Motor planning still a deficit after decades


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Had my stroke 2002 and was paralyzed for months but finally was able to get out of rehab but was told I would need the full year to regain full use.  Got cocky as was back at work and bounced down a stair case and really damaged  the same left side affected and had to have surgery to put the major left leg bones back together as the foot was literally facing backwards.  Once I was off crutches for the next two months, this was all the PT could work with but even though the leg got strong again, the stroke was in the motor planning center which left a huge deficit in my planing for movements indefinitely.  

 

Fell during that last year six times and broke 8 bones total, so I am full of metal and screws and titanium hip.  The last screw was after I was off this forum.  Now when I encounter any rough terrain, stairs gravel or rocksI am unstable and fear takes over.   Still cannot get down steps without help.  Never was able to stabilize this motor planing efficiently no matter how hard I have tried in years of PT.  Every time I hit gravel or stair the fear resurfaces and feeling of spasticity.  The left sided neglect was somewhat affected but that went away yet notice it is starting to resurface again.  

 

I get by and really hope some day to be able to run again or ride a bike to just walk on a beach, yet this has never happened since the stroke and I so miss a bath,   Could get down, but absolutely cannot get up, no matter what. so no baths since 2002.  You get used to it but lately I miss so much  wonderful things I had decided I would never have again.  Now I am getting angry that I lost those wonders. Guess it is now because we all have lost so much lately.  Brings back what has been missed only now there is so much more.

 

Missed all the wonderful folks on the forum but have been working ever since the stroke which is probably why I did not improve as much as I should have.  The groups we had in the area only lasted a few weeks and then the moderator decided it was too hard for her.  We never had it again. Now with the virus it is even less likely.  The senior centers are not very This  state will improve as they were in Illinois which is where I originated.  Worked in senior centers for many years way before  my stroke.  The centers in Illinois were wonderful they can be but in this state I tried to help expand it but they were just unaware of the help that can be generated.  Now I am too busy working with trauma victims to start a new endeavor but would love to join a group if one was started in this state.  

 

Needless to say--My biggest problems with forums, I am just too wordy but promised to practice to get less verbose.  Cannot promise it especially since I spend a lot of time alone and the words just erupt in me and blurts out text, totally boring folks with my endless truth spewing.

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Hey Marcia!!

So nice to hear from you.

 

I'm sorry that you have been down, but glad you have chosen to come here to discuss.

 

There are so many wonderful things on the "I used to..." list.

Maybe an "I can..." list to counterbalance?

 

You will never say too much or be thought of as boring.

 

We all need to talk, to vent. You do what you gotta do and say what you need to.

 

💚👑

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Hi Marcia  nice to hear from you again. Sorry to hear you've acquired more metal. That motor planning stuff sounds so frustrating. I could not cope if the floor was "out of bounds". 

Don't worry about long posts.

Heather 

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On 10/2/2020 at 5:09 AM, newlease said:

"Needless to say--My biggest problems with forums, I am just too wordy but promised to practice to get less verbose.  Cannot promise it especially since I spend a lot of time alone and the words just erupt in me and blurts out text, totally boring folks with my endless truth spewing."

Hello Marcia. So much of what you posted of I can share with you, especially the above quote. First off, today was no different from your very real fears of falls. Though I've never did the stair tumbling, I have had my share recently and particularly those that EMS has been called by my family at a god awful early hour. I hate any of those trips to the ER and have to go to enormous lengths to convince my family otherwise and send the EMS folks on their way. Additionally, having my wife call to my sister and BIL at 5am and have them drive here out of concerns is also a bit disconcerting though I immensely appreciate their wanting to help in any way.

 

I'm reminded that most recently just today, I had purchased my doctor recommended medication for pain relief and out of a most recent phone conversation with my sister I put in a call that I received the medication and wanted to give them notice as I have been alone now for several months as my wife needed to stay with some of her friends as this COVID stuff got into full swing. She traveled to a remote location in a more quiet country setting here in North Florida. She really needed this as she was really getting panic stricken being home with these travel restrictions and worrying to the point of tears about how serious the threats of the virus made her. She is always used to daily visits with friends and normally a very social butterfly type so, it was really wearing on her...not to mention the panic of having to spray down and disinfect the house with her home-made disinfect sprays was killing me with the a/c running and a house full of that vapors, honestly I had to close my bedroom door and open a window to just breathe.

 

Long story short, she's out of town and I'm alone with the exception of my favorite buddy, my cat Fuzz. So, with a forewarning call put in to my sister if I take the pain medication for intense neuro pain, she has great concerns about my balance and falling again due to the meds, bless her heart. Needless to say, I took no medication today and stayed on two feet safely without cause for alarm. It's one of my biggest post stroke issues like you, falling or my fear of steps or uneven grades. Whereas in my prior life I could walk on steel structure beams hundreds of feet in the air across a steel beam of about 12" without support or fear of falling like it was just laying on the ground and casually walked the length.

 

And finally, getting back to my original quote from your post. I recently posted in a topic of Janelles about "Roll Call" where I made reference to staying on the periphery of the forum, and just reading and doing more listening. It was also my issues of running on in my posts and being a bit verbose myself, on more occasion that I care to admit. When I find myself deleting more of my dialogs than actually hitting the "submit reply" button, my tendency is to pull back, and just stay on the fringes quietly. I have more of a tendency of boring myself than others firstly, most here have luckily escaped those posts by my deletions before seeing the light of the forum. This has been a dramatic change since I stroked since my prior pre-stroke days. I was actually very quiet, reserved, introverted type...I know, it's hard to imagine by my long winded stuff. It's hard to turn off the words and thoughts that I've mentioned in the past come out like an "out of control" train on the tracks heading for the inevitable disaster ahead and cannot stop it! So my solution personally is going dark. That too may not be the best overall suggestion either. Maybe the forum should have a subsection just for folks like me that are forewarned of long winded dialogs. :-)

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Oh...and an afterthought...I know, hard to imagine I'm back again right? I use a 3-legged chair in the shower these days. I was just thinking about your comment about difficulties in using the bath and exiting!

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What is "going dark" mean? You mean not going on line or turning off the lights?  Ha.  I find I need to click my fingers to slow down and sing sometimes when I need to pace myself slower so I do not fall.  The slightest rock out of place can throw me off and install a fear based response.  This was mainly because after the first four months, If I did not say this initially, I was not longer paralyzed and ran down the stairs and the foot hit the step wrong and literally faced backward breaking the tibia and fibula needing surgery.  I then had to learn to now walk with crutches for a few weeks until I could put weight on the leg.  This lost all the relearning and reconnections in the brain that take a year per the kind of stroke I had.  the fall was never worked through and that is the problems. I really need a somatic experiencing coach to help me work trough the fear since I broke so many other bones in falls, so I know how upsetting those falls were for you.   I wish I had really worked through each fall instead of pretending I was dynamo.   I would be a lot better off now if I had had someone to help the fall recoveries when they occurred.  I even was hospitalizing a woman when I broke my radius and ulna and still dealt with the patient and the police who brought her into the hospital and kept doing paperwork on a broken arm for the police and courts.  this is not the way to deal with breaks.  It needs tender loving care for those falls and slowly reacclimatize, not jump back into the game without thought.  I learned the hard way now all those falls are still stuck in my body.  BTW if you are from Florida there. a great doctor of PT who is on line for stroke victims for free.  Her name it Tara Tobias and she really helps with just how to walk and stand so one does not fall.  thanks for sharing you lengthy dialogue.

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3 hours ago, newlease said:

What is "going dark" mean? You mean not going on line or turning off the lights?  Ha.  I find I need to click my fingers to slow down and sing sometimes when I need to pace myself slower so I do not fall.  The slightest rock out of place can throw me off and install a fear based response.  This was mainly because after the first four months, If I did not say this initially, I was not longer paralyzed and ran down the stairs and the foot hit the step wrong and literally faced backward breaking the tibia and fibula needing surgery.  I then had to learn to now walk with crutches for a few weeks until I could put weight on the leg.  This lost all the relearning and reconnections in the brain that take a year per the kind of stroke I had.  the fall was never worked through and that is the problems. I really need a somatic experiencing coach to help me work trough the fear since I broke so many other bones in falls, so I know how upsetting those falls were for you.   I wish I had really worked through each fall instead of pretending I was dynamo.   I would be a lot better off now if I had had someone to help the fall recoveries when they occurred.  I even was hospitalizing a woman when I broke my radius and ulna and still dealt with the patient and the police who brought her into the hospital and kept doing paperwork on a broken arm for the police and courts.  this is not the way to deal with breaks.  It needs tender loving care for those falls and slowly reacclimatize, not jump back into the game without thought.  I learned the hard way now all those falls are still stuck in my body.  BTW if you are from Florida there. a great doctor of PT who is on line for stroke victims for free.  Her name it Tara Tobias and she really helps with just how to walk and stand so one does not fall.  thanks for sharing you lengthy dialogue.

 

Yes, just reading and refraining from posting on the forum. Kinda sparing the good folks here a break from my longer posts that may or may not make any sense! Thank you for the reply and tip about the PT doc. Unfortunately with the myriad of other more pressing issues currently the likelihood of doing any PT would be slim. With that said, now if you have a MSW therapist or free online psychologist, I'm in. ;-)

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Guess I was right about long posts as Will explained as well.   Hope all goes well for you and all on here.  Take good care as I shall spare you all as well.  Have to empty the brain in other ways to clear way for healing this overwhelmed neurological system anyway.

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Welcome back Marcia, I must admit that I'm not good with long posts. Dunno whether its my short memory or my ability to concentrate for any length of time but whatever the reason it forces me to skim read. When I see lots of words I panic and immediately l think  "I cant read all that.". 

Here spring is racing away on us. I'm in shorts as I write this and the temperature is warmer than one would expect for this time of the year.  Several uncontollable fires have broken out in the South Island, again unusual. Last week they were in snow!

Wierd.

Deigh

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Deigh,  I do the same thing but seem to forget it when I am writing.  That is why my own entries bore me to death.  I edit them but that takes even longer.  I do think this has a lot to do with the stroke of long ago as I actually feel spastic when I try to slow down.  It was actually what they told me when the paralysis was waking up that the faster I walked would be a problem in recovery.  Even though that made sense it seemed to make it more difficult to walk, so I know the motor neurons were really confused in the repair work they were being forced to do with my speed and also not secure as time showed.  I do it I my writing and that is really due to the music piano playing.  I do not now how to slow down the fingers.  It would be great if you had my finger speed and I had you reserved gait perhaps when I walk.  Kind of like rubbing the tummy and tapping the head. My body an do that but the walking and typing have their own rhythm and then I fall or fail.  Timing, like in music.  Prelude to the Afternoon of a Fawn needs to play in my head when I am typing or walking.

Did it again.

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Heather,  I will look into the blogging.  Have to get on with my taxes which push me into yet another stroke.  Life in American is like having a stroke all over again. This is probably why I need to avoid all forums as my mouth is not silent with truths as I sincerely think this is what adds to repression that cause the lurching into the nervous system overtired thus causing the fear to jeopardize the brain transmitters. My eyes when I read what I write wear me out and this is bad for a forum unless I can get to slow down my pacing.  Miss all of you most profusely.  Lookin forward to hear what new exercises you have done as your PT are so good.  I finally found one that knows her stuff and then the virus shut us down somewhat.  I look forward to going back to do some cranial sacral work soon.  

 

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Will, I liked your posts and learned a lot about you and that is why I could tell you about the gal in Florida.  I get a lot of everyones posts especially when my eyes are not tired.

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I miss being a senior member as I once was.  Feel demoted but then it is only fair due to my inability to do the new technology..  haha

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Deigh,  BTW, love the pix.  You look like a real musician!!  Need to play the part in your performances.

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I love reading posts- long or short, but with nystagmus still in my left eye, it's difficult to read long posts because I keep losing my place. But I can find it eventually, so don't let that keep you from posting long posts whenever you want to!   Becky

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Becky,

 

That was so kind.

 

Will keep you in mind when my fingers are racing and the mind spins out.  It is like music.  Played a piano since I was four years old, got a masters couseling and also in piano and music therapy.  Used both endeavors for 28 years to help people.  When I had the stroke I was not able to play well, as readily.   The counseling was not gone but the music was.

 

My recent speed made me decide to try again to try to play all the music that sits on my piano reminding me of the loss.  I think it is interesting how life is always evolving.  Thanks for you message.  I will hold fast to my dreams.  

 

Hope you eyesight improves.  Enlarging my screen helps me when it gets hard to read so I do not lose my place.

 

I missed this forum as people on here always help inspire me.  Was  losing inspiration until a friend on here reminded me that I needed to get back on line. 

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Marcia, I'm so glad you're back. your humor and storytelling is so accurate with many of our situations. Missed you

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Thanks.  Missed the folks on here, too.  Wish I could not take my self so seriously but will work on it.  I do know that so many people are just beginning to think like a survivor and stroke victims have a stronger understanding than so many.  Was doing a grief group with my dean of the school I was finishing who kindly  agreed to do a lecture to the seniors at the center.  She started out by saying she could see it in the faces of those in the audience who had experienced loss as she looked around the room.  So it does not matter since the disguise merely protects me when I need it to but otherwise those who are victims of trauma will perceive a connection.   In past few years in my work I have realized this is called neuroception and almost all stroke victims have this skill.  Perhaps this forum keeps us, in some way, as. a reminder we are not alone in this newly quarantined world.  Take good care and so glad to be back and hear how well you are coping.  It give me hope when mine waxes and wanes.

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Marcia none of us are perfect and there will always be good days and bad days. We've just moved to daylight saving time here and as usual I'm not adjusting well to it.  Getting up "an hour earlier" sucks and I feel like I get less sunlight for the first month of it. I think they move the clocks too early in the season. Spring has barely started, so I feel like I'm back in the depths of winter.  All my energy has gone. But maybe that's also partly due to lockdown this year. I'm beginning to feel like they'll never let us out. I want to go see my Mum, but she's in the safe zone and I'm in the hotspot so it's not allowed.

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Oh, sorry for your quarantine from you Mum!  It must be hard on both of you.  It is bad sign for our times but locking into your past joys with each other might help get you through the. hard times.  Know what you feel, being cooped up.

 

Never liked to sleep much and fight it as a need so as not miss anything.  Notice now I just love wallowing in bed to stretch and cozy up to the linens for soothing self, as if I am almost regressing into a need to be nurtured, if only from the linen.

 

Notice if I do not have a purpose, I get worse, no matter what the season.  I dread our winter.  The forest fires made the last signs of Summer awful in an area that is known for fresh air. and beauty.  Last month that was sabotaged here.  The ocean air brought the smoke back onto the continent for the first time since I lived here. Last year we had some from Canada but this was from the US coastal forest fires.  All this beauty ruined throughout the entire coast.  Ancient trees ruined.  Makes one pause but the mountains are still glorious.  Hope Springs eternal and you enjoy yours soon.

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Heather I really don't get why the east still has daylight saving.  We voted it out years ago, never to return. 

 

Hopefully the hotspot will fade soon and you can see your mum.  I don't follow the news like I used to, but do believe things are getting better.

 

💚👑

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Perhaps a full spectrum bulb or a SAD light when you are reading for a half hour or so..  I have one in the office that was super cheap and has an ionizer connected to it.   I daily just use the ionizer but the right is there when I feel light starved.  My cats always knew where the full spectrum bulbs were and fought to sleep under that light when there were others in more comfy places.  It was uncanny.  Also we had a psychiatrist using offices when were were in staff meeting and he would always pick my office when he had used other offices, but then I had them put in my ceiling lights, he would go in my office.  I never told him why, It was just fun to know the results.  I cannot remember if I ever did tell him.  haha. I also take Phosphate Serine when it gets too gloomy,  It is used for Seasonal Affective Disorder as I live in a rainy area and SAD is common here.   Also take D K, and zinc to help with low sunlight.  Hung up on Lipids for the virus as that was recommended to me from a friend in the UK.  I rarely recommend oral anything except for the sun and cirus concerns  but only when approved by the docs as many of mine have recommended all I mentioned her, including the light.

 

Sorry, it I is like a woman on speed, this writing obsession.  Probably being alone too much makes it worse.  I get so lonely when I am home.

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Thanks, Willis.  I missed your😃 message.

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