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coacht

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coacht last won the day on October 24 2017

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About coacht

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  • Birthday 01/01/1970

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  1. 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.
  2. My husband has recently been diagnosed with PD.  At this point I'm looking for a support group that will help me with what's ahead as well as caregiver support.  I live in Saint Augustine,  Florida.   

    CT

    1. coacht

      coacht

      Cindy,

      Are you on facebook? I am part of a young onset Parkinson's Disease group there. If you would like to join it give me your email or link to your profile. Also, The American Parkinson's Disease Group and the Parkinson's Foundation have local sponsored chapters you can find on their website. I have gone to a few of those, but they meet while I need to be working and my wife won't go. How old are you and you husband? Let me know if you have any questions, I've been through a lot over the last 17 years.

      Mike

    2. Cindytivey

      Cindytivey

      Hi Mike, 

      Appreciate your quick reply!  My husband is 74 and I'm 63.  He's showed symptoms for a couple years but has just recently been diagnosed as the symptoms grew more intense.  I do work PT so can appreciate the problem with timing.  My husband actually isn't ready to commit to a group at this point but I feel I'll need the support.  

      I am going to a support meeting at Stars rehab this next Friday as I have the day off.  I'm sure you can be quite helpful with your history.  

      Cindy 

  3. 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. 😀
  4. 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.
  5. 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
  6. 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
  7. coacht

    Disability

    Thanks GulfVet
  8. coacht

    Disability

    Thanks Golden
  9. 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
  10. 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.
  11. 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
  12. 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
  13. coacht

    The period at the end of the sentence.

    Genden, so sorry for you loss.
  14. 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.
  15. 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
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