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The development of PD symptoms varies SO much that I keep wondering if it really is one illness, or like the "common cold" is a group of vaguely similar illnesses.Perhaps it's just just that we all have slightly different brains (we must do or you and I wold be the same person), so react differently. Amanda > Date: Sat, 5 Oct 2013 13:28:54 +0000 > From: [log in to unmask] > Subject: Re: So many questions > To: [log in to unmask] > > Hi Michael. > > You'll find that this listserv is a real gem for information on PD. A number of people have great depth of knowledge and experience with PD and are really on top of the latest research and news. > > You will also find, as time goes by, that different people have very different stories about their journeys with PD. Dopamine is somewhat ubiquitous and affects so many "systems" in the mind and body (not just motor-related)that treatment regimens can vary like night and day. This said, you will also find many "common denominators" dealing with PD: levodopa/carbodopa (sinemet, etc), rest, exercise and a sensible diet among them. Though sinemet is not the only medication that may be suggested, it seems to me that, as time goes on, it becomes the primary ingredient for treatment. > > On medications: beware of drug company claims. In several instances I have found that their claims regarding side effects are based on limited studies and/or ignore the effects of PD on how the meds may work (or not work). Seek out forums by searching on "Parkinson's and Mirapex", for example. You will find testamonials (good and bad) from the likes of you and me. It can be very enlightening if not frightening. > > You also asked about "alternative treatments" (accupuncture, marijuana...). I think you will find the traditional medical community very circumspect on these topics, first because, as mentioned above, different individuals respond differently and, second, because medical professionals, while not outright dismissing the possibility that alternative treatments may indeed be effective, cannot properly recommend treatment for which there is no or insufficient data on effectiveness, interactions and side effects. > > On doctors: I have found that my GP and other non-neurological-related physicians tend to treat my symptoms as if I didn't have PD. IN GENERAL, I believe that they do not understand the pervasive nature of PD and its many susbtleties as it affects both physical and mental well-being. I cannot really blame them for such possible oversights. PD is a tough nut to crack and much time may be required to fully understand its effects, a commodity that most doctors today are not afforded. I believe that the most successful approach (again, not for everyone) is a kind of team approach. First, find a good movement-disorder specialist. If that person is not local, then also find a neurologist who will take the time to listen and help you try different regimens to find what works best for you. Look into local physical therapy resources. I have found a PT specializing in Posture Restoration who seems to have a real gift in helping identify the assymetries that may be causing pain and stiffness, and prescribing exercises to help. Lastly, ask around about counseling for depression, anxiety and obsessive behaviors. These occur frequently in PWP (people with Parkinson's) and should not be dismissed. > > And, did I mention exercise?? Activity of any kind is very important... no, crucial in maintaining both physical and emotional health. It seems that repetitive motion (walking and cycling) are among the favorites. > > We are blessed in our part of Upstate New York to have a Parkinson's Support Group that meets monthly and features apeakers on a variety of pertinent topics. I strongly recommend that you and your caregiver (or, if you don't have one yet, your spouse or SO) look for one in your neck of the woods. PD can be very isolating. Being part of such a group has been very uplifting for my wife and me. > > Lastly, keep your chin up. It may be very hard some days, but there is good reason for hope. The awareness that has been generated and the new research programs have accelerated the progress in understanding the root causes of PD and new treatments (perhaps even a cure???) are, I believe, not too far away. > > Cheers. > > Roger Seymour > > > > ---- Michael Tentis <[log in to unmask]> wrote: > > Thanks for the responses > > > > Sent from my iphone. > > > > > On Oct 1, 2013, at 1:18 PM, Rayilyn Brown <[log in to unmask]> wrote: > > > > > > welcome Michael, you should be able to find some answers here > > > > > > -----Original Message----- From: Michael Tentis > > > Sent: Monday, September 30, 2013 3:56 PM > > > To: [log in to unmask] > > > Subject: So many questions > > > > > > Hi > > > I'm newly diagnosed. New to group. Has anyone tried acupuncture? Tai Chi? Qigong? Marijuana? > > > Is moderate alcohol use ok? I'd appreciate all feedback. > > > > > > Michael > > > Sent from my iphone. > > > > > >> On Sep 30, 2013, at 4:38 AM, Rayilyn Brown <[log in to unmask]> wrote: > > >> > > >> no hallucinations? it seems that when meds help t hey poop out over time or have bad sides > > >> > > >> -----Original Message----- From: Nic Marais > > >> Sent: Monday, September 30, 2013 2:20 AM > > >> To: [log in to unmask] > > >> Subject: Re: MJ fOX meds > > >> > > >> I'm not sure, but I think MJF also started taking Amantadine lately. > > >> > > >> Three years ago I could hardly walk in a shopping mall WITH a walking > > >> frame, and a wheelchair was glowing in the very near future. > > >> > > >> Then I started taking 2 X 100mg Amantadine daily, and we stored the > > >> wheelchair AND the walking frame! > > >> > > >> All my symptoms improved significantly for at least two years, and is only > > >> lately becoming a big burden again. > > >> > > >> Nic 61/19 > > >> > > >> > > >> > > >> > > >>> On 30 September 2013 05:35, Rayilyn Brown <[log in to unmask]> wrote: > > >>> > > >>> Does anyone know what meds Fox is taking that allow him to return to TV > > >>> after 20+ years with PD? > > >>> > > >>> The articles I’ve found don’t say. > > >>> > > >>> I haven’t seen his new show but my PD friend in Flagstaff tells me he is > > >>> seen running up stairs. > > >>> > > >>> I think this and Mt. Everest climbs give the public a false impression of > > >>> the reality of PD for those of us over 10 years into PD. The public likes > > >>> the “positive” view, but I don’t see happy endings in our future. > > >>> > > >>> What do you think? > > >>> > > >>> Ray > > >>> Rayilyn Brown > > >>> Past Director AZNPF > > >>> Arizona Chapter National Parkinson Foundation > > >>> > > >>> ---------------------------------------------------------------------- > > >>> To sign-off Parkinsn send a message to: mailto: > > >>> [log in to unmask] > > >>> In the body of the message put: signoff parkinsn > > >> > > >> ---------------------------------------------------------------------- > > >> To sign-off Parkinsn send a message to: mailto:[log in to unmask] > > >> In the body of the message put: signoff parkinsn > > >> ---------------------------------------------------------------------- > > >> To sign-off Parkinsn send a message to: mailto:[log in to unmask] > > >> In the body of the message put: signoff parkinsn > > > > > > ---------------------------------------------------------------------- > > > To sign-off Parkinsn send a message to: mailto:[log in to unmask] > > > In the body of the message put: signoff parkinsn > > > ---------------------------------------------------------------------- > > > To sign-off Parkinsn send a message to: mailto:[log in to unmask] > > > In the body of the message put: signoff parkinsn > > > > > > > ---------------------------------------------------------------------- > > To sign-off Parkinsn send a message to: mailto:[log in to unmask] > > In the body of the message put: signoff parkinsn > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: mailto:[log in to unmask] > In the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn