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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. Nothing new to report  here, time just fly by. I blink & weekend is gone & so does the week.  recently after my fall on stairs I was having pain in my good leg knee, went to doctor to get it checked & according to him, he did not see any fracture or any other major trouble so his suggestion was take OTC pain relievers like aleve or anti-inflammation pills. pain is no fun, though it has power to push you to dark place fast if you don't keep eye on your thoughts. So I am keeping eye on my thoughts. Sunday is usually reserved for watching my super soul sunday show on oprah's OWN channel which does great job of mood equalizer and puts me on right direction. yesterday she was talking to author Iyanla vanzat about her new book trust. listening to author about her life experiences which were rock bottom & still finding courage to climb up from that muck was quite inspiring. We all are total sum of our experiences in life & our decisions & choices we make during our life's journey. I realize having great set of parents & family did give me head start in my life, parents who made sure to give us best education & always looking out for us, things we take for granted.

     

    Asha

     

     

     

  2. Today was another two medical tests, one more to come on Monday and then a week without - me time. Church events start up this week too. Coffee and Playtime on Friday morning so it will be good to hear what the little ones have been up to through the holidays. I have seen several of the families shopping through the Christmas period so have not entirely lost contact. There may be some new families too as some of the little ones leave to go to school or preschool, others come to take their place.

     

    Five of my grandkids go back to school this week, Alice starts school next week. It will be a strange feeling for Trev who has built his own routine around her preschool days. I have seen all the grandkids except Alice over the summer holidays and feel very lucky. Trev is going to do some training to assist people with disabilities. He has wanted to do this for some time but the course hasn't been  offered before so this is a great opportunity for him to change into a line of work with more opportunities.

     

    Because of the holidays and the hot weather a few of the outdoor jobs have been neglected so I have been out arrmed with a broom attacking spider webs. Spiders have thrived in the hot dry weather and multiplied. I am for saying " live and let live" until you they drape their web along my pathway and then it's "spider  be gone". A little rain would be good to brighten n the gardens too, unfortunately my herbs died from the heat and it is too far into summer to plant more now.

     

    I have had a lot of phone calls  from friends and colleagues wondering if  and when I will be back to "normal". In other words when I will be resuming my usual duties in the church.  It is a kind of acknowledgement that I do a lot of small tasks no-one else takes responsibility for. Many organisations find the same problem when a key worker is sick or unavailable. We are all different with different skills and so are missed when the unexpected takes us off the job. As a witty friend said to me: " how can we miss you if you don't go away?" Therefore the test is what happens when you are away.

     

    I have had a lot of time to think about my life since the cancer diagnosis, and have come to the conclusion that the only way to spend my time is the way I have been doing it for many years, one day at a time. It is the way we all need to live. For me there is no other way as I don't know what lies ahead. It is the way I lived when I was Ray's caregiver and still seems the best way to live. Maybe one day I will start making plans again, who knows? For now I am relearning the value of simple things , sunshine, scenery, laughter, friendship, things I have sometimes taken for granted.

     

    Thanks to all who have posted kind thoughts and prayers on my Facebook page. It is good to have that back up  I know what struggles a lot of you have and yet you can still find time to think of me. Thank you, thank you, thank you.

     

     

     

  3. 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.....

     

  4. Haven't shared anything in a long time, but Bob got a nice surprise in the mail today, and I wanted to share it with everyone!

     

    Our niece works at the sports arena, and has sent her Uncle Bob a care package of his favorite basket ball team! There are a long poster of the players, 2 Blue Nation candy bars, and another hat to add to his beloved collection of UK hats! Look at his face! HE TOTALLY FLIPPED OUT!

    Image may contain: 1 person, smiling, hat

     

  5. 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.

     

     

  6. 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?

  7. cypher

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    SarahR
    Latest Entry

    Happy New Year to all.....may 2018 bring you happiness, much love and peace.   We closed out 2017 by sitting home and watching old movies, went to bed early, awakened at midnight with the sound of fireworks (and probably a few guns shots in the air).  Fell back to sleep and didn't get up till late Monday morning.   We drove to Scottsdale and met up with our old caregiver, Kelly, at the casino and had the brunch buffet......wasn't sure that was a good way to start the year, but Gary really was dying to go to a casino.   lol   Since we moved about 45 min. from where we used to live, it's not a weekly nor monthly thing to do any more.

     

    My youngest sister and her hubby were around the end of November and most of December, before moving on with their RV to Tucson.   We spent Thanksgiving with them at our middle son's home in the Phoenix area, and they came here for Christmas Day dinner.   We drove over to the RV park where they were staying in San Tan Valley and saw their new motor home and had a bbq with them one day, and another day I took them out to a local biker restaurant (The Gallopin Goose) for their anniversary.   We also met up one night at the Tumbleweed in Eloy, where our good friend CC Collier was entertaining, and his wife Pat got Gary out on the dance floor in his wheelchair.    He really enjoyed that evening, as he got to dance with Pat, my sister, me and even with his caregiver, Carmen.   He thought he was the life of the party that night.    lol   My brother-in-law did some repairs for us around the house and we enjoyed the time we were able to spend with them.  December went by really fast for us.

     

    Hoping everyone made it through the holidays okay and looking forward to a bright new year.

     

    Sarah 

     

  8. I need an echocardiogram, pelvic MRI, RFA Spinal, brain MRI again and I am feeling scared and overwhelmed. I will do it but I feel invaded. Alone. But my best friend lives states away and is my lifeline on my phone. 

     

    We grew up together since kindergarten. We know our histories. She is my sister. It helps to have her inspire me when I get down

     so many here are cruel. she wants me to live with her but she is the country mouse so we worry that I would miss my big teaching hospital care. so.....

     

     Pain team suggests spinal implant stimulation. I need a screening process first. I am scared but I hurt still on the meds. I wish I was normal.

     

    I do not blog because I am busy coloring. My hobby consumes me. I sleep all the time too. But I love you guys and hope this new year brings all the best for you.

     

    I am self absorbed now sometimes but I appreciate my best friend and my Son who love me back to life. I live on the border of life now so I am in a different place.  I am useless but try and love those around me now here in this institution of suffering and healing. I am grateful to see 2018 but it is a foreign place I was not prepared to land in. I will do my best to do all I am required with help of grace.

     

    Best hugs to all.

  9. 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........

  10. 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

  11. 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!!!

     

  12. So my father and I went to Philadelphia to visit my Neuro Ophthalmologist  this afternoon . I always have a great time when I have my ‘Daddy/Daughter’ day trips. Most have been to doctor appointment but always a good time. So. I see a doctor who, in my opinion, is the greatest eye doctor ( But I’m Bias lol) and after going through a barrage of testing my vision  we determined that NO prisim will ever correct my sight for I have Nystagmus ( eye bouncing) that basically makes seeing a single object and clear. My eyes have perfect vision on their own but using both eyes… NO DICE.. Imagine one half of your sight moves up and down all the time. And to close my right eye and only look out of my left, which had Nystagmus but not as bad as right, strains my left eye so reading is very difficult.  Not ony that but comprehension is difficult  but every page is a new page each time I read it.

      So the doctor had three possibilities that I could do so see bette because using a patch is something I could do but I need a prescription  for distance. One was using contacts that would give me the strength to see distance but on the right it would basically black out my vision by covering my iris. Contacts freak me out as it so that was a big time no go. Second was botox. Hearing what botox could do to stop my bouncing sounded so good but the down side was it freezes your eye and It may not rest straight so it would be frozen looking off to the side,with no movement, but my left eye could still move.. NO

    Third was using a strong prescription strength on my right eye that basically won’t allow sight from it so I’m lookin out of my left eye only. I’ll also get a pair of reading glasses ( same lens to block sight and no prescription on my left) for I close my eye on the right to read fo that isn’t a problem. So I’m going to get that lens soon and give me time so get adjusted to them.

    But the best news that just made my day: I will be starting Medicare in 2018 and was told no vision, and I was so upset for I waited so long to find the doctor of my dreams. WELL… my issue is Medical so COVERED.. I almost walked out after hearing that for I was happy. I told my father that hearing that was  my Christmas gift. .

  13. 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!  :@#*%:

  14. 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.

  15. 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

  16. Strokewife
    Latest Entry

    Memory-
    All alone in the moonlight…I can smile happy your days (I can dream of the old days)…Life was beautiful then…I remember the time I knew what happiness was…Let the memory live again…

     

    While I found myself sluggishly gazing at a moonbeam shining itself through the window late one night not so long ago I softly sang a few bars from the song Memory.  This song is from the 1981 Andrew Lloyd Webber musical Cats. Grizabella, a character in Cats sings the song.  She is a very old, disheveled cat who in this song harks back to her days as a glamorous dancer and declares her wishes to start a new life.

     

    Suddenly, my mind drifted in thought about my stroke survivor who was lying not so quietly asleep next to me.  It has been over two years since his first stroke.  He had a second stroke almost exactly one year prior to the first one.  In those two and a half years my husband seems to have settled.  What I mean by this is he isn’t so eager to work on recovery. It seems he is more just about existing. We still go to therapy but not as often.  He takes himself to the bathroom daily but not always without assistance.  Dressing himself has not improved.  Preparing lunch by him does not happen. Basically, working the remote for the TV is his greatest skill post stroke.  Certainly, I hope I do not sound trite or disgruntled. I very much continue to encourage my husband with every flip of the coin.  Thus, the point of this thought regarding a song called Memory is about that very thing-his memory. 

     

    My Stroke Survivor still has a large collection of vinyl record albums along with the stereo equipment to play them.  However, none of this stuff was connected or working with our more modern day equipment.  This was a hat I chose not to wear.  So, one day after hearing him moan about how badly he would like to play his records I called a good friend of his who shared the same sentiments and ask if he could get the turn table working.  Again, I must stress this was not an easy task to accomplish but the end result was successful.  Of course, I found myself even more appreciative of modern technology and a thing called Amazon Prime.  I love that I can download songs to my phone and play them with the press of a button.  Anyway, now there are many days that I am requested to find an album and place it on his turntable. Greatest hits from the Eagles, Bread, Boston, Chicago, and Bee Gees are to name but a few. Did I mention he can’t pull the albums out from their cover and place them on the turntable himself? Thus, I have been getting a good deep knee bend work out.  Anyway, after listening to an album each time he reflects upon a story back in the day when he was a DJ.  He tells the tale with great enthusiasm and passion.  The light glistens in his eyes as he expresses his secret on how he had the dance floor packed each night he worked the booth.  Somehow as my Stroke Survivor reminisced it registered with me just how much he has music playing all the time.  Often he will turn the TV to the music channels to play continuous music rather than watch a movie or show. When we go outside to sit and enjoy nature he will turn his phone to play music.  And now that we have a 1980’s stereo working he has the radio, DVD or album playing. Suddenly, I became very aware that he like his record on the turntable is rotating in a world from his past.

     

    Therefore, as I pondered the thought about my husband I recognized that he has somewhat moved himself, since the stroke, chronologically through time starting back when he was a young boy.  Currently, he is reflecting on the eighties.  On the other side he doesn’t seem to recall much of the more current years.  I said many months after his first stroke that I had learned so much about my husband. He talked about things I had not heard about like his GI Joe collection he sold for a great deal of money, his fort in the basement where he hid from things that scared him, and a tree house outside where no girls where allowed.  As he moved through his years I started feeling like there was so much about him that I didn’t know. I believe he is stuck in the eighties because it was a very happy time of his life.  Oh we still go back to his childhood days when he was just like Karate Kid but more times than not we come back to his DJ days.  Sometimes I am sad when I talk about a memory that involves the two of us like the day he proposed to me and he doesn’t seem to recall.  So, I do find this memory thing an interesting concept my fans and wonder if there are others along with me that are living in their yesterdays?

     

    Memory-
    I must wait for the sunrise…I must think of a new life…And I mustn't give in…When the dawn comes…Tonight will be a memory too…And a new day will begin

     

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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.

  17. 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.

  18. 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

     

  19. 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!

  20. It's been a while since I've written a blog and been really active on the site. First of all I miss those of you I know here but I have been sort of recovering and regrouping after leaving Adrian and moving back into my Dad's house. There has been a lot of positive...my anxiety has been less, I have my own transportation, I am still waiting for the second round of disability decisions, I am close to family, my daughter is doing wonderful and is so good to me sending me $50 every other week to help me, I've been making my own choices, I even have my sleep so much better now getting to bed between 8:30 and 10. So many good things. Something has happened though 4 different times which I need to get off my chest. My Dad and I get along most of the time but he is a huge trigger at times and can evoke a pretty big anxiety attack in me at times. Once because he told me not to put my hair up in a pony tail anymore that my step mom had cut my hair and "the pony tail looked like *beep*". It was an immediate trigger and I couldn't stop the attack. I finally got to my room took my anxiety medication and finally fell asleep. A second time was him telling me "If that guy called right now I bet you would go back to him because you are stupid.". He wouldn't stop even when I begged him. I ended up half blindly driving to where my step mom is staying at my Grandmother's so I could calm down. Both of the other 2 times have been about my weight. I have gained 50 pounds since my stroke. I joined a gym a week ago so I can be healthier which hopefully will help my weight as well. He has called me fat, told me I don't care about how I look, told me he wouldn't leave me alone, to go ahead and cry until I can't cry anymore because he doesn't care, more times that I am stupid. I can't stay at the house when he gets like that because he won't stop and the anxiety attack just gets worse and worse. Each time I have gone to my Grandmother's...each time right in the middle of a pretty severe anxiety attack. It's wearing on me. I find myself just silent and to myself more and more. My Psychiatrist is concerned...he made the statement "You fell from the frying pan onto the stove.". He shows more compassion and care than any Doctor I have ever had and we talk about what my future plans are and he encourages me. I just needed to get this off my chest. My hope is that in the future I will live by myself and make all my choices and be free of the hot spots. It won't be perfect but I think I would feel so much better.

  21. 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

     

     

     

  22. Some people may be offended by this..... But today I come to the nursing home to see Dan. Who has refused to shower for almost 2 weeks now. He is fighting over the time of his shower. Somewhere, somehow, he has decided the time to be showered is 12 o'clock noon..... It has never been scheduled for that time. Whats wrong with that time ? Well plenty all the staff are busy and Dan will take himself to the shower room and load himself into the shower... Hooray independence - NOT... Its dangerous , no one is there at that time. Normally as I always have in the past I fight the battle and make it happen. But Im tired of the fight. It is a simple control mechanism . And he has no regard . For anyone in his pursuit. So Im not fighting it. Ive put my foot down and told him no more. Follow the flipping rules. Well 2 weeks out he is still refusing to shower at his time. 

    Tonight after my day at work I bring him supper- Crappy Mc Donalds again.... YUCK. anyhow, the home had turkey supper looked ok . So I figured Ill eat the darn turkey, he can eat the dog crap - Mc Donalds---. So an aid brought in the tray. set it down and Dan told her to leave. OK.... then he tells me he needs to go to the BR for a BM.... Are you kidding me. He laid there waiting for me, to come so I could take him to the Bathroom. Is that an honor? A novice caretaker might think so.... To me it is a degrading insult.... I worked and took care of him at home for years. Only to be driven to depression by his OCD behavior.. Now Im his aid still... Nope -- I left... Now the home is calling , what do we do?  I don't know?? If I knew he would still be at home with me... This man, this stinky- controlling man- I don't even know who he is. Damn - it never ends. 

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