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Everything posted by coacht

  1. 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. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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
  7. 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.,
  8. 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
  9. 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.
  10. 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.
  11. 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
  12. 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.
  13. 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.
  14. Bladder control

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

    Genden, Not looking forward to what you are going through. Just echoing what others have said, Coach
  16. 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
  17. Bulging eyes

    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
  18. Voice weakness

    Hers was actually better at first. I know that most get worse. It has been relatively sudden as to how fast it changed.
  19. A year& a half after dbs

    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.
  20. Preventing pressure sores

    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
  21. 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
  22. Becoming a short distance caregiver

    So glad it has worked this way for you.
  23. 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
  24. other surgery with DBS

    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.
  25. Hello

    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