Jump to content

Recommended Posts

After my stroke I was initially quite interested in the novelty of it, and liked all the attention, although most aspects were quite a drag.  My family was super-supportive, and in may ways it was the first serious holiday that I had had in 20 years.  From there, things kind of rolled on to everyday life, with all the followups, fights with insurance about whether I was actually disabled ("your family doc reported that you were in a good mood, so we have decided that you are cured").  Wishful thinking about neuroplasticity (I hate Normal Doidge).

 

Only now, three years later, has it *really* sunk in that this is it.  This is as good as it gets.  I'm also realizing (deep down) that I am one of the really lucky ones; cognitively I'm not *too* bad, physically I'm relatively good (apart from fatigue),I have a loving and supportive family, I can still work (sort of).

 

This is all well and good, but I have finally reached a point where I can begin to grieve for my lost self.  The one that will never come back.  The things I used to be able to do, the way I used to feel, the sense of belonging in the world, of being equal with everyone else.

 

It is painful, but it is also good.  I am looking forward to this journey, which I think is long overdue.

Share this post


Link to post
Share on other sites

Hi Paul, I can relate to this. As soon as I reached the point where I accepted the fact that I would not have a full recovery and realized my therapists were teaching me strategies to live with my impairments not to return me to my pre-stroke self, I slowly started to see that I did still have a full and productive life to live, even if it meant giving up my job of 20 years. But as soon as I made the decision to keep moving forward and stop looking backwards, the sadness has been replaced with a feeling of hope. Take care, Michelle

Share this post


Link to post
Share on other sites

I have to agree with Michelle, the key to this is to keep looking forward not back, but grieving for the lost you is part of making that decision to go forward from here. Neuroplasticity is a thing and when they work out how to really make it happen that will be wonderful. But the reality is that for most of us getting it to do what we need/want takes more consistent effort than we can manage. The other aspects of life still have to happen as well.

Share this post


Link to post
Share on other sites

Thanks for the kind words.  I know that neuroplasticity is real, without it I would be far worse off.  

 

What I object to is Norman Doidge, who writes best-selling pseudo-scientific (anecdotal) books about how if you just try hard enough your brain can recover from any insult.  He's peddling snake-oil and setting unrealistic expectations.  I guess that they helps to motivate people to try harder in their rehab, but at the same time he chases the media limelight whenever he can proclaiming that the individual can fix any neurological deficit.  Which is patently false, otherwise we would all be hopping and skipping around like little lambs.

 

Sorry to unload, just spent the best (worst?) part of the day trying to reconcile my bank statement.  So much for plasticity!

Share this post


Link to post
Share on other sites

I relate in so many ways. I went to therapy, three different kinds 3x per week for an hour each time for each. Basically 3 hours 3x/week. I had huge progress. Even though my stroke was somehow not diagnosed when I was admitted to the hospital... I didn't get the shot and I didn't start any therapy for approximately 2.5 months after... I still saw huge progress. After 5-6 months it slowed to a point I couldn't tell so easily when I made progress. I still whole heartedly believed I was going to therapy to "get all better". It was one day about the 10-11th month that my PT tried something that changed my life. I have worse deficits at night because I learned to use my eyes more than you normally would for balance... So when it gets dark I see less therefore my deficits get worse. All of them. Somehow she found this fact about me... My Neuro I'm not sure but that day she took me into a room without windows, pulled the 1/2 ball balance thing inside. Turned off the light and said "OK balance on the ball thing". I can not see in the pitch dark... Literally I am blind, I also can't tell where I am in space (right side up, upside down, etc.), I also hallucinate things or see things that look like swaying ghostly motions. Like it's a curtain that is very see through being blown around by wind. It's just not there. I feel very nauseated. I can't communicate well. It is completely overwhelming. She came over and held my arm and guided me onto that 1/2 ball. Then she let go. That lasted about 5 seconds. I immediately had a severe panic attack. She opened the door letting in a little light and let me calm down and then moved around the room grabbing something and plugging it in. She then closed the door and flipped a switch that turned on a disco ball thing that went around in circles and all colors of circles raced around the room. She then wanted me to keep my gaze at a particular point and when a colored circle went through tell her it's color. The entire experiment failed miserably. She turned on the light I stood there shaking uncontrollably and I had a tremor in my right hand. I stuttered the question "Am I here to get better or to learn how to cope with deficits that will not get better?". Her answer left me in tears... My life at that moment was never the same. I went to my next therapy, speech, my therapist was shocked she asked what happened. She told me that day that we were just going to have a fun day no work. So I could recover. Since that day I have gone through the motions of "therapy for recovery". It's taken 3 years to finally start accepting the truth. I was exhausted and felt hopeless up until that point. Getting to that place... I finally had a moment of inner peace. It is when I could feel hope, happiness, acceptance, and I was OK. Yes... I too started to see a future, plan, have goals, feel that inner peace replacing turmoil. It is not me giving up it us me deciding to live my best life. A very heavy weight began to lift off of me... I can breathe. I still reaffirm my acceptance every day... Each day is different. I know some days this is better than other days. I'm happy with me... No matter what my challenges are any particular day. That's what I call seeing the light at the end of the tunnel. 

Share this post


Link to post
Share on other sites

Thanks, Tracy.  I guess that I'm going through that moment now, up and down, mostly down (would have happily walked under a bus last night).  This is a necessary step towards some sort of healing, but it is not easy.  

 

My wife was giving me some helpful advice this morning -- take things slowly, check what is happening, one step at a time, we love you.  All vey well meant, and will no doubt make me feel better as things improve, but in the moment just made me feel far worse.  I appreciate her motives and her love, so didn't say anything to her about how it made me feel; there is nothing to be gained by hurting her.

 

I am trying to find things to be grateful for, and while there are many of them, I'm finding it hard to feel gratitude.

 

This is one of the many places where this board is so amazing.  I can let down my hair, let my feeling out, knowing that there are people here who understand, who have been through it, without adding to my family's existing burden.

 

I just hope that I can reciprocate and offer some comfort to others, too.

 

 

Share this post


Link to post
Share on other sites
19 hours ago, PaulNash said:

 

Only now, three years later, has it *really* sunk in that this is it.  This is as good as it gets.  I'm also realizing (deep down) that I am one of the really lucky ones; cognitively I'm not *too* bad, physically I'm relatively good (apart from fatigue),I have a loving and supportive family, I can still work (sort of)

 

It is painful, but it is also good.  I am looking forward to this journey, which I think is long overdue.

May I say.. "Same" for me. I've seen that I've started to go into a funk after 10 years. I have exhausted many doctors to try to see if it 'may' get better and this is it.  I was just talking to someone about having a supportive family. Yet I feel like I could run the world then in a blink of an eye, I'm knocked back down. I've truly been a depression for the past few weeks that hit it's climax a few days ago. I'm slowly getting back up and functioning. It happens but I chose not to always talk about it. I'm looking forward as well and I wish you the best for all you've gone through, you've achieved so much. Keep it up :bravo:

Share this post


Link to post
Share on other sites

Paul I for one can really hear what you are saying and understand your emotions be they good or not. You are right it is stinking hard! I have a feeling that where you are will evolve when you grow from the inside out. That is in my opinion the most frustrating and painful process in our recovery. D*amn... The human spirit is stubborn... They don't like or want change/acceptance. For me it was do I sink or do I want to swim to the shore... Which is safer. It came down to an internal misery that I had nothing in my power to fight against. Turmoil... Heart and soul my brain was not well enough to fight this brutal inner battle. I closed my eyes and let it wash over me. Once I did at that moment I felt tons lighter and my breath was easier. OK so that is my dramatic side writing a spiritual moment. 🙂 It happened though, in a moment (which is just an amount of time really... Different for everyone). As I have said so many times I go through this affirmation daily. Each day is different physically, mentally, and just as Kelli has said seasonally. I am not magically anew... Accepting... Deed done. It is still daily work and I am not perfect some days are much better than others. I'm still in the tunnel but I'm moving towards the light. Who knows when or if I'll get there. I have a feeling I might arrive but then there will be times when I am back inside... I am just trying to ensure that I never lose sight of the light. It gives me purpose, hope, initiative, aspiration, and keeps the weight on me bearable and progressively less. Bows. 🧘‍♀️💆‍♀️☁️🎗️💁‍♀️🤗 (thank you, thank you 🤫 drama queen... Smiles). 

Share this post


Link to post
Share on other sites

BTW just poking fun at my self... The message is truth I just am dramatic. 😊

Share this post


Link to post
Share on other sites

Tracy, I'm going to hijack this thread long enough to say that 'I'm sorry about what that neuro made you endure."I have some of the same issues that you do, only less severely. My "night blindness" only lasts for a few minutes for instance.   But I also have a profound hearing loss which affects my balance. Putting me in that room would've been like putting me into a sensory deprivation chamber.  And, with my anxiety disorder ( again, milder than yours)I would've flipped out. I think that she should have quit the experiment when she realized you couldn't find the 1/2 ball the first time. I could understand if pushing you more was so that she could design a treatment approach for you. But there isn't any treatment, is there?  Becky

Share this post


Link to post
Share on other sites

I sorta feel the same Becky. I haven't found a successful treatment other than nightlights and leaving a light on in another room (a small light). I need that light to ground myself. I am very used to where my light source is and my eyes naturally look to that area when i wake at night. It's a weird stroke thing that not many people experience. It was the most negative memory of my therapies. Speaking of no treatment is was less than a month until my PT decided I had come to an end of my PT. Thanks for understanding...not many do. 🙂

Share this post


Link to post
Share on other sites

BTW...I am past this moment of crazy. I keep telling myself "This too shall pass" and even if the deficit is still there it does pass. 🙂

Share this post


Link to post
Share on other sites
On 4/1/2019 at 9:02 PM, HostTracy said:

Turned off the light and said "OK balance on the ball thing". I can not see in the pitch dark... Literally I am blind, I also can't tell where I am in space (right side up, upside down, etc.),

Tracy,  have you tried Night Vision Yellow tint Googles?  After complaining about difficulty with low light or night vision with the medical community and being greeted with "shrug of shoulders", I turned to the vision science community at a top university.  They ran advanced tests of my retina as well as battery of vision tests.  It turns out that my contrast sensitivity is greatly diminished explaining my poor acuity in low light conditions.  So, I bought these "Night vision Yellow tint goggles.  It works and improves my night time vision.  Like you, my vision issues is not due to getting older.  It was like a switch that turn off after my aneurysm rupture and subsequent stroke.  The light halos is still a mystery.  

Share this post


Link to post
Share on other sites
On 4/1/2019 at 6:03 PM, PaulNash said:

Thanks for the kind words.  I know that neuroplasticity is real, without it I would be far worse off.  

 

What I object to is Norman Doidge, who writes best-selling pseudo-scientific (anecdotal) books about how if you just try hard enough your brain can recover from any insult.  He's peddling snake-oil and setting unrealistic expectations.  I guess that they helps to motivate people to try harder in their rehab, but at the same time he chases the media limelight whenever he can proclaiming that the individual can fix any neurological deficit.  Which is patently false, otherwise we would all be hopping and skipping around like little lambs.

 

Sorry to unload, just spent the best (worst?) part of the day trying to reconcile my bank statement.  So much for plasticity!

I agree with you with the dangers of pseudo-science and that there are people taking advantage of the disabled.  But, I have been conquering some form of disability every year either through Neuro-PT, Vision-PT or medication.  I am approaching Year 5 (April 24) and I am finally able to correct some of double vision not through crappy prism glasses but through vision therapy.  Honestly, this therapy is the most difficult than Neuro-PT balance exercises.  It feels as though some one puts sand in your eyes after the therapy.  But, now I can somewhat control the double vision with non prism glasses improving my reading speed as well as duration.  Previously, my reading speed was greatly diminished and I can only read for 1-2 minutes at a time.  Now, I can read continuously for 5 mins which is a big win for me. My fellow survivor friend was able to somewhat correct her spastic bum foot as well as improving her gait at Year 8.  She had speciality footwear made as well as botox injections.  I understand that everyone recovery is different from others but I found that the strategy is fixing one disability at a time as stroke survivors typically have multiple issues.  Realistically, some issues will may never improve but others might.  Trying to resolve all of them at the same time is overwhelming and frustrating.

Share this post


Link to post
Share on other sites
On 4/2/2019 at 6:06 PM, becky1 said:

But I also have a profound hearing loss which affects my balance.

Becky, this quote just gave me an anxiety attack.  I also have single sided hearing loss in my right side as well as 40% vestibular loss.  In my early recovery days, if I walked up in a stair case, echos along with my imbalance and double vision was extremely disorientating.  As part of my recovery, I challenged myself to go the same staircase with the echos as well as other areas where it would echo and eventually, I acclimated to the environment.  The weird thing with my hearing is that I have significant single side hearing loss but I do not wear my hearing aid.  Since my hearing loss is most likely central nervous system issue, somehow my brain has adjusted.  Tinnitus has not gone away.  As I am writing this post, I still have constant ringing.

Share this post


Link to post
Share on other sites
10 minutes ago, 2Fight said:

I also have single sided hearing loss in my right side as well as 40% vestibular loss.  In my early recovery days, if I walked up in a stair case, echos along with my imbalance and double vision was extremely disorientating.  As part of my recovery, I challenged myself to go the same staircase with the echos as well as other areas where it would echo and eventually, I acclimated to the environment.  The weird thing with my hearing is that I have significant single side hearing loss but I do not wear my hearing aid.  Since my hearing loss is most likely central nervous system issue, somehow my brain has adjusted.  Tinnitus has not gone away.  As I am writing this post, I still have constant ringing.

Wow...ditto. I have the high pitch tones..often.i don’t go out much , if any, for my vestibular issues, nystagmus. I think that’s why I find it so difficult to reach full acceptance 

Share this post


Link to post
Share on other sites

>>  But, I have been conquering some form of disability every year

 

I'm with you on that.  Things have improved a lot for me over the past 3 years.  My rant (brought on by trying to reconcile bank statements) was against the snake-oil sales people like Doidge and Novavision who happily explain the if you just try hard enough you can regain complete function, regardless of the neurological damage.  Oh, and they'll take your money (lots of it) to help you try.

 

I've gone from barely being able to walk to running a comfortable 5 or 10 km.  I can concentrate on technical stuff for a couple of hours at a time (and then nap for an hour or two).  I can read (albeit only 4 or 5 pages at a time, before I get exhausted).  And I am sure that these things will keep getting better.

 

But I am also taking time to mourn the loss of some parts of me that will probably never come back.  And that acceptance is not easy.  Or not for me, anyway.  

Share this post


Link to post
Share on other sites

I've just started watching this show called Manifest. 

 

One guy said to this girl:

 

Don't waste your miracle on your pain.

 

I really wanted to share that here, and Paul's thread seems the perfect place.

 

Yes, we definitely need to grieve, and accept our lives as they are now.

 

I'm pretty sure that most days, I've reached the acceptance stage.

 

I don't want to waste time wallowing, I want to enjoy the miracle of my life.

 

Paul, as you continue your journey to acceptance, we are along for the ride.

Share this post


Link to post
Share on other sites

Hi Janelle

 

Thank you.  This community has helped me an enormous amount.  I'm still bouncing up and down more than I would like to, but things have improved significantly, and seem to be getting better day by day.

 

At least part of the problem (but not the biggest) was not keeping track of my spoons!  Having realized that and working out how much I can do, and what order to do it in, things are getting easier.  It makes it easier for me to balance work and life, so that the "life" part doesn't get lost

 

I've also started cancelling some of the my medical appointments.  I am articulate, have a weird ABI, and some unusual deficits, so the local stroke hospital loves to use me as a demo for their patients.  While I want doctors to learn how to recognize unusual strokes, that is not my full-time job (yet).

 

And I have just been accepted for a CBT program at that hospital, starting in three weeks' time.  I can't wait!

 

Again, thank you to everyone on this board.  I find great comfort in reading about other survivors' lives, how they cope, their joys, their hardships.  This group is the silver lining.

Share this post


Link to post
Share on other sites

Paul I have been rereading your thread and it made me think of something I've learned recently. You stated: 

I am trying to find things to be grateful for, and while there are many of them, I'm finding it hard to feel gratitude.

This is such a huge delemna. Especially when everything around you is not in the best positive light. I know right after I was cognizant after my stroke... My reality was excruciating. Every part of it from physical to mental to relationships to time to perception to reasoning to opening my eyes to using my brain for anything. I was very paranoid, scared, and had so much anxiety I could feel it rise in my body, up my chest, up my neck, through my jaw. I was afraid my brain or my heart were going to explode. First I am being absolutely dead serious. I had a copy of the serenity prayer and chanted it over and over and over. My fingers didn't write well at all (due to dysmetria a type of ataxia) but I fumbled around until I found a notebook and pen. That day I started to do something on my own (I still had no idea what was wrong with me). I wrote 5 things each night that I could remember that made me feel grateful. Sometimes I wrote right after something happened because I would forget. I barely wrote one word things at first. Like: kitty, food, bath, bubbles, sun. Then 2, 3, 4 and then small statements. Like: went potty, took bath, write things, good soup...took a bubble bath, sat in chair for 10 minutes, awake for 20 minutes, Hailey read to me...my kitty curled next to me and purred, I sat in the living room with family for 15 minutes, my dessert was yummy. Somehow...someway this little thing helped me. Today I still have severe anxiety disorder with panic attacks. It can get in the way of many things and severely limits me. My therapist (psychologist) suggested I start a notebook using the GLAD method. Essentially very similar to the gratitude writings I had done. G=gratitude... L=learned... A=accomplished... D=delight. So every day i write a new GLAD in my notebook. The key is that it does not need to be big or lengthy. Example Day(write your GLAD about your day) : G-grateful for my mom L-learned a new word game A-accomplished washing my hair D-delighted when I watched kitty videos. If your day is ever like one of mine then another example might be: G-my bed L-patience A-brushed teeth D-my kitty. Some days you can be ver descriptive others maybe not but the good thing is it doesn't matter. Sometimes I am grateful for my bed, sometimes I only brush my teeth, and then sometimes I can write down several things I have gratitude for, accomplished, learned, or felt delight in on a day. Go by how your day is today. 🙂 Anyway, I just wanted to share... I've had many days where I feel the same as you said. 

Share this post


Link to post
Share on other sites

Hi Tracy

 

That is wonderful.  I'm going to start today.  I know that if I can focus on the good bits, I tend to feel better.  You have a great way of making sure that you focus on the good bits every day.

 

You bring out a "focus journal", sell it on Amazon, and make a fortune!

 

       paul

Share this post


Link to post
Share on other sites

Paul

I never thought about it but you are correct on the grieving and the snake oil aspects of the stroke, excepting your future and recovery.

 

I went to PT 3 times a week, vision therapy 1 time a week and balance therapy twice a week for months, hell I did it for over a year and did it get better, honestly it did not but they all said you just need to keep at it and you will see the results.   :lol:

 

The only people that were honest through all of this were my PT therapist and my family Dr.   :happy:

 

My PT therapist said I think you have reached your limit of recovery, there is not much more I can help you with, you can continue what you have learned in your therapy sessions at home on your own, I think he was being honest.    :blushing:

 

The eye Dr would test me every 3 months and would report that I am making progress but to continue my weekly session. This was nothing more than a money grab :@#*%: 

 

My balance therapist said to continue to come in twice a week.  Again a money grab  :grrrrr:

 

My family Dr said it best, you will continue to get better albeit very slowly but be prepared that this is the new you after the 1st year. :terrified:

 

My insurance has a high deductible so I would make the payments out of pocket till I meet my deductible so in the long run it was revenue driven for a few of them as in vision and balance therapy, not results driven for the patient.......................................... me.

 

Sadly my personal Dr of 41 years passed away last year and that in its self is something to except, I have found my self calling his home number just to hear his voice on the message machine :feeling-blue: 

that's the hard thing, he was not only my Dr but my friend.

 

Just wish I had family that understands the old Ed is gone and nothing is going to bring him back, that's my hell I live thru on a daily basis.

 

Maybe I should start  :cheers: cant hurt....... but I can't that's not who I am......................... I'm disabled now   :yikes:    

 

Ed  :bye:

Share this post


Link to post
Share on other sites

Paul thank you. I hope it helps. About the "focus journal" you keep watching. 😉 I've got a few plans ahead of me. I'm slow lol but I am so thrilled to say I have future plans and aspirations. This is a more recent milestone that I have noticed happening. 

Ed, I love all of your smileys... They make me smile when I read your posts. What you said about family... 

Just wish I had family that understands the old Ed is gone and nothing is going to bring him back, that's my hell I live thru on a daily basis.

I relate to those words. Just this week I went to stay at my moms for a few days for a very necessary vacay from the rest of the world (let's just say... It's been a Very rough month). Once there I am trying to relax. The past week my anxiety has literally tripled and panic attacks are on the rise (no trigger right before). So the first night I spent 3 hours holding on to my sanity by a thread. My mom and step dad were just silent (to help me...one word and I start to go downhill again). This is just a little epilogue before the next morning. So after managing about 3 hours of sleep I got up and watched TV with my step dad at about 4:30. He gets up early every day. My mom and my step dad are my biggest supporters in my family. My step-dad is a Pastor and he has counseling training. So we talked. First, when I am that riddled with anxiety my stroke is a subject I ruminate over. Over time it gets old... I understand no one wants me to talk about it anymore. But it is in my face 100% of my existence. It is especially front and center when l am experiencing rough spots. The thing is that my anxiety and reactions are directly related to my stroke. If you want to know where the issues arise from in the brain... Put my stroke in the textbook. Guess what? I have accepted that for the time being it is not going to go away (again for my own sanity). If it ever does I will celebrate! 🎉 He asked me why do I feel like there is anything to have anxiety about. Without getting into it I answered him. It is/was several things but frustration I get from the inability to overcome or cope leading to my "bad" times is forever present. He ofcouse countered with all the reasons I have to be happy and not in anxiety. He said "You can do anything you put your mind to.". So we spent 2 hours discussing the very thing you speak of, well sorta. Me trying to tell another non stroke human that I have many "unseen" deficits that include Psychological deficits that may not go away and that I'm OK with that knowledge and to allow me to release the insanity and I know over an amount of time I will get past the "bad" moment. I practically had to say "pretend I'm a stroke survivor and my whole left side is paralyzed. I may believe I am going to move my arm one day, I may completely put that word acceptance out of my vocabulary, I may work hard each day to do what I was taught to do to improve, I may use my brain to tell/will my arm to move but none of those things means that 100% one day it will. He tried so hard to change my thought process. Never say never, never give up, never lose hope... OK I get it!!! Me accepting me is not me giving up! :pounding-headache:But I can promise you that my arm may never move again. In his eyes, in most eyes around me... That is me giving up. I attest that I would love to own a cattle prod. :lol:

Share this post


Link to post
Share on other sites

I personally have come up with a word that describes most of us survivors to a tee but I will only put myself on this list, feel free to join that list.

 

I am a Strokaholic........................................................:scared:

 

All the therapy sessions, tests I have taken and being taught new way of living my life after my stroke.

 

I have learned they never planed on healing or bring the old Ed back........................ 

 

I was being taught how to live my life with my  new disability's.

 

I will put it this way do you think an alcoholic can drink more than the rest of us because there body's can absorb more easier or it takes more for an alcoholic to get drunk than us lightweights ????????

 

No there body's process alcohol the same as our body's do based on body weight and physical size. 

 

The  difference is they have learned to function better or hide it better just like us going to therapy and learning how to walk while still being dizzy after a stroke or living our life the best we can when one arm does not respond.

 

Yes I am a Strokaholic and I understand this is my new life,

 

I have memories of days gone by that the stroke has not taken from me and honestly they make the days a little more bearable while bring a tear to my eye.

 

I hope you all understand what i'm trying to say here, make the best of life................:humming: it only happens once and there are no time outs or do overs.

 

:bye:

 

Ed  

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×