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Posts
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About LadyRose
- Birthday 02/23/1957
Shared Information
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Stroke Anniversary (first stroke)
07-16-2013
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Interests
Many things of which I can no longer do, one-handed....Digital scrapbooking and design (I still dabble but I'm not as efficient nor skilled as I once was), reading (only E-books now),sharing a meal and games with friends, sewing (no longer able), cooking (only with assistance now, it leaves me feeling defeated and useless now).
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How did you find us?
Google Search
Registration Information
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First Name
Rose
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State
NH
LadyRose's Achievements
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Member (3/10)
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I often dream about doing the things I once loved but can no longer do... like walking on a sandy shore and holding and playing with babies. I always have a happy feeling when I first awaken from these dreams and then reality hits me and I'm ruined for the rest of the day...I suppose it's good that my dreams are positive, to counteract my negative awake thoughts; maybe it's the brain's way of helping us survive?
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I'm sorry, Tina; I'm too depressed and angry & I've had enough with talking about the f**k**g brain accident. Do you have my email address (I can't remember if I had given it to you)? If so, feel free to use it. If not, here's a "contact me" link on my Google profile here: https://www.blogger.com/profile/00504286188405461691 Best wishes, dear.
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I've made the decision to discontinue this blog for a couple of reasons: I no longer have the energy for it. My state of mind has drastically plummeted since starting this; initially, I thought/believed that I would "recover" more of my former self and abilities and that my posts would reflect a more positive reporting of and including a steady incline in my health; however, I feel nothing but negative of late, having only seemed to decline in progress these past two years. Therefore, this will be my last post here. Thank you to all who've took an interest in my posts and especially to those who've sent out your words of encouragement and support...I will hold fast to your messages of love!
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SandyCaregiver: I agree, attitude is everything and I'll be the first to admit that mine is not good..but that's just who I am... however, itdoes seem that you to got the point I was trying to make, that is, full recovery would mean (to me) being able to return to doing everything that I once could do, but I think with brain injury, recovery often means doing things in a different way and finding pleasure or joy, where one can. Thak you for your comment!
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With regards to your ability to lift your arm and open and close your hand: Well, I'm no expert, but I would think that this is enough to allow you to practice meaningful movements and tasks, such as brushing your hair, reaching for, grasping and lifting of a drinking vessel, etc., and by doing this over-and-over ad nauseam, you can create new pathways in your brain to make the movements second nature, like a child learning new motor skills. I'd be happy to have even those limited movements, at least then I would probably be able to hug my husband and son or at least have some hope that I could do that again with hard work. I'm at the point of learning acceptance too but my husband and son both refuse to believe that there's no more that I can do and explaining myself to hem only upsets all of us to the point of exacerbation! I'm so sad about my life as it is. :-( If there were experimental surgery to repair my brain damage, I'd probably volunteer to try it... What I wouldn't give to just have a little spontaneity back in my life and to give my husband a break from all his stresses. Currently, I just feel like a waste of space and resources.
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How do you define recovery? Here is the definition by the merrium-webster web site: http://www.merriam-webster.com/dictionary/recovery When I was in the hospital just after having had the C.V.A. (stroke),I was told by the medical professionals that although it was not known if I could/would recover at all, the best chance of gaining recovery is in the first three months post stroke involving intense physical therapy due to something called neuro-plasticity, creating new pathways within the brain. After a month in acute, hospital, rehabilitation (rehab), followed by two months in a rehab, nursing home, then able to walk some with assistance (orthosis equipment and a quad cane), and both, dress myelf (mostly, I still cannot put on my socks) and use the toilet unassisted(provided the toilet was adequately accessible and equipped for my disabilities), I apparently, was considered "recovered" enough to be sent home; however, still having paralysis, poor balance, easily fatigued, and needing to require assistance with many daily basic needs and activities, I most certainly had not truly recovered (at least, not how I imagined and hoped). Here I am, nearly two years post-stroke and post-therapies (which I continued on an out-patient basis once returning home until I reached a plateau in my progress in May, 2014) and still disabled and dependent on my husband and son for so many things (I am so grateful for having the best, most caring, loving and devoted husband in the world! But what happens when he is no longer physically unable to assist me?) Anyway, the point that I am trying to make here is...I had believed that if I followed the rules and program of therapies as I had been guided, than one day, I would regain a more full recovery (no more paralysis, a return to the independent way of living life as I had before, etc.); however, I have since come to the conclusion that the purpose of the therapies, for me, were not for attaining a full recovery, but rather a training in discovering to do things in new ways, or rather, learning how to be differently-abled. Learning to do things one-handed and learning to strengthen my torso and carry my weight differently to enable me to walk and sit without falling over from the dead-weight of my paralysis...which acts like an anchor pulling me down on the left side. Bottom line...I'm fairly certain that a full recovery is not to be achieved by me, especially given my age and the new fact that the joints on my strong side, unaffected by the stroke, are now starting to wear out and pain me. I also believe that the damage to my brain was more severe than many of the others of whom I've read about on the stroke support forums http://www.strokeboard.net/. Many there have talked about different sensations felt from their paralyzed limbs than that which I have experienced feeling as well as describing higher functioning therapies than those I have been able to perform...my sense is that they retained some neurological signals from the brain which enabled them to perform repetitive tasks thereby allowing the creation of new pathways in their brains and thus recovering prior functions and abilities, where, I seem to have lost all the neurological connections eliminating the chance to reroute my neurological pathways. I cannot lift my left arm, nor move, nor wriggle my fingers, nor can I move my foot, ankle or toes in any way. The only reason that I am able to walk at all is because (1) orthotics and a quad-cane and (2) I've learned to swing my leg around and forward from my hip, I don't have control of my knee at all, I don't bend it and lift upward the way most people do when they walk.
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To my family and friends who've been following my progress here, I'm sorry for the long gap between my posts regarding my fatigue issues an reporting on my sleep study results. I had hoped to resolve sleeping problems before posting, but, that will most likely be yet another long while. The good news is, the sleep study showed that I do NOT have many of the most common sleep disorders; I do not have sleep apnea, nor other intrinsic sleep disorder; no narcolepsy or idiopathic hyposomnia. What the sleep study did show was that my sleep efficiency is poor. I apparently spend most of the night in a light sleep (no deep R.E.M.)and every few minutes I awaken for another few minutes(and I'm not even aware of it). The problem, or reason, for this inefficient sleep is unknown. I started taking a sleeping medication to see if my sleep would improve, thereby, alleviating my daytime fatigue; I felt better for only a few days - so now I'm in the process of weaning off my anti-depressant because the one I take apparently is known to sometimes suppress REM sleep (crazy, huh?). So the current status of my fatigue isn't any different from when I first started posting about it. :-( I now have a personal theory but, forgive me please, I'm too tired right now to put it to text. I'll be back another time to share my thoughts.
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Haven't blogged in a while, but still enjoy reading this site!
LadyRose commented on Tinamomof2's blog entry in Tinamomof2's Blog
So sorry to hear that your mother has passed; I agree, losing your mom is tough, no matter your age. I lost mine when I was 45 and even now,13 years later, I miss her every day and probably even more so since I had the stroke because she, herself, died from strokes. I must say, she lived with more dignity and courage in her living with her paralysis following her first stroke 18 months prior to her death than I feel I have done in the 18 months since I stroked. Tina, I also hate the one-handed typing but If you have a tablet or smart phone, then I recommend getting the app called Message Ease. I find it to be a great one-handed keyboard tool! -
Sue, you must be in the southern hemisphere..My area, in New England, USA, is buried in snow with very cold temperatures!
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WOW! 1 little thing can change SO much in a person's life.
LadyRose commented on lydiacevedo's blog entry in Conversations with myself
Wonderful story! Congrats to the whole family! -
It's truly the "little" things that make me happy these days. Clementines; so little and sweet! I love fresh fruit but hadn't been able to enjoy much of it since the CVA. Although I recovered enough to lose my lopsided smile, I continued and still do with some paralysis in my face and mouth that biting into large or hard things like sandwiches and apples, was painful (I'd end up biting my lip or tongue, or both.) Also, many other fruits require the work of two hands before reaping the benefits which meant that I was dependent upon the help of others in order to eat things like oranges when I wanted. However, I asked hubby to buy some clementines last week and discovered that I am capable of peeling them one-handed; now I can eat one whenever I want, without having to wait until someone else is available to help me! Yahoo! Although clementines are "little" things, this is a HUGE achievement for me! For those of you who've been following my story...I've had a sleep study done but won't know the results until I meet with my doctor, tomorrow. For now I continue to take naps when I feel the need. I do love sleep and on these cold wintry days, I equally love the cuddly warmth of my bed and down-filled comforter.
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Thank you, Ed!
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Great post title, Ed!!! My goodness, this seems to be quite a prevalent problem among stroke survivors.. I've blogged about it numerous times myself, most recently today: I'll be having my sleep study next week but since learning about the scar-tissue in my brain as being a possible cause, I'm remaining a little hopeful that the study will provide ideas to treat. ...all I want for Christmas... is sleep, :-) Rose
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I don't know if any of my family and/or friends read this/my blog so I'm not sure if I will continue with it or not but since it's been awhile since my last post, here's a bit of an update...Regarding the fatigue in my earlier posts, in actuality, it's not fatigue, it's all day drowsiness. Today I was awake at 6 AM and up and dressed and had breakfast (which included coffee) by 8:30 AM. By 9:30 AM, I was so drowsy-sleepy that I headed back to bed for a nap. I slept for 4 hours (10 AM to 2 PM - awakened by my alarm to take my afternoon medications). I wanted to go back to sleep (I feel the desire to sleep forever, literally) and tried for another couple of hours without success :-( It's now 5:30 PM and I'm starting to drowse again. ------- All very boring, huh? I got to tell you, I think I now understand, why Michael Jackson purportedly begged his doctor for 'propofal' to help him to sleep. I've had 'propofal' for surgical anesthesia and it does induce a good sleep; which sounds good to me right about now! I met with a sleep specialist in November and and he gave me some interesting information...I had an MRI of my brain done this past July and it shows there's scar tissue forming at the location of the stroke I had in 2013. It just so happens to be in the part of the brain that controls one's sleep/wake cycle. The doctor said that the scar tissue can cause tugging on the healthy tissue surrounding it which could be the cause of the seizure I had in August, as well as possibly causing a form of narcolepsy. I'll be having a 2-day sleep study next week for them to get a better look at what might be happening. I just want to sleep, so this is OK with me! Maybe I'll get answers and maybe I'll get a solution to correct things (fingers-crossed).