Stroke Survivor - female
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About newlease

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  • Birthday 05/28/1947

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  • Stroke Anniversary (first stroke)
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  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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!
  7. 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.
  8. Sounds like the trip ended poorly and your fear is paramount in your post. What is important is to bring you fears down especially when your feel more and more out of control. As they have no answers at this time, allow your mind to rest and gain control of the fears which I know is very challenging. Whatever brings you peace, use it until the terror subsides and realize the body can heal if we give it an avenue to work it's magic I am so frustrated, scared, and angry. This is your main problem and no one can see inside you mind, so I encourage you share these in your "ramblings." without experiencing the same. Orient to your surroundings and realize for now you are safe and ask you body to do its healing until the docs can put you on the right path. The feelings you expressed can only cause you more harm but you need to share them as they arise while letting them to discharge that emotional charge so they no longer hinder your healing. Anyone who stays in fight, flight and freeze can only cause further damage to the brain. Sharing your fears takes away that charge and folks should listen. If they do not listen, find someone who will listen, so you can calm down the stress. When you are the most fearful, orient to your space and realize, at present you are safe until the fear dissipates. I cannot imagine your reboarding a plane, knowing how terrifying a state you must have been in. Imagine yourself in the best place you were in Italy to take your mind there before things went awry. This is so hard for you to do since you did not get answers nor feel hope for your survival. Know you will heal but patience is necessary. Calm the mind which ultimately will calm the brain and neruological network. I find sleep has been helpful more and more lately with no judgments. I avoid toxic people and there seem to be more and more around lately. That energy is destructive. Be the solution to these people when you are stong enough. I will not be writing as it took me three times as long since the new site was put up, so I apologize. I will try to to check in when the site improves.
  9. I find I want to speak my mind but people are impatient. Due to the fast pace of the world, it is they who cannot focus too long. Try not to beat yourself up, mainly because when you come across these people, their busyness can be overwhelming, adding to your anxiety. None of us need this pressure. Hold you head up. take you time. I hope they are not too selfish to take time to listen, mainly for their own brain which needs to be less pressured. This might eventually cause their brain to malfunction. This pressure is not helpful to let a person, especiallly a child, to speak the mind. That is why there are so many children labelled ADHD when I am not sure they have it at all at times. After all this is a gift, speech and communication to others is a wondrous way to connect and actually helps us heal our nervous system. I admire those who have the ability to totally listen, which is a skill others are having trouble. My rambling days are better but I refuse to shortchange my ability to speak my total mind when I need it. Afterall, why not. Happy rambling. I have enjoyed mine and hope it did not put anyone off.
  10. Sounds great, this counting. I will give it a try. I now snap my fingers but arthritis makes that harder to do lately. I do try to have a song in my mind when in a troublesome area. Hope you had a great vacation. What wonderful place did you go?
  11. Such great ideas and I will take heed and hope everyone else reads all your ideas to help with motivation. After all, we are a special elite club with empathy to understand how to appreciate what we used to take for granted. Guess I got a lot of rehab done today. Just taking out a huge, heavy bag of garbage must count and the cans they make us go a block away. Then I do ride an exercise bike at least 10 minutes or more a day, unloaded and loaded a dishwasher, make meals in a large kitchen and when I go outside I live in a three story house, so just coming down for morning is work and going outside and coming back in with all these stairs thanks goodness for my son who put in really nice, sturdy oak handrails on all levels. Guess it is great to make a gratitude list just by reading all your entries to each other. Thanks for the boost!
  12. I, personally, have given up and wait to seek miracles now. Too tired to try anymore. Walking gets further and further odd, especially when I have to wear shoes. Just call me the barefoot contessa. People just look at me now when I am in shoes and step asside. I imagine they think I have leprecy. Is that a symptom of such a disorder? Or has a stroke become contagious? The one thing with age is I no longer give a ****. I no longer think the docs or specialist are really wanting to make it better if my brain is too complicated for their minds.
  13. This must be terrifying! I have no response for the cause of the fog. My problem with my stroke was paralysis, motor planning deficits and left sided neglect where I lost perspective regarding left side of body, but that part did not last long. The motor planning deficits is still a major problem and I had to learn how to walk all over again as if an infant. Even now as I get to a curb, or a stair or a certain type of van I know I can master it physically but my brain cannot figure out how to do the move so I stand there immobilized. Also I found over 15 years later, almost to the exact date as I write, that I still have the motor planning problem. Just this last year, when I sleep, my nerves overreact if I move and I awaken screaming in pain. Scary, uncontrollable, response that I do not instigate. This last change is all new after all this time, so I know that that motor planning is still trying to reconnect, despite the pain it causes. That all said, I totally understand the concern you have regarding the state of your response to your environment, but hope you can be patient with yourself and see it as a chance to learn a new state until the old state returns. You might find some of the changes can be incorporated into your old life once it is regained with the time it takes for the brain to reconnect. Your brain is still in repair with new and remarkable changes and hope for improvement. Also what came to mind is if they have you are on medications? I think sometimes the meds given to stroke victims only cause more problems. I encouraged you to keep in touch with the docs to assure the meds are not corrupting your healing. It is so hard to monitor that unless you kindly keep in touch with the docs, or even unkindly if necessary, but that is hard to do if you do not have a handle on your daily state. Find someone you trust and have them advocate for you in your healing. We all need an advocate. I totally understand your battles. Please keep hope in your heart. Some day you will be able to look back on this as a great learning experience. Challenge your care when you can. I wish I had spoke up or someone had said more in my recovery. You are right, they do not understand. Even the PTs do not understand. If you are lucky, you might find a rehab specialist who "gets it." I finally found one recently, but it was too late as the damage was done for the past 15 years. My doc should have said, falling 6 times with 8 broken bones is just not normal or to be expected with the proper care. They really know so little about the brain. The only way we can educate the docs it so tell them what is going on in the mind and hope they listen. If they do not, find an advocate who can speak for you.
  14. Strokes do not have to take away our generosity of spirit!! My wish for you is buckets of purple chips and cards to match so even those in need of them, you are able to accommodate. You deserve the kindness of gifts others give you. it helps them to be kind. You are a good example of generosity. I wish you countless hours of laughter among friends. That must have felt great.
  15. Linnie, I had no idea regarding the different Olympics. that is good information to have in case someone else creates a statement again, now we will be prepared how to respond. I believe many comments are probably made to help. Due to lack of knowledge or understanding they say the wrong thing. As it were, I did not know the differentiation and strokes are all so individualized. Sorry, new member, that put you in this position.