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  1. Today
  2. “On” when I should be “off”

    MusicMan: No, I don't have trouble getting to sleep, but I have to make two or three trips to the bathroom every night, so I don't get an uninterrupted night's sleep. Some nights I'm restless which disturbs my sleep, but on the whole no complaints in that department. Sorry, I don't know why, but if I ever find out I'll be sure to share the secret. SoCalGal: Have you ever tried delaying your first dose of the day? I mean, if you didn't take it at 6 a.m. how long would your "on" last? I suspect that some of us have enough functioning dopamine-producing cells to allow us to build up a small reserve of dopamine which is stored during sleep. I also wonder whether this is linked to a slow PD progression. Surely slow progression means exactly that: slower loss of those particular cells. I was diagnosed in 2007 and only started on Sinemet six years later.
  3. Boy am I new to this

    I guess I am still in the "oh hell no" stage. After reading so much about the disease, I got even more bummed. It is hard getting my head around the idea that, the pills just treat symptoms, not cure it. Is it wise to do clinical trials, especially ones were unproven medication can be so detrimental to health? I want to wrap all the info about the disease, what can I expect? Are there maladies I can expect at certain points? What condition I can expect my body to be in, in ten years? It seems so capricious, that there are no hard and fast rules. So, honestly...The only consistent answer seems to be...It is a degenerative neurological disease...Results vary.
  4. Approved for DBS

    So, if you wife is teaching nursing students, then presumably this is based off a school schedule. Try to see if you can get your consultation scheduled during the break between quarters/semesters. There's usually at least a couple weeks in between that would give you options. Since it's October that might mean waiting until mid-late December. From the sounds of things, that might not be such a bad thing to wait that long anyway.
  5. Good morning!!

    My thoughts and prayers will be with you in your grief, Peace. For a short time, I worked at a pet cemetery. I know that the loss of a pet is just as devastating as the loss of a person. Dianne
  6. fixing and fumbling

    Bill Dont take dementia to seriously in PD.I have found task focusing has helped greatly.I am more organized then ever in my life.My only drawback is sometimes a little word debt;lol Sure we are slower but also better in quality of mind.I just back from our annual democratic dinner we have.Im up on all the latest politically. Being involved in our todays crisis in our nation gives me much energy and very little time to worry about PD and my future dont give up on the banjo and watch the effects the drugs have on you. They can help but also cause problems we dont need best jphn
  7. Boy am I new to this

    Nice! Happy to see you are doing well and encouraging others! LAD
  8. Good morning!!

    Thank you for the kind words everyone. I knew you guys would understand. Have a great weekend.
  9. Yesterday
  10. Service Dogs Are Life Changing

    This is not an advertisement. I would never, ever support a fake program that is only looking to suck money out of disabled people. I actually know of several groups who do that, and want nothing to do with them. Most groups are very large and well known. This group is not and only places about 30 dogs per year. That is exactly why I am trying to put the word out there about this group. Have you ever heard of this group before? No? That right there explains why I made this post. Some people spend years on waiting lists or spend 10k or more on a service dog because they don't realize there are other options.
  11. “On” when I should be “off”

    Hi Sunbird,. I take my last dose of 25/100 sinemet at 4. I have some tremors in the evening but not much else. When I get in bed at 10 my tremors really lessen even though I am not asleep. No problems when I wake up several times at nite. I take my morning dose at 6 but really don't feel "off". Don't understand why i don't have any Meds for 14 hours but don't have a problem. Lorraine
  12. “On” when I should be “off”

    Do you sleep good? (if so, HOW????) I read somewhere that dopamine can be somewhat replenished overnight, or maybe stored cos you aren't using it? I used to feel great when I woke up, or at least as good as I did on sinemet. Not so much anymore. Now I sometimes take my dose, then go lay back down for 20 minutes. In any event, we are all different, so go with what works for YOU.
  13. Good morning!!

    I am so very sorry for your loss Peace, the loss of an animal is a very hard loss to endure. The bond we form with them is so wonderful. It is hard to describe to anyone that has not experienced it. I have had many animals of different kinds, but never a horse. The few opportunities I had to pet and ride a horse brings back fond memories, they are such majestic, amazing creatures. You are very fortunate to have had the experience to bond closely with Max, how wonderful. I'm sure you have beautiful memories that you will have forever. I agree, it is much better finding that they passed away peacefully rather than having to make the decision, although, at least with domestic animals, it is fairly rare. I hope you find peace and healing.
  14. Service Dogs Are Life Changing

    This smells like an advertisement. The service dog programs that I'm aware of have no need to advertise for clients, as their waiting lists are quite long and new folks getting on the list all the time. This creates "opportunities" for many folks interested in making a little money. I don't point any of my fingers at this particular program, as I know nothing about it. I'm just saying the buyer beware, because there are far more fraudulent service dog programs than there are real service dog programs.
  15. Boy am I new to this

    There's a saying that it's okay to rest for the moment but never give up, you may succeed with next blow. Exercise, exercise, exercise. What ever type that works for you. Low impact stretching to high aerobic running. It's amazing how much better you feel after exercising. I agree PM. In the interim of waiting on what next to do. There are valuable exercise videos on You Tube. Just type in Parkinson's Exercise and go from there. A good starting point is the B.I.G. program which is supported by the docs. It gets you to kind of over exaggerate movements like walking, stretching, etc. You definitely need to be dealing with a MDS if it works out for you. I guess there are also neurologists that have interests or background in PD among other things. I haven't been to one. Just sharing the information that they exist. As was told to me from the beginning.....it's not curable.....but it's manageable. I think I'm in my 3rd year after diagnosis and that saying is holding true. It's unsettling when you're first told. But after you learn more about it and deal with the symptoms, life goes on! Sometimes its a day at a time, other times...... its time to be looking forward to something, a week out, a month out, etc......what ever it takes to change your perspective and keeps you going.
  16. Rock steady boxing

    I'm just wondering how many people with YOPD would be interested in Rock Steady boxing in the southern Wisconsin/ Northern Illinois area?
  17. fixing and fumbling

    I like to play banjo, but I can no longer put new strings on my banjo. I just can't do the job anymore for numerous reasons. Fingers don't do what I want, eyes don't see like I want, and I forget what I'm doing if I get up to go do anything else with the intention of coming back (that's the cognitive side of my DLB). I now go to a music store and suffer the looks and questions about why can't I do it myself. Well, I would if I could, but I can't. I also have a lot of trouble playing the banjo, even though I used to be fairly decent at it. I have good times and bad with my playing, and I never really know which it will be until I get going. I think music is one of the things that make my life more enjoyable these days, particularly since my dementia has been going down a hill for a while now. I've had to move into a CCRC where I'm in independent living apartment, but I soon to move to assisted care, then memory care. I'm hoping the banjo and music will follow me on the journey.
  18. Good morning!!

    Good morning everyone. I'm very sorry for your loss Peace, I have had horses put down and I have found them passed away. It sounds like your Max died in a peaceful manner. He certainly lived long but I know that his death still hurts your heart. I am sure that he had a good life with you and that you did all that you could for him over the years. I hope he finds himself in a big open meadow with lots of green grass and clear water holes with warm sunshine on his face. Be happy with your memories of Max today and always. Big hug for you Peace, jb
  19. I’ve been taking Sinemet 25/100 for about four years. Some time after I started taking it, “on” and “off” times became very distinct. My last dose of the day is at 5:30 in the afternoon and this takes me up to bedtime at 10:00, when the medication starts wearing off. I get up at six in the morning, so that’s almost 12 hours since the last dose the day before. The odd thing is that when I wake up I’m very much “on”, and this lasts for one to two hours. I feel almost normal, like in my pre-PD days. From what I’ve read on the forum, this is completely the opposite of what other people experience – they are off when they wake up and need their meds to to make a start to the day. Does anyone have an explanation for my “reverse” condition, and are there others who have the same experience? Somehow I seem to manufacture dopamine while I’m asleep.
  20. New guy here - a journey I'd like to avoid

    Hi guys, Looks like I'm definitely headed back to my primary care doc and an then to an MDS for a second opinion. I'm not liking the way things are progressing. I've developed a resting tremor, and my hand is super stiff. Feels painful and cramped like I had been squeezing something for hours. -S
  21. Approved for DBS

    Thank you all for your responses. As I told my MDS, if we were talking about a bypass surgery I wouldn't be worried all that much - the worst that can happen is death. But when working on my brain, I might not come out of the O.R. the same person that I was when I went in. The reason my wife can't get Tuesday's off right now is because that is the day that she teaches clinicals for nursing students. It's a second job that she took on when I had to leave work, and it's the only day of the week that she works for the university. She is under contract for the entire semester. I would love to be able to check out other DBS centers, but I cannot see any way that we would be able to afford that. Besides, I feel pretty confident in Vanderbilt's doctors, just not their support staff. As seemingly disorganized as they are right now, it concerns me about the prospects of getting the follow-up care that I will undoubtedly need access to in a reasonable time-frame. Again, thank you for all of your comments. I will continue to ponder this over the weekend and hopefully make a decision the first of the week. Sincerely, Kevin
  22. Approved for DBS

    Kevin, if you’re not comfortable I would postpone the surgery. Dave
  23. Pain Meds interaction w/PD Meds

    Stump, I'm glad I could help and if you have anymore question, you know where to find me. Good luck.
  24. Approved for DBS

    Obviously you're perfectly able to make up your own mind. But here's my take. You've been approved, so clearly you meet the risk and severity of PD guidelines so the surgery is probably likely to do you more good than harm. However, you have some scheduling issues that are complicating matters. I would probably ask to meet with your MDS and get her take on what is going on. If they've had some turnover it might be wise to postpone for a few months to let the new people get into the swing of things. Also, that would let you discuss scheduling issues between the surgeon and your MDS and see if you can get something figured out. Plus that extra time might give your wife an opportunity to see if she can get a Tuesday off. I know you said she "can't" get that of the week off, but with enough advance notice, and really good reason (i.e. going to your BRAIN SURGERY consultation) if her boss is still unwilling to work with her I would consider alternate employment options. I don't think this is necessarily a reason to abandon DBS. But it is a reason to pause. And it might be a reason to go with a different neurosurgeon/center. You need to have faith they will be competent for the whole range of things you're going to be depending on them doing well. Everything from initial consultations, to the surgery itself, to the aftercare, to the programming. If you aren't supremely confident with that whole package then don't proceed. Even the very best surgeons have complications, and you want to know that your risk of that is as low as possible, and if you do have complications that you are in the best possible hands to mitigate those problems. Going into it with less than total faith is just asking for something to go wrong. I know it's far less serious than DBS, but I had what I thought might be a recurrent hernia. Turned out not to be that, but when I got a referral to a surgeon to get it checked out I specifically demanded a different group from the last time. Why? Although the surgery itself went well (and even the new surgeon said it looked like a good job when we reviewed the CT scan) I had no faith in that first surgeon or the group he worked with. After that last surgery they messed up my prescription paperwork not once but twice. And the only reason I think the 3rd time they got it right was my surgeon was gone for the day and the top boss of the surgery department had to fix it. That left me without any pain meds for 7+ hours and I was literally screaming in pain by the time my wife finally was able to get my prescriptions filled and get them to me. As a result of that I have zero faith in that surgeon (and, thanks to a previous mistake I won't detail right now just for time's sake, the rest of that group too).
  25. Boy am I new to this

    I do the PWR program.... love it
  26. Pain Meds interaction w/PD Meds

    Thank you for that extremely thorough response. Can't say I love the answers, but that's not your fault, and I'd far rather get the complete truth than anything else. As it turns out, I'm going to avoid surgery for the time being. The issue was not a hernia after all. However, as part of the investigation they did a pelvic CT scan, and that revealed a high likelihood of another hernia on the opposite side of the first one developing at some point. So, it may be necessary to have surgery for that, but there's no telling if that's weeks or decades away. I'll hope for decades.
  27. Approved for DBS

    You can’t undo this surgery and it’s good and bad effects. Don’t do it with second thoughts about it. You seem like you are considering it for pressure. Your body and mind will tell you when you really need to consider this surgery. It’s not a marathon. So don’t rush. If you wait few more years, they will likely have more advanced dbs devices and implantion techniques by then. You can also research and learn a lot by then about good and bad side about dbs. Some thing to think about. You might even be able to get the dbs implanted by a more experienced dbs surgeon who has implanted hundreds of such devices. You will have time to research your doctors and dbs team. Get more second opinions from other dbs centers. Sierra has an excellent dbs team in Denver. UF Florida is good too.
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