Stroke

Posted by mkf1 @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.

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

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

mlmcg

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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

– about PTSD, https://connect.mayoclinic.org/discussion/anyone-else-with-ptsd

– this is about dissociative identity disorder, but many here have experienced past abuse, https://connect.mayoclinic.org/discussion/dissociative-identity-disorders-d-i-d

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@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

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Yes, I am a high functioning stroke victim. I had my stroke about 1 1/2 years ago. I was also born with Cerebral Palsy. If you need daily assistance, contact your local United Way information and referral service, call a local In Hpme Assistance Agency, or ask your doctor for a referral. Assuming that you have insurance, contact your insurance company and ask for an evaluation for personal assistance.

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@emgold2013

Yes, I am a high functioning stroke victim. I had my stroke about 1 1/2 years ago. I was also born with Cerebral Palsy. If you need daily assistance, contact your local United Way information and referral service, call a local In Hpme Assistance Agency, or ask your doctor for a referral. Assuming that you have insurance, contact your insurance company and ask for an evaluation for personal assistance.

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I know that there are high functioning stroke victims, I knew there just had to be. Thank you for being one. I must have found a very determined person who not only had a stroke but was also born with CP. If you were determined to function with Cerebral Palsy you would also be determined to function with a stroke and CP. Congratulations! Now if more people would not give up on themselves when they heard someone say "You had a stroke" or if the staff would not give up on then either. That way more people would become high functioning stroke victims and not chair bound, or bed, for the rest of their lives.

As long as I do not qualify for physical therapy anymore, sometimes I find it hard to leave my chair. My body reminds me to stretch in the morning, or sitting in front of the computer as I am reading something. I am still having trouble with my balance, not the kind where I might trip and fall – because my inner balance is very, very good. The balance I have trouble with, is when I am walking on carpet with lots of people or things in my way. My home is stroke friendly, I have areas that I do not go into very often so my walker goes with me. Walking on sidewalks with bumps and cracks requires a walker or an escort. Getting in and out of cars is very challenging. Some cars are very low then some are very high and some are just right. I have even gotten in and out of trucks. When you depend on others (wonderful friends) to drive, you take what you get. Today it was a low car, when her husband drives me it is a high car. Getting in the passenger side, or the back seat, is nothing like getting in the drivers side. On the drivers side you have the steering wheel to help, there is nothing on the passenger side or back seat to help. Even the seatbelt is on a different side. Between age and two strokes I do not plan on driving again, I've give away my car.

The insurance I have is one I wish everyone could have. It is only in limited places but very popular where it is. If a doctor request something for you, you get it. Cosmetic surgery is not covered, unless it is for medical reasons. Breast reductions they might do if it causes your back pain but if you want to have your breast enlarged you have to go off sight and pay for it.

mlmcg

REPLY
@mlmcg

I know that there are high functioning stroke victims, I knew there just had to be. Thank you for being one. I must have found a very determined person who not only had a stroke but was also born with CP. If you were determined to function with Cerebral Palsy you would also be determined to function with a stroke and CP. Congratulations! Now if more people would not give up on themselves when they heard someone say "You had a stroke" or if the staff would not give up on then either. That way more people would become high functioning stroke victims and not chair bound, or bed, for the rest of their lives.

As long as I do not qualify for physical therapy anymore, sometimes I find it hard to leave my chair. My body reminds me to stretch in the morning, or sitting in front of the computer as I am reading something. I am still having trouble with my balance, not the kind where I might trip and fall – because my inner balance is very, very good. The balance I have trouble with, is when I am walking on carpet with lots of people or things in my way. My home is stroke friendly, I have areas that I do not go into very often so my walker goes with me. Walking on sidewalks with bumps and cracks requires a walker or an escort. Getting in and out of cars is very challenging. Some cars are very low then some are very high and some are just right. I have even gotten in and out of trucks. When you depend on others (wonderful friends) to drive, you take what you get. Today it was a low car, when her husband drives me it is a high car. Getting in the passenger side, or the back seat, is nothing like getting in the drivers side. On the drivers side you have the steering wheel to help, there is nothing on the passenger side or back seat to help. Even the seatbelt is on a different side. Between age and two strokes I do not plan on driving again, I've give away my car.

The insurance I have is one I wish everyone could have. It is only in limited places but very popular where it is. If a doctor request something for you, you get it. Cosmetic surgery is not covered, unless it is for medical reasons. Breast reductions they might do if it causes your back pain but if you want to have your breast enlarged you have to go off sight and pay for it.

mlmcg

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As far as helping you to get in and out of cars, look on the internet for car swivel cushions. You can even do a car seat swivel cushion rating and reviews search so you can compare the cushions and see which one might work best for you. They mostly cost less than $30 and are portable so you can move them from car to car. For your husband's car, it can be modified with a handle to help you get in or there are automatic car seats that will extend out from the car and retract once you are seated. They are expensive but your insurance may pay for the modification. I would also contact your local Center For Independent Living and see if they can provide assistance.

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@emgold2013

As far as helping you to get in and out of cars, look on the internet for car swivel cushions. You can even do a car seat swivel cushion rating and reviews search so you can compare the cushions and see which one might work best for you. They mostly cost less than $30 and are portable so you can move them from car to car. For your husband's car, it can be modified with a handle to help you get in or there are automatic car seats that will extend out from the car and retract once you are seated. They are expensive but your insurance may pay for the modification. I would also contact your local Center For Independent Living and see if they can provide assistance.

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Thank you for your suggestions about the swivel cushions. I will consider what you said.

mlmcg

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@jenniferhunter

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.

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@jenniferhunter Hello Jennifer:

I just now read your post and did look up a Pete Huttlinger Youtube video about his recovery from his stroke. He really had an amazing attitude and recovery. Here is a link to one of his last interviews before he passed,

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@hopeful33250

@jenniferhunter Hello Jennifer:

I just now read your post and did look up a Pete Huttlinger Youtube video about his recovery from his stroke. He really had an amazing attitude and recovery. Here is a link to one of his last interviews before he passed,

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Thanks, Teresa for posting this! I also wanted to mention that Pete wrote a book about his medical journey and recovery from a stroke and learning to play guitar again after that happened. It talks about his serious heart defect and how he was the first person who lived with a heart pump installed permanently. It's called "Joined at the Heart" and he wrote it with his wife Erin. It is available on his website. He died soon after the book was released. I found it very helpful to me in confronting my own medical challenges with spine surgery. He had also done some speaking engagements for the Heart Association. His motto was not just to live, but Live Well! Here's a link-

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@jenniferhunter

Thanks, Teresa for posting this! I also wanted to mention that Pete wrote a book about his medical journey and recovery from a stroke and learning to play guitar again after that happened. It talks about his serious heart defect and how he was the first person who lived with a heart pump installed permanently. It's called "Joined at the Heart" and he wrote it with his wife Erin. It is available on his website. He died soon after the book was released. I found it very helpful to me in confronting my own medical challenges with spine surgery. He had also done some speaking engagements for the Heart Association. His motto was not just to live, but Live Well! Here's a link-

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@jenniferhunter
Thanks again, Jennifer. What a remarkable story about "living well" in spite of serious health problems!

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@jenniferhunter

Thanks, Teresa for posting this! I also wanted to mention that Pete wrote a book about his medical journey and recovery from a stroke and learning to play guitar again after that happened. It talks about his serious heart defect and how he was the first person who lived with a heart pump installed permanently. It's called "Joined at the Heart" and he wrote it with his wife Erin. It is available on his website. He died soon after the book was released. I found it very helpful to me in confronting my own medical challenges with spine surgery. He had also done some speaking engagements for the Heart Association. His motto was not just to live, but Live Well! Here's a link-

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I just finished watching the video, I'm not sure which I enjoyed the most the "story" or the "music". Thank you for posting it. It is always wonderful to know that I am not the only one. I almost want to get out and walk. Who knows what will happen. I am at one of those forks in the road and as before I will move on. Thank you.

mlmcg

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Good to hear, @mlmcg

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