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Everything posted by coacht

  1. I have never read anything about it being related to a stage, it is common in both men and women. Coach T
  2. Genden, Not looking forward to what you are going through. Just echoing what others have said, Coach
  3. 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
  4. 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
  5. NN, My wife's eyes seemed to glow like the aliens on Stargate when her Mirapex was at its peak effect. She is no longer on it and her eyes don't glow now. Coach T
  6. Hers was actually better at first. I know that most get worse. It has been relatively sudden as to how fast it changed.
  7. My wife is doing well with the DBS. Her biggest problem is she broke her leg at the ankle a year and a half ago and that has really set her back. She didn't use the broken leg (her PD affected side) and now her good leg is worse due to overuse and not stretching it.
  8. There are also beds now that will rotate and shift to prevent bedsores, you would probably need a prescription to get one unless you have a lot of money. An idea anyway. Coach T
  9. MeeShelly, You are in the right place and yes you are a caregiver. My DW is mobile, still works some and boy do I still have to do a lot because of the cognitive problems. I do have a lot of support, yet now that the kids are out of school I see a lot fewer people I also quit asking people over since her executive function is terrible and a meal made by her is a crap shoot as to how it will be put together. Financially it is a problem as you are probably finding out, so get your finances in order, will, power-of-attorney, retirement plans, insurance, etc.. That will give you some peace of mind, one less thing to deal with as things get worse down the road and he is not able to help decide due to depression, apathy, or cognitive problems, none of which may occur. One wise man told me that if you have seen one person with PD you have seen one person with PD. What someone may experience another may not. I do understand about the smile, my DW regained her smile two years ago following DBS (deep brain stimulation) surgery, it is now gone again and she does comment on it also. She is 52 and I first noticed signs in September of 2001 with a diagnosis in 2004. There are also other groups on facebook and places like Yahoo you can join also. Coach T
  10. So glad it has worked this way for you.
  11. 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
  12. Hello all, I have been taking a bit of a break with everything that is going on. I never did follow up. She had to have another surgery to redo the first one two weeks after the first one since everything shifted. The surgery took longer than expected, the surgeon said he had a hard time lining things up. I said it was probably due to her dystonia since her DBS was turned off so the muscles contracted. She later had to have some of the screws removed since they had a high probability of breaking later. She was very weak after laying around for three months. She did improve and was a lot better by the end of June. She went to rock steady boxing for 10 weeks and did LSVT in August. We moved in August and even before the move her symptoms progressed. She had a fall, her dystonia was worse, cognition was worse. We moved in August and there were more stairs (for now), she would only use one leg to go up one step at a time and her (stronger) leg then became very stiff and remains so. Also, I don't know if it was the stress of moving or if it is just PD, but her cognition was a lot worse, now it has improved somewhat. One son read the article by the widow of Robin Williams and said it described his mother. Everything progressed faster than I had seen it in the past. A programming session helped a lot, but not for everything. Fatigue is worse for her now also. She needs to exercise every day, and stretch every day or more often, but she doesn't. It is a good thing the new house is handicapped accessible with a ramp and there is a bedroom downstairs next to a bathroom with a walk in shower. Sorry to be a downer, the DBS helped tremendously, without it I am sure she would be in a wheelchair by now with lots of side effects. The broken leg is what seemed to make things worse in that she lost so much ground being laid up.
  13. Mical, I took a break from the forum, mainly because of issues logging in, but I did need a break. I was in a grieving process the first week after my wife's diagnosis. We had just watched the movie "Saving Millie", a few months before. Now it is more just constant frustration, mostly due to the cognitive aspects. My DW has had DBS or she wouldn't be walking now in my opinion. Everyone is different, if you have seen one PWP (Person with Parkinson's) you have seen one PWP. they have lots of things in common, but, each is unique and the progression is different. Coach T
  14. Quietstill, I agree with Linda, have his PCP give him a medical exemption. The defense could always use that on appeal if they knew about it. Same dilemma on the car. I told her I had concerns and that she should not be hauling kids around and how would she feel if they were hurt. She didn't say if she would or not, but at least she listened. Her driving scares me. She offered to drive on vacation and I just didn't let her. Coach T
  15. Mike, She gained 7 years physically with the symptoms I noticed when her dystonia started with her dragging her left leg. I think she would almost be bedridden by now without it. Cognitively, the side effects of the meds for the dystonia were worse in a lot of ways than she is now. Same with the agonists. the balance is a new thing two years after DBS, can't say that it is related to the surgery with her. The speech isn't any worse. Did get rid of many med side effects at least as far as cognition goes. Hope that helps. Coach
  16. Mike, Her feet would curl up into the shape of a C. She wouldn't be able to walk and it was quite painful Also her shoulders were stiff and painful to move. She was shuffling her feet at the diagnosis, but not before the surgery since Sinemet helped that. She is starting to shuffle her feet and walk like a drunken sailor the last 5-6 weeks. Time to be reprogrammed. Her handwriting is not good either most of the time. Her speech is soft and trails off at the end of a sentence. That is the same as before. She is taking LSVT now. Her executive function is getting much worse also, but that has come and gone before due to the meds. Maybe a list of her symptoms would help? Let me know. Coach T
  17. Mike, I actually can't remember since she is not good at sharing information like that. She doesn't even let me see her take her meds unless there is no option. So needless to say, I am in the dark a lot. She actually did not take any sinemet for the first month after DBS. I think she was taking two every four hours before that. I think she is on one now. The biggest difference is the dystonia is so much better. I don't know if she would be walking by now or shortly as bad as it was getting. So, I urge all PWP to share what they are taking with their caregivers and family. Coach T
  18. My wife for over a month from the first surgery. Stimulator helped even more.
  19. Hello all, A neighbor to my parents called about her son who had DBS on Monday. He is not able to walk and is still in the hospital. His voice is very soft. What has been everyone's experience immediately after the surgery? My DW went home the next day, but as the doctors said, she had the optimum outcome. He is around 60 if I recall correctly.
  20. Things are going well considering her broken leg at the ankle in November. PD is creeping back in and it has been hard to get adjustments correct since she was not really using the leg for several months. She is still limping so it is hard to tell sometimes what is what. Her balance seems a little off now more than before, the dystonia is coming back some and adjustments to the DBS have helped that. The next appointment is in November. Thanks for asking.
  21. It is interesting. this morning my wife said to me, what about the board in the basement the boots are on? (we are moving). I said I didn't care about the board since it was ruined anyway. She said, "I am talking about the boots." She has problems referring to something, yet to her it is so clear what she is talking about. She didn't say anything about the boots on the board, just the board. I assumed we were moving the boots or why do we have them, but wouldn't take the board.
  22. Oakman, Your experience is the same as my DW's. You are correct that things will progress, she lost her smile again after about 10-12 months. It is not as masked as before yet. Her dystonia has returned somewhat and the settings need to be changed again. In my estimation she gained seven years physically from the DBS as far as the symptoms addressed. Breaking her ankle late last fall has really set her back. Glad to hear the good news, Coach T
  23. Miracleseeker. Dopamine does not build up over time, that is why you have to take it so often. Also, it was mentioned to stop the agonists, patients have to be weaned off of the agonists or may suffer severe problems. Hope that helps, Coach T
  24. Maral, I know what you mean. I have to use very simple language when having a conversation. Also I have to watch whatever I say as you never know how she will interpret something and then try to fix it. That just leads to frustration. It is just such hard work to talk to her. Intimate talks are out for sure. The thing is others don't have a clue and think I am full of it. They have no idea that what she might be telling them is completely false, partially true or completely true. I double check everything she tells me before I repeat it. Coach T