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coacht

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Everything posted by coacht

  1. coacht

    Loss of confidence

    MiracleSeeker, I think most of those days. Many days I have not wanted to go home and deal with my DW's attitude. I have been dealing with another situation and this week she has been kind and considerate. What a relief. I know she can be this way now, but how long will it last? Do what you can, don't worry about the others, they will get their reward in different ways for what they have and haven't done. Keep posting as that is a good way to let off steam. Coachj T
  2. Calliope, I guess a question is, how old are the two of you? I checked into long term care insurance ten years ago. My wife was already diagnosed and I could get it for $2,850 a year. It would pay out up to $100,000 over three years. The average person is in long term care an average of six months, so I figured on average we would collect around $16, 666. I put the money in a Roth IRA where we will get it back. In ten years alone now I was able to put the equivalent of $28,500 in the Roth, plus the earnings. It will be something you can use whether long term care is needed or not. That is what I did anyway. Coach T
  3. coacht

    Early DBS Study

    Kaydee, My wife had a honeymoon period of 30 days before the DBS was turned on. She needed no meds and was doing the best she had in years. Until it is turned on you may just think it is working if you have a honeymoon period like that. Also, people are gullible and will believe almost anything a doctor tells them, let alone whatever else they hear or see.
  4. coacht

    Disability

    Golden, I think if she switched the controller to where she couldn't talk and had an interview she would be approved with flying colors. 😀
  5. coacht

    Disability

    Hello all, My DW has reached the point they don't want her to work much as a substitute teacher. She is really out of it the days she does work. I mentioned applying for disability and she is considering it. What was the tipping point where your PWP applied for disability? How hard was it to apply and what all did you have to do to document the disability? I am looking at the SSI website, I just need some pointers as to best how to proceed. Thanks, Coach T
  6. coacht

    Disability

    We had a talk a week ago and she agreed to apply for disability. She is in her own little world, that's for sure. She doesn't get that no one in the family will ride with her driving because we don't think she is safe. She told me she could have driven on our vacation, right her reactions would do well at 75-80 miles per hour. Bradyphrenia has made its appearance over the last couple of months. She has done a different speech therapy, the Parkinson's Project. I can 't remember the name. She was doing her voice exercises in the car on our vacation. It was really painful to listen as it was so slow and she couldn't even say the words. Suddenly she took out her DBS controller and she could talk. I told her to leave it on that setting. Later I asked her, how often do you change the setting? She said she changed it every day like they told her too. Wow, not what was said. She was supposed to give the first setting two to three days for her brain to stabilize and then try the other setting the same way. If one was better for walking or one for speech use that setting when needed. Never trust your PWP to remember what was said at an appointment. She has had a steady decline in ability since the first of the year. Previously it would be a change, then steady for a while, then a change, then steady again. I told someone that when we were traveling it was like having a combination of a little kid and an old person. She is 53, so she shouldn't fit either category. Sigh.
  7. coacht

    Battery replacement

    Waruna, Insurance won't pay for a replacement any earlier so I doubt anyone has any experience with replacing it sooner. At least that is our experience. Coach
  8. coacht

    Life after DBS

    Chuck, If everything goes according to plan you will be able to do all of that. Make sure they put on the stimulator on the side away from where you shoulder a gun. That can be problems, infection, improper placement, programming problems. I do know that my DW would not be walking now and working some without DBS. They said she had the optimum outcome from the procedure. It is a matter of the risk you want to take and also, the disease will progress and DBS does not stop that, just gives you a reprieve. We are all getting older no matter what we do though. Coach T
  9. coacht

    Disability

    Thanks GulfVet
  10. coacht

    Disability

    Thanks Golden
  11. coacht

    Disability

    Thanks Golden, I will look into it. She is making far less than that. I didn't even know it was possible. Coach T
  12. coacht

    Disability

    My DW is working a little bit yet, but her ego is such that claiming disability probably won't happen for a while. Her voice is so soft I don't know how she will be able to do much, let alone how bad her executive function is getting. I don't think proving it will be a problem.
  13. coacht

    DBS Programming / Configuration

    A neurologist or a movement disorders specialist will usually do the programming. Often a manufacturer representative may be there also, but usually not all that often in our experience. The number of sessions depends on how well you respond, how good of job they do programming, and how the disease progresses. Hope that helps, Coach
  14. coacht

    Voice weakness

    Hello all, Question for all that have had DBS. Was your voice weaker after the surgery or not? Secondly, did it become weaker later? My DW took the LVST training last August and it helped for a few months, she forgets to do the daily exercises. Two years after DBS, her voice has become softer, slower and she slurs her words a lot. Just wondering if it is because of the surgery or is just disease progression. I don't know how long she will continue to work if she can't be heard. Coach T
  15. coacht

    other surgery with DBS

    Hello all, Have any of you with DBS had other surgeries? My wife broke her ankle and is having surgery. Of course she is 400 miles away and with this snowstorm there is no way I can be there. What has been your experience? Coach T
  16. Hello all, This is something I have never seen mentioned and wondered if women or men for that matter have had increased sensitivity in their erogenous zones after DBS. My wife felt so much better after surgery that things in that area improved, then a year or two later as the settings were increased she became almost too sensitive to touch. Has anyone else experienced this? She is 53 and has not hit menopause yet. She had her battery changed out a few weeks ago and that went well. Coach T
  17. coacht

    The period at the end of the sentence.

    Genden, so sorry for you loss.
  18. coacht

    Disability

    None, she continues to work, but a lot less. She started Rock Steady boxing last fall and did really improve. Her programming changes also helped. The gym owners took a week off before Christmas and she really declined and was awful for the month of January. She was forgetting to flush the toilet, for example, which she has never done. She can't set the table completely for example. Her memory or her ability to stay focused is really off. She had a neurologist's appointment the first of last month and she walked the best, talked the best, and made sense compared to just the day before. I emailed the neurologist about whether it was Lewey Body Dementia and they didn't think so. Said there are meds that can be given, but I know my DW will not think anything is wrong. Also, most of the meds are anticholinergics, which caused many problems when she was on similar things in the past. She is still in her own little world. Also, she said she is a people person and needs to be around people. She isn't really a people person, she is a doing person, she constantly needs to be doing something and the thinks she likes to do involve people. Just last week it really hit me that we are more like roommates than a married couple. She has changed so much, PD has brought out much of the worst parts of her personality and she can't recognize it. There is much more, but that is all for today. Thanks for asking.
  19. coacht

    Does this seem normal? Sleep attacks?

    Carol, Some meds can cause sleep attacks, which ones I can't remember off the top of my head. Why is she on mirapex instead of sinemet? A question to ask since Mirapex has so many side effects. It sounds really complicated and I don't understand some of the acronyms for the disease. There is a list of medications on this website that states what medicines a PWP should not use. It is a good resource. Coach T
  20. coacht

    How to plan your own future

    Bluemoon, Where are your from? Some of the terms you use are different than we use in the states, so it might be different in another country. Coach
  21. coacht

    Disability

    Thanks, Golden.
  22. Dunne08, You should never use acronyms without telling what they stand for. Why would I do a survey on something I have no idea what it is? I am too lazy to look it up.
  23. coacht

    No Sleep For The Weary

    Klonopin, (clonazapam) helps my wife and therefore me.
  24. coacht

    PROGRESSION

    Bigmac, Thanks for the question, I hope to hear from someone since we are not at that stage. Coach
  25. coacht

    what to do

    Noah, I sound a lot like your husband in some ways. My wife was on the agonists for several years and she changed so much on them due to the side effects. She wanted to go to counseling and we went to a Christian counselor. It did me more good than her. She couldn't see what she was doing and everything she did seemed right in her own eyes. She told me that I had changed and that I used to be a really nice guy that treated her better than anyone, but not anymore. She had changed and the way I was coping was not always the best. Things improved greatly once she was off the agonists and she realized what she had been doing but wouldn't talk about it. More meds were added so more side effects and well as the disease progression made things difficult again. She had DBS three years ago and things were better the first year, then things were getting difficult again. This spring she had an attitude change for whatever reason and things have been better off and on. She continues to deteriorate as far as executive function goes, but her memory is clearer. She talks big, but doesn't follow through with things like she should and day to day chores do not seem as important and the time she spends on the computer. There is so much more, but I wonder if you see yourself in any of this? Maybe show my post to your husband? I know things really get to me and in reality the rest of my life is really good, but she is not interested in any of it really. She also refuses to go to support groups, so I have gone by myself in the past. As per usual it seems to help me but not her. Maybe he would go to something like that if it is for you and not him? If you are on agonists, I would seriously consider getting off of them. Hope this helps, Coach T
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