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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 hate that I can leave a positive post one day and then am miserable and need to let it out (though it may be negative) the next day. My moods and emotions go from one extreme to the other even though I see my Psychiatrist every 2 months and am medicated with what has worked the best so far. I still can't control it at times. Ughhhh anger/frustration/depression/feeling alone/feeling like nobody...and I think to myself why do I let something so simple so nothing sometimes to affect me. It just does...whether I am aware or do things to prevent or control it...whether I try coping skills or positive self talk. I can just end up in a blubbering mess of lonely tears. Here is an example: My dad is finally selling an older model Monte Carlo that sits under the two car carport and never moves to my nephew. I was shocked and utterly excited. I was so happy that nose I could park under the carport because the birds use my car as a bullseye or their lavatory in other words and I have difficulty finding the energy or coordination to wash it myself...oh and I am unemployed and broke always (still working diligently on disability). That means no car wash places for me. Ok back again to the parking situation. If you don't already know let me explain that I live with my dad while I am going through the disability process. Anyways, I was so thrilled that I could park under cover. My step mom smiled and spoke loudly to my father (he can't hear a thing) about my excitement and he promptly said noooo you put your suv under there. My stepmom has 2 vehicles but doesn't use her suv. His reaction hit me like a ton of bricks which I think is crazy on my part. I immediately welled up with tears and felt so alone so invisible. I finished cleaning the dishes in the kitchen where I stood and then scurried to my bed to log on and release this yucky. I'm probably taking a nap in a few moments to refuel. Again this is me using my blog as purgatory. Maybe in a couple of hours I will do something fun.

  2. I am swelling so badly, my edema is not pitting but walking is painful,like on rocks on the bottom of my foot. I cried. I wear a circaid juxta support stocking thing,but it still swells. The cardiologist changed my diuretics from lasix to bumex and spironolactone.  And so then she said nothing can help me because too much diuretics can hurt kidneys. Yes I elevate,but sometimes I sit with legs down because I get up and down. Then I lie down elevating, which puts my leg to sleep,foot tingling. Only 1 foot,the one on painful leg is numb.

     

    So, the doc here at the home put me back on lasix,and I will not be taking what the cardiologist prescribed. Ok, so I was on lasix for a while and wanted something better,and look now I need the lasix again. I will report this to my primary again. See what she says,but the doc here sees the problem and just set aside the doctors order. How can I put my trust in any of this.

     

    I worry not following the advice of a cardiologist. But according to her no cardiac problem now. *Plus I am on a no salt diet right? but I am taking processed ham off the chef salad, ask for a fruit plate when the food served is ham or something salty like sausages.

     

    Sigh. So back to Drawing board.

  3. beingnobody
    Latest Entry

    Isn't it odd, in this time of technological marvel and information overload, that so much of the material we access online is so outdated?

     

    Along with my recent stroke I am also a throat cancer survivor, approaching my 3 year remission anniversary on Sept 29.

     

    I found that when I was first diagnosed and started researching my situation that the majority of the data online regarding  prognosis and such,.. You know, The ultimate question of "how long do I have?" was so outdated.

     

    And I mean really outdated.  Like a decade outdated, according to my doctors anyway, who still to this day warn patients against relying on information gotten from the internet pertaining to nearly anything medical.

     

    Same thing I was told by neurologists at the VA when I was recovering from my stroke.

     

    Doesn't seem fair.

     

    It seems like information would be updated or more current... but yet...I follow a lot of medical journals and medical social media and it seems like even when information from a "new" study is published or posted online, that deeper scrutiny ultimately reveals in many cases that what is being currently posted is really just something that has at it's base a pretty ancient (relatively speaking) point of origin.

     

    Late night/early morning musings.

  4. I have read about it, that doing gratitude journal  & being nice to others are easy happy feelings booster. I will  do my gratitude journal whenever I remember from time to time, but never knew even thank you letter can bring out such a great happy feelings. In my post stroke journey I have encountered ton of doctors most were very nice to us some had better bedside manners than others, but my cardiologist who sealed hole in my heart was way kinder to me & will always have special place in our heart. We are all very thankful to him, & today after 14 years when our son starts writing his  medical college application essay & he still remembers cardiologist who did innovative surgery on his mom with minimum downtime. It reminded us of great doctor with amazing bedside manners & who had  kissed me on my cheek during our consultation visit with my husband after listening to ordeal we had gone through & now came to him for alternative surgery instead of open heart surgery to fix that hole in my heart.

    Anyhow sending him that thank you note made me feel so good, hope it brightens his day too. I can see power of being kind & nice to others is biggest mood booster. such simple tricks to do in life to be happy person.

     

    Asha

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

  5. I have just been to Broken Hill for a week with Trevor, it is cool and dry inland so on the sunny afternoons 

    I sat on his verandah and read and I'm always happy to do that. When he and his girlfriend  were available (they are both busy doing training courses) we went places, some new, some old favourites. On my birthday we went to Silverton, a former mining town now a popular place for artists and went to a couple of galleries. There are some wonderful paintings of that wild desert country beyond the Hill. It is good to have time to just enjoy being in a place where life is so different from home.

     

    It was my birthday and Alice's birthday while I was there, so two celebrations, mine was a nice dinner out, hers a special  afternoon tea. I haven't any unreal expectations these days so it was just good  to be with family for the day. I enjoyed my time with Alice it was nice to see the fun she has with Trevor. He plays a lot more games with her than her mother does so she has a ball while she is with him. His girlfriend has a Chocolate Labrador who is very popular with Alice, she hugs him and drags him around, I am glad she responds so well to him.

     

    The flying was not the problem I was told it could be, it was more my fear that something would go wrong that bothered me. I know the problem of increasing the lymphoedema due to pressure  was on my mind and of course while the stocking plus the new leg wrap was supposed to prevent that happening the stiffness made  me feel less confident in my ability to climb steps, sit for a long period etc. The walk through the airport was easier than I thought it would be as I had allowed plenty of time for that. I never realised how much I took my ability to get around for granted and jhow much easier life was prior to what is really just a minor glitch in my life.

     

    I looked at going on a trip out to one of the local opal fields, about three hours drive away on my next visit.I love opals and it is interesting country, boney and dry but with it's own special beauty. Living on the coastal strip as I do I yearn sometimes for the silence of the bush and Broken Hill gives me that feeling of isolation in the big sky country. There is something special about the sensation of seeing so many stars at night, having a different sunset every night, waking up to bright skies in the morning.

     

    Now home to take up the routine tasks. It has been raining while I have been away so the grass is greener than when I went away, it is also colder as there is an overcast sky. So now to settle down to my winter tasks, knitting, crocheting, reading, catching up on phone calls and correspondence. Today I went to a local market, had some time at the shopping centre and then some time doing preparations for  the Lions BBQ on Monday. It is good to have a variety of things to do. Some things I have had to give up but most of my usual routine still applies.

     

    It is good to be back and catch up with friends again, luckily nothing much happened while I was away. My other family members don't seem worried about me now things are stable healthwise. I know there will be many tests ahead of me for three to five years yet but know also I can only live my life one day at a time. And that is the same for all of us.

     

     

  6. Dan fights all pills has refused all for about the last 2 years. This includes pain pills and the like. But when his brace got put on wrong it stimulated some really bad pain for him. It took 2 weeks of his groaning and I finally said- if he didn't take some tylenol I wasn't coming anymore. Blackmail basically. But darn it helped his pain. So for now he is taking the tylenol. Everything in our lives has to be dramatic. Simple tylenols become big issues. Strokes - can, in Dans case take away common sense. ON the other hand, he still thinks to look when ever he approaches the car for any leaks. Last night he seen one. Ill get it checked soon, so there is that. It always boggles me what he knows, cares about and what he doesn't . And it changes, about the time a caregiver adjusts to his demand , it changes. 

  7. I have been using the bus for about 4 years now.  There are a few places I go on a regular basis, I know generally when the bus should pass by.  Yesterday was very warm, okay hot by Michigan standards (90+ degrees F 35 degrees C.  I usually go to the bus stop about 5 minutes before I expect to see the bus.  Yesterday was the same routine.  I was hanging back in the shade.  I was day dreaming about getting home taking a cool shower and just relaxing.   looked up as the bus passed by, at the estimated time I thought it would go by.  Darn it, right on time.

    Of course, I had a good laugh at my expense.    Given the choice of laughing or getting mad about the situation I put myself in. I chose laughter.  Who could I blame?  Only myself.  My day dream added 45 minutes to my trip home.  The best part of the delay, one of the bus drivers was playing real old Motown.  Early Michael Jackson, The Jackson 5, just to name a few. 

    I had to go south to go north.  Many do not understand, It is my reality and I don’t have an issue with it.

     

    Remember, Without Laughter, there would be tears or anger,

    Laughing is much more fun.  ;) 

     

    Peace,

    Jay

     

  8. Strokewife
    Latest Entry

    Red Rover, Red Rover Send A Caregiver On Over…

     

    The game Red Rover was a game I played during my childhood.  Often I, along with the neighborhood kids would get together and play this simple game around the summer holiday time. It did not require equipment.  The only objective was to call one individual to run over and attempt to break the barrier formed by the group of young individuals interlocking their hands.  If that individual did not break the barrier then that single individual joined the group forming the barrier. Each individual that broke the barrier kept having a turn until only one was left and declared the winner.  In our neighborhood we had to sometimes have more than one winner because there were a few boys that always seemed to break the barrier
    .
    As children I suppose we played this game simply for fun. There really wasn’t a concentrated purpose to increase our knowledge of team spirit.  Perhaps it did that without us realizing it.  Likely it wasn’t based solely on improving our individual strength.   Regardless of the actual premise for the game of Red Rover the goal seemed more about just having fun.  While we played this game for hours I never seemed concerned about time.  Those days of my childhood always seemed to be filled with fun.  I thoroughly loved my youthful years. Maybe it was simply because my whole neighborhood would gather during these holiday times like Memorial Day and we would eat, play, and embrace the festiveness of the time.  We just took time to enjoy being with each other.
     
    Certainly, when I was a kid I never thought about the purpose of Red Rover.  If my name was called I ran with all my might to break the barrier of the other children.  Although I always tried to break the barrier more likely I didn’t and I would then become part of the barrier. I never felt defeated. I just took on the role that was determined upon my turn.

     

    Three weeks ago, my husband, a 3 year, 2 strokes survivor was admitted to the hospital due to a grand mal seizure that rendered him unresponsive.  He had not experienced this kind of seizure activity before.  Well, he did in December but in a much milder fashion and we quickly went to the hospital.  At that time they seemed to conclude that he had a viral infection of unknown origin. He saw his Neurologist at the same time and he sent him through a course of test and blood work, which in turn started home therapy.  Somehow, my stroke survivor had aphasia begin after his hospital discharge in December.  While he improved with home speech therapy I still had discussion with the Neurologist of the possibility of stroke or TIA that didn’t show on Cat Scans.  We all seemed to agree that it appeared that he did but there was no solid finding. And, as I said earlier, seizure activity decided to jump on board. Thus today he is in a Skilled Care Rehabilitation Hospital to get back his strength, balance his blood pressure and continue his Physical, Occupational, and Speech Therapy while receiving medical attention.

     

    Since it feels much like playing the game of Red Rover I, along with my stroke survivor am running toward the barriers.  The difference this time of playing the game is I, along with my husband, seem to be breaking the barriers.  Sure all that surrounds care giving for a stroke and seizure survivor is still prominent.  I, for a while, am getting a little break from continual care giving since my husband is in a facility.  Yet, I do still have to keep up on them at the facility.  I have learned there is no place like home.  And, no one cares about my stroke survivor as much as I do. This current medical event really adds to my already very aware care giving self of the deficiencies still in the system.  Hopefully this is a barrier I will continue to break.

    So, as I hear the call of “Red Rover, Red Rover Send A CareGiver On Over” I reflect back to those days of my youth when it seemed to just be about fun.  My hope is that my stroke survivor excels and pushes past his current disabled boundaries breaking all barriers so that he can be declared the winner. And I through all this will be content with the idea that we are just having fun.
     

  9. Well after my pacemaker implant healed up and now works fine, I also had a heart ablation. The pacemaker keeps the low resting pulse good and the ablation keeps the high pulse steady without meds. So, we are now on the road again heading ultimately for Alaska. We left Tennessee the 4th of May and are now in central Montana for a few days. Lesley’s mum is handling the trip very well, the motorhome is performing great and all is good here now. A few days here in a town called White Sulphur Springs, MT at the base of the Little Belt mountains and we will be moving on to Shelby, MT and then on to Banff, Alberta, Canada for a week.

     

    after that on to Jasper, Alberta for a few days, and then a few weeks of roaming around British Columbia. After that, on to the Yukon and finally Alaska for a month or so. Then a slow return South on a path yet to be determined but will likely include a trip across southern Canada thru Winnepeg and maybe a stop where we used to live in Northern Minnesota. Should be back in Tennessee sometime in August.

     

     

    we had talked about this trip for many years but never seemed to get it done. Then when Lesley’s mum came to live with us it was decided. She and her late husband had always wanted to ride the rails across British Columbia thru the mountains, but never were able to do it. Lesley and I had planned to see the Canadian Maritimes, Nova Scotia and some other provinces this spring and go to Alaska and British Columbia next year, but now that mum is living with us we just flipped the trips and will do the Maritimes next year so we can fulfill mum’s dream with our motorhome this year.

     

    so we are blessed with good health, a wonderful 95 year old mother to travel with, and the opportunity to do so. I have nothing to complain about, life is very, very good to me at the moment. Yes I had a stroke, yes I still have some deficits and still take a few meds, but all in all life is being good to us.

     

    time for a tea.

  10. I was just thinking earlier in the week how quiet it would be again this Mother's Day.  Our youngest son is gone, he passed away nearly two years ago.....he was the one who always made sure he did something for Mom on Mother's Day and his Dad on Father's Day.   The other two sons are married and have wives who are Mother's so the day is usually spent with their own families.   Then Saturday came, and I made my usual short ride to the mailbox, taking Misha (our 1 yr. old schnoodle) along for the ride - it's his big thrill for the day!   lol   I grabbed the hand full of mail out of the locked mailbox and headed back home.   

     

    As I sifted through the mail, I saw an envelope from the Donor Organization of AZ and didn't think too much of it, aside from the fact it was in a thicker 5x7 envelope.  I assumed they were doing an annual campaign to get people to sign up for organ donations.  Upon opening the envelope, I found a letter, a brochure and another smaller sealed envelope inside.  There was a note that said "please read letter before opening smaller envelope."   I began reading the letter and it explained the process of putting organ and tissue recipients together with their donor families.  The letter also explained that if I was not yet ready to read correspondence from the recipient, that I could hold onto the letter and wait till I was ready. or send it back.  The brochure had suggestions as to how to correspond with the recipient if we wished to do so, taking into account privacy issues.

     

    I proceeded to open the smaller envelope and inside was a thank you card from the recipient of some of Dan's tissue.  The person explained that they had surgery and had to rely on tissue donation to complete the process in order to be able to get back to being physically active.  They thanked us for the gift of tissue donation and said they would keep our loved one in their thoughts.  Wow, I couldn't hold back the tears.......Dan is still doing for others and helping others, even though he is no longer here with us......I couldn't have asked for a better Mother's Day gift.

     

     

    Sarah

     

  11. ksmith
    Latest Entry

    So these past few weeks have been an adventure as well as Insightful.  My life 24 yr. old son broke his hip. How he broke it was just a simple as the perfect fall and perfect angle but luckily due to his age, his is going to heal very well. If he was older the surgeon said he would have had to have a total hip replacement. But all that aside, this trip taught me that no matter when push comes to shove I can make it. Now, it has taken me a few days of recovering, still am, but it was heartbreaking at the same time.

     I have problems with feeling a connection with   people, especially my children. My son is 24 going on 16, but aren’t most kids at that age, mainly boys. Lol.  I was hoping, in my mind that when I showed up, my son would have been so happy to see me. He was but understandingly he was in pain (saw in hospital) even still it was cold at best.  I think the hardest thing for him and me to understand is he wasn’t there for my recovery and as with most people that don’t know the struggles we had to go through to get to the way we are now is frustrating. He was frustrated with me for I couldn’t remember little things. It was a mess all the way around. Mind you, the last time I “knew” him he was 13. I guess I wanted that boy again.

     

    But all is good with his hip. I flew round-trip, had rental car (loved that car) had a good time. Now time to regroup

    ( picture of my rental car... I want this for my next car)

     

     

     

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  12. Ive managed to confuse myself - I have like 6 different blogs all with entries in them... no rhyme or reason except my own randomness- it there any way Admin could combine them into one that is just NancyL blog? 

    Dan has been doing well ( as he can) he loves coming to my work and putting stamps on envelopes. It is a very precise process for him. It seems to give him a avenue for his OCD -- puzzles could do that for him, but , puzzles aren't "productive" - stamping is. lol I am very fortunate to have a boss who allows this, and its a balancing act to keep Dan at bay so he doesn't manipulate his way into it becoming daily... 

  13. 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.

  14. 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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  15. 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.....

     

  16. 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.

     

     

  17. 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?

  18. cypher

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  19. lharrison
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    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

  20. 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!!!

     

  21. 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!  :@#*%:

  22. 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.

  23. 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.

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