jlight

Stroke Caregiver - female
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About jlight

  • Birthday 04/18/1956

Shared Information

  • Stroke Anniversary (first stroke)
    01-16-2011
  • How did you find us?
    Google Search

Registration Information

  • First Name
    Judy
  • State
    WV

jlight's Achievements

Associate Member

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  1. Happy Anniversary jlight!

  2. Happy Anniversary jlight!

  3. Happy Anniversary jlight!

  4. jlight

    Tough week

    Well it's been a rough couple of weeks. Took Oliver to the neurologist for arm pain, thinking maybe he had carpal tunnel. The neurologist thought so as well. However, when he started doing the nerve conduction study...found that the nerves in his arm were not responding at all. So we had to go back on Labor Day (I knew it was serious when the neurologist had us to come back for more test when his office was closed). He did the nerve studies all over his body...none responded. So he was admitted to the hospital for a spinal tap testing to see if he had GBS. He was there almost a week for 4 days of IVIG treatments. Truthfully the neurologist never really said that he had GBS, but said he thought he would try the treatment even if the results came back negative because there wasn't anything else he could do. After lots of blood test...now there are saying that the results are suggested of multiple myeloma (a type of cancer of the blood and bone). He is having a bone marrow biopsy on Monday. I really don't know what to think of all this...we seriously just thought he had carpal tunnel. Has anyone had test that showed all nerves were not responding? The doctor said this was pretty serious as the major organs would be the next to be affected. Pretty worried!
  5. jlight

    Sensation

    I will talk make an appt with his neuro and discuss the physiatrist with him. Nothing new in PT or any type of strain...I had thought of that. He has had some tingling, etc., but nothing this severe. Really causing him a lot of pain and discomfort. He is not one to complain, so I know it has to be bad for him to be down with it. What exactly is overtoning? Sorry I am new to all this. Thanks all.
  6. jlight

    Sensation

    Thanks all...I will post it in the stroke survivor support board as well.
  7. jlight

    Sensation

    Question - my husband is having the worst sensation on his right side. He has had this sensation (as he explains it) off and on since the stroke, however he says that it is the worst it has ever been. Explains it as tingling, needles, etc all on the right side. Anyone suffer from this? If so, what can be done about it? His doctor doesn't seem to know what to do about it. Thanks..
  8. jlight

    Feeling sad

    Thanks all for the encouragement. I guess I just needed the reminder of where he too was when the stroke first happened almost 3 years ago. Couldn't sit up on the side of the bed either, heck couldn't even breathe on his own. Took almost 3 months to get him to walk very slow with a walker for just 10 steps or so. He can walk thru the house now to the bathroom with the walker on his own. I love this site...such encouragement and from folks that truly understand!
  9. Great news on your surgery and glad your son didn't get hurt. Let me know how the stuff works for Larry. I take Oliver to the swallow specialist tomorrow to see what can be done to help him swallow. Enjoy your visit with your daughter.
  10. jlight

    Feeling sad

    I am having a really sad day today. Some days are better than others but today just seems to be so hard. I feel like I am slowly watching my husband die a little each day. My heart if being ripped out of my chest. I have moments that I feel like he would be better off if God would just take him home but then he looks at me and smiles and then I think what would I do if I wasn't able to see his smile or hear his voice. I told myself that I would focus on all the things that he can do instead of focusing on the things that he can't, but then I find myself doing it again. Thanks for listening...sometimes I just have to say it out loud and someone listen. Judy
  11. jlight

    Returning to work

    My husband had his stroke in January 2011. I was off work for a couple of weeks, when he was critical. He was in the hosptial for 3 months, 2 weeks in ICU and the remainder in rehab. I worked two days in the office and three days from the hospital room. I stayed at the hospital the entire time he was there. Slept in the room with him. My brother-in-law came two days a week so I could work in the office. Other than that, I was there around the clock. My employer has been so good and allowed me to continue working full-time however, I could manage. I have to work so we can have medical insurance. It is hard. I have no help. I now work 5 days a week and most days 9 hours a day. He stays at home alone and knows his limitations. I do worry about him falling while I am away and feel really guilty as I wonder if he would be much better if I could stay at home with him and do more of the therapy. He did take 6 months of outpatient therapy of which I hired someone to take him to and from therapy. We do most of this therapy in the evenings when I get home. I have come to learn that I can only do what I can do...if the house isn't spotless, that's okay too. On the week-ends, I try to do the things that he enjoys and get him out of the house as much as I can. Winter will be here soon and he'll be stuck in the house. I will have to admit...some days, I dream of going somewhere and sleeping for a week with no worries.....We just do what we have to do and there are days that I am so bone tired and days that I cry myself to sleep (without him knowing it of course) . My daddy taught me to always be strong and when I cry, I can see him pointing his finger at me from heaven, saying, "quit your whining". haha Don't know if this helps, but thought I would throw it in. God Bless. Judy
  12. jlight

    Been a while

    Thanks so much to all of you that have commented. I wish I could get him to join this site, I feel if he would talk to someone that has had a stroke it would really help him. I told him that I found this site and there is so much information on it and so many folks that have gone thru or going thru what he is on the site. I truly feel that he is givin up. I encourage but starting to get down myself. My family tells me that I baby him way to much, and that I just need to be firm with him. But I almost lost him and all I can think of is that he is still here and I want to keep him. Even if he nevers walks, at least I can sit and have a conversation with him. He is the love of my life....do I can down and discouraged and want to throw in the towel at times...absolutely, but then I remind myself of where we came from. I work as well as we have to have medical coverage. So I am exhausted by the time I get home and still have therapy to do, supper to cook and the whole gammit of housework. I do have someone that does the yard work, so that's a big help. I went from having supper waiting for me when I got home, laundry done, house clean....(yes, I was a little spoiled), but now have to do it all. Looking forward to the day that he can resume some of these duties and help. He still gets exhausted and has to take a nap during the day, however, much better than before. He was taking a couple of naps. Thanks for all the kind words and advice. God Bless you all. Judy
  13. jlight

    Been a while

    It's been a while since I have been on the network. As a reminder, my husband had a brainstem stroke Janaury 2011...it will soon be two years since the stroke. I try so hard to be optimistic, however, watching him try to walk with a walker, brings tears to my eyes still. He has not regained his balance, still has difficulty swallowing and remains weak. He still has the feeding tube as he has not passed the swallow eval for liquids. Until he does, the TP will not remove the feeding tube. Any suggestions or ideas on what we can do to help him with the balance issue. We continue to do as much therapy at home as we can. (walking on the treadmill...he is now up to 5 minutes at a time..1.2 mph) We also use the balance board and walk with the walker and cane. He cannot drive and his daily activites are limited. I love my husband with all my heart and it breaks my heart to see him in this shape. He gets very discouraged and down. He made the comment the other day, "if I'm not going to get any better, I wish I would die". That broke my heart and I had to leave the room for the tears. As much as I want him to live, I understand how he feels. I would appeciate any advice anyone can give on the balance or the feeding tube. Thank you so much.
  14. jlight

    PT - so discouraged

    I am contemplating retiring, I have worked 37 years in the coal industry in the Human Resources arena. I have a very good job. However, with the PT being stopped, Oliver will need me to help him at home. My caregivers are getting tired of coming. My brother-in-law has been a God send, however, I think he is ready for a break as well. My other caregiver is paid well, but think he is ready to move on. I really think Oliver will do better with me home. The therapist gave us a home exercise program. I have rearranged the house so we can move the exercise equipment downstairs for convenience. I am hoping this will help. I know Oliver was getting tired of going 3 x a week for this past year. However, at least it got him outside and amongst people. I am so afraid he will now become a hermit and want to stay inside. I've mentioned going to a gym, however, we have all the equipment here so he doesn't see the point of a gym. He used to take care of everything while I worked, however now I can't even get him to wash the dishes and yes he could do this. I really don't know who is more depressed, me or him. If I even thought I would have to repeat this past year, I don't know that I would want to live. I am so glad to have this site so I can just vent. I don't discuss my feelings with anyone. I live each day with a smile on my face and pretend as if everything is good, it's the wee hours of the morning that I shed my tears. I love my husband with all my heart and will do anything to help him recover and enjoy life again. Each of you are an uplift to my heart. Thank you so much for listening to me and helping me thru. Happy New Year! Judy
  15. Well it's been a while since I've been on the site, hope all had a Merry Christmas. Ours was good, different but good. Everyone tells me that I should be so thankful for the progress Oliver has made, however, feel so discouraged lately. His physical therapist discharged him from PT this week. He said he couldn't continue to treat him without showing progress. Oliver is really down, the goal set for him when he started was that he would walk with a cane. He didn't meet that goal, so he thought he would continue PT until he could. It will be a year in a couple of week since the stroke. I know it's a slow recovery, but we thought sure he would be able to walk and eat by now. Now I'm not so sure he will ever. I get so mad at the world sometimes. Life sure seems to sucks. He still has the feeding tube, can't drink liquids, eat meats or anything other than pudding consistencies. He is walking with a walker, but still does not have balance. Feeling so depressed, sad and angry. Keep us in your prayers. Judy