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newlease

Stroke Survivor - female
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    199
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About newlease

  • Rank
    Mentor
  • Birthday 05/28/1947

Shared Information

  • Stroke Anniversary (first stroke)
    07-01-2002
  • Interests
    Reading, work, movies, ocean, sight seeing, cooking, shopping, television
  • How did you find us?
    Google Search

Registration Information

  • First Name
    Marcia
  • State
    WA
  • Country
    United States

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3,220 profile views
  1. I like Scott's response to others --There will always be those who don't get how life altering a brain injury is, but as I've told a few, they couldn't handle it, we didn't get a vote. Empathy for yourself is crucial. knowing you have come a long way and still can produce the wonderful words you enage in every day in your career. I would rather the words of someone who really does have tremendous understanding of the trials encountered than a naive human who has had no major crisis. This is your wisdom you impart to your readers. Inject time to your responses in your arguments, to allow the mind to catch up with what you probably know to be true of you would not have writeen it. I have worked with many authors and that is just part of the job, only now it seems your emotions might throw you off, but in that process you can only grow to be more affective if you take the time to explore answers. Might be fun for you to take a debate class. Granted I am not quite sure of the work you do , but Linnie is right, seeing a therapist might also help you deal with reducing you concern, fear responses and improve your coping skills.
  2. My stroke was quite a long time ago. As the brain shifts, new problems seem to arise, but what I find is to be kinder to myself, injecting time in my responses. They used to put age in these notes, so I have no understanding as to your age, but what I have found is keeping active. I enjoy continuing on my purpose in life, remaining productive and try to avoid regression which is largely by depression on occcassion. It is imperative to take time to relax. I learned in rehab years ago, that if you just sit or relax for a small amount of time, it seems to have huge rewards. If I had done more of that early on I might be walking better now. Meditation is really affective, if you have someone who can teach you TM, you might find this a valuable tool, better than mindfulness. Folks do not want to take time to really calm the brain down anymore, causing probably less recovery and more people having strokes. Give you brain time and enjoy what you do well, while adding new avenues as well.
  3. Agreed, I had to pay $1500 out of my pocket for stem cell replacement and my own doctors whould have been on board in the process. Now I am trying to ge another procedure in hopes I can walk semi normally again, but she brought up I could do the stem cell route again as it might not be FDA approved in this country. I feel everyone here knows I saw my doc today as I had four messages from stroke forum today when I returned home. So timely, but makes me so mouthy, or should I say fingering. Sorry I did not respond as I had not been notified that this site had more messages or I would have responded more to the healthcare controversy. It is good to discuss it as it impacts all of us no matter what country.
  4. Has anyone heard of Biophotonic light? Healing supposedly occurs in a NeuroKinetics treatment chamber.
  5. Janelle, Kids are very resilient and also self centered in many ways. It might be a fun activiy, if you can handle it, to pull out albums or phone pix nowadays and talk amongst yourself to remember the good ol' days. Nice time to bond and reassure they do remember. Also plant that seed in your brain that just maybe it will come back despite what docs tell you. My doctor today did not even want to hear about a new technique that might reconnect the nerves in the body. they just say if it has not returned by now, it wil not. I thought doctors knew about the new science that understand neuroplasticity. Whatever happened to doctors who loved to problem solve. Sorry, this came in probably at a bad time after my visit with my doctor. I so want a positive doctor who believes that things can reconnect. It is not right to have us give up hope. Miracles do happen and we were given a body that can repair. It is not our fault that the doctors are too busy to handle each case in a creative manner. I am so sorry for the negativity. I probably need to stop putting in my negative two cents. I feel that anyone under 40 sees anyone older as obsolete and if you are damaged no matter what the age, there is no longer a value in that person. I need to get on here more and read the cheerleaders. If we cannot do it for each other, then who can. You go girl and tap in your head and maybe the mind might solve the connection when you watch old dancing. Brain wash your mind to remember. Watch right before you go to sleep so your subconscious can work on when you sleep. That happened to me when I was paralyzed, my brain awoke in middle of nght and that paralyzed lege stretched all on its own. My subconscious did that. It was not long after that I could move. Doctors need to shut up and try new things to promote hope.I missed this guy!!
  6. So sorry you had to be exposed to this kind of bureacratic mess. It is hard enough to have a condition but to deal with these companies that are so large they cannot organize sufficiently to get what is necessary accomplished. On a positive note, I work with the military oftentimes and lately, after 20 plus years of inefficiency, they got two clients pushed through the system affectively with extensive assistance. It gave me hope that maybe these systems are finally scared enough to get thier act together. Went so smoothly. I worked because at the onset I answered the phone and dealt one to one with the referral source and united as a human to human instead of a gatekeeper who knows not how to get a task done easily and works with the rules instead of not reading between the lines of all that is written so no one can understand it easligy. Hope it gets you exactly what you are in need of. You deserve it.
  7. Pearl, this was good message. It really does pay to see the damage in the brain so you can focus on that spot to heal and also to get a semblance of the realisty of the situation. I can see it now an it was recently MRId and it has tno shrunk but my nerves tried to get around the area but there is still work to be done. Our brain is remarkable as all of you know so well. thanks, Pearls. Heather, I do not know how to do a blog. I am actually getting computer phobic so have to table even being on the computer beyond the eaiils and my work notes I have to do each week and insurane companies demansds. I am getting obsolete by the computer changes all the time. I am such a creature of habit. Just paying bills on line cause not only me but those who need to correct their errors admittedly do not understand. Just happened yesterday when a check I wrote in May just was processsed this week. The banker could not solve how to check the old statements. So it is not just the feeble stroke victims..haha We need to keep this people on their toes. We need to keep rehab/physical therapy even in our minds and daily life needs. At least I do or I get slack. I hope someay they do another MRI and my brain has expanded and reversed all defecits. Eating right, physical movement and places like this forum helps that immensely.
  8. Perseverance rings in my ears when I read your recent entry. You are a remarkable person and even though your body is challenging you, you persevere. Congratulations. I also do not like the cane because I noticed my shoulders rebel and my smooth walking could not pull it off with a cane. even though I fall less with one. I have been wondering if two walking sticks might be better as I notice more and more people walking down the road with them. think I might give them a tryout at a store to see if they help with balance when I am waning to go out for a walk in my garden. There are so many challenges in a garden and my cane is just not working and I noticed I was hoping I had my second cane when I was out there last week, but two waling sticks might help the shoulders since you grip them different. If anyone knows the answer, let us know. Colin, my condolences to you and family for loss of your brother in law's sister. So young. It is wise to teach your daughter to learn sooner rather than later. She seems like a realy gem. Gives her sense of purpose than just driving around friends. She now has the priceless cargo of her father. Bet that accident will cause some great sibling rivalry for you daughter to succeed. Got to laugh over these things and hopefully no one was hurt with the fender bender. It just gives you a reason to lay low for awhile. I am getting to like these moments at times. A chance to get out of the rat race since I cannot race anymore. Try to teach those around me to slow down. So wish my loved ones would take heed to enjoying these moments. I have a long way to help them put life into perspective. My guilt for being slow is almost completely gone and only rears its ugly head when I am around those that do not know how to enjoy the moment. That is certainly what these strokes have shown us.
  9. Kelli, thanks for the ideas. I work diligently in not hindering my moods with any kind of drug. Reality is crucial for the motor planning and to assure I quench the fear of falling by being measured in my walk. Daily I need too compensate for all the broken bones, hip replacement and restructured tibia and fibula to keep me aware of my own needs and what I can accomplish. I just cannot afford another broken bone. I need to ward off the polyvagal nerve from over reacting to fears of any kind. I have managed to do just that and try hard to avoid anyone putting me back in that overwired nervous system. I meditate regularly and do sensory exercises daily to offset the fears that come from other sources. The music I say inside my head as I do not want to miss a sound that might warn me of any impending doom, not that I am afraid of outside noise. My music therapy backround and OT when I was in rehab helped me learn to walk again. Snapping my fingers helped me get my pacing once the paralysis went away. For that, I am grateful. Wish I could go back and see those folks of years ago and start anew. Once I broke the leg, I was in a different hospital and rehab folks, The hip replacement rehab and hospital had a whole other strategy. The rehab for the stroke cannot follow the same rules as once you have a hip replaced there are certain exersises you can never do. I think part of all our issues would be if we could be so lucky to have our health issues with one group who knew us well, over the long haul. But in this fast and ever changing world, one accident begets one group of folks, another fall begets another group and so on. That is just life. Change, as you stated. Kelli, most of our problems can be solved by such a thing as this forum, where you can speak of the issues and people know you have something to say. Strokes are real and not just a mood disorder. So many do have strokes that affect the mood, but mine was the motor planning center and paralysis and had to learn to walk again as if I was an infant. All my problems from early childhood would never have led me to a stroke if those of authority took the information and talked about it instead of putting it aside so a young child had to wonder what is right or wrong or in need of help. We minimize young people problems and need to take more time to help those chldren, like your wonderful brood. So glad they have you to hear of their trials. It is so important. I bet they have learned a lot from you over the years. I think the problem with my daughter and her visit had a lot to do with my having to care for my son and all his open heart surgeries throughout her young life, even though I tried to be there for her as well. Being for months in a hospital for one child puts the other child on a back burner, even though I tried to be there for her. We used to spend all day Friday and Saturday in the music world of her violin work. I do not think it was enough. My son has more a handle on my needs as I was there more for him because that is all you have when you are at a chlld's bedside for months through many developental stages with all the repairs he required. That is the kind of care I hope everyone on the forum had in their ordeal when the stroke occurred. I felt so badly for the gal who spoke of rambling, just having to get on a plane, knowing she was in jeopardy. I am hoping we all can learn to articulate the need for help and how. I will work on this next time, If I get shunned, I willl remind them of the problem. I know my family probably want to think i am indestructable. Well, history surely has told them, this is not true. Warmth and kindness go so far in healing that nervous system. In fact, it is mandatory, or we are all doomed. I help people every week deal with healing their nervous system and it is very rewarding. I wish I had a therapist who knew how to do the same but I keep looking. Feldenkrais was a help until I had the hip replacement and cannot do the exercises and cranial sacral work helps somewhat, but I do my own healing in EMDR and other methods, but it is more helpful to have someone help with that. I am pondering going back to my old therapist who does more work on dreams and I do my own form of hypnosis. I cannot do EMDR walking as my legs are not working well together so far, but once I get them back on track I know that will be another avenue. If you use music, and it is not harmful to whatever stroke you had, a bilateral earphones can be helpful. I use them periodically but not when I am walking, only in meditation. I think I have learned so many tricks that if I could just get the motor planniing to reconnect after so many years of malfunctioning. I long to be able to ride a bicycle. I used to ride a bike to get away from harm when I was young. I believe if I could just ride a bike again I might be on a good path. I have a stationary bike in my home now. Had just started a regime when my family came. Now I will follow through on it as soon as the temp gets cooler.
  10. I am sorry, I guess I should have put this whole think on a blog, so I will do better next time. Not used to this format. Change is more difficult to manneuver which I did not expect on a stroke network.
  11. Thanks for the kind words of wisdom. I work full days three days a week and hear all sort of trials that put mine and so many to shame. I enjoy my work but I can no longer work more than three full days a week and need to recluse some of those non working days, just to cope not with my clients but the others I encounter in daily life. I actually enjoy speaking with strangers. Find interchanges with new folks invigorating. It is family who, if they just helped accomodating, my fear would dissipate, I think I could have gone on a boat they road peddling, but when they are cavalier about even my ability to walk, I know I am not safe to allow them to get me on a special boat and be safe. When they raced up to the space needle and left me behind, it shows my pace annoys them, which is why I think I lost the watch and other items last week. They challenged my stroke and immobility as if it was minor issues. I do know a motor planning stroke is problematic, as I can move well when there are no obstacles. Cannot figure out how to manneuver. I often can sing inside my head, but when I am afraid the music gets harder in my head to listen to others and walk. My hip also caused so much trouble with it clicking which throws off the gate and confused the motor planning center. Now the left leg that was broken and has a long plate and screws for many years is swelling when the heat increases. We did have very hot weather. It is no wonder I lost stuff as my body was overwhwlmed with stimuli that my brain could not figure out. Put me on a boat and watch me go, or a kayak and especially a canoe. I love the water, but need someone to help the maneuver getting in, not hold me but allow me time to negotiate the move into it. People think you want them to do it for you even when you tell them. Patience is the issue. No one is willing to wait and allow the time needed in the fast paced society. Linnie, I am not sure it is depression but I know it is anxiety when my brain cannot figure out a manneuver. I realize, that maybe they walked away to allow my brain to catch up. I think I shall decide they meant well, even though I know that they were merely bored and wanted to enjoy their trip. I offered to wait at hotel or at the place we were just at to allow them time to rush ahead for their joy, but maybe I did not do that enough. I really needed time to plan, as they came a month earlier which I think was the whole crux of the problem and why I stay home when I am not working of getting in groceries. It is easier in my head to solve the motor planning center deciphering when I am alone.
  12. Thanks for your feedback. That is the point of this society, as so many are totally enmeshed with the phone communications. People are non existant. They do not realize that this writing to others takes away the committment to the human interface. We are merely humans that get in their way of communications. I no longer enjoy this type of connection but since I cannot get it from human to human contact, I reach out in this manner. I am mainly told by some family members to get over it, whatever that is, in a nicer way than this message states, but it is really a whole way of seeing the world. I remember my own daughter saying she did not know why my mother wanted to live in her fragile state. The views some seem to have regarding people is if you are only valid if you strong and able bodied. If not you are obsolete. Religion also plays havoc with this as I hear people saying they wish they would die and enter Heaven instead of dealing with daily existance. I do well if I do not have to be around negativity and yet, here I am spreading it myself. When I leave the house today, I will take all your and others thoughts with me.
  13. Colin, I am imagining your garden and that is a grand way to calm the brain. Earth and sun are quite healing!! Think we all should take an imaginary walk through our gardens together. They used to have photos once of gardens on this website. Do they still have that if anyone knows and please give directions on how to find. I am still having trouble navigating this site change. I would love to take a walk through your garden, Colin. Wish everyone would post their garden for ua all to live vicariously.
  14. Every time I have people enter into my daily existance in a helpful or non toxic manner, I do well. Lately, people are coming with toxic intentions or negativity beyond the work to be done. This has recently started to throw me. Family members came to celebrate my birthday on thier time clock, two months after my actual birthday. They gave me a date which was a month later than the date they actually arrived. I was to be ready for a trip which I did not want to do. Just dressing is timeconsuming for my feeble mind, but under the pressure, "We will be there in a few hours, be packed and ready to go, " was my alarm and put my brain on overload. Society does that all by itself nowadays. Just having my daily life bombarded by the troubles of daily living, people daily troubles and a country which has suddenly shifted to a state of daily alarm as if we are in a war zone. I do not think the things that occurred were due to the stroke but I do not have a leg to stand on. No one understands the devestation that a stroke creates in many ways, but I am not sure anymore if it is the stroke or the state of others chaotic energy field. This past week I was bombarded by family members who knew better but they were in major crisis, They took it upon them selves to add me to the devastation of their lives, while pretending to be celebrating my existence. ( BTW, I did not feel anyone really cared about my existence. Quite the contrary.) This trip was a nightmare for four days. Duriing that time, my titanium hip started to fail more, after my family made me walk miles and carry my own suitcase. I am not to lift but I do. Under duress, it is more an assault to the body. They say when the titanium starts to fail, you feel and hear clicking and my cliicking is geting out of contorl. I tried to tell my family, but they kept leaving me to catch up. During this "celebration," I lost my watch that I have used to monitor my sleep, food intake and steps for the past three years. It is something that I rely on and it keeps me informed of my health needs. I also lost an heirloom pin from my great grandmother. Tonight I realized I lost my bank card. That was the last straw. My body is failing me and I am trying drastically to keep my head above water in a country that the emotional climate is failing, not to mention the climate, itself. We had triple digits temperature this past week. I know it is imperative for me to be positive but these problems are only the tip of the family iceberg as I cannot speak of the crisis going on within my family system except to say they are quite catastrophic I only refer to my losses of things and my mind. My neightbors cut down part of one of my 140 trees after saying they would keep the greenery. My home owners association want major monies for the fourth flight of stairs that go to the beach. A staircase, of course, I can no longer walk on and cannot afford. I try to stay quiet in my home, not borrowing trouble, but it seems to find me. My friend spoke of our upcoming eclipse causing problems for many. I do not understand astology except what she stated seems to be occurring. The eclipse happens next week on the 21st. If this is true, I worry that the only thing that will save me if things are going to get worse, is death. I am asking this question to try to get a handle on this recent downward spiral. I get ashamed of my self with all the problems in the world, but I honestly feel I live in a state of darkness, constantly trying to see the light. I feel people put an eclipse on my life. If I am not around people, I do better, but that is not a way to live, without people in your life. Finding comedians is helpful to keep my spiritis up but that stopped working when my family showed they have no empathy. I judge true character by that measurement. Just writing this helped me solve part of my problem even though I cannot do anything about it at this time, That is to invite my son who is always so positive about life, He went through six or more heart surgeries and a few caths througout his young life. He has empathy just like people on this forum. Why do you have to experience tragedy to gain empathy? Why is it not taught to young people where it counts? I think I would not have had a stroke if I had been raised by caring empathetic parents, but that is another question for another day. I do not think I am doing so well as a caring parent nowadays and that sends me to a pit of grief in itself. One of the recent questions was on rambling and I am doing just that very thing now. Sorry. that is all I can say for now on that subject. I thing the less people are empathetic, the more I tend to ramble or lose things like I did this last week. When I lost my watch I asked to go search the car and elevator, but my family got angry I was being selfish-to search a car and elevator by myself?!?! At least there is someone who gained a great watch and beautiful broach. Guess I am just lucky I have a family a few times a year. If I had them more often, I would probably not be writing this, as I would be long gone. I envy all you folks who have great, empathetic families. I taught my kids better, what did I do wrong? Do you think this is the stroke or reality of life? Nowdays, I need to run it by people who know as opposed to family who knows NOTHING!
  15. BTW, I hate canes too. There is a cane that has an ergonomic head for the hand you have it in and it palms your whole hand. That support feels very calming as you do more leaning into the calming point of your hand and not have to worry so much on your drip as it supports the whole hand. This place in the hand is also used as an acupuncture point for anxiety I found out later. When nervous, I just rub my thumb into my palm and it seems to help at times. It is one of the calming points for PTSD which most of us suffer from. Also what helps in calming is putting your fingers on your chest slowly three times and repeat twice more. This calms the thymus gland and it is close to the heart for calming the nervous system.
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