Results 1 to 8 of 8

Thread: 14 years...

  1. #1
    Distinguished Community Member
    Join Date
    May 2008
    Posts
    808

    Default 14 years...

    Today is 14 years since Kathleen's first stroke and diagnosis of moyamoya. At just 4 years old I couldn't have imagined hearing the words " your daughter has had a stroke" the kind of words that make your knees buckle. We were lucky to get a diagnosis so quickly. The course of the disease is progressive and unpredictable.For her it progressed very quickly. In the following 3 months she suffered several strokes, including a stroke in the car on the way to Boston Children's Hospital for surgery. The vision of her succumbing to a stroke and the helpless feeling will never fade. As it takes the movement of a limb, her smile and her speech. It stands as a reminder to be thankful for what we have today.Life changing for sure... But it didn't take her spirit, or her determination. Thankfully her crooked smile returned even brighter than it had been before her strokes. I found this picture in an old book of Kathleen when she was in the rehab. hospital after her most severe stroke and surgeries. It was about 3 weeks post stroke and she was finally able to sit up with little support. She's come a long way and the fight continues every day for her, always with a smile. She's my HERO!WP_20160114_001.jpg



    Mary Grace

  2. The following user says "thanks"


  3. #2
    Distinguished Community Member
    Join Date
    Jan 2009
    Posts
    1,211
    Blog Entries
    17

    Default

    Wow! I had no idea Moyamoya was progressive. I'm so sorry you had to go through all of that! I am so glad she managed to survive so many strokes! Just one is bad enough! I understand a teeny tiny bit of the feeling you felt with the diagnosis. When my teacher messaged me saying "I'v had a stroke" I read it over and over because I did not believe what I was hearing. It didn't seem possible. I asked myself over and over "Did he say STROKE?!" Then it hit me and I was like "WHAT?! NO! Oh my God! No! Not him, this can't be happening!" For a mother it must be a thousand times worse! You actually witnessed a stroke in the car? How awful! I never saw my teacher's stroke but one of his first dizzy spells was bad and I still have the image of it burned into my brain. I can't get the image of him struggling out of my mind no matter what I do! He looked up at the ceiling with his mouth half open and then his eyes shifted back and forth super fast. I thought it looked like a sezuire or the beginning of one. I honestly didn’t know anything about what a seziure looked like so I was very afraid because I was completely alone with him and feared I might have to move him to protect him from injury. I have lifted someone of his size with Cerebral Palsy but wasn’t sure if I’d be able to help my teacher if it got worse. I was ready to call 911. He got very pale like he was on the verge of passing out. I thank god I was there in case he had passed out. I don’t know if anybody would have found him in time if he had passed out. Luckily he has never passed out. It was AWFUL to stand there helplessly as he struggled. He was still speaking clearly and was lucid during all of this which almost made it even more disturbing. He smiled and refused my help and the next day he looked totally fine. When I asked him what happened he told me he had gotten dizzy from exhaustion from the stroke. I was like WHAT THE HECK??!! WHAT WAS THAT?! to myself silently. I never want to see anything like that ever again! Like your beautiful daughter the stroke did not take his spirit. Your daughter is so brave and strong!!! I hope she knows how amazing she is! She is a bright light of sunshine in this crazy world. Hearing her story helped me realize my teacher would be okay. You helped me so much! I think your posts here helped me not panic or scream when he had that spell. THANK YOU!! Indeed people don't realize strokes can happen at any age. There are even cases of Cerebral Palsy that are caused by strokes. The picture is quite amazing! She’s so cute. My teacher makes that expression and moves his head to the side in the same way as Kathleen in the picture. Particularly when he is not actively focusing. He head just leans to the side and his mouth opens. Is that from the stroke(s)??? Or meds??
    Last edited by funnylegs4; 01-18-2016 at 10:30 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  4. #3
    Distinguished Community Member
    Join Date
    May 2008
    Posts
    808

    Default

    Funnylegs, I'm glad to hear that sharing my experieences have helped you to cope with your teachers stroke. Watching what happened to your teacher sounds very scary, I'm sure it made him a little less nervous knowing someone who cared was with him. It's all new to him also so probably a little scary when he's not feeling 100%. I watched Kathleen go through several strokes. After the first one I slept with her at night because I was scared she'd have one at night. Well she did but I didn't even know it. She didn't even realize it, she woke up got out of bed and went to the refrigerator and tried to lift her right arm to open it and couldn't move it. I knew right away what had happened but she just switched arms and went on. Took her to the ER of course and she had had a stroke. After her first neurosurgery she was doing good and then one morning she started drooling and had a hard time eating, then trouble talking,then she just started to cry uncontrollably scratching at her face.She just stopped moving her body at all and went unconscious. An MRI showed a large stroke on the right side and lots of small ones on the left. We didn't know if she would sop breathing or wake up. She did the next day and she couldn't talk or move her left side at all. She was trying to tell me something and finally signed the word red and I knew she wanted a popcycle (she had been eating lots of red ones). I knew then that she would be OK... Watching this happen to her in one of the best hospitals in the country made me realize how helpless even Dr.s could be... They couldn't stop the strokes we all just waited it out... and prayed... Kathleen still shows greater weakness when she's tired, her head droops more and she may even drool a little. One thing I would tell someone who has had a stroke is to rest when their body tells them to. Kathleen needed a lot of sleep and still does. She would sleep for 12-13 hours at night and still need to rest. She sleeps 11-12 hours still. Also stay hydrated and eat good. I hope you can continue to support your teacher it's hard to find someone who really gets it. Keep us posted if you can.
    Mary Grace

  5. The following user says "thanks"


  6. #4
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,040
    Blog Entries
    1

    Post

    ((((((Mary Grace & Kathleen)))))) ~

    What a milestone! Fourteen years ~ and here is your beautiful girl blossoming, learning to walk again after her surgery, and she doesn't just smile ~ she beams! She lights up the room!

    It's impossible to erase those painful memories, and the annual date of the crisis is particularly emotional. And it is, as you said, a reminder of the tremendous progress Kathleen has made through these 14 years. She is definitely a trooper!

    She also has a wonderful Mom, Dad, Sister, Brother, and loving family, friends, teachers, therapists, doctors, surgeons, etc. All of you played a very important part in helping Kathleen achieve the goals she has reached today.

    I feel like Kathleen's courage gave you the courage to keep fighting for her. And I understand that completely, and I agree with you that Kathleen is a HERO!

    May everything in Kathleen's world keep getting better and better for her ~

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  7. The following user says "thanks"


  8. #5
    Distinguished Community Member
    Join Date
    Jan 2009
    Posts
    1,211
    Blog Entries
    17

    Default

    Quote Originally Posted by mg12061 View Post
    This quote is hidden because you are ignoring this member. Show Quote
    Funnylegs, I'm glad to hear that sharing my experieences have helped you to cope with your teachers stroke. Watching what happened to your teacher sounds very scary, I'm sure it made him a little less nervous knowing someone who cared was with him. It's all new to him also so probably a little scary when he's not feeling 100%. I watched Kathleen go through several strokes. After the first one I slept with her at night because I was scared she'd have one at night. Well she did but I didn't even know it. She didn't even realize it, she woke up got out of bed and went to the refrigerator and tried to lift her right arm to open it and couldn't move it. I knew right away what had happened but she just switched arms and went on. Took her to the ER of course and she had had a stroke. After her first neurosurgery she was doing good and then one morning she started drooling and had a hard time eating, then trouble talking,then she just started to cry uncontrollably scratching at her face.She just stopped moving her body at all and went unconscious. An MRI showed a large stroke on the right side and lots of small ones on the left. We didn't know if she would sop breathing or wake up. She did the next day and she couldn't talk or move her left side at all. She was trying to tell me something and finally signed the word red and I knew she wanted a popcycle (she had been eating lots of red ones). I knew then that she would be OK... Watching this happen to her in one of the best hospitals in the country made me realize how helpless even Dr.s could be... They couldn't stop the strokes we all just waited it out... and prayed... Kathleen still shows greater weakness when she's tired, her head droops more and she may even drool a little. One thing I would tell someone who has had a stroke is to rest when their body tells them to. Kathleen needed a lot of sleep and still does. She would sleep for 12-13 hours at night and still need to rest. She sleeps 11-12 hours still. Also stay hydrated and eat good. I hope you can continue to support your teacher it's hard to find someone who really gets it. Keep us posted if you can.
    Mary Grace
    Thanks so much Mary Grace! Unfortunately strokes can happen at any time. I have heard people call strokes that happen at night "silent stroke" but I am not sure if that is the proper term. I'm so sorry! That sounds utterly terrifying! Thank god she woke up! I'm surprised they did not do something before she got to the point of unconsciousness but I saw a medical show made in the UK where a woman was having a stroke and the docs had to just let the stroke happen because they couldn't give her TPA. My teacher had TPA and other heavy meds in him right after the stroke so that's why he was really knocked out the first time I heard from him. Did they even attempt to prevent the damage with blood thinners? Does she have motor issues on both sides? My teacher handled his spells so calmly. I am utterly amazed he did not panic. It gave me so much respect for him! I want to be level headed and patient like him when I'm older.I think my teacher was relieved I was with him just in case he got overwhelmed, but I think he was also a bit embarrassed that a student had seen him in that highly weakened state. It's hard for him to be vulnerable. Is there a way to help him not feel embarrassed???? Any ideas? The day after that dizzy spell he asked me if I wanted help with my crutches sort of as a way to say "See? I'm okay now. Let me return the favor?" He would always take care of us before dealing with whatever symptoms were going on in his own body. I did get an update from him today. His new job is going well. He is working shorter hours so he finally seems to realize he needs to rest and save his energy. Thanks for the suggestions! They are spot on. As far as I know he hasn't had any really bad dizzy spells since starting the new job. I'm always relieved to hear from him! I second everything Rose said! Kathleen is indeed a trooper!
    Last edited by funnylegs4; 01-21-2016 at 05:31 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  9. #6
    Distinguished Community Member
    Join Date
    May 2008
    Posts
    808

    Default

    Funnylegs, Thank you for your kind words. Because Kathleen's strokes wer from moyamoya there really wasn't anything they could do to prevent or stop it at the time. She was just a few days out of surgery and facing a second surgery in a couple days so blood thinners would have put her at risk for uncontrolled bleeds. The progression of the moyamoya causes occlusion of the main arteries in the brain. It also causes the brain to grow very fragile tiny new vessels that can rupture very easily and bleed. The arteries aren't actually blocked they get smaller so there's not a blockage to clear or any way to make them larger. Kathleen has motor issues on both sides but her left is the worst. After the strokes the first thing we did in therapy is to teach her that she had a left arm and leg and to look to the left not just the right.
    I'm glad your teacher is doing well. I think as he comes to terms with any limitations he will not feel embarrassed about it, also your calm reactions will help him to come to terms with any limitations. I'm not sure if I mentioned it before but the book By Jill Bolte Taylor A Stroke Of Insight, is great because she talks how to react to the "new" person a stroke survivor becomes. It's a really easy read and very short. Keep us posted on his recovery... By the way do you know if he has joined a stroke survivor online group. Can I ask his age? I belong to a Young Stroke Survivors facebook group which actually is people up to 40-50 years old.
    Rose, Thank you for your very kind words! I am thankful everyday that she is with us. She has made me a better person for sure.
    Mary Grace
    Last edited by mg12061; 01-22-2016 at 05:58 AM.

  10. The following user says "thanks"


  11. #7
    Distinguished Community Member
    Join Date
    Jan 2009
    Posts
    1,211
    Blog Entries
    17

    Default

    Quote Originally Posted by mg12061 View Post
    This quote is hidden because you are ignoring this member. Show Quote
    Funnylegs, Thank you for your kind words. Because Kathleen's strokes wer from moyamoya there really wasn't anything they could do to prevent or stop it at the time. She was just a few days out of surgery and facing a second surgery in a couple days so blood thinners would have put her at risk for uncontrolled bleeds. The progression of the moyamoya causes occlusion of the main arteries in the brain. It also causes the brain to grow very fragile tiny new vessels that can rupture very easily and bleed. The arteries aren't actually blocked they get smaller so there's not a blockage to clear or any way to make them larger. Kathleen has motor issues on both sides but her left is the worst. After the strokes the first thing we did in therapy is to teach her that she had a left arm and leg and to look to the left not just the right.
    I'm glad your teacher is doing well. I think as he comes to terms with any limitations he will not feel embarrassed about it, also your calm reactions will help him to come to terms with any limitations. I'm not sure if I mentioned it before but the book By Jill Bolte Taylor A Stroke Of Insight, is great because she talks how to react to the "new" person a stroke survivor becomes. It's a really easy read and very short. Keep us posted on his recovery... By the way do you know if he has joined a stroke survivor online group. Can I ask his age? I belong to a Young Stroke Survivors facebook group which actually is people up to 40-50 years old.
    Rose, Thank you for your very kind words! I am thankful everyday that she is with us. She has made me a better person for sure.
    Mary Grace
    You’re very welcome Mary Grace! Interesting. I had to teach my brain that some of my body parts existed too so I relate to what Kathleen went through. I googled moyamoya but I didn’t understand all of what I was reading. What I read said that clots get stuck in the narrowed vessels so that's why I asked about blood thinners. Thanks! So there’s absolutely nothing that can help with the condition itself? It just keeps progressing? I plan to read that book someday soon. Sounds interesting! I'm NOT, I repeat, NOT criticizing you! But I don't understand that "new person" thing I see everywhere because my teacher isn't a new person. He just has new needs and probably grew from the experience as I did. Does that mean "new person"???? Hearing "new person" all the time was why I was so freaked out and terrified about what might have happened to him after the stroke and kept posting rants in the update threads. It's all very confusing to me! I do certainly understand what you mean in the context of your post though. No offense intended! Thanks again! I honestly don’t know how old my teacher is. I know he has adult children. I’m not sure if I should ask him his age. He looks very young. I thought he was like 46. After the stroke some of his dark hair had turned gray. Perhaps the strain and shock his body went through caused his hair to gray slightly? I asked him if he wanted links like that and he said I could send them but I am not sure if he joined any groups or not. Thanks so much for the recommendation! It would be cool if there was a group for both stroke and diabetes for him. He'd probably like that! Can you please do me a favor and pray that the storm coming to my area does not cause trouble for my teacher? I want him to be safe!
    Last edited by funnylegs4; 01-22-2016 at 05:17 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  12. #8
    Distinguished Community Member
    Join Date
    May 2008
    Posts
    808

    Default

    Funnylegs, You did read correctly sometimes a stroke from moyamoya can be a clot and Kathleen will always be on at least aspirin. But the main issues is the occlusion of the main arteries. The treatment was the surgeries she went to BCH for. So the disease has progressed to the point those arteries are completely shut down but the surgery brought new vessels to her brain.She'll always be at a high risk for strokes. I can see the confusion with the statement "new person". I first saw it used by the stroke survivors on the group. I don't think it's meant to be literal. But maybe to help survivors accept the fact that things have changed and they will be doing a lot of things differently depending on the level of damage to their brain and where the stroke was. We were lucky and Kathleen's issues were mostly physical but some people do experience personality changes. For adults especially I think it can be difficult to accept that they need help, need to slow down, and need to do things differently. The phrase "new person" kind of lets them know changes are OK. I can also see where the phrase may scare someone, thinking the "old me" is gone... But sometimes that's true in some ways... and it's OK. New doesn't have to be a bad thing. New can also mean stronger and more determined, a new appreciation for life, or even a skill. I hope this cleared it up a little...
    Funny you should mention the grey hair. I remember after Kathleen's surgery and strokes at BCH driving home with my husband and looking at his jet black hair and seeing new grey. I know I had some but his was so obvious with the black hair. I will be keeping your teacher in my prayers to stay safe. We are so lucky we're on the edge of the winter storm on the east coast.
    Mary Grace

Similar Threads

  1. 4 years
    By Bill[uk] in forum Colloid Cyst
    Replies: 14
    Last Post: 09-26-2017, 12:02 PM
  2. I haven't slept properly for years & years!!
    By Catherine2202 in forum Sleep Disorders
    Replies: 1
    Last Post: 12-22-2013, 07:44 PM
  3. 5 Years!!!!!! :)
    By Beachgirl in forum Aneurysm
    Replies: 3
    Last Post: 01-31-2013, 02:17 PM
  4. It's been many years since I've been here...
    By Sparky10 in forum New member introductions
    Replies: 2
    Last Post: 06-28-2012, 10:53 AM
  5. Ten years with coiling
    By dawnmn in forum Aneurysm
    Replies: 16
    Last Post: 09-27-2011, 05:10 AM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •  


BTC Inc's Disclaimer and Privacy Policy

The material on this site is for information & support purposes only, and is not a substitute for medical advice provided by a licensed health care provider. Always consult your doctor before trying anything that you find online.