg refused to move and I felt like i had no control of my body anymore. I knew that the neurofatigue would be kicking my ass the coming days (and it did).

I am looking forward to more vacations and more adventures. My disability might slow me down, but it will not limit me. I admit I tire easily, I am slower and it takes longer for me to recover. I am not ready to stop. If I am too slow for some people, they can move ahead of me and I will hobble my way to the adventure that awaits me.

Much Love,

Momma Berna

This is Me

I promised myself I would not allow this stroke to define who I am, that a stroke was something that happened to me, not what I have become. Until I realized that there is nowhere around this. I am a stroke survivor.

I am trying to embrace this “new me”, the survivor me. I am a much more flawed version of my old self. Looking at me, there is little to tell you that something is wrong. It is only when I start moving that my deficits become evident.

There are days when I feel that my head is stuck under a fish bowl and everyone is tapping on the glass. I can see people and hear people, but they are much too loud and it is difficult to filter out the voices from the noise. Being in a crowded place overwhelms me and if it’s loud, I get even more rattled. This overload leads me to becoming tired and grumpy.

There are days when my brain & body is my enemy. It is as if someone made a voodoo doll of me and he or she relentlessly sticking pins and needles on different parts of my body.

I move a lot slower than I used to. Both mentally and physically. I used to be able to come up with a smart ass remark about anything. I am still a snarky, sarcastic smart-ass my punchline are just delayed! I move slower. Being careful of every step and just simply dealing with the heaviness of my limbs. I slow people down and I know it can be difficult to deal with me. I try to be considerate of the people around me. The difficulties I experience are not all visible. I can’t even put words to how I am feeling sometimes. My family and friends rally me on, but I know it can be difficult on them too.

I have been given a journey on a road I didn’t plan on traveling. Fortunately, I have people around me willing to share my travels. There are many times, I have to ask. It’s not always easy and I am slowly accepting that needing help is not a sign of weakness.

What I have discovered is that inside this broken body and brain, I still see glimpses of my old self. The funny, sarcastic, smart, strong and determined me. I think that this old me is what keeps the new me moving forward.

half marathin finish — One week and two days before the stroke, I finished the SF Nike Half marathon (13.1 miles)

Three years ago, I was an average mom and wife, living an average life and doing extraordinary things to stay healthy. I was running 10 plus miles a week and racing 5&10ks and some half marathons on the weekends. I was an average runner who was only competing with myself. In October of 2014, I had a massive stroke. I was in and out of consciousness for about two weeks ( so I was told), and when I came to, my first words were “I need to get out of here, I have a 10k to run on Thanksgiving.” I was not aware that I had become disabled. My legs, which took me to many finish lines and helped chaperoned many of my boys’ field trips were no longer working. My left hand and arm were paralyzed as well. That reality did not hit me until the first day of physical therapy in intensive rehab. That was when I realized I had to learn to walk again.

This new me is cranky at worse and tenacious at best. There are days when I do not want to get out of bed and my biggest accomplishment is turning on the t.v. There are days when I feel I am ready to take on the world and in a small way, I feel that I do. I get discouraged, angry and get sad but I also know that some days I just need to put my big girl panties on and fight.

If you are reading this and you are a stroke survivor, I hope that I can offer you the information, support & encouragement you need to get through rough times. When you feel alone and misunderstood, I hope to be able to give you company. And hearing from you would also help me know that I am not alone. That there is a community we all can fall back to in tough and painful times.

If you are a caregiver or a family member of a survivor, know that we are very grateful for your presence in our lives. Although every survivor is different, I hope I could give you some insight into what a survivor is going through.

Much Love,

Momma Berna