Jump to content
  • Announcements

    • ForumAdmin

      Frequently Asked Questions - Step by step guides

      Do you need assistance registering, logging in, posting, etc? Please visit the all new Frequently Asked Question Forum for step-by-step guides. Click the link below to access these helpful guides. Frequently Asked Questions
    • ForumAdmin

      Recursos Nuevos en Español

      http://www.parkinson.org/ayuda   http://www.parkinson.org/espanol    
    • ForumAdmin

      Línea de Ayuda 1-800-473-4636

      Línea de Ayuda 1-800-473-4636   ¿Qué es la línea de ayuda 1-800-4PD-INFO (473-4636) de la Fundación Nacional de Parkinson? Es un número de teléfono gratuito que ayuda a las personas con la enfermedad de Parkinson, sus familiares, amigos y profesionales de salud, a solucionar diferentes inquietudes.   La línea de ayuda ofrece: Información actualizada Apoyo emocional Referidos a profesionales de salud Recursos comunitarios Amplia variedad de publicaciones gratis    


  • Content count

  • Joined

  • Last visited

  • Days Won


Everything posted by coacht

  1. 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
  2. Disability

    Thanks, Golden.
  3. 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
  4. 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.
  5. No Sleep For The Weary

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

    Bigmac, Thanks for the question, I hope to hear from someone since we are not at that stage. Coach
  7. 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
  8. 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
  9. 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.
  10. Voice weakness

    My wife has a hard time saying her own name now. other words not so much.
  11. 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.
  12. 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.
  13. 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.
  14. 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.
  15. 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
  16. 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.,
  17. 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
  18. 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.
  19. 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.
  20. 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
  21. Voice weakness

    Our neurologist doesn't give us any options other than what is done at the visit. I wouldn't trust my wife to do any adjusting with her cognitive decline. She is still working, but her judgement and understanding of new things is not good. Also, she has had no tremors since the surgery at all, her main problem is dystonia at this point.
  22. Voice weakness

    The neurologist decreased the bandwidth to try and help her speech last time. That was two weeks ago and her speech is slightly better. I don't have to ask her to repeat as much now.
  23. Bladder control

    I have never read anything about it being related to a stage, it is common in both men and women. Coach T
  24. For caregivers only

    Genden, Not looking forward to what you are going through. Just echoing what others have said, Coach
  25. Follow the DBS Road

    Scott, Why don't you just copy your post here for people like me that are usually too lazy to go to a link? Good stuff. Coach T