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About this blog

My Post-Stroke experiences and thoughts

Entries in this blog

 

My Last Post

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!

LadyRose

LadyRose

 

How Do You Define Recovery?

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.

LadyRose

LadyRose

 

Sleep Study Results

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.

LadyRose

LadyRose

 

Oh My Darling Clementine!

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.

LadyRose

LadyRose

 

Update on my fatigue

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).

LadyRose

LadyRose

 

Getting Control of My Fatigue?

Just adding to my post yesterday. Although I'm really tired now, after being awake for 3.5 hours, This morning was the first in a very long time that I initially awoke feeling like I had enough sleep......Maybe there's hope that the increased med. dose may help. Fingers crossed (on my unaffected side).

LadyRose

LadyRose

 

No More Seizures but still Quite Fatigued

After having someone say they were worried about me and wondered if I was OK since my last post, I figured it was well past time to post an update.   Sorry for the big gap between posts; I've had no luck using speech recognition software and I'm still battling with chronic fatigue so I avoid typing because the one-handed style frustrates me and tires me more.   Anyway, After having the seizure mentioned in my last post, I was prescribed an anti-convulsant medication; I've, thankfully, not had another seizure. I had an EEG done and was told it showed "brain activity as is typical post-stroke", whatever that means.   As for my fatigue, in an attempt to fix it, as of yesterday, my anti-depression medication dose has been increased (but that takes a couple of weeks to take affect), then in November I meet with a sleep consultant to maybe set-up a sleep study.   I hope something helps soon; I'm so very tired of being tired!

LadyRose

LadyRose

 

Bad Day for Me, Yesterday...Oh No, What's next?!

On Saturday, the 16th I had a really enjoyable day outside attending a friend's birthday party but the good day was, unfortunately, followed by a bad day yesterday (Sunday, August 17th)... I spent 4 hours at the hospital ER. I had got out of bed in the AM , hubby did not and my son was on another level of the house. After using the bathroom, I went to the kitchen to fix my breakfast as I do every morning; I began by retrieving my teacup from the table and then taking it to the counter where we keep our pitcher of filtered water (with the intent to fill the cup with water to heat in the microwave to make instant oatmeal. I never made it to the counter because I became quite dizzy, lost my balance and fell to the floor, hitting my head twice on the way down (on the counter and on the trash bin) I remember then hearing the sound of my son running up the stairs and my hubby call out my name and leaping from bed and running to me. When hubby got to me, I heard him say to our son, "she's having a siezure, call 911". I remember nothing from that point until I got to the ER.   I tell ya, looking back over my life, it seems it's solely made up of drama and trauma. What I wouldn't give for a piece of peace and comfort.   Gosh, I wonder what's next on my horizon. My neurologist is away until after Labor Day so now I wait to hear from my PCP on what I do next.

LadyRose

LadyRose

 

Cooking - A Love turned to Hate

A couple of months back I blogged about being beyond happy to have been able to cook for my family again. Sadly, that has recently changed for me. I used to love cooking for family and friends and myself, now I HATE it! I loved it when it was easy. Now, with only one functioning hand and arm, it's very difficult and completely frustrating. I tried making a Caprese salad for dinner the other night while my men-folk were outside grilling burgers and zucchini but was having so much difficulty that I abandoned the whole thing. I have a one-handed cutting board, which does help some but my knives are in serious need of sharpening;I practically pulverized the tomatoes, and although the mozzarella was pre-cut, I couldn't get it out of the plastic wrapping, I succeeded only at piercing it and making a large puddle of milky-whey. Cutting the basil was impossible with my dull knife. :-( I'm still sad about it.   My family an I have always enjoyed having dinner out but now we eat at restaurants so often that one particular place knows us by name and brings us our drinks before we order them (since we're consistent with our choices, they can do that)!   I wish there was some sort of miracle fix available to help me regain the use of my arm; I miss it so very much!   Sorry for the downer of a blog post but this is where I am right now.

LadyRose

LadyRose

 

VERTIGO! Just What l Don't Need

Every morning, since July 4th, I've had episodes of severe dizziness upon sitting from a sleeping position (like being on a fast-spinning carnival ride). Yesterday, I was diagnosed with Vertigo. Just what I don't need right now! And, of course, my fatigue is worsening too. I just want to sleep, all the time, forever.   No, I don't believe that was a statement resulting from severe depression, don't worry, I'm not thinking of ending my life. I'm just so tired of being tired and disabled...I wish I could sleep it off and awaken refreshed and renewed.

LadyRose

LadyRose

 

A Bit More Independence and Perpetual Fatigue

On May 10th, my family and I went visiting some friends for the day. We left my wheelchair in the car. I sat in a chair at my friends' home (a leather recliner) and fell in love with it. The next day was Mother's Day, here in the USA, so my husband and son brought me to Bob's Furniture store to purchase for me, the same chair that our friends own! It wasn't delivered until the following Friday but now that it's here, I am so pleased; it's the best gift ever!   I am able to compute in the chair and nap in it too ( this is a bonus since I don't have to remove my AFO and shoes as I do when going to my bed -since I need those and my arm sling to walk, I'm saved 20-30 minutes of putting them all on again wnen my nap is done).   My husband has made some furniture positioning changes in our kitchen (the table moved away from the wall to the center of the room -allowing me to use it as a sort of launching zone from all things in the kitchen...sink...fridge...cabinets...stove...microwave...counter tops) which has enabled me a great deal more independence so, this along with the new chair (which allows me to sit in real furniture from which I can get up to standing very easily) means that I no longer need my wheelchair in the house. The wheelcair has now taken up residence in the trunk of my car.   I've been fairly pleased with my progress at home but I'm a bit annoyed that I also seem to have acquired a perpetual state of fatigue. My doctors have done labwork to check my thyroid, iron, vitamin D, etc, but all are normal; yet everyday I awaken tired, as if I hadn't slept at all. I linger in bed hoping to sleep more but can't always manage it. The thing that finally prompts me to get up is either hunger or the need to urinate. I know that it's normal to feel tired after a stroke but it's been 10 months since suffering the stroke (CVA) I'd expect to be past that tired phase by now.

LadyRose

LadyRose

 

Life with Paralysis is difficult but I'm slowly making some progress

This life of paralysis is very difficult! I'm sad and being treated for depression. I had been feeling more positive last week while my mother-in-law was visiting. I love her.She encouraged and helped me to be more motivated with doing my exercises and with trying to do more tasks on my own but since she left here to return home (3 hours away, in another state), I miss her terribly and have come to realize (that living with men -hubby- and -son- and having no sisters or daughters, nor mother) how very much I am in need of female companionship. Now that my mother-in-law is gone from my home, the house and my life feel a bit empty.   However, this post won't be all negative and 'woe is me' as I do have some positive accomplishments to tell since my last post. A few weeks ago, I was finally able to put on my AFO (Ankle and Foot Orthotic)and shoe without assistance which enables me to be totally independent with dressing myself each day and also means that I no longer need to awaken my hubby for assistance should I require a middle of the night trip to the bathroom (luckily for me, that doesn't happen often-it can take 20 minutes to put on the AFO and shoes and arm sling(all required for me to walk).   Three nights last week I was able to prepare dinner(supper) for my family with minimal assistance (this made me happy beyond belief)! It was tiring standing at the stove top but was nice to hear my hubby joyfully say 'Look at you; you're cooking!' and my son say 'Mom, it's cool seeing you cooking again.'   Another accomplishment: I went grocery shopping with hubby and his mom (I used one of those motorized shopping carts. I had a blast! At one point, while motoring around, I looked up at hubby with a huge smile on my face and said, 'I'm shopping!' Hubby said it made his heart happy seeing me so happy. Are you wondering what meals I prepared? For those of you who know me personally, you can probably guess which favorites I made... Sausage soup, one night. Lasagna another night and one Weight-Watchers recipe that we all enjoy...pork chops with a spicy Dijon mustard sauce. On one other night I made a sweet-and-sour sauce to accompany a stir-fry dish my hubby made. I can't share my soup or pork chop recipes but I can give you the link to the sweet and sour sauce. It was quite good. I found it at About.com: http://chinesefood.about.com/od/sauces/r/sweetandsour.htm   That's all I have for today. Thanks for reading my blog.

LadyRose

LadyRose

 

Family's First Public Outing

Made a trip to the shopping mall with family yesterday. First non-medical related outing since the stroke, 8 months ago.   I wish I could say it was fun but I didn't really enjoy it. It made my hubby happy though, being out doing something as a family again, so for that I am glad.   We had a goal to find some Velcro closure sneakers or shoes that would fit over my AFO (Ankle Foot Orthotic). This in hopes of making it easier for me to put on my AFO and shoe without assistance, allowing me to be more independent. This is something I've been working hard on and struggling with for the past 4 days. Good news is I've had a few successful attempts; but it takes forever!   Almost crashed into a child at the mall. Hubby was pushing the wheelchair and suddenly, out of the crowd of people, a boy about 5 or 6 years old walks across our path in front of the wheelchair. He had his attention on the hand-held game system with which he was playing instead of looking where he was walking. Luckily, hubby spotted him in time to avoid a mishap.   Using the public bathroom at the Sears store was only slightly problematic,as I require hubby's assistance in the bathroom, the first thing we had to do was wait for the women's bathroom to clear out. Once that was done, Hubby brought me in while Son stood guard outside to warn any women about to enter that there was a man in the bathroom. Apparently this caused a problem of some sort because just after Son told this to someone, there was a store-wide announcement of a Code-1. That didn't affect my use of the bathroom luckily. The only 'trouble' I had was with the grab-bars being on the wrong side of the toilet for my use.Seeing this ahead of time, Hubby quite cleverly positioned my wheelchair next to the toilet on my strong-right side;I was able to use the chair's arm rest to raise myself up. Washing hands, I needed assistance to access the soap as it was a pump requiring two hands (which should be clear by now, I don't have).   We had a meal in the food court too. I had been wanting the Orange Chicken from Wok USA. I use to love this but because of my loss of tastes, it wasn't as good as I remembered it being. I don't know if I've blogged about my food issues since the CVA or not; before the CVA, I enjoyed a wide variety of foods, but since the CVA most everything I loved no longer tastes good to me. In a way I feel as if I have regressed to my childhood eating habbits. As a child, I hated just about everything (except my mother's Pot de Chinois). The one thing I do enjoy now is too expensive to have all the time... (Japanese - sashimi and a salad with the ginger salad dressing that a local Japanese restaurant makes).   All-in-all, I guess our little outing was successful. I found some velcro sneakers into which I can get my foot and AFO. However,I didn't try walking with them while in the store, which on hindsight I think I should have done. The size is so much larger than what I would wear normally so I hope that doesn't cause a problem for my strong-right side. I'll have to give it a try today. If it is a problem, then I guess the only solution would be to buy a second pair in the smaller size to fit my unaffected right foot.

LadyRose

LadyRose

 

Itchy and Twitchy, but not YET Bitchy

My body has been doing something new for the past couple of weeks. When I lay down to sleep at the end of the day, I get a series of strange itchy feelings (strange in that it feels prickly, like someone is poking me with a pin). Sometimes it's in my left foot or toes, sometimes my thigh and other times, my abdomen but always on my stroke-affected side. These itchies are then immediately followed by a twitching (or jerking) of my left leg. The best I can describe this is... you know how if you are dreaming that you are falling, you may suddenly startle yourself awake with a jerking motion? It's that sort of action but only my left leg, it pulls itself towards my upper body. This is all very annoying and makes it difficult to get to sleepno matter how tired I may be.   My physical therapist says it's called 'tone/spasticity' and it commonly follows the flaccid stage as the 1 year mark since the stroke draws nearer..   I told hubby that I'm Itchy and Twitchy so he asks, Are you also Bitchy? I'm not that yet but I reserve the right to enter that phase at any time. I think he's more bitchy than I lately. This life of recovery certainly isn't easy for us survivors but it's seems to be almost as difficult for our caregivers.

LadyRose

LadyRose

 

Itchy and Twitchy, but not YET Bitchy

My body has been doing something new for the past couple of weeks. When I lay down to sleep at the end of the day, I get a series of strange itchy feelings (strange in that it feels prickly, like someone is poking me with a pin). Sometimes it's in my left foot or toes, sometimes my thigh and other times, my abdomen but always on my stroke-affected side. These itchies are then immediately followed by a twitching (or jerking) of my left leg. The best I can describe this is... you know how if you are dreaming that you are falling, you may suddenly startle yourself awake with a jerking motion? It's that sort of action but only my left leg, it pulls itself towards my upper body. This is all very annoying and makes it difficult to get to sleepno matter how tired I may be.   My physical therapist says it's called 'tone/spasticity' and it commonly follows the flaccid stage as the 1 year mark since the stroke draws nearer..   I told hubby that I'm Itchy and Twitchy so he asks, Are you also Bitchy? I'm not that yet but I reserve the right to enter that phase at any time. I think he's more bitchy than I lately. This life of recovery certainly isn't easy for us survivors but it's seems to be almost as difficult for our caregivers.

LadyRose

LadyRose

 

WHAT DO MAILBOXES AND COMMODE BUCKETS HAVE IN COMMON?

HEALTH ISSUES   I currently have some other health issues going on and today it seems the phone won't stop ringing with phone calls from doctors (and a few telemarketers too. I don't understand why the keep trying to call us, we never answer their calls... you'd think they'd give up; stop wasting their time with dead-end numbers.)   THERAPY   Aside from the other issues, I've been busy with PT (Physical Therapy), for my standing balance and walking, and OT (Occupational Therapy), for therapy on my arm, twice a week this month (January). My 1st session with OT was rough (painful) but in the long run, worth it. My shoulder had started to freeze up and was stuck in the bent position across my torso and it hurt quite a bit for anyone to move or manipulate it in any way. Now, after only two OT sessions, using my good arm I am able to lift it to table height in order to do stretching exercises. I'm now feeling very hopeful that things will change and my arm will improve enough to use it again. My therapy currently includes Neuro Muscular Stimulation (sometimes referred to as E- stim or electronic stimulation), McConnell Taping ( a method of taping the shoulder to support it because of my subluxation) and passive exercises (meaning, I use my other arm to move my affected arm through a series of stretches). We've also ordered a GivMohr Sling which I heard about from someone on the Stroke Network forums and my OT asked around about (it looks promising on a number of levels.. I'm looking forward to trying it out).   THANK GOODNESS FOR FRIENDS!   I have to give a loud shout out of Thank you for my friends, Liz and Peter W. for all their help, patience and generosity with providing me with transportation to and from my therapy appointments. This takes a huge chunk out of their time each week; I hope one day I'll be able to thank them in a BIG way.   WHAT DO A MAILBOX AND COMMODE BUCKET HAVE IN COMMON?   And now a topic not related to my stroke or my health in any way. It turns out that this is the season of the mailbox. We keep losing it! During our fist snowstorm of the season, we awoke to find our mailbox atop the snowbank at the edge of our front lawn. Apparently the City's snowplow knocked it off it's post. It took 2 phone calls and 2 weeks but eventually, the City DPW finally came and reattached it to it's post.... Just in time for our next big storm... this time the plow knocked the door off the mailbox itself. The City informed me that they'd provide us with a new mailbox (this was the first week in January)... fast forward a few more weeks, our weather got unusually mild for a bit, enough to melt a lot of the snow on the ground and to reveal qite a lot of old, and now damaged, mail that must have been buried in the snowbanks during the first storm (we found a couple of past due bills, a refund check and holiday greeting cards - the photos were ruined). Then, guess what happened... another snow storm and another knocked down mailbox! The City came yesterday and installed our new mailbox stating that they'd be back in the spring with a new post. Which I'm sure we'll need by then. Now guess what ... we're suppose to get another storm this weekend. I wonder if our shiny new box will survive.   Both times we lost our mailbox, we hung a commode bucket from the post to provide a container for receiving our mail. If there are any health care professionals in our neighborhood that may have recognized the bucket for what it truly was, they must have had a good chuckle.

LadyRose

LadyRose

 

Accessible Bathrooms - These Are Not One Size Fits All

Since the beginning of my recovery, toileting(using a bathroom/restroom) was the first and biggest hurdle, and continues to be (not sure for how long, maybe until I get full recovery in my leg?). Initially, while in ICU, I was lifted from my bed using a mechanical lift (as mentioned in my first post) to a bedside commode. After that, before I was doing any walking, the commode would again be at bedside and with the help of the nursing staff , I'd be helped to standing and then told to pivot, basically rotating on my heals, to sitting on the commode. This wasn't done very often out of concern that my foot would tun on it's side thereby resulting in my ankle taking all my weight, which could result in many other problems such as a breaks or tears. I think that this is the reason for which I was fitted for an AFO (to protect and stabilize my foot and ankle) Eventually, I was given a wheelchair and taught how to get from both the bed to the wheelchair and from the wheelchair to the toilet by using what's called a slide board. One end of this board, (often made of a highly polished, finished plank of wood) is tucked under the thigh of the strong, unaffected leg and the other end is placed onto the toilet seat. The transfer to the toilet is then accomplished by sliding one's bottom along the board using the strong, unaffected arm to push the body to the other end and onto the toilet. Once there, all that is needed is to stand, lower the garments, then sit again. However, until I regained control of my sitting balance, I required some sort of support to hold onto (such as a bar on the wall or arms on the toilet - I had and have a commode, with arms, over the toilet) to keep from falling off the toilet these all introduce different considerations when using different bathrooms. Because the slide board can only be used on the strong, unaffected side, the placement of the toilet in the room is significant. For those with a strong right side (like me), the toilet needs to be on the left in order to approach it from the right, obviously,the opposite is true for left side strong. It also means that there cannot be any obstructions in the space to and from the toilet (the arms of the wheelchair and commode must be able to lift or lower out of the way for the transfer). Once I started using the KFO to walk,transferring to the toilet was so much easier, I could walk short distances to the toilet from the wheelchair, turn myself around then do what's normally needed to sit. The only considerations then (and continue to be today) were (1) the height of the toilet from the floor and (2) are there any grab bars and where are they positioned? The grab bars are necessary to push myself to standing as my legs are not yet strong enough to make that push on there own. This combined with being a tall woman are the reasons that toilet height are important. Toilet and grab bar placement in the room remains an important issue as long as I have the use of only one arm. at home, I have a commode with arms placed over the toilet (it gives me the proper height and the arms allow me to get up at my own doing). So I guess because there are a number of ways that a person with disabilities can make use of a bathroom, it's easy to understand how an 'accessible' bathroom may not be able to accommodate the needs of all; however, it still came as a surprise to me the first time that I made use of a 'public' restroom labeled as wheelchair accessible. The first time was during a trip to a hospital and an adjacent medical building (offices of doctors and other providers of medical services - I was there for an adjustment to my leg brace -KFO.) . I encountered a variety of 'problems'. Because I am one-handed I must maneuver the wheelchair with one hand and one foot but because I also need my quad cane to move from my wheelchair to the toilet, it's necessary for me to carry my cane with my good arm (while resting it on my foot) and then have another person push my wheelchair around, so, being that my husband is typically my 'other person', the first problem to solve is how to gracefully (politely?) bring a male into the Women's bathroom with me. Some places have Unisex bathrooms and these, of course, are preferred, but the first place at which we were did not. My husband 'solved this problem' by opening the door to the Women's room and loudly announced 'Housekeeping' to determine if anyone was there (luckily, there wasn't). So, in we went. The other problem here was the placement of both the soup dispensers and paper towels. All were out of my reach from the wheelchair! This was especially surprising to me because I am a tall women with a very long reach. (Heck, I haven't been in the situation of not being able to reach since I was a child). Other problems encountered: - a couple of the bathrooms had the grab bar attached too high on the wall from the toilet, I couldn't get proper leverage to push myself to standing. I hate to be redundant but, being a tall woman, I can't help but wonder how people, shorter than I, manage to get up again, I'd still be stuck there if my husband hadn't helped (lucky for both of us, he's very strong)
The door into the bathroom was so heavy on one bathroom we used and the spring on which it swung such a quick release that my husband had a difficult time holding it open while pushing the chair in at the same time (how do people alone manage that one?)
One stall had barely enough room to fit the wheelchair in and allow proper closing of the stall door afterward.
BTW - we've been in other facilities since and the problem of bringing a male into the Women's bathroom was solved with the help of building staff (first, checking to see if anyone is currently using the bathroom and then to stand watch outside the room to alert women entering that there's a male in the room. Some places are very accommodating.

LadyRose

LadyRose

 

Walking

I've got to tell you,learning to walk again has not been as instinctual as it was the first time (at age? 12 months?)At the age of 56 for adults without brain injury,it's second nature, right? Not something that you think about, you just do it. Not the case when your muscles have gone to sleep, though, which is what it's been like for me. Limp muscles do not hold up the rest of the body! Physical Therapy (PT) not only helped to get my muscles working again, it also helped with my brain's need to form new pathways to properly move those muscles enabling me to walk. One therapist told me that walking is actually a continued act of stopping ourselves from falling. If you look at a child learning to walk, not only does he fall a lot in the process, he uses his arms (holding them out or up and constantly moving) to balance. So considering that I essentially have no arms to help me to balance(my right and unaffected arm is busy using my quad cane to support me and my left, affected arm I keep in a sling against my body while standing or walking so it doesn't just dangle) and stop myself from falling, I'd say that I'm doing really well at learning to walk for the second time in my life! For the past 4 days, I've had pain in my left, affected foot so I had it checked out by a physician last night, since I had to go out anyway for lab work. Nothing wrong with the bones so I'm using moist heat to see if that will alleviate the pain. Not so convenient when one can't walk (to the bathroom or anywhere) without orthotic equipment and that equipment must be removed to apply heat.     Short post today, just to get something written but I'm hoping to get future posts about Bathrooms,Clothing, Wheelchairs and Feeling Vulnerable.

LadyRose

LadyRose

 

'Mirror' Blog for My Family and Friends

Since ome is unable to leave a comment on this bog unless they are a mrmber of this site and cannot become a member unless one is either a survivor of a stroke or the caregiver to a stroke survivor, I've started a sort of copy of this blog using Google Blogger, to enable my friends and family a way to leave comments if they wish to. you can find the other blog here: http://mylifeafteras...e.blogspot.com/   I have nothing else to report today, sorry. Merry Christmas to all who celebrate it!

LadyRose

LadyRose

 

my first post - a bit of history

My reasons for starting this blog are three-fold, 1 - to keep a record of events, experiences and my thoughts since experiencing a CVA (Cerebral Vascular Accident; or cerebrovascular accident - I prefer this term to that of 'stroke') and 2- to provide an easily accessible resource for my friends and family to learn about and keep abreast of my post-CVA situation as well as the progress I am making in my recovery. 3- in hopes that by telling my story it may help another through their own stroke recovery.   Since this blog is started 5 months post-CVA, this first post is mostly to provide a bit of history (time-line from onset to when I returned home and to rhe current day), as best as I can remember.   COURSE OF EVENTS: Tuesday night, July 16, 2013, After having a late dinner with husband and son, I was at my computer working on finishing up one of my digital scrapbooking designs that I had planned on completing for a project due the end of that month. I remember feeling that I couldn't find a comfortable position in my chair and that I was frequently shifting my bottom in the chair attempting to get more comfortable, then I had a tickle in my throat, which I tried to clear and then promptly started coughing, the sort of cough one gets when liquid is swallowed but doesn't go down correctly (sometimes referred to as 'going down the wrong pipe'). Luckily, both my husband and son were in the same room as I. My son asked me if I was OK and I said that I had a tickle in my throat was all. He then asked if I was sure I was OK because it seemed to him as if I was disoriented. At that moment, my husband promptly got up from his seat and came to my side, took one look at me and told my son that I was having a stroke and to call 911. I remember talking briefly with the 911 operator who asked me to speak the words 'The early bird catches the worm.' I guess I didn't annunciate well. the next thing I knew, there was an ambulance at my house and the paramedics were in the house with a gurney to take me to the ambulance. I don't remember the paramedics transferring me from my chair to the gurney nor the trip to the ambulance nor the trip to the hospital except this one thing: I was in a sitting position on the gurney and I remember looking down at my abdomen area and seeing an arm across me that I didn't recognize as my own so I asked who's arm it was and was told it was mine. That was a very weird experience. I've no idea how long I was in the ER at the hospital and I only remember 2 things happening there (1) vomiting into my oxygen mask and having my mouth suctioned afterward. (2) I remember a male voice (the doctor?) saying they were going to have to cut my shirt off to remove it and me asking, 'Can't you just take it off over my head, the normal way?' they said, 'No, it's too late for that.     I was told that I was given a clot buster,drug called TPA which is what saved my life. I must have been unconscious for awhile later because I've been told that I had a CT scan of my brain done, but I've no recollection of that at all. I was also told that I spent a week in ICU but my memories there are spotty at best. I remember a couple of the nurses that cared for me and a discussion about hospital gowns (I asked why they were called Johnnies, but no one knew the answer); I also remember the excruciating headaches ( they gave me morphine for those - maybe this is the reason I remember so little else); being very pleased when they allowed me to brush my teeth the first time; having a urinary catheter placed and begging them to remove it every minute afterward (they must of got tired of listening to me - they took it out the next day); going for a ride in the hoyer-lift (a large sling that hangs from the ceiling to mechanically lift and carry a person from bed to other equipment) to use the bedside commode.     The CVA caused a complete paralysis of the left side of my body (medical term for what I am now: left-sided hemiplegic). I could not walk nor use my left arm or hand in any way (not even to lift them) I couldn't even sit upright without assistance nor remain seated without falling over (imagine an adult-sized 4-month-old infant who has not yet developed the skill of sitting without being propped); I smiled with only the right side of my mouth and I drooled just like a teething infant. After the week in ICU I was transferred to the acute rehab unit and was there through the end of August. I received Speech Therapy (mostly to keep watch on my swallowing ability, being sure I could eat without choking, etc. and to help with my mental processing and exercises to strengthen the facial muscles), Physical Therapy (PT) and Occupational therapy(OT) each for 2 hour-long sessions daily, there was an occasional Recreational therapy thrown in too. I didn't want to leave the acute rehab but was more or less forced to do so by my health insurance provider as I had apparently acquired enough skills to take me out of the 'acute need' status - I could sit without falling over, I could stand and do supervised walking with the help of an AFO(ankle and foot orthotic) and quad cane, I was no longer drooling and my smile was balanced again. I could do some dressing of myself with minimal assistance. So, because I was not ready to go home at that point; home wasn't ready for me; I was considered 'sub-acute' so they wanted me transferred from the more expensive Acute rehab to a less expensive 'sub-acute rehab.   Husband and son, went looking at the local sub-acute facilities (skilled nursing homes with rehabilitation services) and located one for me. I transferred there at the end of August (1.5 months after my CVA) and remained there until going home at the end of October. While at this new facility, I had the same therapies that I had at the acute facility (Speech, OT and PT) these were each 1 hour daily. A lot was accomplished in the 1-hour time slot, at least for the PT.. They were trying to get my knee and quad muscles to come back to allow me to walk on my own with only the AFO and cane, mentioned earlier (but it seemed that no matter what they tried nor how hard I worked, my knee just wasn't strong enough, it kept buckling; so after awhile, not sure how long,they had me try walking with a KFO (knee and foot orthotic - the knee area locks in the straight position to kepp the knee from buckling but then must be unlocked before sitting) and a quad cane. With a lot of practice, I finally got the hang of walking with it; it required that I lift my hip in a somewhat unnatural way in order to advance my foot forward to walk. But I did it and I was walking! Two weeks before leaving the sub-acute facility, I received my own custom fitted KFO. Initially, My KFO had the knee unlocking mechanism placed at the top inside -thigh area- but it and the metal locking mechanism at the knee protruded so much it caused bruising to my other leg just from walking with it. It was most uncomfortable. About a week or two after returning home, I made a trip to the prosthesis and orthotic company that fabricated my KFO so they could make adjustments (the knee lock area was reshaped so that it was closer to my left, braced leg and protruding less. They also removed the unlocking mechanism from the inner thigh area and installed what they call a baler (a sort of hoop-shaped bar) at the back of the knee. The baler is lifted to unlock the knee before sitting. Because the baler protrudes from the back of the knee and I need to reach it with my right hand to unlock, they also attached a short strap to it that sort of is pinned to the top of the inner thigh area for easy reach and to ensure that I won't lose my balance and topple over when I intend to sit. As you may imagine, this limited my choice of clothing as I couldn't wear pants that covered the release strap. Luckily I kept my leggings (stretch pants) from the 1980's an also luckily, they fit me again. I wear the leggings under the brace (KFO). Unfortunately, the leggings aren't exactly warm enough for this freezing New England weather; however, I now have some GOOD NEWS to share (See GOOD NEWS (PROGRESS) Section below:   GOING HOME: Going home was a mix of emotions for me. I was so very homesick after 4 months away and glad to be going home of course but I was scared too; I had developed a routine with which I was comfortable at the nursing home and the staff knew how to help me with my activities of daily living (ADL)... going home meant learning new ways in an environment that was not adapted for handicapped living and learning new ways to do things and teaching Hubby how to help me. The first night was the toughest and Hubby had a lot of running around to do. Because the bathroom toilet is so low and there aren't any bars mounted on the wall next to it, I couldn't get up off the toilet on my own, hubby had to give me a hand every time. He soon went shopping for a commode that would fit aver the toilet. This has worked well, it heightens the seat and has arms from which I can push myself to standing,   It's a good thing I had that KFO when I went home because my wheelchair was too wide to fit down my hall to the bathroom and bedroom.   To this day, I am still without any function in my left arm and hand. I wear a sling when standing and walking (like the kind you may see someone with a broken arm wear) . Initially this was given to me, to be a visual queue to the nursing aids to alert them to not grab my arm when assisting me but, another reason may have been (and I'm not sure of this) to have my arm supported while walking instead of just dangling at my side. While I was at the sub-acute facility, it was discovered that my left shoulder is subluxed (the muscles and ligaments that hold the shoulder in it's socket become stretched out causing a partial dislocation of the shoulder.). This, at times is very painful. At a recent visit to an orthopedic, I learned that there's nothing to be done to fix the subluxation (aside from continued therapy and the hope of my brain creating new signals to my arm) but I can, and supposedly will, be fitted for a shoulder support which will hopefully make me more comfortable.   GOOD NEWS (PROGRESS): MY knee control and quad muscles are starting to return and I've been walking with just my AFO and the quad cane for 1 week now! It's the first time I've felt 'HAPPY' since the onset of my CVA! Not only can I now wear clothing that's more appropriate for the weather, but this also gives me hope that I may truly be able to walk again some day without the use of orthotic equipment. Hubby is hoping it will be in time for our 25th wedding anniversary, next year, so we can celebrate BIG and with a romantic slow dance.   Speaking of Hubby, I need to sing big praises for him with all the work he does and great support he's been for me. I married one great man! He's been by my side every day since. Works all day, commutes an hour to get home (sometimes more) takes care of dinner (and clean up after), and the laundry (basically, everything I use to do) and in addition to those, helps me to undress and get into and out of the shower each night,also into bed with all my night time gear (arm and hand splint - to keep my fingers from curling and contracting and another foot orthotic to prevent foot-drop) and a bunch of pillows to support my position or to prevent joint and back pain while I sleep. My shower from start to finish (including gathering clothes and towels)is about 45 minutes, getting settled in bed can take a half hour. Poor guy, he's quite exhausted and starting to feel the affects of the extra physical exertion needed to care for me. His previously injured joints are beginning to complain quite loudly.       TODAY   My home therapies have been discontinued as of last week now I'm left with having to: - get my doctor to write a prescription to obtain therapies on an outpatient basis - find a rehab facility that has adequate services for CVA survivors and that has weekend and/or night services - find transportation to the rehab facility   Edited to add: HYPER-SENSATIVITY I'm not sure how I managed to leave this out of my post so I came back to add it. I've had a problem with the entire left side of my body being painfully hyper-sensative to touch ofany kindsince the beginning but of late it seems worse on my torso and left arm and hand and toes and fingers. I see my neurologist in January so I'll be dure to talk with him about it.

LadyRose

LadyRose

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