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Everything posted by coacht

  1. 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
  2. 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
  3. 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
  4. coacht

    The period at the end of the sentence.

    Genden, so sorry for you loss.
  5. coacht


    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


    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.
  7. 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
  8. 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
  9. coacht


    Thanks, Golden.
  10. 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.
  11. coacht

    No Sleep For The Weary

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


    Bigmac, Thanks for the question, I hope to hear from someone since we are not at that stage. Coach
  13. 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
  14. coacht

    Voice weakness

    The speech problems did not show up until almost two years after DBS. The increasing pulse strength and width may be to blame. They turned down the pulse width last time to try and help her speech. Her speech problems come and go, so it can't be just the DBS, the speech problem is probably multifactorial.
  15. coacht

    Voice weakness

    My wife has a hard time saying her own name now. other words not so much.
  16. coacht

    Voice weakness

    Interestingly, at the appointment with the neurologist this week, my wife's voice was the best it had been in over a year. Just two day before one of our son's texted me and wondered why she sounded drunk.
  17. coacht

    Voice weakness

    it was relatively normal. She did not seem to know how loud she was and was quite loud for example when we were eating. She did not continue the exercises and within a few months her voice levels started deteriorating. They improve somewhat for a short time if she does them.
  18. coacht

    For caregivers only

    My DW always thinks things like rock steady boxing are the answer when she won't even do the most basic exercises at home including her voice therapy. She is always looking for the homerun and won't work at the little things she can easily do.
  19. coacht

    Voice weakness

    My wife did the LSVT a year ago and doesn't do her daily exercises and you can tell. It is a long term therapy that needs to be done regularly, not just the initial training. Hope it works for you, it did for my wife when she did it.
  20. coacht

    Morphine in hospice care

    Genden, So sorry for you to go through this. Evening out the Morphine means that lower doses can be used since the pain will not start. When you give a dose it goes up really high and then if you don't give it the level in the blood drops to where it doesn't work and then pain is experienced and a higher dose has to be given to stop the pain. It would help if I could make a graph to show you what happens, but it makes a lot of sense to me to give smaller doses consistently. Thanks for sharing. Coach T
  21. coacht

    dbs overstimulation and is explosion possible

    The leads will not melt, nothing should explode. If the doctor says it is at the maximum then it is at the highest level it has been designed for and any settings higher are not possible. They do not want to do any harm. There are limits to what DBS can do for someone and sorry to say, she might be there as far as DBS goes. If it is set too high it can cause many problems. Hope this helps and your friend feels better. Sorry for her situation.,
  22. coacht

    30 yo Husband diagnosed with YOPD

    Mplsgrl86, I can relate, our four children were 3,5,7, and 9 when this started and it was diagnosed almost three years later. my first reaction was grief for the first week. My DW was a Pollyanna and wouldn't let it get her down. The problem was she would only look at the good things and let everything else go so there was no line of communication between us. That has continued until lately and it still isn't completely open. Getting on the same page with your husband to me is the most important thing going forward. Get all of the crap stuff out of the way so you won't have to worry about things later. I have had to do all of the financial planning, and lately got her to do some estate planning. I would get your wills in order, medical power of attorney, durable power of attorney, living wills and things our of the way. That way you don't have to make decisions when you are possibly really stressed later and can think things through. Having a child makes one aware of, who will be the guardian, how will they be taken care of, etc. more apparent. I can't believe how many people that don't have medical problems do not have a will in place. One big piece of advice from a dear departed friend, was that if you have seen one person with Parkinson's you have seen one person with Parkinson's. I think the people that face a lot of problems tend to post here, people that don't have to deal with much don't since they don't feel the need. Don't let the posts on here worry you too much, you can't predict how long this journey will be, what symptoms will show up, how fast it will progress, etc. Make your plan for the future and adjust it as life comes. I think that can ease your mind a lot. Message me or others if you have questions you do not want the public to see, people are really helpful on here. Coach T
  23. coacht

    Voice weakness

    She definitely benefited more from the DBS than the medications. I am not saying that all will though. The side effects of the agonists was awful and was a really stressful period. The neurologist just cared about physical symptoms and the cognitive and behavioral ones were ignored and she wasn't aware of them. The other meds also had side effects that were not so good, plus her dystonia was getting worse and worse. She could not get by on just the DBS alone so the DBS and meds are complementary to each other. It is not an either or situation. I do think the DBS has extended her life due to the fact she would probably not be mobile now or in a short period the way her dystonia was progressing. Hope that helps.
  24. coacht

    Voice weakness

    She has had physical symptoms since 2001. I think quitting work will be a combination of several things, her voice, fatigue, walking, falling, her judgement, executive function, etc. The reason she had the optimum result is she took no medication except her anti-anxiety meds after the surgery and she gained in my estimation seven years physically. I am a veterinarian so I am used to looking for things like that, drives her crazy. Gradually sinemet was added back. and she is still at the same level. A lot of her issues started after she slipped in the snow a year and a half ago and broke her ankle. That set her back physically by quite a bit. It was optimum in that she had no complications, her meds were greatly decreased, she had no tremor whatsoever and still doesn't, her dystonia was gone, (it has come back slightly now), her cognition improved actually since she was off of several meds. In the last year her executive function has gotten worse, her dystonia is back somewhat, but nothing even close to where it was and tweaks to the programming take care of it for now. She is a much nicer person off of the meds than she was on them. I guess, what more can you ask for as it is chronically progressive. She did tell me of someone else in town that just had the surgery and had infection so the battery and leads had to be removed. Lots of PD here I guess. Three people on our short street at one time.
  25. coacht

    Voice weakness

    It does work, but there are tradeoffs. Different locations are used for the placement of the DBS depending upon what a person's main problems are, example STN (Subthalmic Nucleus) vs GPI (Globus Pallidus). I can't remember which one is better for tremors and which is better for dystonia. Voice and cognition are affected in many people that have DBS. My DW's cognition improved actually at first due to the removal of so many drugs and their side effects. It was almost two years after the surgery before her voice started being a problem, so is it due to the DBS and the increasing levels, the progression of the disease, or both? I think she would be in a wheelchair by now if it was not for the surgery. She is still working part time and driving, so for her it has overall been nothing but good. Her symptoms started in 2001 and she is now 52. I think this next year will be her last year working due to a number of things, mostly progression with the increasing symptoms. They said she has had the optimum results of the surgery. Another man in our small town had the surgery and you can't tell anything is wrong with him and he could not tolerate any of the meds. He is in his late 70s. Another man had just terrible results and used the same surgeon as my DW. You just have to weight the pro and con of the whole surgery. I am sure others have more opinions. Coach T