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frankthomas

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About frankthomas

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    Grand Rapids, Michigan
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    Loving and helping my wife navigate a dual diagnosis of PD and LBD Dx'd in the Fall of 2014.
  1. Thank you all for your input. A few more observations. She did the Big and Loud program and that restored her posture and gait and those issues have not returned. She is still doing well in that regard. Her only real symptom is this leg pain. No motion restriction at all. So is it really even PD? But Sinemet really does give her relief. Sometimes it just takes more if she gets behind the power curve so to speak. And as MiracleSeeker asked, "If she was doing good, why increase her dose?" He said that that she still had some stifness in her hands and arms and evidence of slight tremor though we've never noticed it. Something I've not mentioned is dx of LBD also even though some doubt has been cast on that. But certainly some dementia. She Just retired 2 years ago because of cognitive changes. The last year she has had real cognitive decline where she is no longer safe alone. She just gets too confused and scared. Also, what really seemed to start the down hill slide was when the MDS increased her sinemet last November he also started her on Aricept. That was a disaster. Took her off after one month and the worst time of sleeplesness and anxiety ever. She's never been the same since.
  2. My wife was dx'd last fall. Prior to that she had developed posture and gait problems. First appointment with MDS was months off and she was able to go through the Big and Loud program. It gave her back normal gait and posture. It was amazing. At this point still no do and no meds.she is feeling good. No real issues. Finally MDS saw her and quickly came to PD dx. So last October she started on one 25/100 sinemet every 5 hours. To cut to the chase, now she is taking at least one 25/100 every 2 hours around the clock. We try to keep it under 12 pills a day. She rarely has a full day without off time with her only real symptom of intense leg cramps and knee pain. Some days not too bad but lately it's been horrible. Today it took almost 2 hours and 2.5 pills to get her comfortable. My biggest puzzle is how she went from no pain and minimal symptoms last Fall and in just 8 months has almost daily debilitating pain and needs 12-14 25/100s a day.
  3. Dr. Okun, if I may ask you, my wife began PD gait and posture symptoms 3 years ago but no dx until September of 2014. A few months prior in July of 2014 she went through the Big portion of Big and Loud. It made major improvements to her gait and posture. Then September of 2014 she saw a MDS and even with all of the improved gait and posture was quickly diagnosed with PD. So she began Sinemet 25/100 3x a day and did well. She returned to the MDS 5 weeks later and even though there was improvement he increased sinemet to 4x a day. And added Aricept. After a bad 1 month trial of Aricept her anxiety sky rocketed and it was dc'd. However, she gained the symptom of intense bilateral achiness in the back of her thighs and knees during her off times. Her off time quickly increased to the point where just 9 months after her first ever dose of Sinemet, she is now taking twelve 25/100s every 24 hours. At least one every 2 hours she is awake with occasional extra halves and 1/2 pills every 2-3 hours she is asleep. Sometimes her leg pain is so intense it takes 2-2.5 pills to get her back on. How could she go from a time of no leg pain and no sinemet then in just 9 months be needing twelve 25/100s a day and that doesn't even give full relief. Could she be building a tolerance so fast or addiction that quickly? Thank you
  4. Thank you. Also wondering if increased exercise could help alleviate leg pain? She is currently participating in an exercise class twice a week and she does great. But we just purchased a recumbent stepper machine. Of course any exercise is good but wondering if her leg pain could specifically be targeted by certain exercise?
  5. Mike, that must be tough. My wife is taking 1-1.5 and occasionally 2, 25/100's every 2 hours almost around the clock. She seems to live from dose to dose and if leg pain (her primary symptom) sets in much before her next dose she gets very anxious. How do you deal with that frequency of dosing?
  6. My wife is on a regimen of Sinemet that I don’t think is sustainable and is consuming her. Do you have any recommendations or ideas on if and how this can be altered? Her only PD complaint is bilateral leg pain sometimes more severe on the right side. Specifically back of thighs and knees. A combination of achiness and restlessness. Prior to her DX she had many PD symptoms so the Sinemet has made a huge difference.. But her need for Sinemet 25/100 has progressed to nearly every 2 hours around the clock. 2 to 3 times a day she’ll take 1.5 or even 2 if she is having a lot of pain. She takes it every 2 hours from 7a-9p then at 12a, 3a and 5a. Any dose rarely gives her relief for a full 2 hours. The problem is she is so fixated on the next dose that it consumes her. She was dx’d with PD and LBD last fall. She’s been on a general cognitive decline ever since. But her Parkinson’s symptoms have greatly improved much to the surprise of her MDS who saw her this week and the last visit was 5 months ago. In fact he is cautiously doubting the LBD DX. He mentioned Requip but she does have occasional nonthreatening hallucinations. I am wondering if some sort of counseling therapy might help. Any ideas? Both her MDS and memory specialist are stumped. Thank you for taking the time to read this.
  7. I will read chapter 2 tonight! I just received the book recently. Are fluctuations typical of PD stage or can they occur at any stage? Are fluctuations such as I have described, an indicator of progression or otherwise clinically significant? She was diagnosed with LBD and I have noticed peculiar confusions increase in the last few months. Confusion around her meds. For example she began taking Exelon and is tolerating it well. I told her she needs to take it with food to avoid nausea. Last night she asked me if I could eat the food instead of her before she took the Exelon and if that woud work. She stated she was not sure how this all worked. She has been a huge football fan her whole life and could easily watch football all day. I can tell that now she watches but is not really engaged or "in the game". She could not tolerate Aricept as this caused extreme sleeplessness and just began the Exelon last week. I hope it makes a difference. Thank you Doctor.
  8. My wife with a dx of PD, has very minimal symptoms at this time. The first symptom she does feel during an off time is an achiness and or restlessness in her legs and knees that can become quite uncomfortable. When she feels this coming on, the first thing she thinks about is taking another Sinemet 25/100 immediate release even if it is not time for her dose. Interestingly, she will go through a period of a week or more where she has no off time. Dose to dose with no problems. Some weeks she may feel the need for her next dose just before she takes it. And occasionally it seems she is always waiting for that next dose and never gets complete the relief. First, is this leg pain a typical off time symptom? I sometimes wonder if this is related to PD or not. Second, is this waxing and waneing of symptoms typical? Thank you. And by the way I am reading your book and find it fantastic. Thank you for your work.
  9. My 66 yo wife was dx with PD this past September then LBD in October. We feel we are getting close to managing PD symptoms but to be honest it's more like we are managing withdrawal from Sinemet 25/100 immediate. She did not have the symptoms below before starting Sinemet. But my first question. About 15 minutes before her next dose of 1 tab she often complains of acheiness in her legs and a restless feeling that leads to anxiety. After taking a dose these symptoms subside 30 - 40 minutes later. Is this what is referred to as down time? My second question is what are some strategies in coping with this down time? Thank you.
  10. My wife did the Big portion of Big and Loud and it transformed her. It took her out of her hunched, dead arm shuffle and gave her back her normal posture and gait. But you have to keep working on it. But the 1 hour a day, 4 days a week for 4 weeks was well worth it. She will be going back for "tune ups"!
  11. Thank you for your response. The Aricept seems to have been a trigger for her symptoms to worsen. It was at lease coincidental. As I said, 1.5 tabs Sinemet immediate X3 a day was sufficient until she started Aricept. Now we'll try Exelon instead as she seems to be having rapid cognitive decline. We are getting a 2nd opinion on her LBD. I will seek a 2nd on her Parkinsons and the dosing as well. Thanks again.
  12. I would appreciate a comment regarding my wife’s Sinemet schedule and if this seems unusual or excessive for her stage in treatment. She was diagnosed with PD in September of this year and then LBD a month later. Currently she is taking Sinemet 25/100 immediate release. She takes 9-10 tablets per day. The first upon waking in the morning then one every 2 hours until 8:00 or 9:00 PM for a total of 7 tablets. Than 2-3 more through the night. Her neurologist has ok’d this but warns us not to exceed a total of 10 tablets per 24 hours. It seems to be working well for her but it seems to be a lot of Sinemet and the schedule dominates her day. Background: She recently tried 2 tablets every 5 hours times 4 a day but leg pain and restlessness was returning after about 2.5 hours which seemed to also drive some anxiety. On the current 1 tab every 2 hour schedule she occasionally has some leg pain and restlessness but it is manageable. She seems to need less in the evening and during sleep. The reason I am alarmed by this is that upon diagnosis of PD (9/14) she began the Sinemet 25/100 immediate release at 1.5 tabs every 5 hours X3 and she did great. No leg pain or anxiety. Minimal other symptoms. After the LBD diagnosis she added Aricept 5 mg x1 every morning but sleeplessness and anxiety caused her to discontinue that after a month around the end of November. Since the beginning of the Aricept everything seemed to change. After stopping the Aricept she returned to normal sleep within 2 nights. But leg pain, leg restlessness and anxiety continued until we reached this current Sinemet schedule I have described. Finally she seems pretty stable and comfortable. Thank you for any input. P.S. she starts Exelon 1.5 mg x2 a day for LBD next week and I am very concerned that this is going to shake things up again. But she is having some fuzzy thinking at times and hopefully this will help some and slow down the LBD.
  13. Musicman I checked out the beginning of your James Taylor medely. I will listen to the full video later. But wanted to say very nice playing. I love JT and his finger style is my favorite style. And Carolina is my favorite song of his and one of my all time top favorite songs. I'm a bass player and JT's buddy Leland Sklar has been an influence on my style. Love his playing.
  14. Thanks desperateinil and music man. It is immediate release.I asked the doc about the CR and he said he thinks immediate is best now.
  15. Thank you very much Doctor. She did have a swallow evaluation done a couple months ago. And yes this has been a sudden change. She will return to the same SLP so hopefully the baseline from 2 months ago will be helpful.