Home – Our Stroke Recovery Journey
The purpose of this blog is to share how a stroke affected our lives, and how through our stroke recovery experience, stroke survivors, stroke victims, caregivers and others might find peace, hope and encouragement.
As the spouse of a stroke survivor, I wanted many people praying for my husband throughout his recovery process. I sent out emails to family and friends with updates of his condition with specific prayer requests. This kept them informed of his specific needs, and also kept them praying. They forwarded the emails to prayer groups, Bible studies, churches, and even coworkers; and the response was overwhelming. The recipients were being blessed as they prayed for us, and as a result of their prayers, God was moving on our behalf. They begged me to keep sending the updates.
On the suggestion of my daughter, I developed this blog to share these emails in a public forum. Please feel free to share your thoughts and questions. The chronology of events can be found in the Archives or Stroke Recovery Journal.
Here is how our journey began…
Saturday, February 23, 2008 began as an ordinary day for us. About 1:30 in the afternoon, Steve developed an unusual little cough that sounded like he had a hairball. I asked him if he was a getting a cold, and he said he didn’t know what that was. His headache came back again, too. This was three days in a row he complained about a headache. He has a very high tolerance for pain, and in the 40 years we’ve been married I knew he wouldn’t complain unless it was really severe. But he took some Tylenol and we just dismissed it.
That evening, Steve awoke at 10:00 PM from a 2-hour nap and asked me to turn the TV to the news. He didn’t look right. His face was a little droopy and he had been making odd breathing noises in his sleep.
“Are you alright?” I asked.
“I’m really thirsty, have a headache and I have to go to the bathroom,” he answered. He got up from the couch and hobbled to the bathroom using crutches to support the left ankle he had broken three weeks earlier.
I got him a glass of water and some more Tylenol, and set it down on the end table beside him as he came back in and sat down. A few minutes later, he was holding the corner of a tissue, lifting it up in front of him over and over again.
This looked so strange, so I asked, “What are you doing?” When he spoke, his speech was garbled, so I ran over to him and commanded, “Steve, look at me! Say my name!” He couldn’t do it.
My 59-year old husband was having a stroke. Immediately I called 911 because I knew time was of the essence. I heard about the clot-busting drug that could reverse the effects of a stroke if administered within 3 hours of the first symptoms. Little did I know that it was already too late.
As I explained to the operator what my emergency was, Steve objected, slurring out the words, “There’s nothing wrong with me. I’m alright.” He took a drink of water holding the glass with his right hand, and the water poured out of the left side of his mouth. It would be a week before he understood that he had had a major right-brain stroke that paralyzed the left side of his body.
In the 15-minute wait (which seemed like an hour) before the first responder arrived, I quickly called two people and asked them to pray. In the ambulance ride to the hospital 12 miles away, I called each one of our four daughters, and then called a few other friends and asked for prayer. By the time we got to the emergency room, one and a half hours had passed.
Steve was quickly evaluated by one doctor who then consulted with the neurologist on duty. They took him for an MRI to see if there was a ruptured blood vessel in his brain (hemorrhagic), or if the stroke was caused by a blocked artery (ischemic). They found that it was an ischemic stroke.
The minutes were ticking away, but determining the time of the first symptom was crucial, and I kept telling them it was at 10 PM when his speech became slurred. They said if they gave him the clot-busting drug after the 3-hour window, it would be fatal, so I had to be absolutely sure. And then they asked if he had any headache before that, and I remembered that the headaches came on earlier in the day and even three days prior. It was then that they refused to give him the drug tPA because it would cause an instant brain bleed and kill him.
Steve was admitted into ICU where he spent the next 3 days before being moved to the hospital floor. He had suffered a blockage in the large right middle cerebral artery, resulting in a major stroke that paralyzed his left side. It also caused some dysarthria—a condition affecting the muscles that control his speech and swallowing. He experienced confusion and couldn’t understand why he was at the hospital, stating that he was just fine. At times he became belligerant and insisted that I bring his crutches so he could walk out of there. He didn’t know it yet, but he couldn’t even sit without falling over, let alone stand because his core balance was affected.
Steve never felt a thing when the stroke occurred other than a headache. He expected a stroke to cause pain like he had with several heart attacks. Just like that it happened, but I can’t say it was without warning.
He had experienced several Transient Ischemic Attacks (TIAs) without realizing it, and he was in the high risk category with factors of high blood pressure, tobacco use, artery disease, high cholesterol, atrial fibrillation, inactivity and obesity. He jokes now that if he had known he was going to live so long, he would have taken better care of himself.
Continue this stroke recovery journey with us and read the next sequence of events that took place in Steve’s hospitalization and recovery process, and feel free to ask questions or comment on them.
Kathy and Steve,
This Blog no doubt will be used as a tool and tremendous help (the links are excellent) plus such encouragement and hope are poured out along w/ testimony that glorifies the Lord and draws the reader to Him.
Love,
June 12th, 2008 at 5:40 amrenee
Dear Kathy & Steve. Thank you for sharing your journey about having a stroke and surviving. Your detailing and journeling is truly God inspired and a testimoney to all who read. We continue to join with you in praying for a total recovery for Steve.. And look forward to that day. We love you both. If there is anything we can do, please do not hesitate to call. Love Julie & John
July 17th, 2008 at 6:11 amI am a 60 year young female and a 3+ year
October 2nd, 2008 at 10:15 amstroke survivor.Like so many of us, I have been forced to make a lot of adjustments to my life. The stroke affected the left side of my body, I don’t have the use of my left arm yet, however I can type with one hand. Praise God He created me right handed. Daly I discover new and more officiant ways to get things done. I love to cook tho I don’t do as much as I once did. often in the middle of something I find out I can’t( detest that word) complete “safely without help. As the other night, I baked a ham for supper but couldn’t get it out of the oven wrestling A cold pan is a lot “easier” than a hot one. So think Carla, turn the stove off, bet you had already figured that out, well me too because I’d done it before!! You know how a lot of TV Chiefs, start their dishes with what they call the trinity. ( chopped onions, celery, green peppers, and of course garlic,) Some will add things like carrots. For my soup starter or anything eith rice this is the way I
start, with the carrot I mean. This summer while visiting my brother and sister-in-law we were chopping vegetables for salsa. We were using a “Vidalia Chop gizzard” And I chopped almost all the veggies. I don’t like tooting my own horn, but sure made me fell good for something. I’ve also discovered putting a clean towel or papper towel on the cutting board stabilizes almost anything. I am anxious to hear how other survivors are conquering their their challenges.
Sincerely Carla From Missouri
Cooking isn’t my only interest
I am writing to you from Canada. My 44 year-old wife suffered an ischemic stroke on January 8th and is now in rehabilitation to regain the use of her left arm and leg.
I read your blog tonight and take comfort in knowing that others like you and your husband have gone through what we are going through right now. It’s truly inspiring to know that the Lord has ontinued work in your lives through all of this.
Thanks for taking the time to document your experiences. It’s important to my wife and I. I look forward to your next update on your husband’s progress.
February 9th, 2009 at 1:02 amKen, I’m so sorry to hear about your wife’s stroke. She is so young, so hopefully that will be on her side in her recovery. I’m glad to hear that the blog is ministering to you.
My husband is still struggling physically, but it’s the emotional struggles that are harder to deal with. He feels like he is a burden to me…like he’s not pulling his weight to help me around the house. He’s feeling useless and depression wants to set in. But truly God’s grace is sufficient for me, because I don’t feel like he’s a burden at all. I believe being his caregiver is God’s assignment for me at this time in my life, and I want to be found faithful in completing this assignment.
God’s grace is sufficient for you too Ken. The most important thing you can do for your wife is to continually encourage her, pray for her, and be optimistic. The more knowledgable about stroke that you become, the more you can help her.
Please keep me informed of her progress. I’ll be praying for both of you.
Kathy
February 9th, 2009 at 6:10 pmThanks for sharing. In August 2005 I had an AVM (bleeding stroke) when I was 49. I spent almost 5 months in the hospital and am still doing rehab re-learning to walk and talk (it is a challenge) — part of the things we take for granted. Like you I am trying to use technology and send out a monthly e-mail about the stroke and the challenges that happen after the stroke. I am just starting a blog. As a stroke survivor I know how much work is involved for everybody. The fun is just beginning! Hope you and your husband do well. Vangi Uribe
April 25th, 2009 at 12:26 pmI will keep your husband and you in my prayers. On Monday April 6, 2009, I awoke with a migraine headache. I didn’t think much about that, as I’ve suffered migraine headaches since my mid 30′s (I am now 50). I took my perscription medicine for migraine and went to work. Tuesday, I continued to feel disoriented. I was dizzy, my vision was fuzzy, almost like I’d had a couple of martini’s. Wednesday April 8th, the symptoms continued. About 2:00 p.m. that afternoon I was sitting with a co-worker and couldn’t remember who she was! I immediately called my family doctor. I saw the doctor at 4:00 p.m. that day and he scheduled me for a full work up the next morning. Before leaving his office, my doctor’s last words of advice to me were: “If things change, do not pass go – do not collect $200. Go immediately to the emergency room at the hospital in which I have scheduled your tests.” About 9:00 p.m. that night my wife and I were getting ready for bed. I looked at her and said, “You need to get your clothes back on, I just lost all feeling on the left side of my body.”
Like your husband, it was too late for me to get the tPA shot. I was given baby asprin and a shot of blood thinner. By 12:00 p.m. they had diagnosed me as having had a stroke. By 3:00 a.m. I was admitted to a hospital room. Over the next two days I went through the standard battery of tests: CAT scan with and without contrast, MRI with and without contrast, echocardiogram, and EEG. On Friday the neurologist suggested I be transferred to a rehabilitation hospital.
I spent exactly one week in the rehabilitation hospital. I knew that we had hundreds of people saying thousands of prayers for me and my family. God was merciful, each day function was returning to my left side. By the time a week had passed after the initial migraine, I had relearned to swallow and my speech was no longer slurred. By Tuesday of that week, I was walking with a cane! By Thursday of that week, I had been discharged from the rehab hospital and sent home!
Two weeks, to the day after the stroke, I returned to work. I now had a cane to help me walk, tired easily, and had to take frequent rest breaks during the first two weeks. I googled and read all I could find on stroke and stroke recovery. I continued outpatient OT and PT.
Using earlier experience as a Master Fitness Trainer for the U.S. Army, I designed a home exercise program for me. Every morning I spend the first hour doing nothing but physical training. I start with a full series of body streches, do a light lower body workout that was given to me by a PT therapist in the rehab hospital, do an upper body workout with light dumbbells, and ride an exercise bike.
It is now a just slightly less than 60 days after my stroke. I have recovered 100% of my mobility, speech, cognition, and memory! I know that this miracle is due to God’s presence and healing in my life. It is also due to the dedicated support of a loving family.
I encourage you and your husband to hang in there. Recovery is possible. Attitude is so important, for me daily prayer was critical. My wife and I also run a Christ-centered 12-step program through our church. I think getting my eyes of myself helped a lot. I encourage both of you to keep reaching out and getting support. I am just beginning to understand how dramatically my life has changed and that recovery and keeping good health will be a lifelong process.
God bless both of you.
Dan
June 3rd, 2009 at 8:02 amThank you, Dan, for your testimony of God’s faithfulness and healing, and for all your prayers and encouragement. We sure can use them right now.
Prayer and a positive, faith-filled attitude really makes a difference in the recovery process. It is truly miraculous how quickly you recovered. Thank you for sharing.
Blessings, Kathy
June 3rd, 2009 at 7:16 pmHi Kathy~
My then 4 year old daughter had a spinal stroke (she has vascular disease) last May. I also blog her recovery process.
Take care and good luck on your journey.
June 19th, 2009 at 7:23 pmHeather Alessandro
It is always interesting to read about other people who have recovered or are recovering from a stroke.
Three years ago I had a hemorrhagic stoke (a brain bleed) on a Thursday eve. I thought it was a sudden severe migraine headache. I took 4 ibuprophen and went to bed. It hurt the next day I went to work and a friend gave me an emitrex for migraines. (That could have killed me! But we did not know that.) My speech was not slurred, but I did not make sense sometimes. I could not read. I did not think there was anything wrong with me and refused to go to the Dr.
On Sunday I stayed home, Sunday PM we had company, AND I went on a bike ride later that eve. Sunday PM my sister called, which was unusual, and since she works in neurosurgery she recognized symptoms of a stroke in my voice. Her colleague called me early the next AM, asked me a couple of questions and said, “Go to the ER immediately!” That was Monday!!
July 9th, 2009 at 7:08 pmI do not recommend waiting 3 1/2 days!!!!
The ER neurologist said that I did not have a stroke. I transferred to another hospital where I rec’d the best care in neurology.
I was born with an AVM and it caused a vein to burst and bleed into my brain. I bled for 2 to 3 seconds. If I would have bled 4 to 5 seconds, it would have killed me. God was not finished with me.
Within the next two months I had brain surgery and they removed the AVM. By January I was working again. Slowly, but at least working. I have fully recovered, I run 3 miles a day again, teach classes at church, and am as “normal” as ever. Thank the Lord!!
Kathy & Steve,
July 9th, 2009 at 8:58 pmJust to let you know I will be praying for you both also, I am a caregiver for my mom who is fighting cancer now & my eyes were opened from your blog Kathy about God’s grace, I feel I was lead to your blog for me to understand this is what God wants me to do now in my time of life, take care of my mom and yes I want to do the same as you I want to complete if for our Lord, he gets all my praise, he is always there & he’ll never leave us. Thanks for sharing your story, God bless you both. Debbie
very enlightening and inspiring story. Would like to know where Kathy found the legal documents she prepared and had notarized.Would like to do the same. Thank you.
July 10th, 2009 at 9:51 amStephen,
The documents I used were modified from legal documents we hired an attorney to draw up for us about 17 years ago. My daughter and her husband also recently had an attorney draw up some papers for them, so I used some of that information too.
I painstakingly re-typed everything that was pertinent, and I also did much research online to help me understand what was needed. Once they were in my computer, I just made the necessary changes and personalized them.
There are many resources available online, but be careful. I’ve had a little experience with this type of thing, so I was more aware of what to look for. Some hospitals will give you free of charge some of those forms (i.e. Living Will, POA for Healthcare), but they might not address all the information you want to specify.
I hope that helps.
July 10th, 2009 at 12:17 pmHi- Since my stroke on 4/6/09 I am trying to pay more attention to my life. You see my stroke was a gift from God. I know that sounds crazy. I had just got into work that Monday morning and after my usual round of games on the computer, looked at my stack of work and said “Oh God I don’t want to do this anymore.” Soon after that I realized that my body wasn’t doing what I told it. I was afraid to try to walk.
August 5th, 2009 at 12:59 pmCareful what you pray for, I was in emergency within 20 mins and admitted soon after. I was there for 4 days then transferred to rehab. I had a left side ischemic stroke’, I am right handed. I was in rehab for about 2 1/2 weeks. I had 10 outpatient visits. I am grateful to have had insurance but my responsibility is about 6K. It ran out after 90 days. I can not work (which I am not unhappy about) but how am I supposed to pay these??? Oregon does not have temp disability SSD-if they don’t deny you takes 6 months to get a check. So because this is my “Gift from God” I am not going to worry about the mail or when the phone calls start because I know I will be shown what I am to do. Right now I am working on restoring my health, and it is hard work. My first task was to go to the bathroom, eat, and dress ALONE! and without help! Now 4 months later I can walk without help a short distance, I can hold a pen and write my name so it is legible, I can go to the bathroom, eat, and dress…alone. I am hoping that I can make progress to get me back – 100%. When people ask how I am my reply is ALWAYS, “I get better every day.” Even if I am not feeling it, because I want it to be a self-fulfilling prophesy. I am so glad to have found this blog; I am not alone. Thank you
I’m hoping that someone can help me. I had a brain aneurysym and coiling done in September of ’08. I then had the follow-up angiogram done this year. Unfortunately, it came back requiring a craniotomy and clipping. I recently had that done, went through rehab (actully flew through rehab – I guess I was one of the lucky ones). Anyway, Everything was going great, I feel pretty good – except I have this hoarseness in my voice now. The weird thing is 3-weeks ago I didn’t have it. Not at all. I had almost no deficits (other than a left shoulder issue). I had my normal voice when I went through rehab. I did catch MRSA in the hospital and my PCP put me on Bactroban to try to knock it out of me. Those of us who have been unfortunate enough to have a stroke – know that after the stroke we’re a walking pharmacy. So, I’m thinking the hoarseness in my throat could be a drug interaction. But, I’m not sure. Has anyone heard about losing their voice 8 weeks after the stroke has already occurred? It’s frustrating because I was fully on the road to recovery and now I’m scared about what this new thing might be. Any help or advice would be so appreciated. Thank you.
September 11th, 2009 at 7:47 pmTodd, I’m not familiar with the condition you’re experiencing, but it very likely could be a temporary side effect. You still are on the road to recovery, so do not fear. Little setbacks may happen, but you’re still making great progress. Fear can be crippling, so keep a positive outlook and stay in peace.
September 11th, 2009 at 10:07 pmThnks for that Kathy. I actually just stopped by this blog in hopes of finding other survivors who had similar experiences and knowledge. After reading all the posts here I may have found something that I’ve been searching for for a long time. I could tell you my complete story but that would take pages and pages. The one thing I will say is that at some point during this whole ordeal I completely lost faith in both our medical community, for a ton of reasons, the latest of which was after having a craniotomy and clipping done by one of the best neuro-surgeons in the world I called his office complaining about headaches, a sense of dread, feeling miserable, etc. I got the advice to drink more water – that night after the clot I had the bleed while on the blood thinner Coumadin. That was a pretty bad night for me. A great neuro-surgeons work completely destroyed by an inept nurse or assistant. This was the latest screw-up in a series of unbelievable horror stories I’ve experienced in our healthcare system. I will say there are some absolutely amazing and “saintly” people in our system. But, there are also some really awful people that should only be allowed to treat me when I’m lying in a coffin. On that last day lying in a hospital bed with a breathing tube I not only lost complete faith in our medical system but, I lost my faith in my Lord. My heart has since filled with rage, hate and anger. However, after reading this blog and the people sharing their experiences as well as Kathy helping me with a simple answer and yet one that means more to me than any answer given by somene with M.D. after their name. It truly gives me hope that one day I will find love, peace and compassion in my heart again. The sad thing is I know just by allowing Jesus and the God back in they will heal my heart and fill it with all I desire and yet if you heard my full story you would gasp. On the positive side (because like Kathy says there aways is that side)… Anyone who has heard my story will try to help me as best they can. I’ve been on so many countless prayer lines. So, I may be suffering but I can thank all of the people who pray for me as saving my life time and time and time an time and time and time and time again.
September 12th, 2009 at 5:29 pmKathy, Steve, all the respondants to Steve’s story: I am astonished by each of your stories, admire your strength and determination to recover, I admire your faith, and the people who have been there for all of you! My story is so different and reading all of yours makes me cry. I was 47 when I had my strokes (8)of them at once. I had gone in for a general checkup, as I was moving to a new job. I was told by the doctor the angiogram showed I had a blockage in my heart, therefore I needed a angiogram done – so we scheduled it. I was in the recovery room – I had a piece of plaque break off and traveled to my brainstem – causing bleeding on my brain with 1 massive stroke over my speech (right sided)and 7 little strokes all over – plus a blood clot in my heart. I spent over 2 months in the Rehab. I was born into my disabled life on 10-02-07. I am alone. Mo help from no one! The friends I had are gone, I guess my life now is too hard for them/ My cardiologist told me my heart was fine – healthy. I asked himwhy the angiogram then. He said the echocardiogram gave a false positive. I lost my whole healthy life.
October 11th, 2009 at 6:04 pmKathy and Steve, this is an amazing chronology of your post-stroke life. You are honest and candid. The stories and videos are fascinating. I am particularly interested in the FES systems Steve has used during his rehabilitation. Does he still use them? What is his hand function like after the rehab?
October 14th, 2009 at 4:59 pmHi Andy,
Thanks for visiting our blog and your nice comments.
I’m not familiar with the term “FES systems”. Are those hand rehabilitation systems?
Steve only used the Bioness hand rehabilitation system when he was in out-patient therapy at the hospital a year ago, and then it was only a few times. It took too long to set it up and that used up too much of his scheduled therapy time. We didn’t see any improvement at the time. But now I help him do arm exercises at home, and that works well. He is getting some hand and arm strength back, and he’s able to grasp with his fingers.
I hope that helps answer your questions. If not, please let me know.
Kathy
October 14th, 2009 at 8:14 pmKathy, thanks for the update. FES stands for Functional Electrical Stimulation. It sounds like the exercises you are doing are helping. Have you heard of “constraint induced therapy”? There’s a lot of enthusiasm in the scientific community about it.
October 14th, 2009 at 9:37 pmYes, I have heard about the constraint induced therapy. I don’t think Steve has enough arm strength yet. He still can’t lift his arm by himself; I have to support it for him, and then he can move it. Or, if he’s lying in bed, he can slide it across the bed and sometimes move it up to his chest. He wears a GivMohr arm sling during the day because for the most part, his arm is flaccid.
October 14th, 2009 at 9:55 pmI’m going to take a look at the sling you’ve suggested. Please forgive my curiosity, but what kind of exercises do you do with Steve? How long do you spend doing them each day? How long have you been doing them? What kind of improvements have you seen?
October 15th, 2009 at 9:59 amAndy, I don’t mind your curiosity at all.
We do stretching exercises first. It’s almost like we have to prime the pump. I start by moving his arm back and forth, up and down and across his chest, while supporting the weight of his arm. Then when he’s ready, we repeat them, but I only gently support his arm or hand while he does the moving. Sometimes we do the Bobath technique when he’s lying down. In that exercises, I just hold his arm at the elbow while he brings it in to touch his hand to his face and extends it straight up again. An excellent OT showed us this, and the first time Steve did it, he burst into tears because he didn’t know he had that kind of strength in his arm yet. This OT was the only one we had that really worked Steve’s arm like that, the rest made him do all the work. So when Steve couldn’t, it was discouraging to him. I was in every therapy session with him, so I learned all the techniques. But the best ones are the stretching exercises first, and no one did those with him. It does take a lot of work for both of us, but that’s been the most effective. I’ve always worked on doing exercises with him…from the time he was moved out of ICU until now. And as I learned different techniques, those were added along the way.
We only work on the arm for 10-15 minutes at a time at the most. It takes a lot of Steve’s concentration to do this, so he is easily mentally fatigued by them. We do some movements in front of the mirror in the morning so he can watch himself put on deodorant and push his arm through the sleeve. In both of these routines, I support his arm while he extends it, but his hand is doing the grasping to hold the deodorant. He is getting better control of his arm to move it across his chest and to extend it in front of him, but in all of these, he needs me to support it, except when he’s lying down on his back. He can do the snow angel by himself.
We also work on moving his fingers…grasping and releasing. The releasing is the hard part except when he yawns or is aroused. His arm will extend and his hand stretches open completely. Yes, that’s right and sometimes it’s very funny because I know exactly what he’s thinking. It’s called dyskinesis where the brain sends the message to the wrong body part. But as a result, his hand has stayed supple and pliable.
Steve has gone from having no movement in arm and hand, to being able to grasp and move his arm without twisting his torso. It’s still not functional, but at least we’re seeing improvement. It has become easier for him to move it without having to concentrate so hard to do so. One thing I do is prompt him to concentrate on certain muscles, and I’ll have him move his right arm or hand first so he can see and feel which muscles are doing the work. This is a very effective technique to isolate the correct muscles. And it’s been more encouraging to him when he sees that he can successfully do this.
All of these routines help the shoulder subluxation as well. His arm is getting stronger and his endurance has increased. Before he would easily get a headache after only 5 minutes, but now we can go 15 minutes before he gets tired. There are so many more exercises that we could do, but it’s physically hard for me too so we only do what we can.
October 15th, 2009 at 1:04 pmThanks for the detailed answer. Could you use the givmohr sling to suspend his arm such that he could manipulate things on a table, for example? Would that put too much stress on Steve’s shoulder? There are other devices, like desk-mounted arm slings that can accomplish this, but they are usually a little pricey. Perhaps the givmohr can accomplish the same thing, allowing you to extend his exercise sessions.
October 16th, 2009 at 8:57 amThe GivMohr is useful only for reducing the subluxation in the shoulder. It isn’t 100% effective, but without it, Steve’s shoulder is very painful. It slips off his elbow when his arm is moved, so I don’t think it would work as you described. I wish we could come up with something better, but haven’t found a good alternative yet.
October 16th, 2009 at 7:32 pmKathy, thank you for your email. Your story is so much like mine. I printed your story up and I’m going to show it to my husband. May give him more encouragement.
October 26th, 2009 at 5:39 amthank you
I am almost overwhelmed at the impact stroke has had on not just you but the thousands of people I read about online.
December 10th, 2009 at 5:13 pmMy best friend’s father suffered a stroke when we were just out of High school. He has regained much of his motor function in his arm.
He never gave up and worked hard to rehabilitate. It can be done. Persistence is the key.
I just found this blog, and I’m hoping to be able to talk to other family members, spouses, about their experiences. My husband had a stroke, and his right side is partially paralysed, and his speech is impaired, although in the 6 years since the stroke (that’s right!!) it is getting better. He is continuing with therapy still, but not speech. It was discontinued. We are thankful that we live in Germany and he has German health insurance, so they still cover most of his therapy costs. Our problem is his anger and depression, which is causing our family, and me, a lot of frustration. He will not fully recover, that is clear, but he doesn’t want to deal with the emotional disabilities that come with it. Does anyone have any good advice?
December 30th, 2009 at 9:18 amBarb, That’s wonderful that your husband is still getting therapy after 6 yrs. We’ve heard about German health insurance paying for Hyperbaric Oxygen Therapy (HBOT) for stroke survivors. That will be our next course of therapy, but it will be all out-of-pocket expenses. Did your husband get that? If so, how did it work for him?
In regard to his anger and depression, that comes with the stroke territory because it’s part of the grieving process. But after 6 yrs. you’d think there would be some type of acceptance of his disability by now. His loss must have been very profound for the anger and depression to continue so long. Or, the stroke could have affected the part of his brain that controls these emotions.
There is a natural remedy that may help. Another remedy for depression works very well too.
My husband uses a remedy from the same company to treat a seizure disorder, and it’s quite effective and doesn’t have side effects. He hasn’t had a seizure since he started taking it, so these products do work well. I wish you well, and please let me know how things turn out.
December 30th, 2009 at 5:11 pmMy Grandpa had an ischemic stroke stroke December 31st 2009. It was on the left side of his brain, which controls the right side of his body. We were able to take him home from the hospital the day after the stroke- but he has no movement in his right arm. It is very frusterating for him to not be able to do things for himself, seeing how last week he was walking the dog 3 times a day and caring for my grandma. His hand the past 2 days has been moving “involuntary”. Is this a sign of re-gaining movement in his arm/hand, will he ever regain movement in his hand?
January 6th, 2010 at 11:19 amHi Caitlin,
If your Grandpa was discharged from the hospital after only one day, his stroke might not have been very severe, so thank God for that. Recovery depends on the type and severity of damage the stroke caused in his brain.
Yes, involuntary movement is a very good sign that the nerves are trying to reconnect. The involuntary movement is working the muscles, so that’s a good thing. At least they won’t get stiff and atrophy. It’s hard to say how long it will take for him to recover, but it sounds like he is doing well. Was only his arm affected? How about his leg?
Do you know if he was given the clot-busting drug tPA? If he was, it could reverse the effects of the stroke and he could regain all or almost all of his arm movement back. It may take a few weeks or months, so he should be patient and keep doing the arm exercises with his therapist or anyone who will help him. Here is a link to a video of my husband doing arm exercises at home with an occupational therapist.
My husband has voluntary and involuntary hand and arm movement. But it wasn’t until 8 weeks after the stroke that there was any voluntary movement at all, and it was very small…only in one finger. Now, 23 months later, he can grasp with his hand, but he can’t lift up his arm without support. He did not get the clot-busting drug because his symptoms started more than 3 hours before he got to the hospital. If it was administered after that 3-hour window of time, it would have caused a brain bleed and killed him instantly. I do know a few stroke survivors who have received the tPA, and some of them made a full recovery.
January 6th, 2010 at 4:01 pmMy husband had an ischemic stroke December 21st 2008. He is still paralized on the right side and unable to speak. I have put him in Gods hands. Just wondering the time frame for recovery. I’ve had therapists say that if he hasn’t gotten anything back in a year, he won’t get it back. I don’t believe that. I don’t believe the Lord is finished with us yet. Any input on recovery would be greatly appreciated.
January 10th, 2010 at 9:39 pmCindi, I’m so sorry to hear about your husband’s stroke. You are right about stroke recovery. It can go on for many, many years after stroke. The most improvement is seen in the first year, but the thinking that recovery stopped after that has been debunked by newer technology. You can read more about that in the following books. I highly recommend that you get both of them immediately because they will so encourage you and your husband.
Stronger After Stroke: Your Roadmap to Recovery and Conquering Stroke: How I Fought My Way Back and How You Can Too
Another thing I would do is look for some other therapists who are more updated on recent breatkthroughs in stroke technology. Both of you need people who will encourage and motivate you not to give up. Recovery can be slow at times, but perseverance and patience pays off. Continue to read about my husband’s stroke recovery on this blog because I share so many things we have gone through that might be of help.
In all of this, God is still the God of all hope and he holds you in the palm of his hand. He is not finished with you yet. Please feel free to contact me if you have any other questions.
My love and prayers,
January 11th, 2010 at 5:40 pmKathy
Hello, I live in Accra Ghana. Michael, the husband of a friend of mine just had a stroke. He was released from the hospital yesterday but can not speak, or move his right arm and leg. Do you know of a website that we could refer to to find exercises that he could do to help him recover? The resources available here are almost non-existent. Thanks so much. Lisa
January 17th, 2010 at 6:48 amHello Lisa, I’m sorry to hear about your friend’s husband. There aren’t any professional websites that I have found that show the actual exercises. My husband’s therapists worked with him and when he was ready to come home, they gave us illustrations of exercises to do. And I videotaped him in stroke therapy, which you can see at http://www.strokesurvivorblog.com/about/more-videos/
Here is a webcast of doctors who give their expert opinion on stroke therapy.
The most important thing is to get Michael moving again. It’s like teaching a baby how to walk. First you have to work on reestablishing his balance. My husband had to learn how to sit on the edge of the bed without falling over because his core balance had been affected by the stroke. Then his therapists had him reach forward for items while sitting. Please make sure Michael is wearing some kind of belt that someone can hang onto while doing these exercises so he won’t fall. And make sure his right arm is supported with a sling so it won’t become dislocated from his shoulder.
Below are some links to websites that can help with his speech
http://expressiveaphasia.blogspot.com/
http://www.ghosters.com/
Also, check out this Google link that shows videos of people in stroke therapy: http://video.google.com/videosearch?q=stroke%20rehabilitation%20physical%20therapy&oe=utf-8&rls=org.mozilla:en-US:official&client=firefox-a&um=1&ie=UTF-8&sa=N&hl=en&tab=wv#
I hope this helps.
January 17th, 2010 at 4:27 pmKathy
I am a 61 y. o widow. Was working full time as an RN then had a dibilitating stroke that stopped my life as I knew it. I live alone so anxiety and depression are my companions. I have very poor balance, can’t use my left arm due to weakness. Anyone else out there trying to do it on their own?
January 25th, 2010 at 7:43 amgood day! my boyfriend had a stroke last dec.23.. he is just 30..
February 7th, 2010 at 5:09 pmas of now i can see his improvements but the only thing that has no improvement is his right arm, he cant move his arm, but his speach,his legs has improvements.. and also his eyes is affected, sometimes his having a double vision,, im asking for some information or video that can help him for his recovery! thanks and God bless u and steve!thank god for u kathy ur a blessing! ur an
inspiration!
The arm and hand are usually the last to come back after a stroke, so be patient. Continue to encourage him, and help him do some arm stretching exercises. Do these range of motion exercises gently so as not to cause him pain, but enough to keep the arm from freezing up from lack of use. The only video of arm exercises I have is Steve working with his occupational therapist at home. The double vision is something I can’t help you with because Steve never experienced that, but I know of other stroke survivors who have. On the Resources and Links page there are a number of Stroke-related organizations listed that may help you. Hope this helps.
February 8th, 2010 at 10:08 pmKathy
thanks a lot kathy!!! maybe his vision was affected because of the accident.. he got stroke while his riding in a motorcycle… maybe thats the reason why… he doesnt have a helmet(safety gear)… well thanks a lot ms.kathy! ill pray also for ur husband’s recovery!!! God bless you both!
February 12th, 2010 at 2:38 pmJust found this site and God Bless all of you through your journeys. My husband age 46 had a stroke in November in the right cerebellum. Thankfully, he has no paralysis, speech defects or optic nerve damage, but his condition is still disabling. He has some short term memory loss, difficulty processing information at times, lightheadedness to the point of almost passing out, and what he refers to as an “electric brain” sensation. Our neurologist refers to this as anxiety, but my husband says it’s not that. There is so little information available on cerebellum strokes, I am hoping that someone here can point me in the right direction. Best wishes to all, and thank you all for sharing your stories.
February 18th, 2010 at 10:48 amHI Demie,
February 18th, 2010 at 12:31 pmIf your husband is having an “electric brain” sensation, I highly recommend that you start him on Epi-Still, a natural remedy for the electrical part of the brain. It has been very instrumental in treating and preventing seizures in my husband after his stroke, and he hasn’t had one since he started the Epi-Still. Seizures are caused by the electrical part of the brain, so please don’t wait until he has one because that does more damage. My husband had 3 of them and they affected the motivational center of his brain. My best to you and your husband.
Kathy
2 things for stroke:
February 19th, 2010 at 9:30 pmCerebrolysin available on the Internet.
Hyperbaric Oxygen therapy.
Richard, Hyperbaric Oxygen therapy is our next source of treatment and Steve will be starting that in a few weeks. Please come back to this site as I post updates. I never heard of Cerebrolysin, but I’ll check it out. Thanks.
February 19th, 2010 at 9:46 pmInosine should be checked also.
March 23rd, 2010 at 3:46 pmtPA does not always work.
March 24th, 2010 at 10:35 pmI received it within an hour and still it killed off half of my motor cortex and all of my pre-motor cortex. As the ER doctor said you will have to settle for the slow rehabilitation miracle. And it is slow, four years now but still rehabbing.
I wonder what would have happened if you didn’t get the tPA…it could have been devastating or even fatal.
There are two people in our stroke support group that got it within the 3-hr. window. One of them recovered 100%, the other about 60%, so it must vary with each individual and the intensity of their stroke…different strokes for different folks.
Glad to hear you’re still rehabbing…keep it up because you’re an encouragement to others.
March 24th, 2010 at 10:45 pmMy 28 year old son had a stroke when he was only 9mos old as a result of a severe bacterial meningitis. Only 3 years ago went into a neuropsych program and is still seeing continued improvements. He has gotten back the use of all limbs, although still continues to have left sided weakness. I have recently heard of the Hyperbaric treatments for brain injury and I wonder if this could help him even after all these years?
March 26th, 2010 at 9:48 amHe struggles with reading and writing, but knows everything you’d ever want to (or not) know about Nascar. He has designed a car for a contest he entered.
Check it out and vote if you can.
Thanks for this blog. Many helpful tidbits…
Marietta,
March 27th, 2010 at 8:38 pmIt was so great to read that your son has the use of his limbs. It is possible hyperbaric therapy may help him, but it works best early on after the stroke by increasing blood flow to the shocked and dormant brain cells surrounding the destroyed brain cells.
Blessings
Hello Kathy – My wife had her stroke late one evening at our cottage 50 miles outside Ottawa. I was half asleep when she came to and said “I think I’ve had a stroke” – instant diagnosis. Then she went out in the dark to our privy 60 ft. away while I almost went back to sleep.
We chose to drive to the nearest hospital 16 miles because that was quicker than waiting for an ambulance to find us. At this small hospital they roused a doctor but after a half hour decided she should be moved to a hospital in Ottawa.
M.taught herself to read again, is active, swims, travelled with me for a fortnight holiday in England last year with our grandson, and has no paralysis. She suffered a hemianopia which means that she has lost her left field of vision because of damage in her brain. With her left-side vision gone she can no longer drive and I’m now the chauffeur.
She suffered a hemorrhagic stroke – which means a bleed in the brain. Clot buster drugs can be effective in treating an ischemic stroke in which an artery to the brain is clogged or blocked. With a hemorrhagic stroke, a blood thinning drug is that last thing a patient needs, since it may simply speed up the escape of blood into the brain, where it can do a great deal of damage. We were fortunate that the local ER doctor recognized what was happening and held back on treatment before sending M. on to Ottawa.
We have a useful Stroke Survivor Association in Ottawa which meets monthly to provide mutual support and activities. I’d appreciate learning about other stroke survivor groups – especially in Canada – if they could communicate through your blog.
Thanks, MMCassidy, Ottawa
March 30th, 2010 at 1:54 pmMike, finding a good stroke support group can be challenging. Even though Steve and I belong to one where we get together with other stroke survivors and caregivers about 8 times a year, it’s more of a social gathering than a support group…at least for me it is. So I searched online and joined a group that meets via email whenever the need arises. The SAFE Harbor has groups for stroke survivors and caregivers. It’s not as good as meeting face to face and building those relationships one-on-one, but when you have a concern or question, people will offer their help via email. If you join this group of people, they may offer assistance in your search for other stroke support groups in Canada. If I hear of anything in the meantime, I will be sure to let you know.
March 30th, 2010 at 3:17 pmKathy
I had my stroke on April 11th 2009, symptoms were head ache, blurred lower vision and some cognition problems. simply put I’m a lucky guy at 55. Spent 2+ weeks in a Boston area hospital then home.
Right now I go to work 1/2 time. I become tired at the end of the day, connot think clearly (unlike the old person I was). Physically I am OK, lower vision not so good, cannot drive and had a seizure two months ago. The stroke has also made me emotional for both sad and happy things (not so bad…actually and improvement from the other guy). I find the psycological issues, thinking what the other guy used to do in certain situations very hard to accept. I’m in therapy which helps but I have my days when I am really down, today is one. My wife has been a gem, but I feel like a burden to her. Each day she takes me to work, picks me up, and has other things she now does soley around the house. The depression is the tough part for me, looking back as it was before. I try to lift myself up but its hard sometimes.
As I read this blog I know many of you are batteling and living with greater disability. I guess I will have to let things take their course and be patient with my progress and remaining issues.
It has been helpful to write this. I’m going to go tell my wife I love her.
April 1st, 2010 at 3:16 pmMay God bless you Craig! Stroke in any form is so devastating, but you’re right, there is always someone who is worse off. My husband feels like such a burden to me, and I think that’s the hardest part for him. But I don’t think of it that way. I love doing things for him. He’s worked so hard for so many years to care for me, so now it’s my turn to do something for him. He is my priority and everything else can wait…the house, the yard, etc. I’m sure your wife feels the same way.
There is an online stroke survivor’s support group that you might be interested in where you can communicate via email with other survivors. Check out SAFE Harbor to join an email list of others in your predicament.
The joy of the Lord is your strength. Wishing you well.
Kathy
April 1st, 2010 at 3:40 pmMy stroke occured on January 8, 2008. At the age of 48 it has been a very difficult life changing event for myself and of course my family. When I was released from the hospital after 6 weeks of captivity my wife was fairly relentless in continuing my physical therapy in taking me to local parks to walk. No matter how much I complained or cried from the pain she pushed me that much further. I now after a little over 2 years of recovery go for small walks on my own. As I began the road to recovery, I was fortunate enough to join some friends in overseeing a small home remodel project which is one of the things I did prior to my stroke. when doing the project, I had reason to visit the project on numerous occasions. It was during that time I began to steal my truck keys from my wife and kids and began to drive my truck again (you can’t get into very much trouble when you can only travel at 25 miles per hour). I now drive pretty much anywhere I please, I just use careful thought and planning as to where I travel and the route I take as to not get into very much traffic(I only use back roads and pretty much stay off the interstates. I have joined 2 stroke survivor groups at 2 local hospitals and we have become good friends with some of the members and get together for dinners and games with them bi weekly. I want to thank you for your web page as it seems other stroke victims can come and share their stories and encourage others. This is surly a long winding trail to recovery we have engaged in.
April 5th, 2010 at 7:23 amGod bless you in your journeys.
Kerry
Kerry, thank you for sharing your experience. You have given us hope to keep up the good fight of recovery. We wish you the best in your continued stroke recovery.
April 5th, 2010 at 1:14 pmThanks Kathy, as I went for my walk today at the local minor league baseball park, I couldn’t get out of my mind that without struggle, there would be no increase.
April 5th, 2010 at 4:48 pmKerry
my nane is chris , on december 2 2006 i had several tia’s and 1 ischemic stroke. I was 39 at the time,it was in the right side of my brain and my vision was also messed up. My right eye was @20% out of alignment for my left, its was a huge problem for a long time, i wasnt aloud to drive for almost a year,i had to go to a driving school,and then had to get ok’ed from the state to drive again. i had to have special glasses made that had removeable lenss made by 3 m , it was very strange the glass’s were very helpful, it made me sick without them , i saw like 10 of everything, i have a memory problem , and still some trouble with balance,and walking sometimes, but im able to work every day and do the things i need to do, THIS AT MY SUPPORT GROUP IS WHAT WE CALL THE NEW NORMAL….i try to push my self every day,to get results and it works,its slow but it works,GET IN A GOOD SUPPORT GROUP AND LIVE LIFE WE ARE ALL DIFFERENT, IN THE SAME KIND OF WAY…
April 13th, 2010 at 7:49 pmThanks for sharing, Chris. We wish you well on your stroke recovery journey.
April 13th, 2010 at 8:01 pmKathy,
May 8th, 2010 at 2:35 pmI am 43 now and survived an ischamic brain stem stroke April 2008. Hospitalized for 6 weeks and unable to eat, walk and talk to name a few things…time.
Years are passing by and I am getting better although many things around me are changing…I’m always seeking other survivors for a self serving purpose to give me hope of one day fully recovering. In the meantime I am grateful for where I am and if my example can give hope to other survivors of getting better it helps me in another way.
Enjoy what we can and keep it positive it beats the alternative!
Jeff
Jeff, You are an inspiration to many. I can tell that without even meeting you. Your positive attitude and perseverance encourage others to keep up the good fight in their struggles. Thanks for sharing with us, and don’t give up. God has a plan for your life.
May 8th, 2010 at 8:37 pmHello Kathy, my name is Jenn. My 30 year old brother had a massive stroke 48 hours ago. I have to return to work in the morning, and could not stay with my family at the hospital. I have prayed and encouraged all my family and friends to pray as well. Thank you for your story. My brother, Jeremy, could not receive the clot buster either. I have been filled with what if’s for the last two days. I had to turn it over to the Lord. I fully believe that this is his testimony. God is so good. I feel confident that he will be restored, and I thank you for sharing your journey. We also have a journey ahead of us, but we are not alone.
May 10th, 2010 at 1:00 pmHi Jenn, I’m so sorry to hear about your brother. I’ll pray for Jeremy whenever I think of him. God is in control and he will keep you in perfect peace as you put your trust in him. The article entitled Peace in the Midst of the Storm may help you. I’d like to direct you also to TheStrokeFoundation.com, which is another great stroke-related website where there are many good articles, books and rehabilitation methods. The publisher’s 42-year-old brother also had a stroke several months ago.
May 10th, 2010 at 3:22 pmMy love and prayers,
Kathy
Hello Kathy,
May 15th, 2010 at 11:09 amMy name is Mike.I’m 38. I had a massive stroke last October 2009.My lower limbs recovery are pretty fast except for the numbness and weak ankle of my affected foot. I’m trying reflexology to make the numbness go away, and working with my PT to strengthen the ankle. I take 2 grams of Keppra each day which make it impossible for me to do anything including walking and standing upright without losing my balance.My affected hand isn’t functional yet.My vision was also affected , leaving me with a visual field loss,and not being able to drive.But I’m hoping I can find an alternative to Keppra and recover faster if I’m no longer affected by Keppra’s horrible side effects.Does Epi-still works?But doctors don’t usually recommend it,like my neurologist Did Steve develop visual field loss, and what was done to fix it?I hope everyone who became victims of stroke would share their story how they recovered.
Hi Mike,
Thanks so much for writing. I’m so sorry to hear about your stroke and your vision deficits. Steve’s vision wasn’t affected very much by the stroke. He needed a new prescription for his glasses, but that was all. The stroke must have affected the occipital lobe of your brain which controls vision.
You didn’t say why you were on Keppra. Was it because you already had a seizure, or is it being used as preventive medicine? Steve had a very bad seizure 10 months after his stroke. It lasted about 25 minutes and he was hospitalized for 3 days. The neurologist on staff put him on 500 mg. of Keppra XR while he was in the hospital. It made him so zombie-like that he didn’t want to take it any more. So after only 4 or 5 days on it, he stopped. I wanted to see if he would have another seizure without it, and he did have one about 6 wks. later, although it was much milder than the first one. He had it while he was sitting on a chair and he fell off and hit his head on the wall. Then within the next 6 wks. he had two more mild seizures. It was time to do something, so we went to another neurologist and he prescribed 250 mg. of the generic Keppra (Levitereceta), and he said it should be increased until Steve was taking 1000 mg. per day. But I didn’t want to increase it until we knew what reaction he would have with it. In the meantime, I read about Epi-Still and started him on that the week after he started the Keppra.
We went back to the neurologist twice for re-checks within the next year, and he wanted to know why Steve wasn’t taking the higher dose of Keppra. He said that the lower dose would not be effective in preventing seizures. But I told him that Steve didn’t have any more seizures, and I showed him a bottle of the Epi-Still. He said he never heard of such a thing. Most doctors have no knowledge about natural medicine, plus they don’t make money by prescribing over the counter products, they only get kick-backs from the pharmaceutical companies. That’s why they’re so eager to push pills all the time.
Well Mike, Steve hasn’t had any more seizures since he started the Epi-Still and he has no side effects with it. He takes 20 drops in a 1/3 – 1/2 cup of grape juice three times a day. One bottle lasts about a month. I can’t tell you what to do because I don’t know why you’re taking the Keppra. But if it were Steve I was trying to wean off the Keppra, I would start giving him the Epi-Still as recommended three times a day. After 3 or 4 weeks, I would reduce his Keppra by one/fourth, and continue to reduce it slowly over the next few months until he was on a dose he could tolerate, being careful to give him the Epi-Still as recommended. It will always be necessary for Steve to take Epi-Still because of his brain’s tendency toward seizures, but it’s cheaper than Keppra without the side effects. It is 100% effective for Steve, because he has been seizure-free since March 25, 2009.
May 15th, 2010 at 8:12 pmThanks Kathy.
May 16th, 2010 at 7:05 amI don’t know why I was on Keppra;I started receiving itthile I was at the rehab hospital.As far as I know I never had seizure.I’ll meet my neurologist this week to talk about Keppra which is so horrible because of the side effects.
Hi Kathy,
I was also given Lyrica which is for both seizure an nerve pain( whatever that is because no one explained it to me).
i was also given, Sertralline, an antideppressant pill, possibly to counter the side effect of Leppra and Lyrica.From Lyrica’s web page it says that”Drugs used to treat seizures increase the risk of suicidal thoughts or behavior”. I stopped taking Sertralline. I switched to St.John’s Wort because it is milder ang gives me good mood without the side effects associated with Sertralline.About the field loss, I’ll visit a neuro optometrist to get a new pair of glasses so I’ll be allowed to drive again.
May 16th, 2010 at 7:46 amMike, Your doctor put you on Keppra as a preventive measure, because most stroke patients have seizures. The stroke causes scar tissue in the brain which is likened to a barn full of hay. All it takes is a spark to ignite it which would result in a seizure. So prevention is important. However, I believe the Epi-Still, if taken consistently as recommended, would suffice as a good seizure prevention. If I had known that a seizure could have caused more brain damage, I would have done something more for Steve. But none of his doctors ever mentioned the probability of seizures. The first seizure he had affected the motivation center of his brain. It set him back about 7 months in recovery physically, but then he gave up and just quit trying to get better afterward. So I can’t stress enough how important it is to take preventive measures to avoid having a seizure.
I doubt if your neurologist will recommend you going off Keppra, but you could tell him you’d like to try the Epi-Still instead. You can’t just stop taking that amount of Keppra all at one time. You would have to be weaned off of it, so be careful not to go cold turkey. If the side effects are too horrible to live with, maybe your doctor will support you in your decision to make the switch to Epi-Still. It would be a wonderful preventive measure, but I caution you not to get lazy about taking it because you feel good. Time may go by and you might say to yourself, well I don’t need this any more and then you stop taking it. I have to remind Steve all the time why he’s taking certain medications. So you need to be diligent, but at least you won’t have any side effects. I’ll pray that things go well with you and that you find favor in the doctor’s eyes. Please let me know how it goes.
May 16th, 2010 at 6:13 pmMike, Here’s a link to more info on nerve pain. Regular pain killers are ineffective for this type of pain…like you have in your leg and ankle. Steve uses a topical Lidoderm pain patch which gives him some relief. He hasn’t experienced any side effects with it, but he uses it only on small areas like his ankle, toe or knee. It helps but doesn’t relieve all the pain every place else. I’m not very familiar with the other drugs you mentioned. Steve used Mind Soothe for depression, which has St. John’s Wort in it, but his high blood pressure wasn’t under control at the time so he had to discontinue using it. But now that his BP is under control, he may try that again. An anti-depressant is what triggered his seizure, so I won’t let him take any more of those. I hope your vision can be corrected so you can drive again. Let me know how that works for you.
May 16th, 2010 at 8:53 pmKathy
Thanks Kathy.I tried Epi-still for a few days as a preventive measure for seizure, and felt so much better and seizure-free,though I don’t exactly know how it feels to have one.I also take omega-3,magnesium, vitamin D-3 and B-6,tocotrienol supplements and a homeopathic detoxifier regularly and they help me in my recovery.I regularly check Dr.Weil’s website and swansonvitamins.com for recommendations on how to improve health to enhance the body’s healing system. I hope to go back to work soon.
May 19th, 2010 at 6:27 amAnyone out there who heard of gastrodia or is using it?
May 19th, 2010 at 8:59 amGlad to hear that Mike. Thanks for letting me know.
May 19th, 2010 at 8:06 pmThanks Kathy. I took Epi-still for a couple of days, and it made me feel better and seizure-free,though I don’t know how it feels to have one.I regularly take omega3,magnesium, vitamins B-6, D-3, tocotrienol which helped me improve my recovery..Hope to go back to work soon.
May 20th, 2010 at 2:42 pmWho have tried NeuroAid?Testimonials and prliminary results suggest it improves recovery of stroke patients.
May 23rd, 2010 at 8:20 amHi Mike,
We haven’t tried this, but I was contacted via email by someone selling it, so I checked into it.
The clinical trials were done on patients that were no more than 6 months post stroke (see http://www.neuroaid.com/en/about_neuroaid/clinical_data) and it doesn’t say what kind of physical or occupational therapy they received while taking the NeuroAid. The best results only showed that 41.5% of the patients taking NeuroAiD™ recovered more than 55% of their disabilities after one month of treatment compared to only 31.2% of patients in the control group (e.g. who weren’t treated with NeuroAiD™).
In simple numbers it would be:
Out of 1,000 patients treated with NeuroAiD™, 415 reduced significantly their disabilities from stroke (more than 55%). And out of 1,000 patients, not treated with NeuroAiD™, only 312 did recover.
To me the numbers don’t overwhelmingly convince me that it’s that effective. It would be great if it was the magic cure, but I think good physical and occupational therapeutic exercises would accomplish the same thing. For its cost, I don’t think it’s worth it.
May 23rd, 2010 at 3:45 pmHi my name is Adrienne,
May 23rd, 2010 at 9:49 pmI just had a right pontin infart on Feb.28,2010. I was an over weight 35 year old female who swam 4x’s a day & had NO HEALTH ISSUES. My situation is so bad because I didn’t have insurance!!!! I was not given any info @ the time of my stroke. I woke up that Sunday morning w/a BAD headache as well w/out the ability to move my left side. It has now been a little over 2 months since I had my stroke & am completely recovered accept for my feelings of FEAR & INSOMNIA. Am I the only one who has these dibilitating feeling???
I had 2 sessions of OT & 1 w/PT. I know I am lucky but I feel like the medical community let me down because I was not insured. I now how medical in CA. but can’t find anyone to help me w/my feelings of FEAR & INSOMNIA. I am on AGGRENOX & an antidepressant also to help me cope w/my emotions. I hate the side effects of the antis but I was feeling so caught up w/my pain that I am making my families lives difficult. I have a ♥ing husband & two daughters who need me but I just want to be able to sleep & feel normal again. I pray every night for God’s help but I feel like I have been left on my own & there fore fear I will have another stroke. Am I just over reacting??? I am working out 4 x’s a week to make my self exhausted & have lost 20lbs, but I just want to feel better.
I ♥ this blog because it made me feel like I was NOT ALONE ANYMORE.
God Bless.
Hi Adrienne,
I’m so glad to hear that you’re completely recovered from your stroke. That’s amazing!
Your feelings of fear and insomnia may be a residue of the stroke, but that doesn’t mean you have to live with them forever. There are some proactive measures you can take to get rid of them. One therapeutic exercise you can do is to keep a journal and write what you feel when you’re fearful. Then read these scripture promises whenever you feel fearful and especially before you go to bed. Meditate on them and read what the truth of God’s word says, because God doesn’t give us a spirit of fear. Read them out loud and tell yourself that you CHOOSE to believe God’s word instead of your feelings. You may have to do this numerous times, but as you do, you will start to feel better. Once you have peace, I’m sure you’ll start sleeping better too.
If you’re taking measures to lose weight and reduce your stroke risk factors, then the best thing you can do is to entrust your future into God’s hands. Please let me know if I can help in any other way.
May 23rd, 2010 at 10:53 pmKathy,
May 24th, 2010 at 7:07 pmThanks so much for being helpful to everyone. You’re truly exceptional and a wonderful person.
Thank you Mike. It’s my pleasure.
May 24th, 2010 at 7:43 pmadrienne, I was so scared for nearly 3 years i couldn’t be alone couldn’t sleep at night felt like any min. I was gonna have a stroke. I’m sleeping at night now. I can’t get around so i bought a laptop it helps with the being alone feeling, hang out on facebook someone is always there. keeps your mind busy which is good for it, at the hospital they had me play bejeweled to help with the mind problems. I have added one on-line class I’m getting an 88 percent I can work on it when i feel up to it nap when i need to I joined a yahoo Group on stroke surviving get into that when I’m up to it physically and emotionally, I still have some problems with crying but the first 2 years i could not talk to anyone without starting to cry. so i isolated myself from all but my family made it hard on both of us. I’ll shut up now just know Adrienne you are not the only one.
June 4th, 2010 at 8:36 pmThanks Kathy. Did Steve had an EEG while on Epi-still?
June 6th, 2010 at 8:10 amYes, and everything came back fine…there was no further damage from seizures since he started taking it. How is it working for you?
June 6th, 2010 at 9:02 amThank you Kathy for the info. so far, so good. will have my EEG next month
June 7th, 2010 at 6:50 pmHi Kathy Did Steve has a seizure while on Kepra?
June 10th, 2010 at 7:37 amNo, he didn’t have any seizures after he started 250 mg. of Levitereceta (generic Keppra). One week after he started it, though, he also started taking the Epi-Still. His neurologist wanted him to increase the Keppra to 1000 mg. a day over the next two months, but Steve never increased it. He tolerated the lower dose quite well with only drowsiness as a side effect, so he just continued taking the low dose along with the Epi-Still. No seizures since he started it, and since his doctor told us that the lower dose of Keppra would not be effective in preventing seizures, I have to assume that the Epi-Still is the reason he’s been seizure free for a year and a half. Before he started it, his seizures were coming 3 weeks apart.
Are you having second thoughts about taking Epi-Still?
June 10th, 2010 at 7:59 pmThanks Kathy. Not really. I continue to take it since my neurologist decreased my Keppra to 1500 mg per day.
June 11th, 2010 at 12:14 pmWow. I had a stroke on that VERY same day.
June 16th, 2010 at 11:30 amAt the age of 42. My neck was twisted wrong (in a medical office) and I stroked out. Speech wasn’t affected, but I lost the feeling at the end of my fingers forever. I learned to walk again and the memory loss (“what’s that word”) is and was very apparent. I am not the same, but glad to be alive.
My mom just had a major stroke one and a half hours ago.I just booked my plane to seattle and was doing some research when I came apon this page.I dont know what to expect when I get there.I’m scared.
July 6th, 2010 at 4:29 pmRobert,
July 6th, 2010 at 8:17 pmEvery stroke is different so it’s hard to know what to expect. Your mom might not even be aware that there’s anything wrong with her yet. She may be confused as to why she’s in the hospital. Stay strong for her, but don’t be afraid to grieve the loss of her abilities in private. She needs all the encouragement she can get. I’ll be praying for both of you.
Blessings,
Kathy
April 11th, 2009, at the age of 31, I was sitting at my oldest son’s soccer game, I felt light headed, dizzy, could move my left arm, but could not feel it. I called my husband and told him something was wrong with me. He was at the games, but with our middle son. He came over to the field I was at and took me to the hospital with our 3 boys (at the time 17 months, 4, and 6). They later diagnosed it as a stroke. It was the scariest, most horrifying experience of our lives. I am a healthy young women, not over weight, never smoked, but found out through all of this, that I was born with a hole in my heart. After 2 weeks in the hospital and a heart surgery, I left to begin my “new life.” I do have complete use of my arm and hand, but have nerve pain from about the waist up on my left side on a continual basis, I also have little feeling in my hand and arm. I pray for healing. I know the Lord can heal me. I have learned to type with one hand, look for keys in my purse rather than feel for them, everything is very visual, so many things have changed. I will have my boys tested for a hole in their heart because I was told this is herititary. Thanks for reading my story! God Bless, Angie
July 8th, 2010 at 11:47 amCan any survivor tell me what they remember during the hospital stay? My mom had an ischemic stroke 3 days ago in her left brain. Last year she had a right brain hemmorhagic stroke which left her with some deficits typical to this type of stroke. Now she is hospitalized and not responding. She opens her eyes slightly and then closes them again. She is not moving at all. The doctors think we should just take out her breathing tube and let her die. I don’t want to do that but I don’t want her to suffer either since its likely with the severity of the left side stroke that she can not communicate any pain. Can anyone explain what they felt during the first few days?
July 13th, 2010 at 9:58 pmDear Kathi,
July 17th, 2010 at 7:24 pmNothing actually.I was dreaming all the time.I only woke up 3days later at the ICU.Mine was severe, but I’m so alive now
Dear Kathy and Steve,
I’m completely humbled with your stroke story. Hope all is well as you journey through living with it.
I’m not a stroke survivor, but a registered nurse in a neurosurgical intensive care unit. I see stroke patients all the time and do love reading about the patient’s perspectives and experiences. I also salute the caregivers! I am also especially grateful when I hear about how they’re doing beyond the critical phase in the hospital.
I recently started a website that will hopefully grow into a resource for neurology patients. The brain is so complex and so delicate that often families have a hard time grasping what’s going on. Hopefully it’ll help answer some questions
http://www.savingthebrain.com
July 17th, 2010 at 11:11 pmkathy and steve,
hi. i’ve only read as far as 18 responses and intend to read all responses but i feel that i need to share my information and knowlege on my road to recovery, my details:41 y/o aneurysm survivor, right hemisphere stroke blood clot on the brain, its the same story as to what happened to most stroke cases, migraine, headache.
July 18th, 2010 at 5:27 ammy left hand mobility is still a work in progress and same goes for my left leg an foot, but prayers gives me strength and i’m living alone, i’ve come across this book entitled ‘dr. dean ornish’s program for reversing heart disease’ its a gem for me in my recovery, god works in mysterious ways, bought the book even before i had suffered a stroke, now its coming handy and proving more than useful for myself and to readers of your blog, my two cents worth of helping stroke victims is through the pages of the same book, i’m from the philippines by the way.
i am glad i’ve found this blog my prayers will now expand to seeking blessings for you and your family for giving us a venue to ventilate what happened to us.
thanks.
Kathy and Steve,
I hope your road to recovery is going well.
I was not really aware that stroke’s also occured in children until a friend of mine’s daughter had one at 5 years old. A few people and I have created a Facebook Cause Page to help raise money and awareness for this terrible disease. If your on facebook we would love to have you as a member of this worthy cause. The cause is called Sophie’s Story
http://www.causes.com/causes/497106?as_id=853278&as_type=Sharing&
There is a video up of Sophie telling the world about her story and how she lives her day to day life. She is an inspiration of courage and determination, like many of you are that have undergone strokes. I hope that you will help us raise awareness of strokes by joining our cause. Below is an exuprt Sophie’s mother wrote about the day Sophie had her stroke. Thank you so much for taking the time to read this.
See story below
Sophie’s Story
The Story of Sophie Elizabeth Husband
September 30, 2008, was a regular hectic morning or so I thought. Everyone was scrambling to get out of the house. Sophie, my five-year old daughter, mentioned her head and arm hurt. After checking the “usual” fever, not bleeding, etc, I asked her if she was okay to go to school. She said she was just hungry and once she ate she would feel better. Although she seemed quieter than usual, she ate and we were off to school.
Later that day, around 2:30 pm, I received a call from the YMCA after school program. Sophie had fallen in the bathroom and was incoherent. They said they were rushing her to Hasbro Children’s Hospital. Like any parent, I was deeply concerned and immediately left work to go and meet my daughter at the hospital. Sophie was immediately rushed into triage (a scary place for anyone) and an army of doctors and interns crowded around my baby looking to see what was going on. Sophie could barely talk and just kept mumbling. No one was telling me what was going on. I was hysterical and was taken out of the room. Two burly guys sat me down and said if I did not calm down, I was going to be taken to RI Hospital. Finally, after calming down, I entered the room where Sophie was. Staring at my child and feeling so helpless was an experience I never want to have to go through again. If I was scared, imagine how Sophie felt. At only 5 ½ years old, she had no idea what was going on. So, I held her hand and talked to her and waited to hear what was wrong with my daughter.
After what feels like waiting for an eternity I overheard an intern was on the colleague mention that they were looking at a 5 ½ year old stroke victim. I almost collapsed. Kids don’t have strokes, elderly people have strokes. I thought to myself, this cannot be happening, not to my child.
Shortly after, Sophie was taken to get some MRI’s to confirm what all the doctors thought. It was at this time I met Dr. Gita Harapanahally, Pediatric Neurologist.
Dr. Hara (as she is often called). Dr. Hara was a beacon of light for me in this troubling time. When your child is admitted to the hospital after an accident, you go through a series of strong emotions and become a walking zombie for a while. Thankfully, my husband, Mark, was able to help me up and step in to help for a while. He went in and held her hand during all the tests when I was unable to stand still trying to understand and get a grip on what was happening before my eyes.
After Sophie’s tests were complete, she was admitted to ICU. Not long after her being admitted, Sophie’s results were back and it showed a massive stroke affecting the right hemisphere of her brain. It also showed two small strokes at the base of her brain stem from when she was an infant. Now, it was a waiting game. The brain sometimes swells following a stroke and we had to wait 4 days to make sure all was well and she would not need surgery. On day 2 the team of neurosurgeons arrived at our door to say that they would be on call if Sophie needed surgery. I was nearly sick when they said this. Not only had my 5 year old suffered a massive stroke, but she might need brain surgery now. This was more than I could take. I had no choice but to wait and that is what I had to do.
4 days came and went and Sophie was finally out of the woods. I still had so many questions and demanded answers, but even doctors don’t have all the answers. Sure they know more than the average person, but they don’t always know. Medicine is not an exact science like I once believed. It is lifelong research and development.
Sophie’s stay in the ICU continued for several days. Slowly she began to speak and eat. Little by little she was returning to herself. So many doctors came in to meet Sophie and the ones who actually had witnessed and treated stroke patients and survivors told me that Sophie would make an excellent recovery because of the “plasticity” of her brain. Strokes have devastating effects on the elderly and adults but in children, the impact is far less and their recovery is greater. Sophie stayed in the ICU at Hasbro for one week and then was transported to Spaulding Rehab Hospital in Boston. At Spaulding, Sophie would stay for 5 weeks and have daily physical; occupational and speech therapy. This is where she would make the greatest gains in her recovery.
It has been almost two years since Sophie’s stroke. Her recovery has been remarkable. When she first arrived at Hasbro, she could not walk or talk. Now she is running and has returned to the ball of energy she always was. Today, she still has difficulty with her left arm and often needs her right hand to open her left. In addition, the left side of her face seems to be still slightly frozen and her smile is a little crooked. Experts say that it can take years for children to fully recover from a massive stroke. Now Sophie takes daily aspirin therapy and does outpatient PT/OT
To this day, we still don’t know why she had a stroke, but blood tests revealed that she has Factor 5 blood. This is a blood type that clots easily. My brother in law has the same blood type and has been on blood thinners all of his life. They are still doing research on this, but there definitely is a genetic link as to why her stroke occurred. It looks as though with her blood type and her hyperactivity, she probably fell while she was playing and that combined with her blood type, caused a clot and ultimately a stroke. Thankfully, we live in a day and age with modern medicine. Sophie now takes Ritalin twice a day to calm her hyperactive behavior and aspirin to thin her blood.
The fact that this happened is so rare and most people won’t ever have to worry about this happening to their child; however, it does indeed happen. Some kids have strokes as babies, some have it when their moms are giving birth, and some have it, like Sophie, when they are young children. CHASA is a wonderful agency to help parents and children connect with others from all over who have also suffered strokes.
Please help support CHASA and raise awareness of this terrible disease.
July 22nd, 2010 at 6:13 amThank you for making this blog. My father had a stroke 2 days ago and I cry every night when I come home from the hospital. To see such an independent man become so dependent all of a sudden is heart breaking. Your blog has answered a lot of questions that I have.
Thank you and God Bless.
July 25th, 2010 at 3:45 am