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11-15-2010, 07:03 PM | #51 | ||
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Matthew -
My information, for what its worth: I was one of those for whom generic Sinemet did not work - I would try once a year and....NOTHING. Finally, after about 5 or 6 years, for some reason, it seemed to start working. Maybe I was just running out of money. Anyway, I've had this wretched condition diagnosed since 2004 and take 1/2 mg. Mirapex and 1 cd/ld 4 or 5 times a day (my new neuro is urging me to cut back to 4 times a day, and many days I can do that)....Your mother's dose level does seem high to me. Best wishes, Sasha |
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11-15-2010, 07:12 PM | #52 | ||
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Just read your last post and, yes, incontinence of any kind can accompany PD - or back problems, for that matter, such as herniated discs or nerve damage....
And, for what it's worth, my first diagnosis was ALS. Labels can be very, very scary and sometimes it takes quite a while to get things sorted out. Good luck on this very difficult journey. Sasha |
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11-15-2010, 08:12 PM | #53 | ||
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Sounds like your mom had a pretty good day. Hopefully tomorrow will be even better. All PWP have good days and great days, overdoing on a great day often leads to a down day the next day. As for reading all those scary diagnosis, stop. If I read about Parkinson's Plus, I have symptoms , before Dx I thought I had ALS. The fact that your mother has little to no tremor means nothing. I have no tremor. Urinary incontinence is a battle for PWP - often subject to urinary tract infections due to inability to empty the bladder completely. UTI often do a big number on PD symptoms- making them much worse until your UTI is treated. Every 6 months I see my PCP and have my urine tested for infection which can go unnoticed. Bowel problems is usually related to constipation - so lots of flluids and fiber.
You are a wonderful son and your mom has done her job well in raising you. Not all children of PWP are so attentive. Keep up the journal documentation. Take Care TG |
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11-16-2010, 08:06 AM | #54 | |||
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Senior Member
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First, I apologize for not replying earlier. I have been posting in these forums for over a decade (back to BrainTalk previously).
Secondly, I am so jealous that your mother has a son as concerned as you. Don't get me wrong, I have 3 grown kids who care dearly, but would never try to research like you have done for your mother. Thank you for that refreshing act of concern and love.. Third, you have two wonderful people who have answered you - Lindy and Laura. Both have given you great advice. I was talking with someone just yesterday about how I saw a connection with trauma in one's life (emotional mostly) and PD. And like the ladies said, this does not necessarily mean true Partkinson's disease. Alll sorts of things could have initiated the parkinsonism: a new medication - an interaction with a med she was already on - anessthesia (it stays in your systgem longer than we think), and, of course, true PD. Time will tell. Oh, and I left off another cause of parkinsonism - anxiety. It sounds as if your mother has suffered from some panic attacks - I have on several occasions, andn it really throws youro nervous system out of whack. The advice you have been given is not from professional training (we cannnot replace your physician's advice), but we speak from years of experience. My final word of advice is try not to get excited to the point that you fill your mom with 2-3 new medications. Noooone mix well withh our cocktail of PD chemicals (or lack of) and man-made chemicals. Go slowly in treating her - giving one med a minimum of 2-3 weeks to see what it does before introducing another. Best to you. Keep being the good son that you are. Peg PS I did not realize how many pages this thread had - my comments were based only on the first - but the advice still stands. Sorry - skimming again! |
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11-16-2010, 06:47 PM | #55 | ||
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Junior Member
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Hello Ladies,
Thanks so much for kind thoughts and words, especially the encouragement. All of the members of this forum have been great, and for that, I thank you! I spoke to my mother around 5:00 EST again this evening. When I asked her how she felt today, her response was "pretty good". When I asked her if she felt better today than she did yesterday, she said yes, but her mobility/walking is still lacking. She said she took her 6:30 AM dose around 7:00 AM this morning because she slept a little later. She said her second dose at 10:30 AM seemed to work better than her first dose at 7:00 AM, and that her third dose at 12:30 PM seemed to work better than the second dose at 10:30 AM. She mentioned that she kept busy today by paying bills, writing Thanksgiving cards, etc. She has been bound to one floor in the house for quite some time because she has refused to allow us to put a stairlift system in because she was convinced she was going to get better much quicker than anticipated. After seeing the specialist last Friday, my mother now agrees that she wants the stairlift. My father ordered it on Monday and it is being installed on the 30th of November. I also thought her voice sounded a bit stronger as I thought it did yesterday as well. She has been easier to understand on the phone the past 2 days, as there is less mumbling and she seems to have more fluid thoughts. Thanks again ladies! Matthew R. Smith |
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"Thanks for this!" says: |
12-04-2010, 01:21 PM | #56 | ||
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Junior Member
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Hello All,
I wanted to provide you with an update on our situation. We have finished the doctor's recommended 3 weeks of the new medicine schedules. My general conclusion is that some days my mother sounds stronger and has more personality in her voice, but her walking and mobility has not improved at all. My mother has been having some serious problems with her bowels since she has been on the new 3 week medicine schedule. My mom spoke to her new specialist doctor in between week 2 and week 3 and told the doctor everything I just mentioned. The doctor mentioned that one common side affect of the CD/LD is bowel and stomach problems, but the doctor also admitted what you ladies have been telling me, that my mother's 3 week medicine schedule presents an extremely high dose of CD/LD. The doctor recommended that my mother remain on the Week 3 schedule until her next appointment with the doctor on December 14th. The doctor mentioned to my mom on the phone that due to her lack of response to this high of a dose of CD/LD they are leaning towards the fact that this may not be PD. That is sort of where we stand at this point. Thoughts or opinions? Thanks, Matthew R. Smith |
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12-04-2010, 11:16 PM | #57 | |||
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Hi Mathew,
I just want to second what Laura said about how fortunate your mother is to have your interest in her condition. I hope as a young 26 yr old this all inspires you to take really good care of yourself too. Good luck with it all. Quote:
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12-05-2010, 02:15 AM | #58 | |||
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In Remembrance
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I have had this neurodegenerative illness since my boy was in kindergarten,
I am soooooooo sorry your mom is in pain, I never know what started this parkinsonism, but gdnf by amgen was a great hope, but unkindly they removed the meds from the people w/ pd in clinical trials does your mom go to a movement disorder specialist, who knows what to do for your mom's pain w/ back pain... my sciatic pain - hot knife horrid pain, is probably not near as much as your mom has to deal with, I was just given gabapentin - for nerve pain/ also used as an old epilepsy anticonvulsant drug... you both are in my prayers...dear one... for more information - go read at the national parkinsons foundation online... or try to spread the news info wanted- helen mirren -had a great article its time we all understood what PD is - blessings to you and your mom Quote:
__________________
with much love, lou_lou . . by . , on Flickr pd documentary - part 2 and 3 . . Resolve to be tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant with the weak and the wrong. Sometime in your life you will have been all of these. |
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12-05-2010, 07:41 AM | #59 | |||
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Senior Member
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Matt,
First, I want to say what has probably become obvious...you've touched a lot of us moms out here; especially those who have sons. Your dedication and desire to stay informed is really incredible and of course, that reflects back on your mom. I know all families love one another but rarely do I see it expressed this way. Kudos! Anyway, all mushiness aside, it sounds like your MDS is on the right track. If she doesn't have PD, that dosage would not hurt her, so it is a relatively safe way to put a check mark in the "unlikely" PD column. Here is what I would do: look through your journal entries and prepare a table based on the different dosage levels of Sinemet; and create column headings for symptoms and check off each that responded to various levels of levodopa. Note: any things that seemed to worsen upon taking a dose. Take back to your doctor and ask if it could be something related to her surgery? She had spinal surgery, correct? Since her symptoms emerged after that I would start to question possible neurological consequences. We all have noted that PD can emerge after major surgery. However, most people with full blown PD show dramatic responses to levodopa. Still all this tells you only what she DOESN'T likely have; it's a diagnosis or undiagnosis by exclusion. It happens with at least 30% of us, and that is a pretty high number. Now maybe is the time to push for a PET scan? These roughly measure dopamine levels in the brain but generally used in research; one is used routinely in Europe, while here we are expected to pay out of pocket. If you can argue that it will cost just as much to send your mom to four more doctors who still won't be able to tell her what is going on, then they may cover it or at least par of it. You'll be able to confidently eliminate PD, and move onto getting your mom a more accurate diagnosis and a treatment that works for your mom. Laura |
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12-05-2010, 08:26 AM | #60 | |||
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Senior Member
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Matt,
I was re-reading your initial posts. Mainly interested in your mom's presenting symptoms. It struck me that it sounded like an atypical Parkinson's which have different pathologies and sometimes different treatments; this also know as lower limb parkinson's as it it effects mostly gait. There is no tremor, but masked facies and cognitive changes are noted. It is also known that the condition can be refractory to traditional PD meds. Here is a fact sheet: http://www.parkinsons.org.uk/advice/...kinsonism.aspx Did your mom have an MRI? On second thought, I would insist on that PET or SPECT scan. |
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