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  • A  blog is a personal journal of your daily life as a stroke survivor or stroke caregiver.  Surprisingly, countless members have called it therapeautic to write down their thoughts and to vent their frustrations.  You can make it private, just for your eyes or public and share your personal thoughts with your friends.  Why not try it, create your blog and start writing and see if it helps you.  

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  1. I took pictures,made albums, used cam corder for events, but I wonder what life would be like if I posted life to the public. And who watches strangers, or even friends when they record stuff. I watched a you tube with adorable kid. ok sweet fummy, but then there were other videos, going on for years, about the kid,the family, and suddenly half an hour later, I had watched,birth, vacations, and this child growing over the years,and I felt like it was some movie,and hey I cant wait for the next one, and whatade looking through this key hole so entertaining. And it felt weird that this child took selfies and talked to camera. 

     

    I interacted with my kids, sang,drove,without being on camera all the time.

    I worried about perverts.

    They were in plays, public dance shows,so that was public, but not people seeing us in pajamas cooking breakfast.This is weird world to me.

    Live streaming, blog influencers, what???

    It is gossip tv gone wild. Do I care, do I have time? What does it do to us,to children,

     

    this is a strange world I will be leaving.

     

     

  2. tmciriani
    Latest Entry

    I did something I wish I had not yesterday. It started with a Dr. appointment to an ENT due to chronic hoarseness, ear, and throat pain I have been having since January. Seems my asthma inhaler (has a steroid in it) has caused a yeast infection(thrush) on my vocal cords and folds and will probably only need a script for Diflucan. Then I got in my car and drove to where I used to live last year. I got out of the car...knocked on the door...and Adrian answered and invited me in. For those of you that don't know Adrian was the man I had lived with and loved for 10 years until May 18, 2017. Adrian began seeing a girl 30 years his junior, I freaked and had moved out that same week, the next day she moved in, and I have been recovering and mourning since. Today I know in my heart that it is over for the best. But I Drove there. We chatted for about 15 minutes and I said goodbye and left. I have been in a state of confusion since. Emotions washing over me. I don't know why I went. I feel like I have walked backwards a bit. This life is about me...that is where I have wanted it since I left. My insides are nauseous. I am disappointed in myself. I am worthy of someone truly loving me. I deserve no less.  I can make it by myself. I should love me first. I know these realities are true even if I am telling myself again.

     

    I also noticed somethings today not connected wit the words above. I am dizzy...all the time...I have learned very well how to mask this even to myself. I go into a store and I am working non stop to go through the motions and never acknowledging that I am dizzy. It exhausts me...it changes me for the rest of my day. I can honestly feel not dizzy when I am sitting in a quiet familiar place or lying down. I can't look up, around, far away, down, at moving people...things, lights flickering or moving, walk up or down any stairs alternating feet or without holding a handrail, be or walk in open spaces or large spaces and many many more without vertigo/dizziness, sometimes nausea, many times wit an altered since of stability, feeling my brain slow, lull, get heavier as well as my eyes. It's so constant that I have learned over time how to cope and get through it. It's not the same plane I used to be on. It's alternate, changed, hard work... Depressing. I can't change it. I can't avoid it. I can't escape it. I have learned to be in it. For my sanity as well as for others. I felt it today. It's the loneliest feeling...like I'm separated from my world by glass. I can see and sense all past the glass but no one else can see in. Alone is scary. Do any of you ever feel this disconnect or something similar?

  3. achandra
    Latest Entry

    Right now I am going through severe pain in my good leg & I feel guilty for putting my lovely family through trouble because of me. I was thinking how will I ever compensate my family for putting them through my health melodrama. I was praying to God that maybe I should get lottery & if I win that way at least I won't be burden on them. My "rich"(content) husband reminded me he has enough & all he wants is my health nothing  more. I was telling him money is not for him, money is there for me  to make me feel better about my existence lol.  I just pray OTC pain meds works & I m pain free.

     

    Asha

     

     

  4. I would like to a share story happened to me Thursday in my group meeting.

     

    There were only a few people there but there was one woman in particular that caught my attention. She had suffered multiple TBI’s and I can’t remember if she had an aneurysm but I know that she was very upset and in pain. Her multiple TBI’s have basically left her walking as a cripple, let me explain, who has multiple sclerosis. On top of which, she broke her right ankle a few months ago and it still has not heal correctly. She came as a guest for she lives about an hour away but I’m glad she came. She started to explain her story and also shared that she wanted to commit suicide earlier that day. I immediately focus most of my attention on her and started to ask her questions for she was complaining about her disabilities. As we got started talking, she explained that she has had a wonderful life, living in Europe dating a celebrity over there as well as getting her degree in arts. She enjoyed painting. She was a very talented painter and that allowed her to escape from any issue she may be going through. Unfortunately, her painting days are very few for she has severe tremors in her right hand, and a difficult time holding in her left hand though she joked to say her nephew said she should paint with her mouth. I personally found this idea amazing and something that she should try but it’s not up to me.

     

    As we started talking, I noticed that she was more so lonely than she was anything else even though she had a partner who lived with her and he was more set in his ways and he was “boring”. I started talking to her about grief. How we all grief in our own way and in our own time and this may be why she is so agitated with her partner. She agrees first she’s angry she expressed her anger on more than one occasion. I explained to her I go to a meditation class once a week that’s free, only through donation, and is not too far for her to go. I invited her to come with me, not knowing if she would show up, but to my surprise that evening she did show up. She’s a very spiritual person, as I am, and I introduced her to a gentleman that I had just met they are who teaches the form of Qigong (; literally: "Life Energy Cultivation”: is a holistic system of coordinated body posture and movement, breathing, and meditation used in the belief that it promotes health, spirituality, and martial arts training. Chinese)

    To my surprise, she had heard of this and she was very excited to try this practice. What was great about it is that it’s a free class where the gentleman is wanting to give back and only ask for donations towards the studio which he practiced. My new friend will be there Thursday for the two classes unfortunately I will not be there but I told her I would meet her there the following week. We exchanged phone numbers and we only share a text every day to make sure the other one is doing okay.

     

    They say that it’s a gift to me people that you feel like you have known your entire life well my new friends is definitely one of them.

  5. Do we REALLY know each other?

     

    I challenge other Stroke Network bloggers to make a list on their blog of 100 things we do not know about you!

     

    1. I had a rare type of Brain Stem stroke on the Pons. It caused quadriplegia and loss of speech. My stroke happened in France while I was on a business trip. This occurred over 20 years ago in 1994.

    2. I founded the very first on-line stroke support group on the Internet in 1996. This group became known as The Stroke Network in 2001.

    3. When I was little I used to collect bottles for refunds so I could buy a Slurpy.

    4. I had a paper route when I was a kid.

    5. I was an Alter Boy when I was in 4th grade.

    6. I am good at math.

    7. I have a good sense of humor.

    8. I do not like controlling women.

    9. Bossy women turn me off.

    10. When I was little, I was sitting at dinner with my whole family one night when I decided to tease my little sister. I put a single pea in her glass of milk when she wasn't looking. When she finished drinking her milk she found the pea and started crying.

    11. I used to throw rocks, when I was a kid, at cars and then run. I never got caught.

    12. I am a good swimmer, good water and snow skier and good at most sports.

    13. I have always been athletic.

    14. I never did hard drugs.

    15. I smoked pot in high school.

    16. I was never a bully nor was I ever picked on.

    17. I had hair over my shoulders in high school.

    18. I joined the Army at 18.

    19. I love organization, structure and discipline.

    20. I never had KP the whole time I was in the Army.

    21. I started dating my wife at 16.

    22. We got married when I was still 19, she was 20.

    23. I have never been overweight by more than 10 lbs.

    24. I have 4 grandchildren.

    25. Everyone in my immediate family has green in their eyes.

    26. I have an AA degree in Engineering Technology and a BS degree in Management.

    27. I have the GI Bill. The government discontinued this benefit 2 weeks after I joined the service.

    28. I was a draftsman for the first several years after discharge from the service.

    29. After my draftsman job, I worked in a lab.

    30. I love watching football.

    31. I only watch baseball if my team is winning.

    32. I have 3 brothers and 2 sisters. I am in the middle.

    33. I am a workaholic.

    34. I wished I lived in Key West.

    35. My second choice is Hawaii.

    36. I love the beach and the ocean.

    37. I love thunderstorms.

    38. I prefer to work with women.

    39. I hate gossip.

    40. I am a loyal friend.

    41. I do not lie.

    42. I live a very moral and boring life. I am proud of this!

    43. My ancestor was Myles Standish from the Mayflower. It is documented and I have a flow chart of my lineage on my personal web site.

    44. I have had Type II diabetes since 2008.

    45. I have an ancestor who fought in the American Revolution and one who fought in the Civil War.

    46. My personal website is at http://www.stevemallory.org/

    47. I love to watch movies about war.

    48. I know a lot about WWII.

    49. I hate chick flix.

    50. I used to read every Tom Clancy and John Grisham book.

    51. I have traveled to several countries. The USA is the best place in the world.

    52. I have been to Monte Carlo.

    53. I have been to topless beaches on the French Riviera.

    54. I have had Central Pain Syndrome (CPS) since 1998.

    55. I used to beat up my little brother.

    56. I taught my daughters bathroom noises. They still make them. My wife is really mad about that.

    57. I used to take my daughters out to dinner every Friday night.

    58. I have bugged out early from work to play golf.

    59. I have been to Korea several times.

    60. I give everyone nicknames.

    61. I used to flirt a lot.

    62. I love southern accents and southern manners on women.

    63. I am a butt man.

    64. I wear fitted boxers.

    65. I do not smoke.

    66. I do not drink except socially.

    67. I like to work hard but like to play harder.

    68. My favorite seafood is a crab cake. I also like steamed shrimp.

    69. I do not like most vegetables.

    70. My favorite cake is Red Velvet.

    71. I like a good cheese steak sub.

    72. I really really do not like lima beans.

    73. I can make hot dogs and French toast. This is about the extent of my cooking knowledge.

    74. My daughters and me used to kick my wife out of bed on Saturday mornings to make us pancakes.

    75. I hate spiders.

    76. My favorite movie is Band of Brothers. I have watched all 10 series about 25x.

    77. My cat sticks his tail straight up and vibrates it when he wants somebody to scratch his head. The whole time he is doing this he prances around your feet.

    78. I like rock and roll played really loud.

    79. I like to listen to Christian Rock.

    80. I have television on my computer.

    81. I like to tease everyone, especially women!

    82. I can play the piano by ear.

    83. I cannot sing, now nor ever.

    84. I don't like green eggs and ham.

    85. I have never spanked my kids.

    86. I have never cheated on my wife.

    87. I have a happy marriage. I have been married to my high school sweetheart since 1977.

    88. I have two cats. One of them snores.

    89. My hair started turning gray when I was only 18. It is completely gray now.

    90. I still have most of my hair.

    91. Both of my daughters never had a cavity.

    92. Both of my daughters were walking before 1 year old.

    93. My daughter graduated from college with a grade point average of 3.5.

    94. My wife can do almost ANYTHING!

    95. I hate the local news.

    96. I detest bad cop shows.

    97. I am a Republican. I used to be a democrat, though.

    98. I do not agree with most Democratic views. As I get older, I have become more conservative.

    99. I think Letterman is an idiot and a total jerk.

    100. I voted for Bush twice.

  6. I had my operation to remove my lymph nodes on the left side of my trunk seven weeks ago, now I am finally healing. With my usual routine unavailable I was glad I found a few new things to do.  I also had a lot of visitors, some of whom had never been to my house before. I  am not a very tidy person and was a bit worried that some of my friends might judge  me on that. I soon realised that most of the people I call my friends love me just the way I am, a very comforting thought.

     

    One of the ways I kept busy was a form of pruning where I just cut what I could reach without bending or stretching, I figure I can go back later and cut back the rest. A friend came on Saturdays and watered the garden for me. I wanted to tidy up inside so found one way was just sweeping everything off cupboards and then putting back only what I needed to, leaving more space. It wasn't really productive time but nor was it wasted. And it has certainly made me appreciate the flexibility I think of as"normal".

     

    I had community nurses come to dress my wounds so enjoyed a few minutes chat with them and with the women who came to do some domestic chores. Going through this period has made me more aware that it is okay to accept help when I need it. I am in a community that considers anyone over 70 "elderly" so help is available for a price. And accepting that reduces the strain on my daughter and the worry the boys feel because they cannot be here to help.

     

    Since my diagnosis with melanoma in August last year I have talked to a lot of people about my case and melanoma in general. Like the support we find here among those experiencing strokes those who have experienced melanoma love to share their experiences. Everyone has a story, some are happy with a good outcome, some are sad. Many people are interested in my experience because our beautiful sunny climate makes melanoma a common occurrence. Some of them understand the implications others still have the head-in-sand approach. Some of the nurses took photos to show a partner the consequences of not going to the Skin Clinic. I am useful as a bad example!

     

    I picked up two of the ladies I take to church this morning, I am slowly getting back into routine. One is coming up to her 101st birthday in May, I love her way of enjoying life. She is still living in her own home and manages most of the tasks of everyday living. The other lady is in her nineties and legally blind but manages with some help. They are from a tough generation having come through the Depression and second World War. My third lady is on hospital unfortunately.

     

    The school holidays are in another week and I will have Trevor and Alice here for six days. I am so looking forward to the visit but aware I will have to have to pace myself as I will not be back to my fully energetic self and five year olds are a little demanding. Hopefully the weather will still be mild enough to enjoy being outside a lot of the time. There will be opportunities to get together with the other cousins too.

     

    So plenty look forward to in the weeks ahead. I just have to stay well enough to enjoy it.

     

  7. Strokewife
    Latest Entry

    A young woman is lying unresponsive upon a frozen platelet of ice that is drifting rapidly toward a waterfall.  As the river current rushes a bit faster with each and every second a man fleetingly skips across broken ice pieces to rescue this damsel in distress. With his heroic effort he saves the maiden just in the knick of time as ice sheets plummet over the cascading water. Of course, this man and woman then go on to live happily ever after…

     

    Some how, Way Down East, with out sound instilled a sense of urgency, fear, as well as, security and comfort to the onlooker simply with creative imagery. The cinematography captures movement, emphasizes emotion, and creates reaction with use of a simple visual effect. Perhaps, back in the day, one could hear the audience loudly gasp while viewing this 1920 American silent film directed by D. W. Griffith and starring Lillian Gish.  Regardless of reaction, a movie with out sound is most likely unheard of in this day and age. Now, digital enhancement with surround sound accompanies every movie. Or so it seems. Go butter up the popcorn folks because it is show time.

    Sensory over stimulation or 'Flooding' occurs after brain injury because the brain's 'filters' no longer work properly. It is an exhausting situation if more  pieces of information or stimuli are received than what the brain can handle.  Things like large crowds of people, bright lights, or alarm sounds can cause discomfort. Certainly, the stroke patient has enough to overcome with out throwing this piece of driftwood into the river yet it does seem to go with the flow doesn’t it? Twizzlers anyone?

    A new turn of events has transpired with my stroke survivor.  Over the past few months he has been watching movies or television shows with no sound.  It doesn’t happen everyday. Yet, the first time I noticed this silent movie routine I was busy going about my day tending to things I needed to tend to.   Among my haste I could hear my husband belly laughing, speaking out loud and/or then crying along with this entertainment box.  At first, I didn’t rush to his side because it seemed he was simply reacting to whatever he was watching. As he sat in his recliner with remote in hand it became apparent to me that he seemed to be having difficulty with the remote or so I thought. His response to my dart throwing of questions was of a silent and confused nature.  I picked up the remote, pushed buttons to confirm it worked, handed it back to him and commented that everything seemed to be working accordingly.  Perhaps my movement was too quick and much like that of the ice platelets jetting over the falls because he turned the TV off.  After a while, I realized he all along was just watching TV with out the sound.  Usually, during commercials.  Upon my perplexing discovery that there was nothing wrong with the wall mounted wide screen audio device I questioned his action. Looking at me with wide eyes like that of Ms. Gish he said he wanted it that way. I, with much the same dramatic reaction asked, “Why?”  Simply, he softly said, “They say what I want them to say.”  Can someone pass me the Junior Mints? 
     
    Some weeks have past and I still have raised eyebrows.  As a caregiver I want to assist my stroke survivor the best that I can.  Cognitively, he has had difficulty in this past year.  More so after he was hospitalized back in December with what doctors concluded was a virus. That is a whole other story. He has definitely done the two steps forward and three steps back last year.  As we all know, each stroke survivor heals differently and at their own pace.  I will also go as far as to say each caregiver responds in a way that is uniquely theirs.  Maybe my stroke survivor is drifting with a current down a thawing river and I am jumping here or there on the frozen barges to come to his rescue.  It seems we are always living like that silent movie.  When is the intermission, I need some refreshment?
     
    So, as a highlighted awareness of sensory flooding, also known as sensory overload, motions its way into our theater my stroke survivor and I go on to live happily ever after without all the bells and whistles.   Tonight’s double feature is repetitive viewing.  Did I mention that along with the onset of silent movie watching my husband also watches the same movie over and over?   Hand me the popcorn bucket, I’m going for a refill.

     

    As the screen goes to a darkened and blank screen two simple words softly phase in…they state…The End!
     

  8. I've recently gotten into bullet journaling - which has went into an art form, and I'm loving it.   I started trying to bullet journal around the middle of Feb, and use a 2 pg daily spread, with everything on it. One of the many things I want to try to get back into is my stroke hubby's therapy, that we are not doing anything, on a regular basis, on (stroked 2012).    I got this free print off from a bullet journal group, where the designer wanted to see what people would do with it.    There were many things I could use if for, and I pondered it carefully.   Then I thought if I used it for his therapies, he might get more excited about starting again. I will probably have to reprint it as I get better ideas on how to do it, but this is a learning experience. I like how it will be a visual for him, to see what he's actually doing. I just got it made and he just started a reading period, so the first day (Mar 11) shows he has started. After he read he told me (in aphasia talk!), "you have to make another picture, I'm playing solitaire now!" Game playing is important to his decision making skills and cognition, and I was very pleased that he initiated something on his own! So, I put another item on his list and marked it on the calendar - I think this is going to go over really WELL with him!

     

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  9. I can't wait for the warmer temperatures.  February was too cold for me with temps dropping into the 50's and 60's and night temps in the high 30's and 40's ........brrrrrrr.....I'm such a wimp since moving to Arizona.    :)  I will be glad when it's hot enough to hit the pool again ....I sooooooo need the exercise.

     

    February may have been a short month, but it was not a good month for me - thankfully, it's over.   I pretty much blew off the diet most of the month of Feb., likely because I was stuck inside too much with the colder temps (ha, good excuse)!  I also lost one of my helpers since she always needed to take too much time off (last minute) with a daughter in high school and a grandchild she seemed to have most of the time.   I had to put my foot down and insist that if she still wanted to work two days a week for 4 hr. at a time, she needed to plan her other activities around that or I couldn't use her when I couldn't depend on her.  Carmen is still coming one day a week, but drives from Scottsdale (an hr. each way), and it's costing me too much for her drive time, so we're back between a rock and a hard place.  I'm researching adult day care places, but running into a problem with the numerous deficits that Gary has and them not wanting to deal with it.  Nursing homes that are somewhat affordable are way too far away, so options are limited.

     

    Gary is sleeping in this morning, and I am not in any hurry to wake him.  He's going to want to go out for pancakes as he's been cooped up in here long enough, but I dread taking him out because it's so much work for me and hard on my back these days.   Plus, I don't want to be tempted to eat out and start off the month of March with blowing the diet again.  I still have March and half of April to lose 20 lb. to reach my goal of minus 50 by our 50th anniversary in April.   I'll get there, it's just a matter of getting over the hurdles that pop up along the way.  Think spring....think warmer temps.....think swimming for exercise....think bikini (omg, did I really say that at my age)?    lol

     

    Sarah

     

     

     

  10. I'm still here... no real changes... the nursing home makes a vague effort to try to assist more... but dan does a god job with his OCD and control mechanisms .....so i keep dancing... Nancy the dancing bear...lol.....My routine is the same , get up take grandson to school (for now - my daughter works early and his dad fell and broke his hip at christmas, had a replacement done - is on the mend.) drop him off, go to work. work till noon, get dan his mc donalds ( i give up fighting about his food) get him up, wash him up ( unless its a shower day - 2x per week ) then he will either sit up for a time and play checkers on his iPad and watch tv or i will take him to my work (I work as a law assistant , it is part of my low pay, but freedom benefits agreement i got with the boss) he'll hang out if he comes to work with me. Then we either get mc donalds and go to my daughters house or back to the home. If we go to daughters house i cook there and he eats there. then back to the home where i wash him up and get him into bed.....then i either go home or once in awhile go out to my local hang out ( bar) have a few and go home... thats my life in a nut shell-- for now I seem to be able to manage.... my anxiety and depression is sorta under control--- but I still lie awake with the what ifs of the world... thus the reason Im posting on stroke net at 3 am.... lol--- I play with the idea of caring for him at home ( mine again) but know although it makes great financial sense it makes no mental health sense . Dan has the capability still to mentally devastate me. ... and thats a road i can not walk...... old timers on here remember that... lol.... life is manageable, not good or great , or fun , or full filling, but it is fine line manageable..... or as everyones favorite saying ------ IT IS WHAT IT Is.....

     

  11. This year makes the 10 the year since William's stroke.  He is declining.  I mean he sleeps more and gets more confused often.  Cognitive abilities are declining.  I have not been bringing him to the pool.  He just does not want to go.  I no longer bring him out to eat.  He just gets too confused.  He constantly tells me that he just does not understand.  He is getting more incontinent.  So, I do more laundry.  He usually lets me put him in the shower.  But that is a chore.  He hates it.  He usually will take his meds.  But some days he refuses.  I feed him healthy stuff.  But, he does not have that much of an appetite.  He does enjoy the dogs.

    some days he will be alert and up.  But other days he just sleeps and then wants to be up all night.

    Life goes on.  He seems content.

     

     

  12. worryisamisuse
    Latest Entry

    Ya, ya, I'm amazing. I have and am overcoming a lot, and I have many able-bodied friend and family members, but I would like to make friends and share more BI hardships, or I met a guy who suffered a SCI who I have a lot of similarities with too...  Basically if you're amazing (and you probably are) you should talk with me. What's the worst that could happen?

  13. cypher

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  14. GeorgeLesley
    Latest Entry

    Some of you know that Lesley’s 95 yr old mum has come from New Zealand to live with us in TN. The day after Christmas we got a most welcome surprise, her Green Card has been approved and she is now a permanent US resident.we are all ecstatic to say the least. Although we expected it to go thru, it was still in the back of our minds, what if.... but now, all is well on that front. Having her here is such a joy and blessing to us all.

     

    this may change our travel plans with the motorhome. Mum dearly loves to travel in it and see the USA. She is so bright and asks a million questions about everything she sees. On a recent trip to Branson,MO for vets week as we were coming back she saw cotton fields being harvested in Mississippi. We stopped and got her some fresh cotton. She considered it a real prize. We also passed by some catfish farm ponds which she found interesting. Never a dull moment with her and Lesley around!

     

    our planned winter trip to Texas got canceled because I started to have uncontrolled afib. Off to a cardiologist and then two weeks of a heart monitor and then told I needed a pacemaker. A few days later it was in and done. I must admit I feel and look better afterwords. In a few more weeks the healing should be finished and we may reschedule some sort of RV trip. Mum and I are now healthy, but Lesley may need a knee replacement so all is on hold pending where that goes.

     

    so that is a quick catch up on our life here in TN. Got to go now, a cup of tea is calling........

  15. lharrison
    Latest Entry

    its that time again HO!HO!HO!a merry Christmas to you all just wanted to wish all of the members, a very merry Christmas to you and a very happy new year wish for you. a wish that you will get all that you want to have I hope that 2o18 will be a very good year for you , and now it is time to do all that you are able to do so that you may continue to get even better . so never give up and always strive to be the best that you can be and always know that I will be there for you cheering you on for you so merry Christmas to you and a very happy new year , and rember this your brain can and will repair itself , so never give up

  16. Well it's that time of year when everyone is running around trying to buy out the stores and cook all the food in one day! LOL! Me I'm just plain lazy to all this. I bought my 3 Grandbabies Christmas presents online and never once went to the store to try to shop. Prayers that everyone will have a MERRY CHRISTMAS AND A WONDERFUL NEW YEAR!!! Praying for all my wonderful friends on this site and all of you I haven't had the chance to meet yet but hope to one day. Love and Hugs to all!!!

     

  17. My son has to be on call for work on Thanksgiving, so he's invited a bunch of people to his new house.  My husband has to work, I don't drive; I can't go.

     

    It's been years since my stroke, and I think I've done a pretty decent job of accepting my physical deficits.  Today though, this really, really, really stinks!  :@#*%:

  18. I recently stumbled across yet another device that can make a huge difference in the daily lives of stroke survivors and their caregivers. This one is called Shower Buddy and it is a high-quality, well designed product that makes bathing easier and safer for people with mobility problems. My wife is one of those people. She had been growing increasingly anxious about bathing and as result my own anxiety level climbed as well. We were starting to dread bath times and our stress load grew heavier with each bathing. Dorothy was suddenly paralyzed with fear each time she had to move from her transport chair to her shower bench, with help from me throughout. I'm reasonably strong for a guy of my age, 73, but I couldn't help but worry about what would happen if she slipped or fell. Keeping her safe has been one of my primary objectives for the four years that have passed since Dorothy had her stroke. i considered several approaches to this problem, including a major bathroom remodel that would cost thousands and still not be ideal. I also considered one of those walk-in tubs but I had serious doubts about whether they would work for Dorothy. She would still have to walk on potentially slippery surfaces and she would still have to sit and stand on the tub's chair. After researching the Shower Buddy I decided that it just might be our best option. I showed videos to Dorothy and she agreed. So we bought one. They retail for $3,000 but we bought ours online from a woman who had bought it for her brain-damaged daughter but had never been able to use it. She offered to reduce her price a little to persuade me to buy but I paid her full asking price, which seemed fair and which I assume she could use. (I didn't want to add to her problems.) The Shower Buddy has turned out to be a huge improvement for Dorothy and me. It has a big, sturdy a chair thanks to excellent design and engineering  can easily be slid over the tub. She never has to get out of that chair. No more danger of falling during transfers, no more anxiety. Bathing is now pleasant for her--and for me. I wanted to share this with people who read this part of StrokeNet in case any of you might benefit from this product. I realize it is not cheap but I also realize it is a true godsend for some people. Be advised that the Shower Buddy is made of metal and appears to be of high quality. It is very sturdy too and is designed so that there is no wiggling at any point. Like the lightweight foldup power wheelchair about which I previously wrote on this web site, the Shower Buddy takes a lot of stress out of day-to-day living for us. And had we not stumbled upon it in the course of doing online research we probably would never have known about it.

  19. well, as you know itshalloween . time for a lot of trick or treat, and not only that but time to start on your schedule to get better and to work harder remember it never stop as long as you keep at it weither it be walking, or just exercise, as the nike slogan goes just do it . I'm rooting for you don"t give up just keep on keeping on just do whatever you are comfortable doing , for me it is walking still walklots not running as yet but I am sure it will just take time it is all about positive thinking so just get out there and get going

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    ON A NORMAL DAY SINce RETIRING FROM MY EDUCATION CAREER,  I WAKE AT 5 WHEN MY WIFE  RISES TO BEGIN HER WORKDAY I I GO TO THE KITCHEN, GET AN ESPRESSO AND OPEN THE LAPTOP TO SEE WHAT MAY HAVE HAPPENED IN THE WORLD OVERNIGHT.THEN ITS OFF TO THE GYM ABOUT 8,AM AFTER THE SCHOOL TRAFFIC IS DONE. I SPEND  AN HOUR THERE,THEN HOME FOR BREAKFAST BUT .BACK ON AUG 28 WHILE ON THE VERY BUSY 2 LANE ROAD HEADING HOME, I FELT MY TRUCK PULL HARD LEFT TOWARDS ONCOMING TRAFFIC, I WAS NOT SURE WHAT WAS HAPPENENNING TO THE TRUCK,SO I SLOWED TO 30MPH, THEN I REALIZED IT WAS MY LEFT ARM PULLING THE WHEEL OVER TO THE .LEFT  I REMOVED IT FROM THE STEERING AND DROVE WITH MY RIGHT HAND UNTIL I GOT HOME,THEN IN THE DRIVEWAY I OPENED MY DOOR WITH MY RIGHT HAND AND STEPPED OUT ONTO A LEFT LEG THAT DID NOT HOLD ME, FELL HARD ONTO THE CONCRETE DRIVE. AND  PANICKED MORE THAN  A LITTLE   I FORCED MYSELF OFF THE CONCRETE ONTO THE RUNNING BOARD AND TRIED TO CATCH MY BREATH, THEN WALKED INTO THE GARAGE AND TO THE HOUSE. I WENT TO THE SHOWER AND TOOK A WARM ONE TO RELAX. THEN I TOOK MY BLOOD PRESSURE TO SEE IF IT WAS HIGH,I FOUND THAT IT WAS 202 OVER 110. I TOOK 2 ASPIRIN ( SMART) AND CALLED A NEIGHBOR TO COME OVER, HE THEN SAW ME AND TOLD ME I NEEDED TO CALL 911. I ALSO TEXTED MY WIFE WHO SAID TO MAKE THAT CALL RIGHT AWAY, SO  OF COURSE,I DID NOW ,I WAS  QUITE WORRIED, BECAUSE I HAD MADE IT TO 68 YEARS OLD HAVING NEVER BEEN HOSPITALIZED BEFORE.   I TOLD MYSELF  I WOULD TRY TO PAY ATTENTION TO THE EXPERIENCE AND JUST RELAX, THE EMT CREW WAS SO PROFESSIONAL THEY MADE IT EASY FOR ME. NEXT CAME EMERGENCY ROOM, WITH A BUSY GROUP IN BLUE SUITS ALL AROUND ME. , I KINDA FOUND IT HARD TO BREATHE, ANXIETY SET IN, AND THEY OFFERED ME OXYGEN  AND A DRUG TO RELAX ME AND LOWER MY NOW 210/112 BP. NEXT I FELT WEIRD AND WAS TOLD I WAS STROKING,, HAVING ANOTHER TIA WHICH COME IN GROUPS OFTEN., I HAD AGREED TO GET A ROUND OF TPA, THE CLOT BUSTING DRUG THAT PREVENTS MAJOR STROKES, WHICH CAN FOLLOW A TIA, SCARY BECAUSE IF I HAD ANY BLEEDING INTERNALLY, THE TPA COULD TURN 'EVIL" AND KILL ME.

    IT WORKED HOWEVER AND I WAS TAKEN TO GET A CT SCAN LOOKING FOR BLOOD AND CLOTS IN MY BRAIN, NONE WERE FOUND AS REPORTED BY THE NEUROLOGIST, SO I WAS IN THE CLEAR FOR AWHILE. PHEW! I THEN HAD MORE SCANS, A FULL 45 MINUTE MRI, TALK ABOUT CLAUSTROPHOBIC! ALSO A CARDIAC SCAN AND NUCLEAR STRESS TEST, AS A GENETIC CANDIDATE FOR HEART DISEASE, I HAVE ALWAYS CARED FOR MY HEART, EXERCISING REGULARLY AND EATING HEALTHY. I ALSO TAKE SEVERAL HEART SUPPLEMENTS THAT ARE HELPFUL, SO ALL THET TESTS CAME BACK NEGATIVE FOR HEARET DISEASE AND BLOCKAGES, OTHER THAN AN ELECTRICAL ISSUE, A RIGHT BUNDLE BRANCH BLOCK WAS DISCOVERRED, WHICH CAN CAUSE ATRIAL FIBRILATION AND ULTIMATELY LEAD TO STROKE.  I also had a full body MRI.

     I SPENT 3 NIGHTS IN EMERGENCY CARE THEN 5 MORE IN ICU. I COULD HAVE BEEN RELEASED TO REHAB , BUT IT WAS THE  FRIDAY BEFORE LABOR DAY WEEKEND AND THE REHAB CENTER WOULD NOT ADMIT A NEW PATIENT. SO 3 MORE NIGHTS IN THE RECOVERY AREA OF ICU.  FINALLY TUESDAY ARRIVED, AND I WAS TRANSFERRED TO IN- PATIENT REHAB, 

    ON LEAVING THE HOSPITAL, I WAS STRUCK WITH HOW GREAT IT FELT TO BE OUTSIDE, IF EVEN IN AN AMBULANCE,

    THE REHAB CENTER WAS AnOTHER NEW EXPERIENCE, A SMALL PRIVATE ROOM WITH very SMALL TV, a BED, LOUNGE CHAIR ANDt wo  ROLLING TABLES .THIS WAS TO BE MY HOME FOR 3 WEEKS. VERY DULL, EXCEPT FOR THE THERAPY SESSIONS WHEN MY WHEEL CHAIR WAS ROLLED INTO THE GYM, FOR TWO OR MORE HOURS OF LEG EXERCISES, AND LEARNING HOW YO USE A WALKER SAFELY. ONE  DAY AFTER SEVERAL WEEKS I WAS INSTRUCTED TO TRANSFER TO A LOW MAT- TABLE , MY CHAIR WAS PLACED SEVERAL FEET AWAY, SO I STOOD AND WALKED,TO THE MAT. THIS WAS SUCCESSFUL BUT NOT VRY PRETTY. MY LEFT LEG WAS GAINING IN STRENGTH BUT NOT POISED AND IN GOOD CONTROL, I REALIZED THOUGH THAT I HAD ACTUALLY WALKED AND WAS QUITE PROUD OF THAT ACTION. THE OT THERAPY CONCENTRATED ON MY LEFT ARM AND HAND USING VARIOUS TECHNIQUES INCLUDING E-STIM, ELECTRONIC MUSCLE STIMUATION, WHICH AMAZED ME TO SEE MY HAND AND FINGERS MOVE ANIMATEDLY. I ALSO HAD SPEECH THERAPY TO IMPROVE MY VOICE CONTROL, AND WE SPENT SOME TIME SINGING WHICH FOR ME WAS A MAJOR PART OF MY LIFE PRIOR TO ALL THIS.

    I KNEW THAT THE POSSIBILITY OF REGAINING MY GUITAR PLAYING ABILITY WAS REMOTE AND WELL INTO THE FUTURE OF ALL THIS. DEPRESSING, BUT MY  REALITY NO DOUBT.SINCE A STROKE CAN MAKE YOU VERY EMOTIONALAND  QUICKLY, I WOULD BE OVERCOME WITH CRYING JAGS WHEN  I BECAME AWARE OF THIS REALITY, AND THESE ONLY ABATED WITH A PRESCRIPTION ANTI -DEPRESSANT PRESCRIBED FOR ME. THE THREE WEEKS DRAGGED ON WITH PROGRESS BEING HARD WON, AND MANY  HOURS SPENT IN MY BORING ROOM., ALONE THANKFULLY I HAD MY LAPTOP BROUGHT IN, AND FOUND THE STRROKE SUPPORT ONLINE NETWORK, WHICH GAVE ME MANY INSIGHTS INTO WHAT OTHERS HAD EXPERIENCED WITH HAVING A STROKE AND AFTERWARDS. I ALSO STARTED READING A BOOK ON RECOVERY FROM STROKE WHICH WAS VERY EDUCATIONAL. I SAW THE POTENTIAL AND MY OPTIMISM INCREASED GREATLY.

    I JOINED AND EAGERLY READ THE POSTS FROM OTHER SURVIVORS. I RECEIVED A NUMBER OF VISITORS INCLUDING A FEW OLD FRIENDS I HAD NOT SEEN IN QUITE SOME TIME. MY WIFE CAME EVERY DAY AFTER WORK , OFTENROLLING ME OUT TO THE COURTYARD FOR SOME AIR AND SUNSHINE. I LOOKED FORWARD TO SEEING HER EACH DAY, AND SHE PREPARED TO BE MY HOME CAREGIVER SOON. I WORRIED ABOUT BURDENING HER, BUT SHE WOULD NOT HEAR ANY OF THAT, MY SONS BOTH CAME TOO AND ONE STAYED THREE DAYS, SLEEPING ON THE COUCH IN THE ROOM I HAD. HE IS  STRONG YOUNG MAN AND VERY POSITIVE , SO HIS VISIT WAS GREAT FOR MY MOTIVATION. I RELISHED THE TIMES I HAD ACCESS TO A HOT SHOWER AS THEY WERE FEW, BUTIT WAS WONDERFUL.BEING CLEAN AND  FELT GREAT AFTERWARDS. 

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    HostSue
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    I accidentally created this while trying to work out for Linnie what the name was, the title of the blog or of the post.

     

    This will be just left as a bad example...lol.

     

    Sue.

  20. I've just got back from today's Running Program Session.  This is the second one I've been to since the toe surgery. Last week I had pain after 3 sets of stairs so we had to stick to low impact, low stretch activities.  Today I started with 6 minutes on the cross trainer. followed by 10 sets of stairs with no discomfort at all. Did my total gym left leg squats and some "calf raises" also all fine so then we moved across to the mini tramp.  Once on the tramp Hannah got serious about getting me up on my toes. which I haven't been able to do for probably years. between the curly toes, spastic calf and calf surgery.  I felt like a real cltuz as I just couldn't do what she asked.  It turns out I've been compensating really well by using my knee rather than my ankle, but now she wants me to do it the right way (as physically it should be possible now). We eventually got me doing it by taking my shoes off and using the total gym at almost flat, with Hannah providing tactile feedback. It was so hard to do I was dripping with sweat and exhausted after just a few.  But I did it, now to make this the move the body wants to do rather than the other way.  Then I'll need to build strength again so I can do it with weight and gravity. I feel a bit like I'm back at square one, although I also know this is how it has to be done. and I'll get more from unlearning the bad habit. It's just always so hard to take a step back so you can move forward.

  21. RonA

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    Sometimes you get a lot more out of a product than you expected. My wife and I recently purchase one of those lightweight, fold-up, power travel wheelchairs and it has turned

    out to be a real blessing. Although I am a relentless consumer of information about things that could help people such as my wife, who have had strokes, I had never heard of this particular product until a blogger from this site, who writes under the name Strokewife, told me about it. She had bought one for her husband and assured me that it was a godsend for them and allowed them to take a much-needed cruise together.  With that information, I set out to research the product quite a bit. I finally found a chair slightly more expensive than the one Strokewife bought and decided to buy it. The reason was that it has a footrest that can fold back out of the way, thus enabling the user to get closer before sitting down. This particular chair, made in Malaysia, also impressed me with its quality and with various reviews I read. The chair is made out of lightweight aircraft aluminum and folds up to the size of carry-on luggage. Indeed, that makes it ideal of air travel, though some airlines apparently require you to check it rather than store it in the cabin. Although the chair's weight is not a lot lower than the weight of the manual chair we had been using, it is far quicker and easier to use and requires no assembly to set up once you pull it out of your vehicle. Five days after I ordered the chair it arrived from Malaysia, fully charged and ready to go. We took a few days for Dorothy to become acquainted with it inside the house before taking it out. We started in an uncrowded grocery store before progressing through a slightly crowded Costco and then to one of our favorite restaurants. It was wonderful. Let me tell you why.

    I never minded pushing Dorothy and her manual chair anywhere she wanted to go but she did, at least some. She said she never felt independent when she had to be pushed through stores, restaurants or what have you. As for me, the problem with the manual chair was that I always had to stop for doors that don't open automatically. If no one held the door open for us, I would have to open the door myself and awkwardly push Dorothy and the chair on through it while she did her best to help with the one good leg she has and I held the door open until she got through it. Once inside I had to go everyplace she went, of course. Furthermore, I couldn't use a shopping cart because I couldn't push one of those and the wheelchair too. It was all do-able but somewhat inconvenient. With the power chair, once I have it outside of our SUV and unfolded, Dorothy can get in and go anywhere she wishes. If she wants to browse one part of Costco while I browse another area, she can do so. If I lose sight of her I can call her on her cell phone or she can call me. And of course I can use a cart to put items in just like we did pre-stroke. It may sound simple and even trite but it makes a huge difference for use. We go out more often because it is easier and more enjoyable. In short, this chair is wonderful and well worth the $2,500 price.

    Everywhere we go people take notice of the chair. Not many have seen one for some reason even though they been around for several years. I'm not sure why except that they are travel chairs and I don't think insurance usually pays for them. To me they are a great,  mostly undiscovered treasure and I am forever indebted to Strokewife for telling me about them. The chairs even look good and are far more compact than a manual chair.

    Dorothy has a regular power chair, by the way, but it weighs more than 200 pounds and thus cannot be transported without installing one of those lifts on the back of our vehicle. While we could do that, it would be less than ideal in that we would still have to get the chair from inside our house to the garage, which requires use of a portable ramp. Once again, it is do-able but not convenient and thus discourages usage. Another option would be one of those full-size power travel chairs that can be disassembled into three pieces so as to be stored in the back of a car or SUV. That would work but assembling and disassembling a full-size power wheelchair is not exactly convenient. With the foldable chair that we bought, you just pull it out of the vehicle and open it. No leg rests to install, no parts to assemble, no nothing.  The battery is lightweight and is based on the technology long used by the computer industry. The 45-pound total weight of the chair is a bit heavier than you might think but I can handle it fine and I am 73 years old. Women my age might have more trouble, so everyone should keep that in mind. Then again, anyone who manages to load and unload a manual chair could certainly handle this one.

    I'm telling you folks all of this because this kind of wheelchair might do as much to improve the quality of your lives as it has done for ours. I can't overstate what a difference it makes. Going out and getting around is so much simpler and easier than it was prior to our purchase of this chair. It has literally been a life changer for us just as it was for my friend Strokewife and her husband. We leave it in the back of our SUV so it is always loaded and ready to go.

    There are several brands of these chairs on the market and I have no way of comparing them. Ours is called Foldawheel and it is sold on the manufacturer's website, Wheelchair88.com, as well as on Amazon. We bought the smaller chair in the series because my wife is not large. It's plenty big for her and can even transport me a test drive showed. All I can tell you is that we have found no problems with the chair or the company in the 3 months since our purchase. The company has been easy to reach and responsive when we've had questions. And their shipping was flawless and fast. I can't vouch for the other manufacturers but I have no reason to think they wouldn't be fine too. 

    So there, I've said it. You all know what I know and if you think this kind of chair would be as good for you as it has been for my wife and me, I wish you the very best

     

  22. Some Brief Thoughts on the Second Anniversary of My Stroke

     

    Two years ago today, while going through security at SeaTac airport, I had a stroke – a brain bleed that in the majority of cases is not survivable. My left side was paralyzed and I remained in hospitals in the Seattle area for a month. I had to relearn how to walk, talk, chew, swallow, and do most of the things that make us normal.  In the past two years I have worked hard, given up, cried, laughed, been angry, been grateful, learned (or learned to use) new swear words, and some days, just stayed in bed. I walk slowly and awkwardly, but I walk. My left hand doesn’t function fully, but I am figuring out new ways to do things. Overall I am grateful, but I expect the sadness and anger will never completely go away.

     

    Today we finalized a three week trip to Argentina and Chile, cruising around Cape Horn. We are not doing it the way we would have in the past, but we are going to our sixth continent! Life is good!

  23. srademacher
    Latest Entry

     

    Friday, June 30 th   My 69th and would have been Dan’s 44th birthday – we headed over to the new house with Kelly and her friend, Jim to do the cleaning and prep work to get ready for moving.   Jim got all of the bigger items done---door locks changed, hardwiring the electrical for the drip system, replacing fan light in bedroom #2, replacing the garbage disposal, and installing the grab bars in both bathrooms.    Kelly was here to get the cleaning done and put the shelving together for the garage items, but kept getting sidetracked with other jobs.  She watered the plants front and back and checked the chemical levels in the pool, and changed out the RO filters while Jim had the garbage disposal out of her way.   Gary was bored out of his mind when he wasn’t napping so I parked him in the living room, facing the wall where we would eventually put the big tv, and told him to pretend he was watching his favorite show on tv.  I asked him to please sit still while we worked.   As usual, he had to be a smartass and told me  “change the channel.”  

     

    Saturday –Kelly was supposed to pick me up at 6:30 so we could go get the Uhaul truck by 7 a.m.  I had arranged for a neighbor, David to come over and sit with Gary for about a half hour while we went to get truck.  It was nearly 7:10 when Kelly showed up with the Uhaul.   David stuck around and helped with the loading of items in the truck once Joel and Ryan arrived to help.  I had been up since 3:30 and got all the computer stuff unplugged and ready to go so tried to stay out of their way and keep my feet elevated.   Carmen arrived at 8 a.m. to start cleaning up behind us as we emptied out the rooms.  We were on the road to the new house by 10 a.m. and they managed to get it all unloaded from the Uhaul truck, son’s pickup and my SUV,  and were out of here by 1:30.   Gary and I were here alone with no internet, no tv and no phone service till the 3rd.    My cell phone carrier – Consumer Cellular has intermittent service here at the house – looks like I’ll be changing carriers soon.

     

    We ate a late lunch after everyone left since none of them wanted to stick around for lunch.  By 5:30 pm the pool in the back yard was shaded over enough that I didn’t need to lather myself in sunscreen, so we headed out back – me in my granny swimsuit, and him in a sleeveless top and shorts.  I parked him on the patio and grabbed the skimmer to clean the few leaves out of the pool before getting in.   It didn’t take me long to realize I need grab bars for myself to get in and out of that pool.  There was nothing to hold onto as I took the few steps down into the pool nearest the back patio area.   It was even worse trying to get out.   I had to get out on my knees and try standing up from there without anything to hold on to.  We need to remedy that sooner rather than later.   I managed a 40 min. swim and because I had been awake since 3:30 a.m., I finally hit the new bed by 7:30 p.m. and slept until 2:30 a.m.   I was exhausted.  Gary didn’t wake up to pee until nearly 5:30 a.m., and then rolled over and went back to sleep until 9 a.m.  

     

    While the new grab bars in the bathrooms work well for me, we still have a problem with getting Gary in and out of a tub.  The bathroom off the master bedroom is narrow and he has to turn a corner to get to the tub area – looks like bathroom door removal is inevitable.   For now, we can get him on back patio in a shower chair and hose him off.  

     

    We survived Sunday in the new house – just the two of us ….cell phone coverage was still very spotty and driving me crazy.  I did get a few incoming texts but could not respond to them.  Jim had texted me several times about picking up the ADA toilets and when he could install them.  I finally was able to get a text back to him that Monday was not a good day with the cable guy coming to do phone, internet, and tv hookups and Kelly would be here to help get household stuff in from the boxes in the garage.   We didn’t need more people in and out tripping over each other in the narrow hallway from the garage.  He agreed to wait until Tuesday to get it done and figure out what we need for ramps in and out of garage and back patio area.   Gary and I managed a trip out to the local Walmart for some grocery items and picked up a KFC meal at their drive-up window and headed home.  I also managed to get to the washer and dryer in the garage to run a load of clothes.

     

    Monday morning, July 3rd, Gary was yelling about 4 a.m.  I decided there was no point in trying to go back to sleep so I got up and ate my bowl of cheerios before it was even light outside.  I found a few more items I had been searching for in that pile in the garage and brought them in, but I’m still missing the connection cable for the printer.  At least I got all the computer cables hooked up so COX can hook us up to internet today whenever they get here.   I have no idea what time they are coming, but hope it’s early so I can get out to the bank and Walmart while Kelly is here.   I didn’t get all the items on my list when we went to Walmart yesterday because it’s not easy pushing a grocery cart and a 220 lb. man in a wheelchair…feeling it in my back and neck this morning….won’t do that again! 

     

    Things will eventually calm down and we can start enjoying our new home.  Once all the boxes and bins are unpacked and things neatly put away, we can enjoy the peace and quiet of a smaller community.  Our biggest problem here will be keeping the pigeons away, and I think Kelly had a good suggestion for that.  I have no idea why the house was designed with a ledge above the garage and the front entrance, but I’m sure there must have been a pigeon involved in that decision making process.  I wouldn’t mind if they just sat on the ledge, but if I want to clean up crap every day, I’ll get another dog.   No pigeon poop for me…..thanks anyhow!!!!

     

    Sarah

     

     

     

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