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  1. Sunday is my favorite day. It is my own spiritual  awakening day with super soul Sunday. I love waking up late on Sunday morning & start my day with nice cup of coffee first with political shows & then enjoy my super soul sunday on oprah's OWN channel to cleanse myself of all dirtiness of politics lol. As you all know I  take whatever I like from all religions & believe all paths lead to one Supreme God.  I am not religious person though I am spiritual person.  According to our Hindu scripture our Karma creates our destiny, that was very hard pill to swallow for me after my stroke thinking why me & feel ing very helpless that it was in my destiny to go through this hardship in life. I found comfort in Christian beliefs that Suffering in life wakes you up & makes you the person you were meant to be. While going through Suffering asking What this trouble is trying to teach me in life. How you are going  to react  to this situation made me feel much better and most of it in control of my life when I was feeling so out of control & helpless. How would you react to your situation was most powerful tool for me to snap out of my why me  thinking.

     

    Asha

  2. SassyBetsy
    Latest Entry

    I wonder if I am the only one who had to go into a nursing home and if I will ever get to live a normal life again. That is why I push and do not accept it when they say oh here is a cane now practice therapy at home. I need to get out of here and have my therapy days. This past therapy the PT said if I do these 3 exercises everyday I will improve. I was not impressed that some squats and headturns is enough. He hurried me along recommending a cane but I know I am even unsteady with my 3 wheeler. I put a backpack on it and that goober went on about how I use it as a cart.

    After 7 weekly sessions he basically said goodbye goodluck. Of all the therapists he spent the most time talking. And the topic was how great I walk and that I do not need therapy. And he basically scolded me for being there as if I was taking time from another needy client. Plus all his atta boy's about all his years of experience knowing all about it. He said he did not see my eyes problems.

    So I went to my next primary doc appt. asked about my progress. I said so is this the answer that there is nothing else but walk around and do knee bends? I know pain interrupts my plans to move around at all. I want a coaching program I admit and therapy nowadays is show and tell with some handouts off the internet. But is this all there is?

    The doc hurriedly gave me a referral for more therapy saying few words. But I already know. I have a wonderful neurologist for the past 2 years already who put me in therapy over and over. He said some things will be forever but probably with improvement. 

    It does not get any more vague than that. So I alternate between hopeful to some downhearted acceptance I feel boxed in to embrace while I do a homestudy course. And I do not want miss the really fun important work I only get to do in the lab. I mean gym. Standing on a rolled up towel does not make me feel the same as standing on a foam thing. I will need some supplies if I am to do it at home. 

    There is no one to play balloon badmitten with and no balance board. Not even an obstacle course. How do I replicate? And no one to keep me from falling into despair that I will not improve more or inspire or hold me accountable.

    When I mention that just getting to the appointments is therapy itself as I am getting out of my limited space.

    I guess therapy does not last forever. Why? Is not there more? A next level? 

    They suggested a community college adapted P E course. But They took my license plus I cannot travel alone for safety reasons and I cannot walk far. And they say driving a motorized is not safe. And pain comes. Then the reasons I cannot live alone like stay away from stoves with my numb hand that works.

    I am Oliver here expecting more.

    Because I have improved. somewhat. I used to be worse. 

    My roommate gets therapy here. They come move her around a bit. She cries she is not improving. I think the longer she is in bed......

    I do not want that to be me.

    I want a program. 

    Oh wait. I forget. The pain makes it impossible to get off this mega dose meds that make it possible to get up and not  be in pain. Sometimes the meds help. some days not so the RFA is what they insisted would be good to try. It wears off and then it is apparent my nerve bundles did not reset off their course of always interprting every sensation as pain. Life. It has shrunk to pain management every moment.

    But I want to run. I practice some steps that look like simple dance. open my arms. I feel dizzy sick. I cannot go sideways well. I keep my body stiff.my eyes down. The closer I am to the floor I am happiest.

    My neuro said my cog is good but The Meds make lots of problems. I dream what if I could stop them but then it hurts so bad I cannot even space out doses.

    I Never read about someone like me. I try and look. Am I the only one who lost home and lives in a nursing home?  

     

  3. So as many of you know, I have trouble with my eyes. Double vision, bouncing eyes and just all around strain and difficulty reading. So after 8 years of searching for help regarding them.. it finally happened yesterday. My parents and I went to Philadelphia to University of Pennsylvania Hospital and met an angel. I was referred to a surgeon from my neuro ophthalmologist and I must admit when I first went there, we were late from morning AM traffic. We left EARLY had to drive 2 hours to get there..... OK so we MAY have stopped for breakfast. haha. So the doctor usually deals with children at CHOP ( Children's Hospital of Pennsylvania)  but he deals with adults, and he begins jumping head first with me. He was amazed with my eyes for the both bounce differently and different directions.  I explained to him I've tried visual therapy for years and he said," That will never do anything for your eyes'". I immediately thought how much money I could have saved over 8 years but we agreed that some helped with strengthening certain muscles that brought my eyes closer together. So after what seemed like an eternity of using prisms to measure my eyesight, I was certain he was going to tell me that there isn't much he can do but he didn't. He explained a few options.. cut this and loosen my eye and sew this and he had to consult others for a certain plan because my eyes are so unusual.  So basically,  he is able to straighten my eye and trim one muscle to lower the opposite eye so they are even and then there is a possibility to lessen the bouncing with ,the process has to be discussed with other specialist.  U of Penn hospital has a computer/skype process that they consult with specialist around the country before ANY procedure.

     

    But to have my eyes straight again, there is a possibility that whenever I look to the sides, I may have double vision.. I'll take it and less bouncing. . WHAT.. this is a dream. My mother actually started crying listening to the doctor tell me the possibilities.  I have to admit that I felt vindicated because finally someone other than me heard about the issues I have with my eyes. I mean, when I tell someone I can't go out because I am having a hard day, now after hearing the doctor talk about what each eye is doing was more exciting than the news. It's the simple things. The doctor only operates on Adults on the third Thursday of the month and April, he's gone but he is going to ask if he can get a day for me for this is going to be an intense surgery . I'll be asleep so I won't know.  The only thing he said I'll have after is red eyes, in he whites, for a while as it heals and some people return to work within a few days and I'll be able to tell a difference immediately,  Fingers crossed 

  4. HostSue
    Latest Entry

    It's raining.  It has been raining for about ten days now.  I know this has to happen if we are to live in a beautiful green world but day after day of rain makes me blue. It isn't cold rain, as we are on the end of what has been a hot summer we still have a lot of humidity so it is gray, rainy and warm and humid at the same time so I don't have a lot of energy for clearing up the inside of the house and am short on time when it is not raining to do the garden tidy up I need to do. There are so many wet,decaying leaves lying on the driveways and footpaths that taking a walk is a bit of a hazard too so I am spending far too much time inside.  I have already cleaned out some of my messier drawers so I guess doing a general tidy up inside is what I need to do.  I find that boring when I look out and would much rather be outside in the garden.

    Rain blights my social life too, on Tuesday I went to a morning tea and for the first hour was the only person there as it  is outside in a nice spot but not a lot of protection from the weather.  Normally at this time of the year we would be basking in the last of the warm days and enjoying the autumn tones. I depend on my groups that I belong to for my social life now. My kids keep in contact but not as often as I would like them to and I dropped out of a lot of couples' worlds when I became a widow, that just seems to be the way life works. I could join a lot more organisations and do more charity work but I am trying to balance life out more.  I love what I do in the church and my Lions Club but I know I spend too much time with the sick and old in our community and I really need some activities that are positive and make me feel good now. Because of the rain I have not seen my usual "widow buddies" at the shops as they are not coming out because of the rain so that is isolating too.

    I know when winter comes I will spend more time alone.  I managed okay last winter as we had a lot of dry and sunny days and I was going out with my man friend once a week, since that ended I have felt lonelier I suppose and as usual my peer group are packing their caravans and RVs and travelling north following the sun. I do have a lot of people I can sit with and chat and have coffee with when I see them but they are not the kind of people who are going to phone me or drop by and stay for a while so I have to go out to see them.  We live in a place where that is the lifestyle.  So a day at home means I see no-one.  It might soon be time for me to find a retirement community I think I would be comfortable in, so I have people around me again.  I miss Ray,  I miss the life we had before and after the first stroke.  I don't miss what happened in the last couple of years of his life, those were the hard years for both of us.  Now I have freedom but it comes with loneliness and a kind of disconnect that was quite unexpected.

    I need to go out and get a pile of books and a basket full of old movies so I can relax and enjoy what is ahead for me.  Not that any of us know what is ahead, who would have thought I would go to Hawaii for instance?  My phone and computer had problems from January on but now I have a new provider and a quicker service and hopefully things will be easier.  I will be on the board more again and once I have a handle on this new system should be back as Blog Moderator etc.  How about updating your blog for me so I have something to comment on? I managed to update my own computer system with the help of a Support Person so am proud of myself for doing that.  When I had sons close by they would have done it for me but now they are all too far away to help me out.  I know I have to be independent but it is a struggle sometimes as it is for all of us who live alone whatever the circumstances. It is hard to be alone in so many ways. I still find it hard to watch couples walking hand in hand and someone at my table asking their spouse would they like coffee and going off and getting it for them.

    My old house needs a lot of maintenance to keep it going and I have found another handyman who will do some of the smaller jobs for me, replacing light switches,rehanging cupboard doors that need adjusting that kind of thing, then I need a tradesman to do the bigger jobs. I know it is likely the person who buys this house when I sell will have it bulldozed as the land, one street over from the beach and protected by the shape of the hill behind from the worst of the winds is valuable in itself so the house will either be renovated or removed and a new house built.  I have been happy to stay on here but it needs a lot of repairing and updating and do I want to do that or move?  I just don't know.  The handyman did say it is a sixties house which it is, maybe I am still a sixties person at heart? All the time I feel comfortable here I will stay here.

    I know people must be sick of me saying I need to make some changes and then doing nothing about it.  The truth is since Ray died I have never really known what I want my life to be like.  I wanted to be one of those old ladies who shared her life with her old husband till they were both in their eighties or nineties, I never envisioned myself as a widow. I do speak to other widows about this and they tell me what they are doing.  Some are spending their lives travelling or cruising or catching up with overseas friends, well I at least did that didn't I?  Now I don't know what to do next.  Going with the flow and seeing what life brings works for me in a way but it is too much like the decisions I don't make could be the ones I should make.  I'm wondering if I should get some more counselling to crystallize some sort of vision for the future now.

  5. In the house that I live just of center of the front door there stands a hat rack.  It sits there for the simple task of holding hats. There are many head coverings that adorn this rack. Each hat is unique yet some can be considered extraordinary.   It is this bonnet holder that sits in the shadows that helps this caregiver share her thoughts.

    As long as I can remember my husband has collected hats.  Each time we traveled, attended a concert, or went to an estate sale we often would come home with a new hat to add to the hat rack.  There is a sombrero, a hard hat, stocking caps, and cowboy hats to name a few.  There is even a lid that looks like a pink flamingo, a turkey, and a wolf.  Baseball caps too many to mention, Top hats and fedoras in black, gray and tan hue all make their mark. Mickey Mouse Ears, Bunny Ears and an Indian chief’s headdress also are there too. Certainly, these toppers have graced my stroke survivor’s head many times and each time he has a story to tell.

    On this particular morning I passed by the hat rack like I do every day.  After letting out the dog for his early morning ritual I stopped for a moment and just looked at the mound of hats.  Each represented a moment, a memory, and an emotion.  I remembered on how my father also wore hats for every different occasion.  He had a hat for drinking coffee during his morning reflection.  There was a hat for his Coca-Cola break after mowing the lawn. Of course there was a hat for winter snow shoveling and another for summer fishing trips.  I actually had not recalled how my father had so many hats until this moment on this very normal day gazing at the hat rack that stands a few feet away from my front door.

    What flurried through my head while gazing on all these hats actually was the plethora of hats I, myself wear in any given day?  They are not real but more so imaginary hats that shout out each task I do. These bonnets that adorn my head are representation of the task I must do each day as a caregiver. While I have slowly come to a level of acceptance over the past two years regarding the full time demands thrust upon me when my husband had his first stroke I still have moments of frustration.  Things like aiding him with hygiene, both good and bad, cooking his meals, and assisting him in dressing for the start of the day are but a few.  I assist him with therapy, I do laundry, grocery shopping, and bill paying.  I plan outings, email his friends, and communicate with his family.  The lawn, cars, and musical stuff all need my attention.  I take out the trash, coordinate his medical appointments, and maintain his pharmaceuticals. I even program the TV for him with his favorite shows.  Simply, I think there are two many hats for my hat rack.

    Never do I enter the day thinking I have too much to do, or how am I going to do this?  More so, I just start my day with the idea that it is this day…the only day.  With that I let the dog out and I once again walk by the hat rack.  I enter the day gracefully, thankful, and humbled that this is the best day of my life. Once I let the dog in I move to the kitchen and make breakfast.  And so on. Each task I put on a new hat…

    Given, there are a lot of hats I must wear to assist a stroke survivor along the day.  No one said it would be easy.  I can vouch that it is not easy.  Yet, there are extraordinary hats along with the mundane on my hat rack. Today, I choose to wear one, than adorn another and another all with the goal of encouragement for my stroke survivor. That he will have the best day of his life.  If that happens…then I feel content.  Maybe that is when I put on the hat my dad use to wear when taking a Coca-Cola break.  Inevitably, I guess the hat I wear really doesn’t matter…Thus, the point of my story.  Which is…basically, I am a caregiver, a woman, and a wife to a stroke survivor.  Our day is blessed and for that I am thankful.


     

  6. It has been a week since my daughter moved out of our house and into her own apartment. I never knew it would be so difficult LOL.

    First she was having a lot of anxiety about packing and I helped her but she avoided this right until the last moment. This meant spending a long night up really late packing boxes that could have been done much earlier but we did it. It then meant the next morning we woke early and she went and got her keys and officially signed the lease and actually found out where she was and if it was 1st or 2nd floor. <- This was important because my step dad was coming to help and a lot of stairs would have been really hard not to mention I am a snail going up or down stairs and can't repeat over and over.

    After loading up my step dad's truck, my car, and Hailey's boyfriend's car they took the first load to her new apartment. I stayed behind and worked on getting boxes to my livingroom so they could easily get to them. One more trip and we had everything! I went up the steps and by this time I had to just stay there while they unloaded. After this I took my daughter to buy her some groceries and some essentials she would need. We were both exhausted and at one point she just cried a little and said I just want to go home.

    We walked into the new apt. and there was her boyfriend unpacking and putting things away! I was so surprised and thankful that he was so considerate and helped her. It was surreal driving back home knowing that my baby was not coming with me.

    The first week has been quieter than I can ever remember. After a couple of good days of rest I began to move things into the spare room. We have a little house and al the things I didn't have space for just ended up behind a rocking chair or lining the walls. It was like I had so much more breathing room. I am still working on moving things but the difference has been phenominal. 

    I waited a few days before I called her to let her get settled in. We spoke for the first time amicably in a long while. I told my mom it was really nice and now we can make plans and have lunch or do things together occasionally. I miss her though...I really miss her. I do already feel less stressed. It was time and a huge stepping stone in both our lives. I'm proud of her and she has surprised me with important decisions. This helps me feel better about setting her free in this big world. I pray that she soars!

  7. Monday (March 6) was the 20th anniversary of my brainstem cerebral hemorrhage. It is sometimes hard to believe it was 20 years ago. I am 66, so it is a significant part of my life. I have come a really long ways since 1997.

    Like many, there were no stroke risk factors in my history. The doctors did some testing, but finally declared the reason for the hemorrhage was not known. That was reassuring and scary at the same time. It is my understanding that if you have a brainstem stroke the chances of dying within a month are 90%. Needless to same I am very glad I beat the odds.

    I am sure I beat the odds partly because I am a very stubborn person! I also was willing to put in the many hours of therapy. Over the years I have also done a fair amount of research and tried various alternatives to promote healing. There is no panacea, but almost anything has helped.

    When I saw my doctor at the end of February she suggested therapy because I have problems with falling. When I first had my stroke I had no balance. It has increased, but I walk with a rollator. I sometimes walk inside my house (where everyone including the cat knows not to run into me, walk under  my feet, etc.) But, I use the rollator 99% of the time.

    For the first time in 19 years I am back in therapy. I have completed four of ten sessions. Mostly the therapist is out to strengthen my legs and hips. I am still tired from my last session 24 hours ago! She had me walking on a treadmill yesterday. I did not think I would ever get on a treadmill again, not sure if my feet could keep up. It went very slow and I had a therapy belt around me so the therapist (who was also within arm’s reach of the off button) could help. It went ok.

    The house next door to us in sold after being on the market for two weeks. My sister saw Dan the old owner this morning at Costco. I read the average in the Chicago market right now is 84 days. So they were very lucky. They did have house totally repainted and new carpeting laid. So it is ready to move into. He said the family has four kids. It is not that big of a house! Last Saturday a gentleman knocked on our door saying he was talking to the neighbors because they were considering making an offer on the house next door. He wanted to know about flooding. I explained that because it has been wetter than usual the last few years the water table has risen. The only time we had a flood was when our sump pump died. We now have a backup sump pump that (so they say) sounds an alarm when it goes on. It has not turned itself on in four years.

    Another house on our block sold after being on the market for months. They have had lots of repair trucks and a garbage bin in the driveway for over a month. The people living there before were an older couple, who lived there when we moved in in 1999. I suspect it had been a while since improvements were made. There are people on our block who have lived her 30+ years.

    We had part of our privacy (one wall) replaced this week. A section had blown down. They now make privacy fences with metal posts covered in wood. That way they do not rot. A few years ago our neighbors on that side (not the house which just sold) had a party and people were leaning against our fence. Not a good thing. I wish these folk would move!

    Next Friday is St Patrick’s Day. My sister insists we have corn beef and cabbage. As far as I know we have no Irish ancestry. I did suggest that we wait until next week to actually buy the corn beef. Friday is our usual grocery shopping day.

    I talked with an old friend this week. When we lived in the same city we always went out for lunch on International Women’s Day. I thought that was a good excuse to call her. She was living with her sister-in-law and niece, but both died last year. So it is a sad time for her. She was in Concord NH. She has now moved to Portland, Maine where both of her children live.

    We have eaten most of our Girl Scout cookies. I know you can now buy and have them sent to servicemen overseas. But, they are a tradition and even though I would not eat them often if they were always available, they are a nice treat.

    We are having strange weather. We have not had an accumulating snow since Dec 17 which is very odd. We had had a few days with flakes, including yesterday. Temps have been from 20 – 70 in the last month. The daffodils are up. Hopefully it will not get too cold for them. But, daffodils are hardy and they are closed to the house.

    Hope all is going well with you. Spring in almost here (in the northern hemisphere!)

  8. It's been a while since I've blogged, so thought it was time to get caught up here.   I've been sick off and on since returning home from the trip to meet Sue.   Though the trip was nice and it was great to finally meet up in person, I think being away so long (6 days total), and the change of food, water and sleeping patterns messed me up inside.   It took me a couple of weeks to feel somewhat back to normal again, and then Gary got sick.    He has been going gradually downhill since the loss of our youngest son last summer. 

    Gary's swallowing issues seem to be getting worse lately.   I think it has more to do with his not caring enough to concentrate on what he's doing when eating, more depression and less cognition.   Several years after his brainstem stroke, we had a physician prescribe a patch that we put behind his ear to help reduce the amount of saliva since he couldn't remember to swallow often and was constantly drooling (Transderm Scop).    He wore those patches for nearly six months, and eventually began to remember to swallow more often, or had to be reminded to swallow less often.    I hadn't thought about them in years until the night before last when he was having so much trouble with choking and hacking up tons of saliva.   It all started around dinner time and him not paying attention when eating.   He was getting stubborn when I'd remind him to keep his chin down while chewing and swallowing, and it seemed the more agitated he became with my nagging, the less he cooperated.    By the time he went to bed that night, he had probably aspirated enough food to fill a lung, and he began trying to cough one up.  I wanted him to sleep in the recliner, but he was refusing.   I tried to explain to him that it would be easier to breathe if he wasn't laying flat, but he didn't care.     I was so frustrated, I wanted to call an ambulance and have him go to the ER in the hopes they could help him, and maybe he would listen to someone other than me.    He refused!!   I replaced towels under his head a half dozen times during the night as they filled up with slobber and mucus,  I rubbed his chest down with Vicks, and kept the humidifier and the air purifier running in the bedroom.    It wasn't until around 4 a.m. I remembered I had seen one of those patches in a medicine cabinet, and decided to try it to help reduce the amount of saliva he was choking on.   I actually found about a half dozen of them left over from nearly ten years ago when he was using them regularly.   I know you're supposed to toss out prescriptions after a certain amount of time, but this was a patch and I had nothing to lose at this point.    I put one behind his right ear, and sure enough within a few hours, he was breathing easier, choking less and finally sleeping after having kept me up most of the night with his coughing, choking and gurgling. 

    Gary ended up sleeping in until around noon yesterday after finally breathing a bit easier, and I managed to get the rest of our taxes together to meet with the tax man when he came around 11 a.m. in the morning.   I did try to nap in the afternoon when he went down for his nap, but got only an hour before the neighbor's son came roaring up in his Harley and woke me.  I did, however, manage to get a good five hours of sleep last night, so should be caught up on my rest.    I put another patch behind Gary's ear last night to make sure he could sleep without a lot of choking and gurgling and it worked.   I have a few more left, and made a note to contact his Dr. to see if we can get a new prescription for more before I run out of them.    The only side affect noted for using them is drowsiness, and in his case that would be a good thing.  

    Sarah

     

     

    SarahSuehonolulu2017.JPG

  9. I'm so happy to report my wife is better walking, sleeping, and being herself again.... God is good all the time!!!!! So all I can think of is take her to some place she loves and enjoys being there..... She even got up this morning and went to early morning Glory service at church driving herself in my car of course........

     

    That place will be the Casino since they have already sent me an email for two free nights at the Hotel...... :D She was cleared by her doctor this week and all the gear she was using was turned in so she can wear regular clothes and shoes again and return to work full time.... God Is Good All The Time!!!!

     

    I send my Thanks for All Your Prayers and Best Wishes they were all good, thank you all!!!!!

     

    Thank You, Thank You....... :D

  10. ksmith
    Latest Entry

    Well tomorrow is the day that I only consume liquid. I have Tuesday I have a surgery that will change my life for the better. Then why am I scared? I’ll tell you:

     

    I explained it to my mother that I feel like a drug addict that is facing life after rehab. The fear of the unknown. It is a common fear with this according to other candidates for the surgery. So I’m not crazy? I often say to myself; ‘I love my pizza and pasta and goodies’, and then I feel trepidation with my decision. Crazy right? Well no. The same fear I’m feeling is the same after my stroke. ‘I love riding my bike and walking in heels’ was what I would often say and still to this day I feel less of a woman for heels, well in my mind, made a woman sexy…attractive to men. That kind of feeling is the same that I first thought about myself after my stroke I mean who would ever want me? I was married at the time and we were mainly best friends, to no fault of his, for I forgot the first nine years of our marriage. Sure, we could have rebuilt it but before the stroke there were problems in our marriage. Despite that, he stood my myside for five years after the stroke and he is still one of my best friends. In that time I was able to relearn many daily functions of life but I still don’t feel attractive enough to attract a man. (Not that I’m looking now)
    It’s thoughts like that and advice from people that made my decision to get back into shape. The surgery will allow that to happen. This is the last course of action I wanted to take but the invisible aspects of my stroke make that nearly impossible. But little by little I’m trying to correct my health by taking these steps.

     

    Now, I started this out by likening this surgery as a drug addict. Food was my drug. Comfort was my drug. It was also my antidepressant throughout my recovery from stroke. Now I have to adjust to the changes, which frankly aren’t that different from when I was workout I was doing before the stroke. Yes, my food size will GREATLY decrease. I was, before my stroke, riding my mountain bike twenty miles a day was nothing but, that also allowed me to eat almost anything. And I did.

     

    I’m stronger than this and I know that I can overcome this challenge for if I overcame my stroke to life again I got this too. Bring it on Tuesday!!

  11. So today was a surfing day. The one last month got called off because a whale carcass had washed up on a beach a bit close to where the event was scheduled, and the authoraties were being nutty about possible sharks. OK so the risk of a larger shark being in the area was increased but REALLY it had gone from minimal to minimal + a tiny bit. However the local papers were being stupid about it so they cancelled our day. Not because the risk was significant but because the publicity if something went wrong would have stopped it forever. When will people accept that sharks are a part of being in the sea and mostly they prefer to leave people alone?

     

    Today we were at a beach further down the coast. So I had a 2.5 hour drive there and back. And right now I'm stuffed! It was a magic day though. I had 2 times on the board, with 4 rides in each set. We had perfect weather for it. air temp about 28, with a light breeze, sunny but not too bright sand comfortably warm. water temp about 15.

     

    So 8 "surfs" a little walk on a beach and 5 hours in the car has exhausted me but I'm happy exhausted and I don't really care.

     

    For 5 of my 8 rides I was on my knees, for the others I was lying on my stomach. For someone like me I get on the board facing shore in knee deep water and then the crew carry/push me out to the break, then a pilot gets on the back and does the kicking/steering and the support crew form a funnel back to the beach and stand by in case they are needed. I got a serious amount of water up my nose on a few ocassions as we were backing out. And I fell off in the shallows twice at the end of a run, and had to be hauled back to my feet, but there's nothing like the joy of being in the sea, especially when I know that there are plenty of people about to not let me drown. The volunteers are amazing.

     

    The surf day is organised by the Disabled Surfers Association and anyone with any sort of disability is encouraged to come along and get wet. They have volunteers to help you with changing in and out of wetsuits and they have mermaid tail suits for people who can't walk or easily get in or out of a normal wetsuit. They have beach wheelchairs and portable hoists etc. For those of us who are more mobile the volunteers help you across the sand and even though I go without a carer it doesn't matter.

     

    The surf boards they use are ultra big soft learner boards about 3 meters long and not quite a meter wide.For people who need it they use water beanbags to prop them up. The surfers are all ages and so are the volunteers. They must have put at least 150 disabled people onto the water over the 5 hours that the session runs. and there would have to be about 20 volunteers for each surfer. So it's a huge exercise to run it. They do it 3-4 times each summer so hopefully I can do it again next month.
    I was supposed to be going out to a film with Mum and Dad tonight but once I got home I rang them and cancelled. Maybe I'm finally learning to pace myself a little. Don't count on it though

  12. Time flies...having fun or not. William is still not able to walk on his own. We do make it to the pool about 4 times a week. I have decreased our workout time to 30 minutes. We used to do an hour. That is about all that we do.
    Our day goes as follows:
    William gets up around 6 am and Wa Him to the recliner. He takes his morning meds and has something to drink. I get him back to bed and I get to the YMCA and start my morning routine. I usually do laps for 30 minutes and then take a water class. I do a yoga class or weights or a cardio machine. I usually have 3-4 hours at the gym.
    I make it home and get breakfast for William. I next take the dogs out for a walk. We usually get to the park and walk for an hour.
    Now it is noon or 1 pm. I take William to a different YMCA that has a therapeutic pool. We will get home in an hour or so. I usually buy a subway sandwich for William on the way home. He is usually hungry.
    By the time we reach home 30 minute drive...William is ready for a nap.
    I do the laundry and walk the dogs. The usual clean the house and cook and shop.
    I take William to the Ymcas monthly luncheon. I have stopped going out to eat since I have retired. I have more time to cook.
    I have my weekly ladies bible study and monthly luncheon with friends.
    I have not been taking William to church since he has gotten more confused. I watch church on Tv.
    I got rid of cable and have an indoor antennae that works well. William likes to watch Patton over and over again.
    We are used to our new routine.
    I enjoy my free time at the gym. I have not missed work. My day is filled up.

  13. My youngest daughter is moving into an apartment she sent me a text asked me if in my travels I could keep an eye out for the table for her cheap something like $20 I know what that means she wants me to hit the second hand stores to see if I can find a table for her and of course purchases it also with the 9 or 10 second hand stores in and around the area traveling by bus it would take me a solid two days to go to all of them get there and then wait for the next bus. if she made a similar request three and a half years ago I probably would have taken the afternoon off and drove around to each the to see if I could find something for her alas I travel by bus so that's really not an option I'd do anything for her but I don't have two days to spend running around on the off chance of finding a table that might work
    kids gotta love them.
    be blessed and be a blessing make a difference everyday
    Jay

  14. Its been a long time since I wrote. Life seemed to be just too busy to sit down and write thoughts and feelings. A lot has happened since I wrote last year. I just went back and read my last blog in March of 2015. A lot has happened and a lot has not changed. Raymonds condition has gotten worse in a way, but his life style is pretty much the same. We stopped acupuncture once it stopped working. His yearly therapy money ran out for a while and we got through the summer, which was hard in a way. He wanted to do things outside that his body couldn't do so I had to do them. He would be angry if things didn't get done, so I did them. I am not a man, but I did a lot of mans work. Until I couldn't and I hired a lawn service which is wonderful. We have five acres and the service takes care of our lawns, our trees, our gardens etc. The fee is not as unreasonable as Raymond thinks, but he doesn't like to spend money. But we now have a yard service. Many people have asked, why don't you move. Raymond loves all of his barns, shops etc. He has many buildings full of his "treasures" including three Corvairs which have been restored for the grandchildren. Even though they are just 8,10 and 12. All of the "things" that hang out in all of his buildings are his soul, so getting rid of anything or moving is out of the question. He cant have a normal life anymore, so I won't take his love of his treasures away from him.
    Because he has fallen so many times and because walking has become a huge problem we are in the process of getting him a power chair. It takes a long time to get one through medicare, but hopefully in another month he will be able to get around easier. I have to hold onto him at all times when he walks.
    One great thing that has happened to me is I can now "sleep". They found out that I have sleep apnea and I do sleep now with my Cpap machine. Best thing ever! Getting 6-8 hours of continual sleep is a miracle.
    Raymond still sleeps most of the time, other than when we have appointments, and I have given up on trying to get him to move more. My sister-in-law said something this morning that never occurred to me. Sleeping is an escape and I never thought of it that way. He still thinks either a doctor or a therapist will "Fix" him and I cant convince him otherwise, so I just let him think that. He thinks someday he will just be better. Is that common?
    Well that is pretty much it for me now. I hope this wasn't too long. I hope I can come back to you all and share. Hugs, Judy

  15. GeorgeLesley
    Latest Entry

    Well the MRI is done and all is well. The spot on the liver is harmless according to the dr. Just a broken blood vessel. So all the travel plans have been reset and modified. We are now leaving the day after the Super Bowl. Lesley has reset her driving lesson and rebooked the campground for us. It is sooooo nice to have her helping to do such details without me having to do it all. She is now more computer literate than I am in some areas. The trip had to be shortened to three weeks because Lesley has an aunt in California who turns 90 early in March. We will be back then so she can fly to the party for her aunt. The dogs and I will hold the fort here. Because of the shortened trip we will be only going to Huntsville, AL to see the NASA. Space Center there and then on to visit some friends in Louisiana. Not sure how we will come back to TN yet but we will find a way.

     

    Some good friends of ours are looking at leaving where they live in SC. The nest is now empty, both are retired and the house that has worked for them for many years no longer seems to fit. They are looking to maybe leave SC and move to TN or NC. Naturally we hope they willl wind up in our area but are trying to give them information without being to biased and talk them into something that will not work for them. They also want to get an RV and travel. Since we live in TN and also RV and love both, we want to make sure we just give them facts and not try to sway them just because we want them to come here.

     

    Lesley has booked a trip to see her mum in New Zealand in May. Mum will be 95 in Sept, still lives alone, no longer drives but is still active and bright.

     

    We have become stand in grandparents for a 11 year old girl and 9 year old boy. They are the children of a couple we know in MN. Lesley and the young girl talk nearly every day and spend an hour or so on skype knitting and sharing time together. I have also helped the young girl with her math homework. They are both being home schooled and she has a bit of trouble with math, which just happened to be something I was fairly good at many years ago. I will say that asking me to look back and help her with things I learned 48 years ago is a challenge! I just this week sent the boy a complete Erector set made in the 1950's. he is into Lego and has done most of them so it seemed good to give him s construction toy that is not limited to one model but can become whatever he wants. The girl just got a horse, so Lesley has been helping her buy bridles and such. She is also helping her make and sell knit and crocheted items online. Wow, neat!

     

    A few days ago a neighbor saw me working under the motorhome and came over and asked if he could help me. I said, "be careful what you wish for or I'll have you up on the roof soon". Soon he was in fact up on the roof since I no longer wish to get up there. I and Lesley much appreciated it. We do live in a very nice area. I tell Lesley people around here must take "nice pills" everyday. They are nice.

     

    Well time to go now, my tea cup is empty.

  16. Punch1021
    Latest Entry

    Hello all,

     

    It has been some time since I have done anything here. I told myself that I just need to post and stop thinking about it. I am happy to see another year. Holiday time was hard with my brother gone but I look forward to healing more this year. I have tried to keep myself busy so I just won't get bored and dwell on his death. I don't want to get into another seasonal depression. I want and choose to be happy. His death still hurts but I am still making peace with it.

     

    If all goes well I will finally get to go overseas in April. In fact this year should be a nice travel year for me. I like being to be go out and seeing different things,places. It helps me to cope with life.

     

    I also am on a plan to cut some of my doctors down and not add another once one has been cut. I see so many specialist like everyone else. I am young, but they are hard to keep to up with. I'm also tired of telling my story. I feel like writing it down and say here, this is my story and little about everything you need to do.

     

    I'm also looking forward to Spring. It hasn't snowed here thank goodness, but it's cold. I hate the cold because the CPS really starts acting up on my left side.

     

    I hope everyone is well and hopefully I will not be a stranger again. This place has helped me a lot the past to two yeas after my strokes.

  17. I will attempt to catch people up on what's been happening on our end. I had been having a really good roll on organizing last fall, until I got extremely sick on Sept 29, and stayed that way for 6 weeks. My progress stopped, and I was only able to do the minimum for Bob, and crash again.

     

    I sat in front of my computer, wondering how I was going to be able to buy the groceries.. I could barely function! Then I saw this add on the side of the page about Walmart having grocery pickup now. ? I discovered that I could go online at my local site for Walmart and order groceries, drive over there to a side door, and they'd hall them out and sling them into my car, and I'd sign their phone thing and leave! Now I don't know if YOUR Walmart is doing it yet, but in some areas, different grocery stores are doing it, so call around. This saved me so much time and energy, it literaly made it possible for me to go on!

     

    At 6 weeks I went to the doctor, with no symptoms, except I felt like I was dying, and we talked about the ins and outs of it, and decided to try anti-biotics. Within a few hours, I began to feel them working! They did get rid of whatever bug was hiding inside me, and around the beginning of Dec, I was able to get the living room ready for Christmas. I got the tree up and all the decorations & pictures changed. I was thinking that I could STILL accomplish a lot of the organizing of the mess going on here before son & wife came for Christmas visit. Then the call came that stopped all my progress again. Rather than give a blow by blow description of it all, I will share this facebook post I made that summed it up nicely, after it was over:

     

    Let it be known, that as of 4pm, Tues, Dec 27, Sanderella washed the last cinders of fire smoke from her person, and threw in the towel on the burned lockers. I got the call about the locker fire (two 10 x 30 units, Dec 14, and worked Wed, Thurs Fri, Sat & Sun alone, pulling away burnt frozen boxes off the contents(wet from fire hose) and re-boxing into fresh boxes, what weren't burned to a crisp or melted. On Monday, son & wife arrived for Christmas(ha, ha) and worked like robots Mon, Tues, Wed, & Thurs, while I worked at old lady speed, sometimes reaching regular human speed. I can not believe the energy they had in moving and organizing things into the new locker. They went home early Friday and Bob's friend Fred (thanks again, Fred) helped me move more on Fri 23 and Mon 26, taking Sat & Sun off for the holidays, and collapse recovery(!) So, as I said, Fred & I were there yesterday, and today I went back alone for 2 more hours of sorting thru the things being left, and, after 13 days of being covered with suet from charred, wet boxes/things, it is finally a DONE DEAL - no more trips needed at the burnt out location - PRAISE GOD!!

     

    ~~~end of quote~~~~

     

    It's funny that I had bought the locker on Dec 2, thinking to try to move the 2 10x30 unit contents into, so much closer to home, where I'd actuallly be able to pick up a box and work on it. I now realize that it was complete insanity to think that I could have EVER gotten it moved, and what seemed like the worst possible time to happen (Christmas) was actually the only time that I would have had their help. It was a wonderful blessing and a sad loss - not the lockers... but that we don't get to see them but usually once a year, and while us 3 were working so hard, Bob was totally discluded from seeing them and having shared memories to collect. :( It broke my heart to think of him being so discluded from their visit, home in his wheelchair alone, but he said, "no, this has to get done, and they are here to help you get it finished!" Since the new locker is close, everytime we brought another load, I was able to swing by and check on him.

     

    My tree is still up. Another year, not the first, that I felt like I basically missed Christmas... so the tree is still up. We are usually in the tv room, but the tree is in the living room. Tonight I turned on the tree, and made a fire, and read to Bob. He has this complete set of the Civil War. He told me to go ahead and get rid of them a couple of years ago, and I thought about it. But one night I pulled one off the shelf "A Soldier's Story" and read a little. I thought that even though he can't read all these many words himself, he knows the history, so he won't have to hold on to every word by scratch, I can read the words for him and he will know most of the history already, just some new input from this soldiers point of view. As I read, I kept glancing at him, and when I'd say a battle or a military person, he'd say, 'yea, yea' - he confirmed he knew it. He keenly listened to the the man's story of joining when he was 18. I felt so blessed, that it was possible that I could sit here in such a cozy atmosphere, and give my husband back those stories he had never had time to read, and now couldn't.

  18. smarshall
    Latest Entry

    Things I'm grateful for, there are many, change for me every day; the list is ever growing.

     

    Gratitude for me can be as simple as being able to feel the sun on my face, or hearing a bird sing, to the warmth I feel when I get a hug. (At this moment it's the imitation snowflakes falling on the screen!)

     

    An 'attitude of gratitude' is a wonderful thing to have.

     

    Susan :wreath:

  19. tis the season to be jolly :thumbs up: time towish all of my friends a very merry Christmas to you :santasmiley: its that time to put the decorations :bell: maybe even a little eggnog :ChristmasTree: just a little wish to you :fireplace: a very merry Christmas to all of you and a very happy new year and a very speedy recovery

  20. Still doing ECT, It has helped me a great deal. I travel 100 miles 2x a week for this treatment. So it is time consuming and money consuming. But I sure do feel better. Not cured, but improved. We had Dan overnight at Aprils for 2 nights over thanksgiving. He so enjoyed himself. If he could have just been like this at home. woulda, shoulda, coulda..... not meant to be. He is well taken care of between the the nursing home staff and myself. He is a few of the staffs "favorite". He is also a few of the staffs least favorite. No surprise there...lol...

    Bethany ( our youngest) got married the end of october. Her husband treats her like gold. for that I am so thankful.

    Dan did have a fall in mid october at the nursing home. He recovered OK ,thankfully.

    Dan and Weston have become the best of buddies. I am thankful for that. they throw lots of "ball". So life goes on. Slowly but surly.

  21. Do You Believe in Angels? I do, and this is why:

    When I was 12 years old, we had just moved half way across the country from California to Texas. It was my 3 biological siblings and my stepbrother, my mom and my stepfather. My stepsister still lived in California. We were a Military family. Disciplined. My little brother and I had just began to walk back and forth to school. (Remember, its the 1960's) One day while I was walking home for lunch, I accidentally went out the wrong gate. I couldn't find my brother and thought he had went ahead of me, so I continued on............the wrong way. I found myself in a not-so-nice section of town. I was crying and wondering why I couldn't find my way home. Then out of the blue an elderly gentleman appeared and asked me if I was lost and told me that I should not be on that side of town. I just knew I could trust this man. He did not grab me or try to take my hand. He asked me where I lived and I couldn't remember the address, but I did remember the street and the church across the street from our house. This elderly gentleman walked me home and watched while I crossed a busy street. When I told my mom about why I was late she looked out and could not find the elderly gentleman anywhere. I do believe this elderly gentleman was an angel sent to keep me safe. There have been other miracles in my life where I believe angels were watching over me. Thank Goodness.

     

    Sincerely,

    SweetMom (Donna)

  22. I've been waiting to see if my change of physical status was a transitory thing we get from time to time or more long term. Seems at this point it may be more of a long term healing effect.

     

    Every since this started my right side has been weak and very prone to uncoordinated movement. However, for the last couple weeks my right leg has been more coordinated and controlled in its movements which means my gait is immensely improved. I have to temper that with how quickly I degrade when fatigue sets in. My CPS remains but with more control of my leg the skin isn't rubbed by the clothing as much. Take those two together and I have doubled my endurance, not that it was impressive before but I can now walk longer before I start into the zombie shuffle (hey it's Halloween). Time will tell how this works out but I'll take any increment of improvement, it gives hope to the wife and I about the tomorrows.

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    I had my first stroke in April 2016 in my home in Arcadia Ca. I tried to downplay what was happening as the symptoms were not sever. None the less, my wife called 911. I spent the night in the hospital and was told the following day that I indeed suffered a stroke. However minor, it was still a stroke. No permanent or temporary physical impairments. Just your run of the mill brain injury.

    I had a flight scheduled to return to Iowa, where I still own a home and my daughter lives, the following week. Dr said not a problem, so I scheduled appointments with a cardiologist in Iowa during my visit.

    He told me I actually had 2 strokes.

    I am physically fit, I work out, am not over weight, do not smoke or drink, my BP is consistently 120/70 but they found my "bad" cholesterol was 126 so they prescribed Lipitor. After a few weeks, I was barely able to get up out of a chair due to the affects of the drug. They prescribed a different statin drug, but I had the same side affects.

    My primary care physician prescribed a different type of drug but I didn't take it, choosing instead to increase my workouts and adjust my diet.

    In June my cholesterol was down to 75.

    Fast forward to September.

    I had planned a 2 week visit to celebrate my daughter's birthday and perform some seasonal maintenance around the yard and house in Iowa.

    A week after arriving, my older brother passed away at the age of 61. My wife flew to Iowa for the services, which were on the day I was scheduled to return to Calif. so they canceled my ticket. In addition, I was scheduled for a series of tests on my heart the same day so those were rescheduled to Oct. 5th.

    My wife returned to California on Sept 23rd, reassuring me that Oct 5th was barely 2 weeks away, not a long period of time.

    Oct 5th, did a stress test, echo cardiogram on my heart and carotid arteries, including the "bubble" tests. They then had me wear an external heart monitor for 48 hours.

    Monitor ran it's course, shutting down at 12:38pm on Oct 7. At approximately 9:15 on Oct 7th, I suffered another, more severe stroke. This time my left arm was paralyzed and I was unable to speak clearly. Mind you, I was still in Iowa.

    I called my daughter who in turn called 911. By the time the EMT's arrived, I had regained use of my arm and full speech capabilities. I called my wife in route to the hospital.

    The performed the routine scans upon admittance, finding no obvious damage, but admitted me to the hospital.

    The following day they did more tests, including an MRI. They decided to keep me over night, waiting for results from the tests I had completed on the 5th.

    Sunday morning, I was told by a neurologist that the MRI showed no differences from the MRI performed in April and they were going to discharge me. An hour later, the hospitalist Dr came in with the results of the MRI, signed by the neurologist, and told me I indeed had a stroke, affecting 3 different areas of my brain.

    I informed my wife and she began to book a flight to Iowa, but I told her to wait as they did not have results from the heart tests yet. The following day, they had the results and it showed my heart functioned great, so they decided to pun a scope down my esophagus to check the back of my heart.

    This was performed the following day and they said I had a hole in my heart that is relatively "normal" in that 20% of the population have the same thing, but have no problems.

    The next day they placed a loop recorder in my chest and discharged me. During the time in the hospital my wife started to become very angry and hostile towards me.

    She was venting built up hostility from feelings of abandonment due to my bi-monthly visits to Iowa.

    Since being released from the hospital, I have suffered great anxiety and depression and my emotions are all over the board.

    My wife has become more angry and hostile towards me and doesn't care to hear about what I'm going through. I wanted to return to California, but can't do so until I receive my pension on the 1st of November.

    I beg my wife to read about the affects a stroke can have on a persons emotions and the mental damage that can occur, but I don't think she has. Her responses are "you never ask how I am, or what my day was like" which is not true. I do, and she'll respond with "ok". She went to a weekend seminar called "Take Back Your Life" last week, telling me once she was there.

    I asked her what she needs to restore our marriage and she said "you here with me and marriage counseling". Not a problem! She has the money to purchase a flight for me, but has said in the past she feels used because she believes I take advantage of the money her father left her.

    We have 4 accounts, 2 bank and 2 investment accounts with both our names on them. I have access to only the account my pension is deposited into, she controls the other 3, which I have no problem with because it is money her dad left her.

    I finally humbled myself and told her I could return home as soon as this weekend but she would have to purchase the flight. She didn't respond.

    She has another "retreat" she is attending tomorrow and Monday but refuses to discuss the issues she will be addressing. I respect her wanting the confidentiality, but requested she answer a single simple question; does any of it have anything to do with me? She freaked out because she thought I was going to ask invasive questions, and we went back and forth until I finally asked her after she abruptly ended the conversation with "have a nice evening".

    She responded a bit later telling me it had nothing to do with me.

    Long story short, I feel like she does not care about what I am going through and has shut me out. I feel abandoned by the person who is supposed to support me as I support her and carry each others burdens.

    She acts like I chose to have my brother die and to have another stroke.

    I've been told by my primary care physician to remain in Iowa for 90 days, after which they will close the hole in my heart, and the case manager nurse has advised the same.

    I have follow up appointments scheduled in California and had planned on returning, but now I'm not so sure.

    She has not told me she loves me, other than in response to me telling her, or me asking her if she does, since April.

    Anyone else feel abandoned after a stroke? To me, it feels cruel.

    I love her, am in love with her, but her rejection and abandonment has added to my depression and anxiety.

    I doubt she will see this or even read it because as far as I know, she has yet to seek care giver resources online, even though I sent her a link to this sight when I joined after the strokes in April.

    So if she does read it, she will be angry, but it will show me she does care and is doing research.

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    Hi,

     

    The hospital where I went when I had my stroke and spent a couple weeks on the rehab floor had their annual rehab "party". I thought it may be a little lame but it was really nice. I didn't see any who was there when I was as a patient but I got to see a lot of the nurses, aids, doctors. I think they like to see how far everyone had come. It must feel pretty good to see the help you gave others.

     

    I was able to express my gratitude to those who really helped me. My OT was really great and probably the most single person who helped me. She specializes in strokes and knew how to keep me moving forward. Also to slow me down if I was pushing too hard. I hadn't learned about Exhaustion at this point. :Doh:

     

    I saw "my" aid too. He was teh one who helped my take my first 3 steps. Amazing how it is going as they can remember how you were. Something I don't fully recall. I went using some trekking poles I got a month ago (I will need to write about that in another post) and did it even though there was a lot of walking. Got totally exhausted rest of day and next day. But that is how it goes. But I got there without my roller!

     

    Anyway I was very glad I went and if you have a chance to visit yours, go ahead - it will likely be good for you.

     

    Thanks guys - Have a Great Day!

     

    John