Brain Chatter During and After a Stroke

I want to talk about brain chatter, to maybe make people aware of what might be going through someone’s mind during and after a stroke. Witnessing a person having a stroke can be scary. Every stroke is different, so you never know what will happen. I will tell you my story of my brain chatter, but it may or may not apply to others. However, it’s knowledge that can’t hurt to know.
Most of you know the story, and for newcomers, please read the first story of my blog for details. Basically, I was at The Fairmont Hotel for a luncheon for my dear sweet friend’s 90th birthday. I was the only 48 year old attending with all much-older women, and I was the one carried off on a stretcher! Haha! Funny now, and it was kinda funny then, too!
When the stroke started, my face drooped on one side. I was thinking that something was wrong, but was also fascinated by how much one side of my face could sag. I could feel it!! I never saw it. When I got up to go to the restroom, I wasn’t walking right. In my head I was thinking ~ uh oh, this isn’t good. When my hand couldn’t make my phone work, I thought ~ this is a stroke, and I need help so I can get to a hospital for one of those shots to reverse strokes. If I was really thinking right, I would have put the phone in my left hand, and could have dialed it. I saw David, who is the son-in-law of my friend the birthday girl. I called him over, and when I started talking I didn’t recognize my voice and slurred speech. Fortunately, he had been with his dad during his stroke, and recognized the same speech and slurring with me. While I was sitting and waiting for the ambulance, I actually thought ~ how funny that I’m the youngest one at the party, and I’m leaving in an ambulance! I also thought ~ wow, I’m so calm! I thought that a LOT! I had a history of having my blood pressure go up when it was being taken at the Dr office, and I was thinking ~ huh, I don’t think my BP is going to go up this time, because I’m so calm! Well, my BP was already at least 285/185! I didn’t know it, and didn’t feel it.
David was keeping my husband and parents abreast of my condition, by phone. He was also very calm. The waitress sitting with me, who was a nursing student (and I thought ~ what are the odds of that happening) was also calm.
When I got in the ambulance, I asked where my purse was. Haha! My purse has everything in it! I could win the old Let’s Make A Deal show when he’d ask the ladies at the end, for odd things in their purse! David had it, and was sitting in the front seat. I was thinking how nice he is to stay with me. Speech was worse at this point, so I was choosing to not talk. I wasn’t thinking too much, either. My brain was quiet, without much chatter going on.
In the ER, there was so much commotion going on with nurses and DR’s doing their jobs. I was thinking ~ hurry up and give me that shot! Well, then they told me that I don’t get the shot. It was a hemorrhagic stroke, and my brain was bleeding. They prepared me for possible surgery. In my head I was thinking ~ no, I don’t need surgery because it stopped bleeding. Why did I think that, I don’t know. When I told that to the nurse, she acted like I was crazy, and said that I couldn’t know that. I still kept thinking it, and guess what, I was right!
I still didn’t think too much. I mostly thought about things in reaction to what was going on.
When I realized that I was paralyzed on my right side, it felt like I was moving my right side, but I wasn’t! I thought ~ this is what people feel when they lose a limb!
In the days following, my memory was a little weird. I couldn’t always remember words. Bryan was a great mind-reader, and he would fill in the blanks. I remember thinking things, but couldn’t say them. In my head, I was fine. Then to put things together, was a challenge. But I knew that words weren’t coming out right, because in my head I was thinking clear! I learned to slow down my talking and I could be understood better.
The brain chatter was there, but not constant. My new world was pretty quiet. I think that’s why I needed it quiet in my room. I needed people to be calm. No visitors, especially no high energy people. I was so aware of people’s energy! It could be instant overload! And it showed in my blood pressure!
I mostly had patient nurses. They were so happy with my progress, and were mostly very helpful. I never really stopped talking, and I think that helped me. My stroke was in the left basal ganglia which mostly controls speech and coordination.
I’ve read other stroke stories where people can’t talk at all, and they are treated like they are dumb, or babies. I’m here to say, the brain still thinks! The problem is getting the thought from the brain to the mouth! That’s where it goes haywire! Sometimes, the information isn’t in the accessible brain area, so relearning things is the only option. I’ve experienced that, too. Thank goodness for the ability to rewire your own brain!
It’s important to treat stroke survivors with calm, patient energy. No need to talk in a condescending tone or manner. Chances are, they’re still thinking normally, but can’t make the words happen. Have patience! The brain still knows things! In a lot of ways, it knows and feels even more that ever! Never underestimate the stroke survivor!


New Occupational Therapy

Today I finally had my 1st occupational therapy (OT) appointment at the new place where I’m going. The therapist is a nice lady, who has years of experience, including 5 extra years of schooling to specialize in hands. The main purpose of OT is to help get back the ability to do the things in everyday life that one could do pre-stroke. The list includes things like brushing teeth, getting dressed, cooking, baking, eating, writing, all kinds of fine motor skills, and being self-sufficient. They also help you with the skills needed to work again.
Today, the first thing that she did was go over paperwork that the physical therapist had me fill out in the beginning. The way I answered the questions, she thought I didn’t need to be there. For instance, the question was can you brush your teeth? You had to answer by checking a box from 1-5, with 1 being very little, to 5 meaning yes I can without help. I answered 5. Well, today she asked the question differently than the written directions. She asked if I could brush my teeth the way I did before the stroke. My new answer was a 1. I now use my left hand to brush my teeth. Right-handed doesn’t really work. She said ahh-hah! So, we re-did all of my answers!! No, I can’t do a lot of basic functions with my right hand. I’ve learned to do them with my left hand. Sometimes not very well left-handed, either! Haha!
I guess that’s one of the post-stroke challenges. Looking fine, healthy, and self-sufficient, so everyone thinks all is fine. Until the tests start. No more fooling! She honed right in on my deficiencies! These therapists see everything! My arm dropped when I was concentrating on getting the pegs in the holes, and after I finished she asked me why my arm dropped. I didn’t know it dropped, but it’s one of my challenges doing hair, so I wasn’t surprised. We’re going to work on that, too!
Don’t get me wrong, I like being self-sufficient, and looking like I’m fine. I just want my right side to contribute to the tasks!
She got out a small saucepan and whisk, and had me pretend to whisk something as fast as I could. It was very hard. It reminds me of when I make scrambled eggs, and how hard it is to blend the eggs before pouring them in the pan. Evidently there’s a muscle in the hand and wrist that controls this movement. There lies the problem! A lot of my deficiencies are because of that specific muscle! That muscle is the one that causes carpal tunnel. I don’t have carpal tunnel, it’s just that muscle was affected from the stroke. The brain is not getting the signal there, like it was before the stroke, so it doesn’t move properly. She will have specific exercises for me to hopefully wake up that muscle.
She asked about specific issues doing hair. I told her about those, and she wants me to bring in some of my hair equipment. She’s hoping to help me get improvement. Maybe she can help me to be able to do my own hair too.
My right tricep is almost completely atrophied. She explained that is has to do with the muscles around it that stiffened up from the stroke. I do a whole lot of compensating with other muscles in order to move certain ways. The problem with that, is I can’t stay doing that long term.
So, I came home with a stretchy band to do some specific exercises. She’s no-nonsense and serious, so I know she’ll kick my butt, and I have to be ready! This is going to be an intense 6 weeks! I need it, and I’ll get all I can out of it! I’ve already seen improvement from physical therapy (PT) after a few weeks, so I’m hoping I’ll see that with OT as well! My little side stepping exercises in PT where my right foot crosses behind the left, is now at the point where I can pick up my foot to cross it!  I was initially dragging it across. It’s these small improvements that are exciting to me!
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Back to Therapy

Well I’m back in physical therapy, and maybe even occupational therapy, too. 2 years post-stroke. My new neurologist is pretty amazing. He did a whole physical evaluation, you know where they press your arm and you have to resist, etc. Strength tests, I guess you’d call them. I’m pretty strong in most places. The needle pricking test was interesting. There’s still a lot of areas on my right side that are numb! I didn’t even know. I knew certain parts of my face were numb, but I had no idea that my arm and leg have numb spots, too! The bad part is my upper back. Not numb, it just doesn’t move very well on the right side. It’s because it was paralyzed for so long, it’s just very weak. My scapula is kind of frozen. The Dr was amazed at my range of motion, but I have no strength to hold the positions. There’s so much atrophy on the right side of my upper back. I guess that’s why I feel like I can’t hold my head up! He is afraid that it will just get worse. So the Dr put me back in intense therapy twice a week. It’s with different a therapist than I had before. Nothing against my other therapists, he just wanted me at the facility that he is used to sending people.
I enjoy therapy! Yes, it’s hard and tiring, but it’s really fun! She’s finding all sorts of things that I need to work on. I find myself saying a lot, “Oh my gosh, I had no idea that I couldn’t do that”! Haha! Putting one foot in front of the other heel to toe, closing my eyes and touching my nose, touching each finger to the thumb, I fail them all! Haha! Good thing I don’t really drink too much, and never drive after!! She’s also found that my abs don’t work on my right side, and I have no feeling there, either. She stretched out my right side, and I felt a pull in my hip and my armpit, but not my side! Interesting! So I need to be careful when doing stretches.
She gives me fun exercises to do at home. And I do them several times a day!! I can do them while I’m outside with the dog, in the shower, in bed, or watching TV. I told her that I was able to do the hula-hoop last week at a family party. She was shocked! We laughed, because she said that she hasn’t been able to hula-hoop since she was 13 yes old! Katie and I did it a lot through the years, so I knew I could, and I did! My therapist told me to go buy a hula-hoop and do that at home too! So I will, and that will be fun, too!
Next week I have an evaluation with the occupational therapist. They want me to go to get help with my fine motor skills. She can also help with the scapula issues. I hope to get help with my writing, too.
The neurologist referred me to a specialist at Stanford Hospital, who he thinks is going to know my blood pressure problem, and maybe why I had the stroke. That appointment is in a few weeks. Should be interesting. I’m very thankful for all of the good doctors that I’ve had. And all of the good therapists, too! Life is good!

2 Years Since My Stroke

As I approach the 2 year mark since my stroke, I just can’t believe how far I’ve come! I also realize how much my life has changed from that fateful day of March 14, 2011. I survived a hemorrhagic stroke!

I know that I’m still a little traumatized from the stroke, because saying the date of March 14, 2011 makes me remember trying to answer the paramedics when they asked me the date. I could answer most of their questions, and I was surprised that they understood me! I could not say 2011, though! I tried and tried, but my brain wasn’t working too well. The funny thing about having a stroke, is you can still think, but to say anything is so hard! My speech was very garbled. I knew it was all wrong, but I couldn’t do anything about it! While I was in the emergency room, I remember thinking that I needed to talk slower, and then maybe I could be understood. It helped a little, I think. To this day, if I talk too fast, my speech gets garbled. I can catch myself pretty quickly, and correct it. If I’m tired or my blood pressure goes too low, I slur my words. The slurring speech is harder to correct, because that calls for enunciating! I don’t always catch myself slurring, or can’t change it, so in those cases I just quit talking and rest as soon as I can.

Most people didn’t see me in the beginning, and we didn’t really take pictures. I’m glad for that. Being paralyzed on one side is a helpless position to be in, but I always knew it would be temporary! I improved so quickly! Every day was exciting, because I couldn’t wait to be able to do new things! It was so fun when the therapists would come in my room, because I knew I’d do something that I hadn’t been able to do before. I looked forward to all of the different therapists that visited. I even had an occupational therapist that was almost blind! She was amazing!

I have great memories of being in the hospital! That seems like a strange thing for me to say, since I had a hemorrhagic stroke and was paralyzed on my right side (and I’m right-handed). But it’s true! I think I was so lucky in so many ways! I had no pain. Everything I’ve read about hemorrhagic strokes says I should have had a raging headache, at least! Nope, not me! So I know that my recovery was maybe a little easier, because I was happy and upbeat every day, just like I always was before the stroke. I remember nurses asking my husband and family if I was always this happy! The answer was always, “YES”! And I would laugh!

That’s not to say that therapy was easy, or getting back the right side was easy, because it wasn’t! It was a lot of hard work, that was pretty continuous throughout each day! I was so determined, though! When you think about the brain having to make new pathways in order to move the body, you realize that you have this chance to get it right, and the sooner the better! The brain is so complicated! I’m glad that I never had any doctor, nurse, or therapist tell me that I was not going to get everything back 100%. They all said that I had the greatest potential to get to 100%! I’m still working on getting there! I won’t stop trying!

Life is different now. I can do most things, but not for a long period of time. My house is not as clean as it used to be, and I’m okay with that! I look at chores as therapy. I have to do them, but only until it gets frustrating, and then I stop. I don’t sweat the small stuff! My life is in perspective. I know what is important, and what isn’t important.

Bryan and I want to start a foundation to help other stroke survivors, and we have a plan. Money is an issue for that, but in time I know it will happen. We both have a great desire to help others! I have so much to do in this life, but all in time, and that’s part of the plan. I’ll let you know when we start our foundation.

I’m going to walk in a 5k walk to benefit stroke survivors in our county. We put together “team Jan”, and anyone is welcome to join my team. It’s $20 to join, and you get a shirt. Let me know if you’re interested.

I wake up thankful every day! I go to sleep thankful every night! I live my life every day in a thankful way, and I truly appreciate my family and friends. Everyone had a part in my recovery. I couldn’t have done it without the support, good thoughts, and prayers from everyone. Bryan made the biggest difference, being there 24/7. He’s an amazing husband! He has done all of the therapy with me, always with a smile! My kids have been amazing, too! They don’t let me get away with trying to be lazy or tired! Haha! I have to thank them for that! Thank you all for these last 2 years of your patience and love for me! I wouldn’t be where I am without all of my family and friends! My life is awesome!

My Secret Thoughts

It’s Thanksgiving, and as I was getting ready this morning, I was thinking about the things that I think about every day. Most people, not even my closest friends and family, know what goes through my head every day.

After having a hemorrhagic stroke 1 1/2 years ago, I am realizing that my positive attitude has probably helped me through this. I always think good thoughts! I have always been that way, and I can’t imagine being any other way.

I remember being paralyzed on my right side, and realizing how much I had used that side before, and then I couldn’t anymore. When I was slowly getting it back, I was so thankful for every little thing that I could do with my right side. The one thing that I couldn’t wait to do again was hug! A real hug with both arms, squeezing tight! I remember when I could raise my arm a little bit, then higher, and higher! I remember my husband placing my arm up on his shoulder, to help me out. All of those little things that he helped me with, were really huge to me! He was so patient when I needed extra time to try something. I was so happy when I could get both of my arms around him! Then when I could give a squeeze too, well that was the best! My family was aware of when when I could hug, too! To this day, EVERY time I hug my husband, I am secretly saying thank you to God for being able to hug him with both arms.When I hug my kids, I say thank you for letting me be able to hug them tightly with both arms. Yes, I really do think this every time!

Even though I was able to get the use of my arm back, getting the use of my fingers has not been as successful. I still struggle with fine motor skills. It’s not so bad, though. The things most people can’t see, or can’t tell that it’s a struggle, are what I work on every day. Cracking eggs, for instance, is still challenging. I love to bake, therefore, I crack a lot of eggs! After I crack eggs, I smile because I did it!

So many times during the day, I’m thinking about how lucky I am. When I wake up in the morning, I’m happy! I know that it will be a good day, and I’m always hoping for the ability to do more than I did the day before. When I go to bed at night, I secretly say a thank you for a great day!

I know all of the things that most people take for granted, are the things that I am so thankful for. When things have been taken away, and there’s a struggle to get it all back, you can’t possibly ever take those things for granted again!

So, because it’s Thanksgiving and everyone is saying what they’re thankful for, I’ve been thinking a little more today about the things that make me thankful. I’m thankful for my life, my health, my family and friends, and for all of the little things that I can do that no one ever knows! If I hug you, know that I am saying a secret thank you, because it’s one of my favorite things that I’ve accomplished!

Happy Thanksgiving!

Puppy Therapy

When I decided that I was ready for a dog, after putting my sweet 15 year old dog down in July, I had a list in my mind of what I wanted in a dog. I wanted to rescue an older female dog who was sweet and gentle, and who would want to hang out with me. The dog would have to be very nice, and definitely not a puppy! When I started visiting shelters and various dog organizations, all of the dogs had major issues that I didn’t feel prepared to deal with. I stayed searching, knowing that I would “know” my dog when I saw her.

When I was at the shelter in Santa Cruz, I saw this cute little dog, and knew it was mine. When I looked at the tag on the cage, it said 2 month old female Terrier mix. For some reason, I thought it said 4 month old. She’s actually 3 months old. Anyway, it was a puppy!! I looked back at the dog, and just said, “Well, I guess I’m getting puppy”! I never fight the feeling of knowing that there’s a bigger plan at work for me, and I just have to trust that intuition. When we went back inside to fill out papers and get a session with the pup, they informed me that someone had just called and put the dog on hold for 2 days. I wasn’t even allowed to have a session with her, because technically they owned her now that they put her on hold. So we left.

On the way home, I told my daughter that if that little puppy was meant to be ours, then she will go off hold, and we will get her. Once again, I had to trust that feeling that I know what is right, is what will be. The next night at the time the shelter closed, I called them. The puppy had just gone off of the hold  status. They opened at noon the next day, and I was there with my mom shortly after noon. I was able to get a session with her, but while waiting, I had a lady come up to me and ask me if I had my heart set on her, because she was also interested in her. I told her that I did. I realized that if I had arrived 5 minutes later, I wouldn’t have gotten my dog. When I finally was able to meet her, she leaped into my lap! Well, that’s exactly what my last dog did, and I knew this was definitely my dog! My PUPPY! It was “meant to be”!

So, we’ve had “Nilla” for about 2 weeks now. I’m in love with this little dog. Even though I never wanted a puppy, she’s so perfect! She’s very friendly, happy, playful, rambunctious, smart, and so loving. She takes at least 2 naps a day, and so I do, too! Haha!

I have realized that Nilla is actually providing therapy for me! I am her main playmate, therefore, we are outside a lot! She loves to fetch, and actually even brings it back to me! Throwing the toys, I use my right hand, which is the side affected from the stroke. She doesn’t care if I throw it weird or crooked. One of the exercises that I’ve done in therapy is to throw a small ball against the wall and catch it. So, I do that with Nilla. She has a Frisbee-type of toy that is definitely a challenge for me throw, but I do it! Squatting down to be at her level is therapy. Getting up from that squat is even better! I do that a hundred times a day, I bet! It’s got to start getting easier!

A weird thing that has affected my right side is rhythm. What I mean by that, is when you knock on a door there’s a rhythm to that knock. I don’t have that rhythm on my right side. To tap on my legs to call the pup over to me, is therapy, to get the rhythm down. Tapping my foot to call her over, I work on the rhythm. If I go slow, I can do it. If I try it  fast, it’s all confusing. But Nilla doesn’t care, and that’s what’s so perfect! Prying her little jaws open to get grass, dirt clods, rocks, and other things out, is therapy. I make myself use my right side to get the various items out! I also make myself find reasons to tap my fingers, hand, or foot.

I am thankful for my little puppy! I never thought I’d get a puppy, but I am so happy that I did! She makes me laugh so much every day!! She helps me out, without knowing that she’s helping me with things. She is constant entertainment for all of us! She’s learning the rules, and getting better every day. I am glad that I have the time to spend with her, being consistent, and turning her into the best dog ever! She’s helping me to be the best that I can physically be, and I’m hoping that maybe I can get that rhythm back! Life is so good!

My Blood Pressure Story

People always want to know why or how I had a stroke. High blood pressure is my answer. It’s been the hardest thing for doctors to diagnose because I’m not in any risk categories. It all started in 1997. Prior to that, I always had normal blood pressure readings at the doctors office. It was never an issue.

It started after I had a few appointments to see my doctor because I had been running a fever, yet I wasn’t sick. He had me taking my temp, and I was also going in for my temp to be taken. The readings were always slightly high. He referred me to an infectious disease doctor. That scared me! He called to make my appt to make sure I was seen ASAP. They got me in quickly, but for those few days that I waited, I worried. I didn’t know what was wrong with me!

When I nervously arrived for my appt, the nurse took me in and did a blood pressure check. BP was something like 170/95. She told me to lay down, because she didn’t want me to have a stroke! (Now, I know that laying down makes your BP go up! She shouldn’t have had me do that!) At that moment, in my mind, I was thinking that I must have had something really wrong with me! I was not relaxing!! The dr came in, took my temp, and told me it was normal. What my dr had been using was the ear thermometer, and I was too! This dr used an oral thermometer. He told me that the ear ones ran a little high. OMG! All this time, I never had a fever! His main concern now, was my BP! He wanted me back to my regular dr ASAP.

All of the stress kind of made a phobia for me about having my BP taken. It would be around 150/90 for several weeks. He put me on BP meds. I almost fainted several times after trying them. He then sent me to a cardiologist. The heart dr ran tests, and concluded it was “white coat syndrome”. Meaning, my BP went up whenever they took it, but I didn’t walk around with high blood pressure. Made perfect sense. I have never been overweight, have always had perfect cholesterol, never smoked, and would only drink occasionally. I was not a candidate for high blood pressure!

Fast forward a few years. I had a new doctor. I was still getting high BP readings. He didn’t believe that I didn’t walk around with high BP. So, he put me on meds. This time, I almost died from taking that pill! My BP went so low, I really thought that I was dying. So, he told me to stop the meds, and obviously I couldn’t have high BP. He wanted me to do hypnosis or bio-feedback. I was very open to that! I like alternative ways to treat things.

I saw a lady who was the best in that field. She was amazing! I learned so much! She could get normal BP readings from me in her office. She felt like my high readings were from a surgery that I had, prior to all of the high temperature readings. I wasn’t sure, but I knew it was possible. She went with me to my dr appt, but once again, BP was up. She was too expensive for me to keep seeing, since insurance didn’t cover that type of thing. So, I was on my own to get control of it, with the things that she had taught me in our sessions.

I was a mystery to all of the doctors. They could never figure it out. As the years went on, my BP readings were getting higher. I always wondered if I would ever know if I truly had high BP or not. It bothered me, but I still would feel the panic when the BP cuff came out. I felt an adrenaline rush every time. I was always happy when they wouldn’t take my BP!

Fast forward to Sept 2010. I had to have a minor surgical procedure that required me to be knocked out. I knew my BP would be an issue! The anesthesiologist came to see me in the holding area before surgery. He didn’t want to do the surgery because my BP was too high. 232/110. He wanted me to see a heart dr. He recommended the cardiologist that I had seen before. He’s the best. So that’s what I did. He ran every test known to man! Every test came back negative. The final test was an ultrasound of my heart. It would tell him, conclusively, if I was walking around with high blood pressure. If I was, there would be a thickening of the heart. Well, guess what? No thickening. I was not walking around with high BP! BUT, he said that because my BP readings were so high, he had to put me on meds. That was fine, and almost a relief. I was hoping that maybe I would start to get normal readings.

It took 3 months to get used to the meds. Readings were still high, but he felt that it was better than it was before. I finally had surgery in Dec of that year. The anesthesiologist was still concerned, because while I was under the anesthesia, my BP was never under 140/95. It should have been way lower! I told my dr, and he said everything had been checked, and there were no issues.  He wanted me to stay on the meds, because it would prevent me from having a stroke! Yes, he really said that! So I stayed on the meds, and 3 months later I had a hemorrhagic stroke caused by high blood pressure!!

While in the hospital they ran tests, and also looked at the results from all of the tests that I did 6 months prior. They also studied the heart ultrasound, and came up with the same conclusion. They repeated some of the tests. Everything was perfect! I’ve had amazing doctors! My endocrinologist is still digging for rare things that could be wrong, but so far he’s found nothing. I take 3 different BP pills a day to keep my blood pressure down. I can still spike a good one in certain situations. I have different meds for that, to bring it down quickly.

I’ve learned how to not stress over things. I know how to “let it go”! My life is too important to take a chance on another stroke, because of something that’s out of my control. I truly know what matters, and have my life in perspective. I feel very peaceful. I’ve always been a happy and positive person, and I feel even more happy and positive than ever! Even with the side effects that I still have from the stroke, I know it’s temporary, and will just get better with time.

So, for the most part, my BP is under control. Why I have it, is still a mystery. Until they figure it out, I will continue to eat well, take my meds, be as stress-free as possible, and love my life because it’s great!