Hi All! I'm Debra Meyerson, a stroke survivor that is thrilled to be alive after a massive stroke in 2010. I want to share what I have learned over the last 9 years about the often forgotten emotional and psychological piece of recovering from traumatic injury such as stroke. My story is about stroke, but these lessons apply to other traumatic injury, life threatening illness, or even just adjusting to retirement or old age.

In 2010, I was a Stanford Professor, athlete, and mother to three. Then I had two strokes that nearly killed me and left me, even after three years of almost full time therapy, with significant speech and physical disabilities. Since then my life has been very different! I read every book I could get my hands on about how to physically recover from stroke. But none of them helped me understand how to cope with the emotional issues associated with my reduced capabilities. I didn't know who I was after my personal and professional life was so thoroughly upended.

I wrote Identity Theft: Rediscovering Ourselves After Stroke to help those who have suffered from stroke handle the emotional trauma more gracefully. AMA!

NOTE: All proceeds from my book go to the nonprofit: https://www.strokefwd.org/

NOTE2: My son Adam will be helping with this AMA due to my disabilities.

Proof: https://imgur.com/a/JrDC4eZ

Proof2: https://drive.google.com/file/d/14i8mHYNIEjY9Jr-5OJUQSSNaxCLUKEPQ/view?usp=sharing

Edit: starting at 3 PST. See you soon!

Edit2: This has been amazing! So many fantastic questions! I'm taking a 30 minute break, but keep the questions coming and I'll get to them shortly.

Edit3: Thanks everybody! This was such a great experience. Feel free to DM me if you have any more questions. Signing off now.

Edit4: Great to see more engagement! I'm back on and will answer some questions that came in overnight. Keep it coming!

Comments: 102 • Responses: 37  • Date: 

25fullerton130 karma

I wanted to thank you again, Debra, for your book Identity Theft. It was a game-changer for my husband, as he realized after many years, there will not be a return to what was before, but only a going forward from where he is at now. May I ask, what have been some of your sources of inspiration in your journey and how have you dealt with the grief of letting go of 'what might have been'? (oops, two questions, sorry!) THANK YOU!

Debra_ID87 karma

First, I'm so glad to hear the book helped. That truly warms my heart knowing I can make other people's lives better.

Sources of inspiration: my family first and foremost. I'm so thankful for all of them. They have really risen to the occasion. My husband has been so supportive and thoughtful. And my kids have really come together. And my mom is a total rock. And I've really leaned on some of my close friends.

Letting go: It's been super hard. And sometimes I still can't. My kids and husband were out skiing today, and I would have given my pinky to be out there with them. But I try to focus on staying positive and small wins. And on doing things that bring me joy and meaning. But it's often easier said than done.

valicat41 karma

I can't imagine how painful it must feel to have your family do things without you like that. But on the other hand, I'm so so happy we have you, of all people, to guide us through the journey of recovering from a stroke. Your voice is so valuable and appreciated

I'm autistic and one thing that's always been super interesting to me is how many symptoms autistic people have in common with stroke survivors or people with TBI. It turns out that Autism is just the brain not culling synapses in early childhood, we also now understand that when the brain undergoes a significant injury, it 'rewires' itself around the damage to work around it. We thought it was a glitch but it turns out that's a feature. Autistic brains have extra synapses already so they're just extra wired around without the damage. It's my hope that autism research and stroke/TBI research can be used to improve the lives of everyone involved

Are there any surprising/unexpected symptoms you've developed after having your strokes?

Debra_ID25 karma

That's really interesting to hear about the similarities between autism and stroke/TBI. Thanks for sharing. I will definitely read more about that.

I haven't found any surprising/unexpected symptoms as a result of my brain trying to rewire. I definitely eat more and sleep more, but I think that is because everyday activity is so tiring now. I also did a clinical study in Melodic Intonation Therapy, which basically tries to rewire the brain to speak using the part of the brain that sings rather than the normal speech area. Which is similar in theory to the rewiring that you are talking about. It didn't "cure" me, but it definitely helped.

TwinPeaks201735 karma

I saw a TED Talk by one woman who said she could no longer read numbers while she was having her stroke. Did that happen to you? Or was there some kind of symbol or sign you could no longer comprehend that you were once able to?

Debra_ID53 karma

That's a tough one. My experience, and those of most stroke survivors I have talked to, is that our memories from the actual stroke are super hazy. My brain was not working well enough for me to be that aware of exactly what was going wrong. I had a severe headache, my leg was acting weird, and my husband noticed that my speech was slurring, and that's how he realized I was having a stroke.

Now, numbers are particularly difficult for me because they are abstract.

Davidjhyatt9 karma

I saw that TED talk to, "A stroke of insight". I was curious if you saw it and how your experience realted to hers?

Debra_ID19 karma

I did see it. I think it is great that Jill Bolte Taylor is bringing so much attention to stroke and stroke recovery. My experience was very different than hers. I did not have the same clear-headed, reflective sensation that she did during or immediately following the stroke.

Her book and talk were great for thinking about the physical recovery from stroke, but I felt there was a void for understanding the emotional and psychological journey of rebuilding a meaningful life -- especially for those who were not able to make as complete a recovery as she was. That was what I hoped to fill with my book.

Tsmeuoath28 karma

I've had 3 strokes and I'm 30 years old. How do you do cope with the aspashia and memory problems?

Debra_ID25 karma

I'm so sorry to hear that! That's really tough, especially for somebody so young. Some days are easier than other. That's a really broad question, so a little difficult to answer succinctly, but here are some tips:

  1. Look forward not back, but also take time to accept the loss.
  2. Focus on small wins. They add up. Find something concrete that your father can work toward that is achievable.
  3. Recovery means focusing on the most important things in life, not regaining his old life. What gave him pleasure before? If he can't do those specific things, how else can he derive that same type of pleasure.
  4. Focus on your deepest values.

Sorry for the self promotion, but my book Identity Theft mentioned above is written basically to answer this question.

RunningMyMouth14228 karma

Recent young stroke survivor myself (3 months ago, 35 F, also athletic). I regained everything physically and verbally, minus a slight stutter. As a former athlete, how do you manage stress and/anxiety? I’m not cleared to run quite yet, but I miss the endorphins it gave me. Do you?

Debra_ID41 karma

First, sorry to hear about the stroke, but congratulations on what sounds like a largely successful recovery!

I definitely miss my old forms of exercise like running and skiing. But I've been able to find other ways to get the blood pumping -- though slightly tamer ways. I can still swim on my own, I love a good long walk while I listen to a podcast, and I stationary bike. And when we can, my husband and I will go for a tandem bike ride.

I'm definitely like you in that I need exercise to stay sane. These forms aren't perfect, but they get the job done.

RunningMyMouth14215 karma

Thanks for the response! Because I’m still so new to the stroke scene (is that even a thing?!), it didn’t even occur to me the literature that could help me post-stroke. I just ordered you book because a) I love reading, and b) it’s nice to see someone else who was young and active who persisted.

Debra_ID24 karma

The stroke scene is definitely a thing! Unfortunately, there are lots of people like us. I have met some truly amazing people in stroke support groups. I am particularly active in Pacific Stroke Association being from California.

InternetCrank25 karma

What advice would you give to someone who was single at the time of getting their injury, and doesn't really have anyone close to help them through it, and now of course finds it difficult to find a partner?

I'm mostly pretty positive about the future and found a good job I enjoy in a new place, but no one has ever asked about my disability, I guess people assume I was always like this and not still in the process of adjusting to newly narrowed abilities.

Debra_ID9 karma

Great to hear that you have such a positive outlook on things. A little difficult to respond without knowing more specifically your remaining disabilities, but I have two suggestions:

  1. I recommend looking into support groups for stroke and other related trauma survivors. I think it is an amazing place to meet people, be it friends or a potential partner.
  2. Don't be afraid to be up front with your stroke history and disability. I have found that people don't ask because they don't understand stroke not because they don't care. It's nothing to be ashamed of, and I think it is always helpful to educate more people about stroke.

Hope this is helpful!

aornek15 karma

I have 2 questions:

  1. I know strokes in different regions of the brain affect people differently, but in your case, were you aware of most of the things happening around you during/right after the stroke? Oftentimes others are so scared to find that their loved one can’t communicate with them and it’s unclear whether it’s because they can’t think and/or process information, or because they just can’t communicate back.

  2. At this point in your life, do you feel that you have complete control over your thoughts and comprehension, and it’s just a matter of communicating them? Does typing allow you to communicate much more easily than speech?

Thank you!!

Debra_ID33 karma

Long one incoming:

1) I remember having a headache and then my husband telling me my speech was slurring. And then I remember being in an ambulance to the hospital. After that it's super hazy as things started to deteriorate. I think that first 24 hours were the scariest for my family because I kept losing more and more speech and movement of my right side, and they had no idea when the slide would stop (or whether I would live) because they still didn't know what was causing the stroke. After a few days, it was pretty clear that cognitively I was mostly still there because I could make facial expressions in response to questions. (Adam here) but we were still super scared because we did not know the extent of the damage. And watching your mom not be able to say her own name, whether its cognitive or communicative damage, is still super scary. But like you said, other strokes can be totally different.

2) I think I have complete control over my thoughts. But I have had to reckon more recently that I did lose some cognition. I cannot comprehend things as quickly as I used to, and I cannot generate complex ideas like I used to. That was really hard for me to come to terms with. Typing is not easier than speaking. Aphasia impacts my ability to turn thoughts into any kind of expression, verbal or written. I usually use a dictation app to type. My son Adam is typing all this for me.

reverber815 karma

As someone who has also lost things due to life not working out, I empathize with your situation. My question to you is this: sometimes in periods of extreme change we find our true selves—do you feel like this is a period of growth / are you finding an upside to all of it?

Debra_ID26 karma

Definitely! I was giving a speech once (the best I could with my aphasia), and I said out of the blue "I'm happier now." I didn't plan it, but it was partly true.

The lows are really low. But there are a lot of things I appreciate more now. Food, for example. I used to think of food as just fuel for my body, and now I love a good dinner with a bowl of ice cream and some whipped cream for dessert. And I'm not nearly as stressed and I sleep much more. I would never wish it on anybody, but there are some silver linings.

lol_u_broke12 karma

I’m very sorry to hear that... but in a scale from 0 to 10, how stressful is not being to talk? How does it feel?

Debra_ID46 karma

At first a 10!!! My speech was extremely limited, and I couldn't get anything across. Now, more like a 5. I can usually get my point across in broken sentences. And you can say a lot without saying a lot.

But it is still incredibly frustrating and quite debilitating in a lot of ways. I wish I could speak fluently. It’s SO important. Not being able to speak fluently impacts every aspect of my life. I lost my tenure. I can’t interact with my family in the same way. If I could change one thing, it would definitely be that.

lol_u_broke12 karma

Do you think you’ll get better/ have doctors confirmed you can get better?

Debra_ID44 karma

Definitely! But progress is super slow. It's been 9 years, but I'm still improving. And that hope is essential to staying positive and happy.

There is a myth that all of the recovery happens in the first 12 months. I want to change that narrative. Stroke survivors can keep improving as long as they work toward it.

lol_u_broke9 karma

Adam, if you see this, thanks for replying! Hope your mum gets better

Debra_ID14 karma

Adam: Thanks! Me too! But she's quite the inspiration to us kids!

caseofthematts5 karma

My dad had a stroke on Thanksgiving of 2009 - he's able to move with a limp after therapy, and he had a lot of progress with speech and reading, but he's lost all motivation to improve any more. He relies on my mum and I a lot when I know he could respond or answer if he tried.

Basically I want to ask what keeps you motivated to improve?

Debra_ID6 karma

I really sympathize with him. It is incredibly tough to stay motivated all these years later. I stay motivated by my desire to continue to improve. I try to focus on small, achievable wins. For a while, I was focused on improving my speech and coordination enough so that I could get back to driving, which helped me regain a lot of independence. Once I achieved that, I refocused on the next, small incremental step that I thought could improve my life. And when I find my progress stagnating, I try to think of ways to shake things up or realign my goals to keep me from getting discouraged.

And I can't emphasize enough the importance of having my family and friends around me to support me, love me, and keep pushing me.

Mollywobbles819 karma

As a new stroke survivor (8 wks) my deficiency with speech and communication is most frustrating. My question is, does this introduce or encourage anxiety? Are there some suggestions to reduce this feeling? The complexness with planning, completing, remembering tasks and daily activities are also anxiety producing. However friends and family don’t always see these issues as symptoms or deficiencies. Thank you for your story and book it is on my reading list.

Debra_ID19 karma

Absolutely! It is very frustrating and anxiety inducing. I have two suggestions 1) try to cut back on your obligations and focus on your recovery as much as you can. This may help you recover more and maybe reduce the overall complexity in your life that is causing you stress. 2) be honest and up front with your friends and family, but try not to get frustrated with them. For people who have never been through stroke, aphasia or other cognitive deficiencies are really not intuitive.

At the risk of sounding like a lecturing grandparent, I will say that 8 weeks probably feels like forever, but you are still super early into your recovery. My best piece of advice would be to work your tail off trying to regain as much as you can because the early months are so important. Recovery doesn't end after the first 12 months like many people say, but I think it probably does slow.

Ray_Master9 karma

Have you accepted what happened properly? My grandma has had a few strokes, is there anything I can do to help?

Debra_ID7 karma

It took me a long time to fully accept what happened. There was a lot of denial for a while. But I'm in a much better place since I accepted it.

My best advice is to be there for him and love him. There are lots of books, blogs, and websites to learn how to support him better. But it's tough to give concrete advice because different people's strokes and situations are so different.

mangowithchilipowder9 karma

Thank you for doing this! You are such an inspiration. How did your doctors work with you while you were in the hospital? What kinds of things did they do?

Debra_ID14 karma

My doctors were generally fantastic (except one nurse grr). I feel really lucky about that. Frankly, I was in no condition to work with them. My husband was asking all the questions and making all the decisions for me. The doctors were doing everything they could to figure out what caused my stroke, but all the tests were coming back negative. It took them 2 months (and a second stroke) to find the carotid artery in my neck.

We learned that it is incredibly important for the survivor or a family member/friend to be your biggest advocate. You can have the best doctors in the world, but it still helps to have somebody asking lots of questions. Nobody will care more about your care than you or your loved ones.

vladcat5 karma

Did you have a carotid artery aneurysm? What do you think they could have done differently?

Debra_ID10 karma

I did not have an aneurysm. I had something called a dissection, which has essentially the same effect as a blood clot, but is far less common.

I had great care, and I can't think of anything they could have done differently to prevent the stroke or treat me in the early days. My dissection was in the neck, so all of the initial imaging we did for the head didn't show any abnormalities. This was just bad luck, and I do not blame my medical care at all.

I do wish there were more resources for the emotional and psychological side of recovery. I hope the lessons in my book can become integrated into medical care for this type of injury in the future. That is the purpose of my nonprofit https://strokefwd.org/. Sorry again for the self promotion!

thesunflowerismine7 karma

Thank you for sharing! I can't wait to read your book!

I was 29 when I had my stroke and I am almost 3 years out from it now. No physical issues other than fatigue. I struggle with short term memory loss, slow thinking, and aphasia. Some days I just can't function and I have a hard time dealing with letting yet another unsuccessful day pass by. I feel guilty for wasting this "gift" I was given and it causes a lot of anxiety.

How do you deal with letting some days pass by without feeling bad for wasting it?

I've also had a hard time explaining to people that on the outside I look fine and the same, but on the inside I'm not the person I was before. I can remember how my brain worked before my stroke but it doesn't work like that anymore. It's just... different. Most of the time people don't understand and I just roll with "if you were in my head you would get it."

How do you explain this to people without sounding crazy?

Debra_ID4 karma

Absolutely amazing question! It's like you are in my head! I still struggle with exactly these issues, so I don't have a perfect answer.

As far as wasting days, I hate this feeling as well, as I used to really value my productivity. But I try to focus on the positives. Writing my book Identity Theft (though it took 5 years and lots of help) really helped me feel productive again. I try to focus on what I still can do and not what I can't. But like you said, it's still super hard on the tough days.

It is always a challenge to explain aphasia to people who have no experience with it. I find that Aphasia Access does a far better job explaining it than I can. But it's still really hard because aphasia affects everybody a little differently. Try to be patient in explaining it, as aphasia is difficult to understand.

WaxStatue7 karma

How do you rebuild when the trauma never ends? I was a pretty successful teacher before my spinal fusion failed, now I’m a 37 year old in constant horrific incurable pain. It’s hard to find the will to get out of bed, much less try to work.

Debra_ID9 karma

I'm sorry to hear that! I'm super lucky that I don't have any chronic pain, so this isn't a hurdle I had to overcome. I think my best advice would be to keep experimenting with treatments and hopefully you will find something that helps. I know other redditors have mentioned CBD and cannabis as useful for this type of chronic pain. But try to not to give up hope, and keep focusing on the things in your life that still give you joy and meaning. Best of luck!

ehmque10246 karma

Thanks for sharing your story! It’s incredibly comforting and informative. My father-in-law survived a series of strokes last year, also with aphasia. He’s recovered remarkably well, all things considered, and we are continuing with optimism. I’ve noticed he’s also depressed, angry, grieving, and constantly frustrated by his altered speech abilities. Which is all completely understandable. We are finding our way as family and always with love.

Debra, what are your top ‘Do’s and ‘Don’ts for care givers/loved ones/adult children of survivors? Specifically curious about compassionate boundaries, appropriate challenging, and understanding and nurturing the ongoing emotional impact.

Adam, what are top tips or effective communication tools you and your family could recommend to loved ones/care givers? Specifically around compassionate boundaries, and sharing your own emotions and experiences.

Thanks in advance for all you’ve shared so far! And for considering my questions. 🙏❤️

Debra_ID10 karma

Sorry to hear about your father-in-law. This is an amazing question! You are asking all the right things, and your father-in-law is lucky to have such thoughtful people in his corner. Sounds like you guys have done your homework as well (are these topics from the Schwartz Center in Boston?) .

I'm sorry for the self-promotion (all proceeds go to a non-profit)!!! But my book (audiobook available for those with aphasia) mentioned in the description is meant to help with exactly these questions. There is a chapter dedicated to how family can best help. That being said, I'll try to answer how I can here.

Do's and don'ts can be tough because everybody's situation is so different. My number one 'Do' is to try to help them stay positive. Sometimes having somebody around to point out the good things makes a world of difference. I also know I am happier when I am with my family. And I usually really appreciate when my family pushes me to practice my speech or walk with better form. And they've learned that when I'm sucking on some sour grapes, maybe that's not the best time. My biggest 'Don't' is avoid treating him like a child. I am sometimes slower to pick things up or comprehend things, but nothing pisses me off more than when somebody treats me like a child because of my aphasia.

From Adam: I think the issues you mention like appropriate challenging and compassionate boundaries are some of the hardest issues as a caregiver. I think over time, I have learned when my mom just needs a hug and some love, and when I can be the person to help light a fire and keep motivating her to improve. But this is definitely an art not a science. But the most important thing I can do is to be there and be kind and be compassionate. I know it means the world to her. Unfortunately I live 2500 miles away from her right now, but I try to call and chat with her as often as I can.

Martymcflyjr886 karma

Hi, I’m 27 I also suffered a couple strokes after I crashed my car into a culvert 5 years ago. Do you have aphasia or apraxia? I have apraxia and after 5 years I can’t even smile on command. Life’s been challenging to say the least without your voice so I know what you’re going through. At least with the voice part

Debra_ID5 karma

I have aphasia. So sorry to hear about your crash and injuries.

sapphic-sunshine5 karma

Hi Debra, thank you for being so open with your story. I’m a stroke rehab physical therapist and I’m going to get a copy or two of your book to read and share at work!

My question is, is there anything you wished that your doctors/nurses/therapists did differently? I know (most) of my colleagues try to be as empathetic as possible towards our patients, but it’s hard to know what pieces are missing as none of us have actually had strokes ourselves.

Debra_ID6 karma

Keep up the good work! PTs have been so important to my recovery!

Most of my therapists/doctors/nurses have been fantastic. I think some caregivers could understand better just how much emotional trauma is associated with this type of injury in addition to the physical damage. I think therapists tend to be better about this than doctors because emotional state impacts recovery so much. Whereas a doctor may just be diagnosing, performing surgery, etc, so the emotional aspect doesn't seem as relevant.

Another huge issue is that emotional therapy is not covered by insurance. I think this is a big structural problem with healthcare in the US, and one that my nonprofit StrokeForward is hoping to challenge.

P0oky-Bear4 karma

What was the hardest thing you had to deal with at your lowest point? What was the first step to moving forward after that?

Debra_ID21 karma

When I lost tenure about 3 years after my stroke, that was extremely tough. I was really depressed for a while. I worked my whole life to get there, and it was all gone in an instant because a piece of my artery decided to tear. That was a tough pill to swallow.

Sorry for the self-promotion, but deciding to write my book was really the turning point. It was my way of getting back to helping people but also proving to myself that the academic inside of me wasn't totally gone. It was a really cathartic process (though very frustrating!).

Crafty-Milk4 karma

At Certain Points did you feel you wanted too... Go to a better place?

Debra_ID5 karma

I would be lying if I said it hadn't crossed my mind. That life would be easier for those around me if I wasn't here. But I have never been suicidal. Those feelings have always been short-lived and fleeting. I've had (and still sometimes do have) dark thoughts in my lows, but I feel I have built a happy life that I am very happy living.

av8ress474 karma

Hi Debra,

I'm sorry to hear about your stroke, and I'm glad to see how much progress you're making. Its very refreshing to see, in a way. My mom had a stroke at 58 in September and it seems she faced the same obstacles as you: lost speech/aphasia/apraxia and right-side paralysis. I just want to tell you that I've ordered your book and look forward to reading it with her soon, and I appreciate that you wrote it. I hope the (unforunate) similarities in stroke aftermath will help motivate her a little more.

I do have two questions. With the aphasia, do you find it difficult to comprehend letters and numbers, and what is your preferred or main way of communicating? What tricks were helpful to you while recovering from the aphasia?

Again, Debra, thank you so much for writing your book and sharing your story.

Debra_ID5 karma

Sorry to hear about your mom, and I hope the book can be helpful. To answer your questions:

  1. I have trouble with numbers, not so much letters. I can read fine.
  2. My preferred way of communicating is speech. It is still tough, especially when I am tired, but I can usually find a way to get my point across.
  3. Unfortunately, I don't really have any "tricks." It's just been a lot of hard work, practicing my speech every day, and trying to stay positive. I did participate in a clinical study in melodic intonation therapy, which I think was helpful for me, but others have had even more impressive results.

cattercorn3 karma

You are fantastic. What advice do you have for the partners or family of people going through a loss like this?

Debra_ID3 karma

That's such a tough question because everybody's stroke and family situation is so different. I think there may be some helpful stuff in my reply to ehmque1024. Happy to answer more specifics if you have any.

cattercorn2 karma

You said not to treat someone with aphasia "like a child." What does that entail? Being impatient? Talking down?

Debra_ID5 karma

When I have trouble talking, a lot of people start using the "baby voice." I understand why they do it, but it drives me crazy! You can talk slower and more clearly without talking to me like I'm a baby. I bet if babies could talk, they would tell us not to use that stupid voice too! I encourage people to talk slowly, give me time to respond without interrupting, but other than that talk to me like an intelligent adult.

I think impatience is a different issue. One that I usually find is out of lack of understanding of aphasia.

SolveFinance3 karma

What was the biggest contributor to your stroke?

Debra_ID7 karma

Bad luck. We still don't know what caused the dissection that led to my stroke. I was quite healthy, exercised a lot, and was still relatively young. But I was also very stressed with a very high pressure job, so I imagine that could have contributed.

thesalz033 karma

How would you rate your emotional awareness prior to your stroke, do you notice any differences as you’ve dealt with all the emotions post stroke?

Debra_ID3 karma

I think I was pretty emotionally self-aware before my stroke. Maybe this is one reason why I was so emotionally and psychologically impacted by the stroke. I think since my stroke, I have a new appreciation for just how important actively engaging with my emotions is. And sometimes my frustration at my disabilities makes it hard for me to manage my emotions effectively. That is an ongoing struggle that I am still working on.

Pibe_de_Oro3 karma

Hey Debra, thanks for the AMA.

My dad had a stroke 2011, which messed up his speech. Talking to him is an exercise in patience, since he uses words like Car, Boss, Best, New for everything and we try to guess the true meaning out of context.

Somedays he has a way bigger vocabulary than others. And it's totally a practice thing, he doesn't want to and just says "I am stupid now" when we try to get him to practice his speech with us.

Do you have any recommendations or tips on how to get him out of his frustration and try to get a little ambitious with his practice? Some small steps he could achieve, so he keeps his focus?

Debra_ID3 karma

Sounds like you are approaching it the right way focusing on small steps. Maybe choose some attainable things to shoot for that can be small wins. Small wins do wonders for encouragement. Hard to say what would be best without knowing your father, but some examples may include: being able to order food at a restaurant, being able to travel alone safely, deliver a short speech about his disability, participate in a support group, etc.

Some other recommendations would be to try to help him stay positive and focus on the things he can do rather than what he has lost. And try to figure out what in his life still gives him joy and meaning and find ways to emphasize these things. I know this is a lot easier said than done.

More practically, here are some things I did to practice my speech: I did rigorous therapy with a speech therapist. I skype with my mom doing speech work almost every day. I did Rosetta Stone. And I still work on it every single day. The progress is slowwww, but there is still progress.

PingpongAndAmnesia2 karma

What do you hope for? What are your plans for your future?

Debra_ID7 karma

Thanks for the easy, trivial, softball of a question. Just kidding! But its a fantastic question!

Sorry for the shameless plug here, but my husband and I created a non-profit around stroke advocacy (http://strokefwd.org/). I plan to spend 3-5 years using this organization to help others who have had a stroke cope with the emotional and psychological trauma. And then I hope to leave the organization in the hands of somebody who will carry the torch and continue to spread the message.

I also hope to stay active and continue to travel and explore with my husband and kids. We are hoping to do a cross-country tandem bike ride to promote Stroke Forward in 2021.

I also wouldn't mind some grandkids...

bobjr941 karma

Was there a reason for the strokes ? Wondering because my wife (43) has had about 6 strokes due to moyamoya and required several brain surgeries. She went though inpatient rehab twice and outpatient several different times, also couldn't talk for a month after her largest stroke.

Debra_ID1 karma

My stroke was caused by a dissected carotid artery that blocked the flow of blood to my brain. Basically an piece of an artery tore and then blocked the artery.

Very sorry to hear about your wife's strokes.

queensara331 karma

How did you cope with losing your tenure? And if it's tenure, how did they just take it away?

I had a TBI at 3 days old and I am ambitious but I am so scared my own injury will stop me from making a difference.

Debra_ID5 karma

Losing tenure was one of the hardest things in my whole recovery process. It really made me question myself, my identity, and my self worth. Losing tenure was one of the things that inspired me to write Identity Theft. It was a way to prove to myself that I was still an academic. I should clarify that I don't blame Stanford at all.

In fact, Stanford was great. They put me on academic leave for 3 years. Once it became clear that I was not going to make enough of a recovery any time in the near future to return to my full-time teaching, they really had no choice but to take away my full-time tenure role. My speech is just not up to teaching.

My bosses were very supportive and provided as many resources as they could. It was still extremely difficult for me, but I don't blame Stanford in the slightest. I still have an office and still do some adjunct work.

hwknd1 karma

With aphasia, do you think what you want to say at the same speed as before, or is it hard to think of the right words too? Is the issue translating thoughts into speech, or is it "only" the speech part that goes a bit crappy?

Did you know any foreign languages before the stroke? Are all languages you knew equally affected? If you learn a new language now, is that stored in a non-affected area of the brain, and therefore easier? Or does your brain try to store it in an affected area?

How about singing? Is that easier than speech? (I read somewhere that that's not located in Broca/Wernicke area..?)

Debra_ID3 karma

For me, it is the converting the thoughts into speech that is problematic. I can still think fine. Different people experience aphasia differently, but generally it is a problem with expression not thinking.

I used to be intermediate at Spanish, but that was equally as affected. Now I'm just sticking to English. In general, aphasia effects the expression of all languages.

Singing is very interesting, as you are right that it is stored in a different part of the brain. Immediately after my stroke, I could not say anything, but I could sing happy birthday. I also participated in a clinical study in Melodic Intonation Therapy that attempts to rewire the singing part of the brain to use for normal speech.

BigHurbert1 karma

Have you tried ingesting medical marijuana or CBD products? https://medicalmarijuana411.com/cannabis-after-stroke-can-help-recovery/

Debra_ID10 karma

I have tried both. I think the CBD oil and lotion help relax my muscles, which helps loosen my leg and arm.

From Adam -- she decided to join me for a toke of the devil's lettuce once or twice. Not sure it helped with her stroke symptoms, but was great to see my mom stoned.

Retireegeorge1 karma

Do you find you and your mission is always well received by other survivors?

Debra_ID2 karma

Overall, yes. I think some people are so deep in the depression spiral that no matter what I say, they just can't see the positives or any hope. But in general, I have been thrilled at how well received my message has been. I think caregivers have been extremely receptive to this message as well, as stroke can often be just as hard on the caregiver as the survivor.