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mkf1
@mkf1

Posts: 2
Joined: Jun 25, 2015

Stroke

Posted by @mkf1, Mar 20, 2016

Stroke

Hello,

I am a retired female veteran who served her country in the United States
Air Force. I had a career with them, made the rank of Chief Master Sergeant
(E-9), which by law may only be attained by 1% of the enlisted force,
served 30 years, and was a Bioenvironmental Engineer. I retired in 2008.
Nine

months later I had a stroke which affected my right side. It was ischemic
and lacunar. I have still not recovered from the effects of this stroke,
although I have been in Physical and Occupational Therapy for the last 6
years. To challenge myself I attended Columbia Southern University online
and got a Bachelor’s in Science, specializing in Environmental Management
with a 3.4 GPA, after the stroke.

Prior to my stroke I had been diagnosed with Subclavian Steal syndrome on
my right side – a condition in which the main artery feeding the arm is
occluded, leading to weakness and discomfort in the arm. In order to
strengthen my right arm, I underwent surgery at Brooke Army Medical Center
in San Antonio, Texas in June 2011. Because of complications that arose
during and after surgery, I found myself in their ICU, apoxic and eventually
intubated. I lost part of my frontal lobe, leading to loss of critical
thinking skills, poor impulse control, inability to concentrate and aphasia.
I have made some progress in regaining my cognitive abilities. I now live in
Bastrop, Texas.

I am not able to use the phone so if you would just use my email I would
appreciate it.

I have been trying Veterans Administration but have gotten nowhere.

I did find a resource at Baylor Rehabilitation located in Dallas Tx for both
my stroke and Traumatic Brain Injury.

I really need this and I have tried the Veterans Administration without any
luck.

Your help in this matter would really be appreciated.

I have suffered child abuse and sexual abuse from my Dad and his father.
The abuse will be addressed at Baylor also.

REPLY

Hello I am a 43 year old female who has gone through over 3700 seizures from the left temporal lobe. What kind of progress have you made in your cognitive skills and have you found any free websites to help. I'm having problems with anomia a type of aphasia so my neurologist has referred me to an appt with a speech pathologist tomorrow,

@mkf1 l had to boots with a brain injury and just about 2wks ago they thought l was having z stroke. My pressure went up to 250, slurred speech, tremors and unable to walk. I had my 1st brain injury in 1997. And l was like you l went to college and to get a 2yr degree it took me over 10yrs because of my memory. You grade point average is wonderful. I went to school for occupational therapy assistant and while doing my clinicals l worked with people who had strokes. And when you want to use the phone weather its cell or landline you can get phones that will accommodate you. You can get voice activated and if you have trouble ed picking it up they gateways for you to get equipment for you. And what l l did to help my memory l would watch games like wheel of fortune, any game l had to really work on solving words. Cooking was another thing. I count remember what ingredients to use after l would read them. So would write it down now that may seem crazy because it was already written down. Now they have very easy appliances like the microwave, nuwave, air dryer and l use the instant pot. You might have to use your teacher to put things in or pull it out. But if someone can take you to a medical supply store they can help you. And practice using your non dominant hand. Our professor would tell us to try and use our non dominant hand so we can see how to help patients who had a strokes. But always look for voice activated supplies you need. After my brain injury l got book on cd and videos and they have equipment for you to do those things also. And from after 17yrs my memory is just like it use to be before the injury. And don't forget to pray that's the best medicine and it doesn't cost anything.

That really sucks. I had a stroke 3 years ago and it caused brain damage. I feel for you.

I must be in the wrong place, I cannot believe that in the last 2 years I am only the fifth person to add something to the Mayo Clinic Connect stroke profile. I have had the privilege of living with 2 strokes for almost 4 years, that just not seem possible. When I was discharged from the hospital they did not know if I would need Hospice or Palliative Care. I cannot qualify for any more therapy because I am too high functioning. I live by myself and do not drive.

What I would like is another high functioning stroke "victim" to share what it is like living with a stroke or strokes. Is there anyone out there?

mlmcg

@mlmcg

I must be in the wrong place, I cannot believe that in the last 2 years I am only the fifth person to add something to the Mayo Clinic Connect stroke profile. I have had the privilege of living with 2 strokes for almost 4 years, that just not seem possible. When I was discharged from the hospital they did not know if I would need Hospice or Palliative Care. I cannot qualify for any more therapy because I am too high functioning. I live by myself and do not drive.

What I would like is another high functioning stroke "victim" to share what it is like living with a stroke or strokes. Is there anyone out there?

mlmcg

Jump to this post

Welcome. You're among friends here. I had a well known friend who was able to recover from a stroke and even walk a half marathon after he did that. His story is very inspirational and I read it not only because I knew him personally, but also to help me cope with my fears of having my own surgery (which was spine surgery at Mayo). I'm talking about Pete Huttlinger, a gifted musician who was born with a very serious heart defect which ultimately caused a stroke later in life. He and his wife Erin wrote a book about his journey which talks about his struggles and victories and his choice to embrace the advances in medicine that saved his life several times. He was the first person to have an accessory heart pump installed and with that assist, he did train for and complete a half marathon. Pete was a skilled composer and performer and toured with John Denver and a really nice guy. His book talks about how he had to relearn how to play the guitar after his stroke and his thoughts about looking for the positive things in his life. You can find out about him on his website and there is a lot of YouTube on his music performance. I would recommend checking him out.

@mlmcg

I must be in the wrong place, I cannot believe that in the last 2 years I am only the fifth person to add something to the Mayo Clinic Connect stroke profile. I have had the privilege of living with 2 strokes for almost 4 years, that just not seem possible. When I was discharged from the hospital they did not know if I would need Hospice or Palliative Care. I cannot qualify for any more therapy because I am too high functioning. I live by myself and do not drive.

What I would like is another high functioning stroke "victim" to share what it is like living with a stroke or strokes. Is there anyone out there?

mlmcg

Jump to this post

@mlmcg, there are several stroke-related discussions in the Stroke & Cerebrovascular Diseases group. Here are a few more to explore:

– Cerebellar Stroke – experience/treatment/recovery https://connect.mayoclinic.org/discussion/cerebellar-stroke-experiencetreatmentrecovery/
– Stroke survivor – always hungry https://connect.mayoclinic.org/discussion/stroke-survivor-always-hungry/
– Stroke and discharge from hospital https://connect.mayoclinic.org/discussion/stroke-and-discharge-from-hospital/
– Help: I want more information about stroke rehab https://connect.mayoclinic.org/discussion/help-4/

What type of stroke did you have?

I had both strokes while I was in the hospital and I do not remember either one. I was told that a doctor was with we when I had my first ischemic stroke. When I saw the paperwork, much later, it said "Coma, Ischemic". If I were in a coma that is why I have no memory of the strokes. I remember waking up with my right hand in a fist and trouble moving my right side. I know that I had to get rid of the fist, I also knew that I had had a stroke. I do not remember if I had heard someone say I had a stroke or I just knew. My mother had died from a stroke, and I like learning, so I learned what I could about strokes after she died. I was able to work on the fist and got my fingers to straighten out, then I had another ischemic stroke and found my right hand in a fist again. It did not take as long to get my fingers to straighten out. All this was done "undercover" so no one knew how hard I worked.

I knew that I had to work to recover from my strokes, and I still have more work to do. My balance is not good so I use a walker. I plan on using the walker in public for a long time. People are less likely to bump into me. When I am around people who know I have had the 2 strokes I am comfortable to leave the walker behind, but not very far away. When shopping I use the cart as my walker and can pick up the items I want. The cart is between me and the people so they are not going to bump into me. I always have someone with me and they want to help so I let them do somethings, but I have to do some of the work or I will not improve.

Thank you for the list of items about strokes. I do not have time to look at them now and may not tomorrow but I will this week.
mlmcg

@mlmcg

I must be in the wrong place, I cannot believe that in the last 2 years I am only the fifth person to add something to the Mayo Clinic Connect stroke profile. I have had the privilege of living with 2 strokes for almost 4 years, that just not seem possible. When I was discharged from the hospital they did not know if I would need Hospice or Palliative Care. I cannot qualify for any more therapy because I am too high functioning. I live by myself and do not drive.

What I would like is another high functioning stroke "victim" to share what it is like living with a stroke or strokes. Is there anyone out there?

mlmcg

Jump to this post

Yes. I have had two strokes and was diagnosed with CAA. CAA (cerebral amaloid angioplasty) is a brain disease of the brain where blood vessels in the brain become weakened because of protein deposits. At this time it is not curable. I have a ten percent chance of having a bleeding stroke every five years. The only thing that I can do to try a prevent a reoccurrence is to keep my blood pressure as low as possible and don’t take any sort of blood thinners including baby aspirin. I have been very lucky and consider myself as being a high functioning stroke victim. Good luck to you in the future!

Other than the joys that comes along with CAA did you have any paralysis from the strokes? If so what part of your body was affected? (my right side, the strokes were in the left hemisphere) How long ago did you have the strokes? (mine were in 2014) How close together were your strokes? (mine were a month apart) Did you have any therapy and how long? (I was in rehab for 2 months, had therapy at home once a week for about 2 months, then went once a month to the clinic).

When I was diagnosed with stage 4 lymphoma in 1975 they told me it was not curable, the best they could ask for was dormancy and to get me down the road 20 years. So when doctors tell us something is not curable they are at least one year behind the times. Unless doctors are doing the research themselves they hear about what is going on at the same time we do, on the nightly news.

What is meant by keeping your blood pressure as low as possible? The new normal, I think, is 120/80. If our blood pressure gets too low we can pass out. Do you take your own blood pressure so you know if it is high or not? Have protein deposits been found in any other part of your body? (that is something I know nothing about) I don't consider myself high functioning I was diagnosed as high functioning stroke patient/victim. I am better than I was 6 months ago and I hope I am better in another 6 months. Unfortunately, not everyone works hard to recover from a stroke, they want that magic wand waved over them to take the stroke away. You sound as if you are working to "take your strokes away". Good luck.

mlmcg

@mlmcg

Other than the joys that comes along with CAA did you have any paralysis from the strokes? If so what part of your body was affected? (my right side, the strokes were in the left hemisphere) How long ago did you have the strokes? (mine were in 2014) How close together were your strokes? (mine were a month apart) Did you have any therapy and how long? (I was in rehab for 2 months, had therapy at home once a week for about 2 months, then went once a month to the clinic).

When I was diagnosed with stage 4 lymphoma in 1975 they told me it was not curable, the best they could ask for was dormancy and to get me down the road 20 years. So when doctors tell us something is not curable they are at least one year behind the times. Unless doctors are doing the research themselves they hear about what is going on at the same time we do, on the nightly news.

What is meant by keeping your blood pressure as low as possible? The new normal, I think, is 120/80. If our blood pressure gets too low we can pass out. Do you take your own blood pressure so you know if it is high or not? Have protein deposits been found in any other part of your body? (that is something I know nothing about) I don't consider myself high functioning I was diagnosed as high functioning stroke patient/victim. I am better than I was 6 months ago and I hope I am better in another 6 months. Unfortunately, not everyone works hard to recover from a stroke, they want that magic wand waved over them to take the stroke away. You sound as if you are working to "take your strokes away". Good luck.

mlmcg

Jump to this post

My strokes were about a year a part. I did about six months of in house physical therapy with home therapy afterwards. I am currently functioning pretty well. My blood pressure has been below the norm (110/70) with the help of blood pressure meds and no blood thinners including baby aspirin. I feel light headed most of the time, but have learned to live with it. Also, since having the strokes, my wife said that I have become mean. I am on anti depressants which she says helps. I have a Fitbit and walk 10,000 steps a day. I also try and lift light weights. I have also made arrangements with a local neurologist who I hope will keep me current on any new procedures regarding a cure. I also check the internet regarding work being done on finding a cure. Other that that I keep my fingers crossed that I don’t have anymore strokes. As I have mentioned before I have been told by the people at Mayo, Rochester, MN that past experience suggest that I will have a ten percent chance of having another one each year. As I like to say I have a ninety percent chance of not having one. Hope I may have helped you. Good luck to you in a long future!

@thomaslmason

My strokes were about a year a part. I did about six months of in house physical therapy with home therapy afterwards. I am currently functioning pretty well. My blood pressure has been below the norm (110/70) with the help of blood pressure meds and no blood thinners including baby aspirin. I feel light headed most of the time, but have learned to live with it. Also, since having the strokes, my wife said that I have become mean. I am on anti depressants which she says helps. I have a Fitbit and walk 10,000 steps a day. I also try and lift light weights. I have also made arrangements with a local neurologist who I hope will keep me current on any new procedures regarding a cure. I also check the internet regarding work being done on finding a cure. Other that that I keep my fingers crossed that I don’t have anymore strokes. As I have mentioned before I have been told by the people at Mayo, Rochester, MN that past experience suggest that I will have a ten percent chance of having another one each year. As I like to say I have a ninety percent chance of not having one. Hope I may have helped you. Good luck to you in a long future!

Jump to this post

It is good to hear that you know that the opposite of 10% is 90%. Not everyone figures out that if we are told that we have a 50% chance of rain today that we also have a 50% chance of not having rain. Have you noticed a difference in your stride after using your Fitbit? When I am rested, in the morning, I have a longer stride than at night when I am tired. I hope your experience with a neurologist is better than the one I had. Neurologist try to prevent strokes not work with those of us with strokes. If you can find someone who works with post-stroke victims please share what you can. When you said that you "feel light headed most of the time" is that the same as dizzy? Half of the meds I take can cause dizziness. I had the choice of taking an antidepressant or talk therapy. I would rather talk with someone than take another pill. My insurance covered both.

I knew when I was in the hospital that once I was sent to rehab if I did not take over my own care that I would not fully recover. Before my strokes I had purchased a copy of "My Stroke of Insight" by Jill Bolte Taylor, Ph.D. and knew what I had to do to recover from my strokes. As soon as I was able to reread the book I did.

The only person I know with a stroke is not "high functioning". He has given up, never tried doing things and does not appear as if he wants to. When I knew him before his stroke he was not very active, so I guess he has not changed. The first thing I wanted to do once I was in rehab was knit. I knew that knitting would get my right hand, arm and body back to working together. I did lots of knitting and all the knitting that I did helped with my keyboard skills. The keyboard skills helped with spelling, spelling helped with writing, writing helped with reading and…. I am progressing forward and ageing backward, at least I feel I am going backwards in somethings. Like forgetting things as my friends are forgetting them, it has gotten to the point I cannot blame things on my stroke anymore, when it is my age.

Thank you for letting me blow off a little steam.
mlmcg

@mlmcg

It is good to hear that you know that the opposite of 10% is 90%. Not everyone figures out that if we are told that we have a 50% chance of rain today that we also have a 50% chance of not having rain. Have you noticed a difference in your stride after using your Fitbit? When I am rested, in the morning, I have a longer stride than at night when I am tired. I hope your experience with a neurologist is better than the one I had. Neurologist try to prevent strokes not work with those of us with strokes. If you can find someone who works with post-stroke victims please share what you can. When you said that you "feel light headed most of the time" is that the same as dizzy? Half of the meds I take can cause dizziness. I had the choice of taking an antidepressant or talk therapy. I would rather talk with someone than take another pill. My insurance covered both.

I knew when I was in the hospital that once I was sent to rehab if I did not take over my own care that I would not fully recover. Before my strokes I had purchased a copy of "My Stroke of Insight" by Jill Bolte Taylor, Ph.D. and knew what I had to do to recover from my strokes. As soon as I was able to reread the book I did.

The only person I know with a stroke is not "high functioning". He has given up, never tried doing things and does not appear as if he wants to. When I knew him before his stroke he was not very active, so I guess he has not changed. The first thing I wanted to do once I was in rehab was knit. I knew that knitting would get my right hand, arm and body back to working together. I did lots of knitting and all the knitting that I did helped with my keyboard skills. The keyboard skills helped with spelling, spelling helped with writing, writing helped with reading and…. I am progressing forward and ageing backward, at least I feel I am going backwards in somethings. Like forgetting things as my friends are forgetting them, it has gotten to the point I cannot blame things on my stroke anymore, when it is my age.

Thank you for letting me blow off a little steam.
mlmcg

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Thanks for your comments. Still working on that 90%.

I experienced a Hemmorhaggic Stroke at age 40; 7 and1/4 months after my Mother's unexpected death! It has been 17 years since my Stroke, yet it is still difficult! However, I also suffer from PTSD and know I am NOT alone and neither are yourself! We must take each day as it comes and celebrate our living in the present moment! I applaud and appreciate and thank you for both your service and bravery! Just remember that no matter what happened it wasn't your fault!
Sincerely,
Shelley Mintz

Working on your 90% is much better than working on the 10%. That could change it to 91% and 9%.

mlmcg

Several of you have talked about experiencing one or more strokes, and I am wondering how things are going. I think that others in the discussion will be interested and benefit from hearing about what you've gone through.

@thomaslmason – wondering how it's going with the lightheadedness you mentioned? Are you having any side effects with the antidepressant you are taking?

@kristibrennan – I'm sorry to hear you had a stroke three years ago. You mentioned something about resulting brain damage, and I wondered if you'd share more about what you've experienced with that?

@mkf1 – how is the rehabilitation going at Baylor? I also wanted to mention, since you talked about experiencing abuse in your past, that you might consider looking at and participating in one of these discussions on Connect:

– about whether to reveal a trauma, https://connect.mayoclinic.org/discussion/reveal-trauma/?pg=3#comment-125321

– about PTSD, https://connect.mayoclinic.org/discussion/anyone-else-with-ptsd/?pg=1#chv4-comment-stream-header

– this is about dissociative identity disorder, but many here have experienced past abuse, https://connect.mayoclinic.org/discussion/dissociative-identity-disorders-d-i-d/?pg=4#comment-115673

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