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Hello and thank you for allowing me to join.

 

My wife suffered a stroke in April 2019, just over 8 months ago.  She had an AVM in the Brain Stem / Cerebellum area.  She has  a paralyzed right vocal cord, her right eye is fixed and doesn't respond to light, although she does have vision but has double vision if she has both eyes open.  My wife, Anne, has no balance and requires a wheelchair and cannot transfer on her own.  She constantly says her brain is "foggy" and has feelings of extreme cold in her mouth and face.

 

We have seen two Neurologists and they have both said Anne has no chance of recovery.  The news is devastating and we feel we have no where to turn.  My wife is only 49 yrs old but she is loosing hope and a will to live.  

 

I am hoping to hear from others and find encouragement in their stories.  Any advice would be appreciated.

 

Thank you in advance,

 

Darrell 

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Welcome Darrell! Brain bleed stroke here, Valentine Day 11:00am 2015 64 years  and 8 months old. Left side is numb head to toe but I have mobility just no or very little sensation. You have landed in a good place. You are in the absolute worst time period with this recovery for Anne and you now. My wife (5 years younger) is my caregiver. Your new roll for the love of your life. It is struggle time big time for her especially right now. The rug has been ripped out from under life as she knew it. Accepting this and adjusting to this "new normal" is depressing until we accept it as how things are pretty much going to be. It happens but it takes time. You are key in this but only to a point but still in a big way. There are some terrific victims and caregivers here who are very supportive and forthcoming with every subject under the sun. Welcome to a club none of us ever wanted to be a part of.      

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Hello Darrell. I'd like to offer up prayer for Anne. All our spouses, and significant others and/or caregivers really never signed on to this unfortunate situation. Those words "in sickness and health" really carry heavy meaning. I only know first hand my side of stroke and often overlook how much my condition has affected my relationship with my wife. How it's disrupted our original plans, how unfair it must be. I know we all had our paths altered. The list is long. The thing is it's just too difficult to dwell on the what if's, or what may have been, it often just yanks on the heart strings hearing these things and reading these posts. Sometimes just having another good day is a blessing, just being alive, surviving the stroke has meaning. 

 

For me, being here is knowing God still has a plan for me, whatever it may be, even if the plan is just to be a vessel in somebody else's life, making a difference. My life is what I make of it, I still have choices, but I'm much more aware of how my choices affect others around me, both family and friends. My thinking today is what can I do to make somebody else life better, even if it's just prayer. It takes the focus off of me for a time. My heart goes out to you Darrell and Anne, I understand at least in part how you feel. 

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Darrell, I, too, had a brainstem stroke, a bleed (hemorrhagic) in the pons, nearly 13 yrs ago. I am lucky to be alive. Can she talk and eat? I could not do either right after my stroke but had a gifted speech therapist who taught me how to do both.  Today I still have dysarthria, speech abnormalities which make it hard to understand me sometimes .  I also thave swallowing problems and my eating is often punctuated with a lot of coughing.  I was ery limited n wat I could et, and at first I

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Darell :

 

welcome to wonderful online stroke support group. first few years are hardest, everything looks so bleak, but your wife has her age & you by her side, she will come out fine with flying colors.

 

I had stroke at age 34 which left me paralyzed on my left side & retired me from the job I loved in 2004. I thought I will never find joy in living again, but thanks to my young family at home, our son was just 7 at the time I persisted, & today life is great again. I found blogging & chatting with other survivors highly therapeutic for my soul. after 15 plus years my life is just different not good or bad just different. guess what our son is on his journey to become medical doctor, all his doing, my contribution was to just hang around & show him his mom is not wimp who will give up on him or her family.

 

we do have scheduled chats every day afternoon 3-4 EST & evening 8-9 EST. I do host chats on Wed evening  in survivor room #2 & Friday evening 8-9 EST in coffeeshop, hope to bump into you guys soon.

 

Cheers,

Asha (now proud 50 year old survivor)

 

 

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Darrel, As others have said, the first years of living after a stroke can be quite unbelievably low. Nothing seems to be right at all. Persistance with trying to overcome the problems is the only answer. That was a terrible thing for an expert to say to you both and it is also terribly incorrect as you will find as you read the background of most of the residents of this club. (and it is a club!).

Deigh

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DARRELL,  I'M SORRY ABOUT MY EARLIER POST, BTW , AS FOR SOME REASON it disappeared while I was typing it. Tonight, I  came back to re-type it,  and found out it had posted! So I won't try to re-invent the wheel now, but there are a few things I want to share with you.

   One-It doesn't seem to matter where in your brain you had your stroke, how bad it was or anything else, stroke recovery is frustratingly

slow. The brain has to rebuild connections with the muscles that were destroyed by the stroke. If you think about it in military terms,

the muscles have lost their CO (COMMANDING OFFICER) and don't know what to do, so they do nothing (paralysis). As connections (communication channels) are re-opened, the brain can resume its position as CO

   " Neuroplasticity" as this process is called, is seldom fast or easy. You may be able to help this process along by engaging in therapy.

What therapy does is to show the brain what you want the muscles to do. It also involves repetition,

 and the brain learns by repetition.

   Whether or not Anne has had therapy it is important that she re-engages in therapy. Medicare does allow so much therapy per year

per client. So if she's not in therapy now' and hasn't been all year, you may want to hop on over to her doctor and ask for a prescription for therapy. Wait! It's so late in 2019, that you may want to do this in 2020 as their budget starts in JAN. FOR the FISCAL YEAR 2020. unless it's been changed and who knows.  Be careful though that you don't fall into the Medicare gap period,  or you may have to pay out-of-pocket .

If you have private insurance. you'll have to ask them.  If you're one of the few for whom money is not an issue'. thank God, and disregard the above. Best, Becky 

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The main advice I can give is as others have already said. Don't give up this is a marathon not a sprint and the one thing you can be sure of is, you do nothing you get nothing. So you work at recovery and ever slow slowly things start to improve.  Sometimes you think you are imagining it, it comes so slowly, but then you look at a photo or video from the beginning and you realise it has been happening. Also a lot of stuff need to reach thresholds for you to see or use improvements. So even though you can now step 8.5" if the step is 9" you can't get up it yet. but then you keep working and you can step 8.8" and then 8.9" and then what seems like all at once you can get up that step.  Yes there are limits to how far we can recover sometimes but you won't know when you reach those limits so you keep pushing just a little bit more and sometimes the "miracle" happens.

 

8 months is nothing in stroke recovery terms. The first 3-6 months you have not only the original injury to the brain but also the inflammation associated with the bodies normal healing process. So even if you had not much success with therapy in the first 6 months it doesn't mean you give up now.  Many older doctors still think if you didn't get "it" back in the first 6 months you never will, they have been proven wrong many times, but only because people refuse to listen to them now that brain plasticity has been proven.  I'm not saying it's easy, especially if she has brain injury fatigue, which it sounds like she does.

Remember you have to keep saying "I can't do that YET", not "I can't do that".  Self talk and repetition are key to brain retraining. If she can center her recovery efforts around an activity she enjoys it will be easier than just doing the exercises.  Life does not end after a stroke, no matter how bad it feels some days. When you get a good day you use it! yes you pay for it later, but you learn to accept that too.  Life is what is, not what it was.

Hang in there

-Heather

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Hi Darrell my name is Tracy and I hate you and your wife are having to walk down this path (or ride). As so many others have said... Stroke happens fast and recovery is painfully slow and can challenge the best of hopes. I had a massive bilateral cerebellar infarct 7-5-2015. There have been many changes and challenges over the past almost 5 years. I am not here to tell you that recovery is 100%. For many of us it doesn't happen but improvements can be gained well after the amount of time your wife has been a survivor. Always hold onto hope and strive for positivity. One thing everyone that I know has experienced or are still experiencing is an acceptance of self and of our loved ones. It not an easy path. It's full of challenge, emotion, anger, fear, sadness, and many times depression. You guys please try to talk and know that sometimes a doctor can help. There's no need to suffer without the help of sometimes meds, therapy, family therapy... There is an emotional factor that is huge. Also, seeing that your wife had some cerebellar involvement, emotions can be overwhelming. BTW, accepting is NOT giving up. It is akin to removing a ton off of weight being carried every day. It is a process and we change as it changes. For me, I reaffirm this every morning I wake up because every morning is different. It's a time when zest comes back into a person's soul...a time of setting attainable goals and finding love of life even when it may be different than before. Learning what you love again (this may be very different) being in touch with the little things and awe inspiring and beautiful things that us humans so easily overlook in our busy lives. It can be enriching. It is also important to remember that it's OK to mourn the past self. You don't have to forget but keep your eyes, heart and soul open to embracing what feels good. Celebrate even small triumphs... It doesn't have to be recovering a lost ability it can totally be celebrating new things that have value and meaning. One thing that I suggest to all I have spoken with is to have your loved one create an ongoing gratuity journal. It doesn't have to be long or in depth. She can gage the content according to what her day is like. There is also a method called GLAD. It's meant to be as simple or as intricate as you need or want any particular day. For example, there are days I am exhausted, sore, depressed or anxious or just can't fathom doing a thing so I use one word to do GLAD. One for each letter. GLAD stands for Grateful-Learned-Accomplished-Delighted. Google the GLAD METHOD. It will explain better. I work around my NOW day. Doing this has an underlying benefit that you just have to trust. The effort will be rewarding. 🙂 I wish you all the best. 

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What they all said.

 

Basically, it takes time.  Some improvements are sudden and drastic, some are subtle and creep up on you.  However, things keep improving over time.  And yes, it is a huge blow.   You both have my sympathy.  However, not all is lost.

 

The good news:  Improvement continues forever.

 

The realistic bit:  Improvement is not linear.  It come in fits and starts, may seem to have stalled for some time and then have a sudden breakthrough.  Some things can be managed (keeping notes to make up for memory issues, support bars to help with balance and getting into the wheelchair).  The two of you will figure this out over time, and by seeing what other people do and how they cope.

 

The bad news:  Some things will never improve.  Not everything can be managed.  There will be frustrations and upsets, but they get easier to deal with over time.

 

Don't give up on improvement, ever.  It takes time and work and practice.  However, be sceptical of people like Normal Doidge who write about "miraculous" recoveries.  The are selling snake oil; there is no silver bullet, and things will never be the same as before, but they will not be as bad as they are now.

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I want to thank everyone for all the messages of support and hope.  I read all these posts to Anne and we cried a little, but there is hope.  Anne can speak although it is difficult to understand her, although her speech has gotten louder over the past three months.  She does attend rehab but we are expecting to change providers in January.

 

Her work and insurance has been pretty darn good.  She will transition to Social Security Disability and Medicare over the next few months so hopefully that won't be too painful.  Many of the rehab specialty programs here do NOT take Medicare.  Her eye therapy doesn't accept insurance at all, but I can submit claims on our own.  I'm learning to navigate (and argue) with the system.

 

Anne's shaking, coughing and choking are the worst symptoms.  I do believe that she can overcome the swallowing issues.  We have a neighbor whose right vocal cord was paralyzed during an operation.  It took three years to get his voice back and now (12 years) you can't tell it is paralyzed.  I hope and pray the shaking can go away.  That is driving her crazy.  Her memory and thought process are intact but she is constantly clouded and distracted by the shaking.

 

Anne has a LOT of anxiety and can't be left alone for very long.  I am with her from 6am - 8pm and rarely leave her side.  I've told her we need to find a way for her to be alone for periods of time but that is a tough battle at the moment.

 

Thank you again for all the kind words of support.  I hope we can interact with the members here more often as the months go by.

 

Darrell

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On 12/20/2019 at 2:18 PM, DarrellF said:

Hello and thank you for allowing me to join.

 

My wife suffered a stroke in April 2019, just over 8 months ago.  She had an AVM in the Brain Stem / Cerebellum area.  She has  a paralyzed right vocal cord, her right eye is fixed and doesn't respond to light, although she does have vision but has double vision if she has both eyes open.  My wife, Anne, has no balance and requires a wheelchair and cannot transfer on her own.  She constantly says her brain is "foggy" and has feelings of extreme cold in her mouth and face.

 

We have seen two Neurologists and they have both said Anne has no chance of recovery.  The news is devastating and we feel we have no where to turn.  My wife is only 49 yrs old but she is loosing hope and a will to live.  

 

I am hoping to hear from others and find encouragement in their stories.  Any advice would be appreciated.

 

Thank you in advance,

 

Darrell 

Darrell, I would also add that during my recovery/rehab as both in-patient and out-patient, I did relearn to walk and do simple things like getting oneself dressed using different applications, and basic everyday tasking. My stroke was however a slightly different kind as there are so many variations, areas affected, projected outcomes, etc. My stroke happened during surgery to repair a ruptured brain aneurysm and I had 2 mos of in-patient rehab and 7 mos outpatient to get some basic things under control, strength and balance were main issues because of a desperation to return to my job of 25yrs. At one point I returned prematurely and the area manager sent me back home for more rehab because I was still pretty "wobbly" and definitely noticeable. I was so afraid to have to leave my job and income I was running on sheer determination and desperation. So coming from a point post surgery where I couldn't even walk to a point where I could basically get by was monumental, but did however take almost a year. 

 

There does come at a point where any incremental improvements slowed to a crawl but it was miles from where I started. These days post stroke I'm in my 13th year and I can still drive, and do basic tasks, but my endurance and mobility are impacted dramatically. Age is also a small factor as generally most will slow down a few notches with age over time. I'm 67 now. Since aside from the mental and emotional aspects stemming from stroke, my biggest is strength and mobility/balance issues. I'd guess like me, most strokers develop work-arounds to accomplish tasks that need basic maintenance, home and health wise. For instance since I no longer have the endurance to do grocery shopping, I do online grocery shopping and just drive there and they have grocery pick-up where they come out with your order and load it into the car and away you go. At home I purchased one of those small basket-type hand carts and use that to get my groceries from the car to the kitchen. I'll now sit at the table in between car/kitchen trips but no reason to hurry. I'll do all my banking with drive-thru and use my car for doctors appts, drive thru pharmacy etc. Though I do have a walker and quad canes, my general breathing and physical endurance is my limiting factors driving things. My balance is impacted and so no ladder climbing, or I avoid climbing steps or uneven surfaces as much as possible. I've already had a few falls and vertebrae fractures and hospital stays to understand my limitations. Thats the key for me is just understanding my limitations and finding my work-arounds to fill in the gaps for things I can no longer do. Life goes on...

 

Which brings me to why I typed in bold a part of your post. I would highly recommend seeing if you can locate a stroke support group to join for you and your wife if you can find one that meets. My rehab was greatly influenced by those meetings at a local hospital. The benefits are unmeasurable, and friendships are treasures.

 

This stroke support internet family has a ton of wealth and experience to share also. No two of us have the same brain affected areas and/or limitations and can offer invaluable advice. The most common of which is the weakness and or side numbness. Mine is the left side, I'm right handed so that was a small plus. Brain endurance and emotions are a common condition as is short term memory issues. Yea, there are many things I can no longer do these days but I try my hardest to find those work-arounds to fill in. 

 

Keep on keeping on, things do inevitably get better, improvements will happen, everybody recovers differently and keep the faith..

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Anne has a LOT of anxiety and can't be left alone for very long

 

I also suffer from significant anxiety.  I've always bee mildly anxious; since my stroke it has been overwhelming at times.  I have learned a few things that help me, some straightforward like stopping, closing my eyes and breathing slow and deep, others are a bit more analytical.

 

The breathing thing seems to work well for a range of people.  It's easy.  Close eyes, breathe as slowly and deeply as possible.  Focus on the feeling of the air flowing in and flowing out.  As simple as that.  I do it for as log as it takes to feel calm (probably 2 or 3 minutes at most).

 

The biggest hurdle is remembering to do it.

 

 

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On 12/23/2019 at 11:12 AM, DarrellF said:

I want to thank everyone for all the messages of support and hope.  I read all these posts to Anne and we cried a little, but there is hope.  Anne can speak although it is difficult to understand her, although her speech has gotten louder over the past three months.  She does attend rehab but we are expecting to change providers in January.

 

Her work and insurance has been pretty darn good.  She will transition to Social Security Disability and Medicare over the next few months so hopefully that won't be too painful.  Many of the rehab specialty programs here do NOT take Medicare.  Her eye therapy doesn't accept insurance at all, but I can submit claims on our own.  I'm learning to navigate (and argue) with the system.

 

Anne's shaking, coughing and choking are the worst symptoms.  I do believe that she can overcome the swallowing issues.  We have a neighbor whose right vocal cord was paralyzed during an operation.  It took three years to get his voice back and now (12 years) you can't tell it is paralyzed.  I hope and pray the shaking can go away.  That is driving her crazy.  Her memory and thought process are intact but she is constantly clouded and distracted by the shaking.

 

Anne has a LOT of anxiety and can't be left alone for very long.  I am with her from 6am - 8pm and rarely leave her side.  I've told her we need to find a way for her to be alone for periods of time but that is a tough battle at the moment.

 

Thank you again for all the kind words of support.  I hope we can interact with the members here more often as the months go by.

 

Darrell

Darrell, I was reading over your post again, and did some searches on stroke tremors. I know that so many things and challenges are new for the both of you. Have you both gave any thought to certain medications for various types of tremors. There are Beta-blockers, anti-seizure meds, tranquilizers (benzodiazepines) parkinson's meds, botulinum toxin to name a few I read about doing a search. I'm sure there may be more specific medications that may help in the short term. Just another option to consider if you may. I have a prescription for Xanax (benzodiazepine) that helps anxiety when I get a little more emotionally charged it helps to calm me a bit but is known as a medication that can help with particular tremor types. 

 

Additionally of course meds can and do have certain side effects, maybe you can find one that will help with minimal tolerable side effects.

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Darrell. I'm glad that Anne's work and insurance are on-board. That, right there, will save you a heap of problems. 

Swallowing problems often accompany brainstem strokes, and can be difficult to deal with, especially if you're eating with others, or out in public, and cough so much that you sound like you're about to keel over. Not to mention how embarrassed you feel. My speech therapist taught me to stop eating when this happens. NOT JUST UNTIL YOU STOP coughing, but give your throat muscles time to rest and calm down.

30 min. or more. My swallowing is a lot better now than it was, but I still cough, even though not as severely, or for as long. 

I'VE NEVER shook as you describe, but I do know that there are meds for shakng due to Parkinson's, so maybe there's one that will help Anne. Ask her doc.

   ANXIETY? YEP, ME TOO. My husband couldn't even cut the grass....If she doesn't have a cell phone, get her one. It helped me a lot. Just hearing his voice, and knowihg he was there. Eventually, I STARTED HAVING PANIC ATTACKS, AND WENT ON MEDS FOR ANXIETY. THEY HELP IMMENSELY. Good luck with everything, and update us when you can, Becky.

 

 

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Hi Darell... I also had a stroke due to AVM bleed on the right parietal lobe.I had a massive bleeding in my brain that caused a lot of blood clot.it took the surgeons  four days before they can do surgery and dissect my avm.. my whole left side from head to toe was paralyzed and was cold as ice. . I had no balance at all. There wasn’t any movement on my left side of my body.  Surgeons and doctors said I wi be in a vegetative state and will be on a wheelchair for the rest of my life.  I can’t even sit upright because I don’t have any balance..me left arm and hand doesn’t have any sensation. Tell your  wife to never give up. There’s always hope. I worked hard on my PT and OT.  I  had my stroke September 2018, I proved all my surgeons and doctors that they’re wrong. Now I can walk without any aid. My left arm and hand are moving, although still very weak but at least they can move now compared to before when they’re  just completely dead. PRAYERS and PATIENCE  is the key to our recovery.  Never give up.  Recovery takes time. Be thankful that you were given a second chance in life.   Whatever you do in rehab, do them also at home. You will see little  improvements one day  at a time.   I will keep you guys in my prayers..

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On 2/23/2020 at 5:08 PM, OGL said:

Hi Darell... I also had a stroke due to AVM bleed on the right parietal lobe.I had a massive bleeding in my brain that caused a lot of blood clot.it took the surgeons  four days before they can do surgery and dissect my avm.. my whole left side from head to toe was paralyzed and was cold as ice. . I had no balance at all. There wasn’t any movement on my left side of my body.  Surgeons and doctors said I wi be in a vegetative state and will be on a wheelchair for the rest of my life.  I can’t even sit upright because I don’t have any balance..me left arm and hand doesn’t have any sensation. Tell your  wife to never give up. There’s always hope. I worked hard on my PT and OT.  I  had my stroke September 2018, I proved all my surgeons and doctors that they’re wrong. Now I can walk without any aid. My left arm and hand are moving, although still very weak but at least they can move now compared to before when they’re  just completely dead. PRAYERS and PATIENCE  is the key to our recovery.  Never give up.  Recovery takes time. Be thankful that you were given a second chance in life.   Whatever you do in rehab, do them also at home. You will see little  improvements one day  at a time.   I will keep you guys in my prayers..

Thank you so much for sharing your story.  There are many similarities with my wife and its hard to read your post without tearing up.  The last couple of months have been pretty frustrating.  We've seen three Neurologists and no one will do an MRI.  Anne only had one MRI, which was two days after her stroke last April.  The doctors all feel that Anne won't recover which I refuse to believe.  I just want confirmation as to where her injury is and how severe (Brain Stem / Cerebellum).  She has been doing PT/OT/ST for months.  We tried Acupuncture in October.  We started vision therapy in December and now have a prism in her right lens that is helping her work on the double vision, however she can't look up or down and the doctor says the paralysis is likely permanent.  Although her eyes are getting better and they are finally reacting to light, albeit just a little.

 

Anne has just stopped using thickener but still has issues with coughing and chocking.  The right vocal cord is still paralyzed and hasn't improved although Anne is managing it better.

 

Anne still has "fogginess" and is confused at times.  It "feels" like it has gotten a little worse, but that may just be me.

 

Anne is so angry, frustrated and hopeless.  She wants to die and says I should put her in a home and forget about her.  She doesn't want to be a burden to me or our boys.  God,  it is so maddening.   Physically she is so strong.  Just doesn't have any balance and shaking in her right hand, head and left leg.  I keep pushing her and hoping we can catch a break.  We are now trying Micro Current Nuero  Feedback (MCN).  Its like a custom EEG and very low signal.  I have no idea if it will work but we feel we are running out of options.

 

I don't come online here much.  Just really busy.  Way too many bills, etc.  But I do appreciate all the comments and stories.  Thank you everyone.

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