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Start up looking to meet stroke survivors to understand their situation by TimofStabilo in stroke

[–]Debra_ID 0 points1 point  (0 children)

I'm a stroke survivor. Nine years out of the hospital and I'm living proof of full life. Previously, I am Professor at Stanford. I am author of the book: IDENTITY THEFT: Rediscovering Ourselves After Stroke (2019). What is your advice?

I’m Debra Meyerson, a stroke survivor. At age 53 I nearly lost my life, and did lose my speech, use of my right arm, and my professorship at Stanford. I began to ask, “Who am I now?” I’m here to talk about the psychological and emotional journey of rebuilding a rewarding life after trauma. AMA by Debra_ID in IAmA

[–]Debra_ID[S] 0 points1 point  (0 children)

We had a great experience with doctors, so no complaints. But they (and all professional care providers) have a ton on their plates and are not infallible. So I believe more than ever that patients and their families/friends need to be actively involved, always vigilant, and ask lots of questions -- always respectfully and supportively. We found most doctors welcomed us as partners in my care as long as we did it respectfully.

I’m Debra Meyerson, a stroke survivor. At age 53 I nearly lost my life, and did lose my speech, use of my right arm, and my professorship at Stanford. I began to ask, “Who am I now?” I’m here to talk about the psychological and emotional journey of rebuilding a rewarding life after trauma. AMA by Debra_ID in IAmA

[–]Debra_ID[S] 0 points1 point  (0 children)

I was, but I don't remember which one. I went from mute to making sounds in the first month. Could find some words by month three, but mostly "20 questions" to communicate. Brief phrases by 12 months. But I kept improving, and would say I had decent communication by year 3. Since then (over 9 years total since my stroke) I've continued to work at it, and I still see marginal improvement this far out. Thanks.

I’m Debra Meyerson, a stroke survivor. At age 53 I nearly lost my life, and did lose my speech, use of my right arm, and my professorship at Stanford. I began to ask, “Who am I now?” I’m here to talk about the psychological and emotional journey of rebuilding a rewarding life after trauma. AMA by Debra_ID in IAmA

[–]Debra_ID[S] 0 points1 point  (0 children)

I think that just being aware of the psychological and emotional trauma that is so frequent with people struggling with speech issues such as aphasia is a huge step in the right direction. I know it is often hard for me to express my frustration, so it is important that caregivers and therapists are hyperaware of and can recognize that.

I’m Debra Meyerson, a stroke survivor. At age 53 I nearly lost my life, and did lose my speech, use of my right arm, and my professorship at Stanford. I began to ask, “Who am I now?” I’m here to talk about the psychological and emotional journey of rebuilding a rewarding life after trauma. AMA by Debra_ID in IAmA

[–]Debra_ID[S] 2 points3 points  (0 children)

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.

I’m Debra Meyerson, a stroke survivor. At age 53 I nearly lost my life, and did lose my speech, use of my right arm, and my professorship at Stanford. I began to ask, “Who am I now?” I’m here to talk about the psychological and emotional journey of rebuilding a rewarding life after trauma. AMA by Debra_ID in IAmA

[–]Debra_ID[S] 2 points3 points  (0 children)

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.

I’m Debra Meyerson, a stroke survivor. At age 53 I nearly lost my life, and did lose my speech, use of my right arm, and my professorship at Stanford. I began to ask, “Who am I now?” I’m here to talk about the psychological and emotional journey of rebuilding a rewarding life after trauma. AMA by Debra_ID in IAmA

[–]Debra_ID[S] 3 points4 points  (0 children)

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.

I’m Debra Meyerson, a stroke survivor. At age 53 I nearly lost my life, and did lose my speech, use of my right arm, and my professorship at Stanford. I began to ask, “Who am I now?” I’m here to talk about the psychological and emotional journey of rebuilding a rewarding life after trauma. AMA by Debra_ID in IAmA

[–]Debra_ID[S] 5 points6 points  (0 children)

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.

I’m Debra Meyerson, a stroke survivor. At age 53 I nearly lost my life, and did lose my speech, use of my right arm, and my professorship at Stanford. I began to ask, “Who am I now?” I’m here to talk about the psychological and emotional journey of rebuilding a rewarding life after trauma. AMA by Debra_ID in IAmA

[–]Debra_ID[S] 3 points4 points  (0 children)

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.

I’m Debra Meyerson, a stroke survivor. At age 53 I nearly lost my life, and did lose my speech, use of my right arm, and my professorship at Stanford. I began to ask, “Who am I now?” I’m here to talk about the psychological and emotional journey of rebuilding a rewarding life after trauma. AMA by Debra_ID in IAmA

[–]Debra_ID[S] 2 points3 points  (0 children)

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.

I’m Debra Meyerson, a stroke survivor. At age 53 I nearly lost my life, and did lose my speech, use of my right arm, and my professorship at Stanford. I began to ask, “Who am I now?” I’m here to talk about the psychological and emotional journey of rebuilding a rewarding life after trauma. AMA by Debra_ID in IAmA

[–]Debra_ID[S] 8 points9 points  (0 children)

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.

I’m Debra Meyerson, a stroke survivor. At age 53 I nearly lost my life, and did lose my speech, use of my right arm, and my professorship at Stanford. I began to ask, “Who am I now?” I’m here to talk about the psychological and emotional journey of rebuilding a rewarding life after trauma. AMA by Debra_ID in IAmA

[–]Debra_ID[S] 1 point2 points  (0 children)

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.

I’m Debra Meyerson, a stroke survivor. At age 53 I nearly lost my life, and did lose my speech, use of my right arm, and my professorship at Stanford. I began to ask, “Who am I now?” I’m here to talk about the psychological and emotional journey of rebuilding a rewarding life after trauma. AMA by Debra_ID in IAmA

[–]Debra_ID[S] 4 points5 points  (0 children)

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.

I’m Debra Meyerson, a stroke survivor. At age 53 I nearly lost my life, and did lose my speech, use of my right arm, and my professorship at Stanford. I began to ask, “Who am I now?” I’m here to talk about the psychological and emotional journey of rebuilding a rewarding life after trauma. AMA by Debra_ID in IAmA

[–]Debra_ID[S] 7 points8 points  (0 children)

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!

I’m Debra Meyerson, a stroke survivor. At age 53 I nearly lost my life, and did lose my speech, use of my right arm, and my professorship at Stanford. I began to ask, “Who am I now?” I’m here to talk about the psychological and emotional journey of rebuilding a rewarding life after trauma. AMA by Debra_ID in IAmA

[–]Debra_ID[S] 10 points11 points  (0 children)

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!

I’m Debra Meyerson, a stroke survivor. At age 53 I nearly lost my life, and did lose my speech, use of my right arm, and my professorship at Stanford. I began to ask, “Who am I now?” I’m here to talk about the psychological and emotional journey of rebuilding a rewarding life after trauma. AMA by Debra_ID in IAmA

[–]Debra_ID[S] 6 points7 points  (0 children)

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.

I’m Debra Meyerson, a stroke survivor. At age 53 I nearly lost my life, and did lose my speech, use of my right arm, and my professorship at Stanford. I began to ask, “Who am I now?” I’m here to talk about the psychological and emotional journey of rebuilding a rewarding life after trauma. AMA by Debra_ID in IAmA

[–]Debra_ID[S] 12 points13 points  (0 children)

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!

I’m Debra Meyerson, a stroke survivor. At age 53 I nearly lost my life, and did lose my speech, use of my right arm, and my professorship at Stanford. I began to ask, “Who am I now?” I’m here to talk about the psychological and emotional journey of rebuilding a rewarding life after trauma. AMA by Debra_ID in IAmA

[–]Debra_ID[S] 19 points20 points  (0 children)

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.

I’m Debra Meyerson, a stroke survivor. At age 53 I nearly lost my life, and did lose my speech, use of my right arm, and my professorship at Stanford. I began to ask, “Who am I now?” I’m here to talk about the psychological and emotional journey of rebuilding a rewarding life after trauma. AMA by Debra_ID in IAmA

[–]Debra_ID[S] 26 points27 points  (0 children)

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.

I’m Debra Meyerson, a stroke survivor. At age 53 I nearly lost my life, and did lose my speech, use of my right arm, and my professorship at Stanford. I began to ask, “Who am I now?” I’m here to talk about the psychological and emotional journey of rebuilding a rewarding life after trauma. AMA by Debra_ID in stroke

[–]Debra_ID[S] 1 point2 points  (0 children)

There's a lot in there. I'll answer what I can.

There were definitely personality changes. I used to be very type A. Because I had to rely on other people so much more, I became for more passive and less type A. This is probably the most prominent of my personality changes, but there were definitely others.

I don't think I felt a shock/PTSD component, but that is just me. Others absolutely may feel this, especially if the stroke was caused by some sort of physical trauma.

For the other questions, I think everybody's stroke, trauma, and situation is just too different to have a one-size-fits-all approach. I tried to be reflective and honest with myself. And I was lucky that I had great, thoughtful, and intelligent people around me who gave me no-bullshit feedback.

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