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Everything posted by christie

  1. I find the new forum quite confusing too! It's much more difficult to find new content/follow topics now. Not parkie-friendly...and, for some reason, I also find it kind of "uninviting", especially for new members. could be just me of course. Stephen is a very dear friend of mine, a sensitive, intelligent, amazing man, an excellent diagnostician/pathologist and a very talented artist (painter and writer). It would be a real gift to patients if he started practicing medicine again.
  2. @NN: None of us is a neurologist and we cannot possibly suggest any diagnosis. We are just patients, and nothing more. Our knowledge is based on personal experience alone. That said, from what I've read and what I've experienced myself as a patient, I don't understand why a diagnosis of MSA is even likely to a patient like you. 1)Datscans are typically positive in patients with PD-plus syndromes. You have had a series of normal Datscans arguing against the presence of degenerative parkinsonism 2)MSA is typically and in the overwhelming percentage of cases a rapidly progressive disease; most patients are bed or wheelchair-bound within the first 5 years. ALL functions are severely affected, including the ability to talk, write, communicate. Thankfully, you don't seem to share none of these aggressive features. 3)MSA responds poorly to levodopa. Levodopa response in MSA patients is typically medium at best and transient. Any patient responding well to this drug after 4+ years of treatment is highly unlikely to have MSA. 4)MSA is characterized by severe symptomatic autonomic impairment. That's the reason MSA patients can't stand up, walk, perform normal activities. Subclinical evidence of autonomic dysfunction, documented by diagnostic testing, does not suffice for a diagnosis of MSA, and is non-specific -found in many neurological and other diseases. I have used the term "typically", because it must of course be emphasized that there are exceptions to the above clinical presentations, with slower progression, better response to levodopa and "milder" symptomatology, but, again, I highly doubt you fulfill the diagnostic criteria. NN, I really hope you don't have MSA, I don't believe you have it, and urge you to ask for another opinion from a MDS. I remember that both you and your husband have a positive history of Lyme. Has neuroborelliosis been ruled out? (now, THAT's a diagnosis almost impossible to pinpoint..).
  3. NN, I think you need to get a second opinion. Datscan is highly unlikely to turn abnormal after a series of 4-5 normal results. Anyhow, Datscan cannot differentiate between PD and MSA (It is positive in both diseases). I'm sure you neurologist is great and highly experienced, but even the best doctors make mistakes. Some doctors don't easily change their opinion/diagnosis, despite all evidence to the contrary.
  4. You are much more than welcome sweetie. You are one of the few people -thankfully without PD- who can understand how we feel. I'm sure you will be of tremendous help to many parkies (and non-parkies) cause you are empathetic, kind and knowledgeable. Please stay among us and be our friend. Share with us your fears and thoughts. You don't need PD to be one of us. You already are one of us. Christie
  5. Datscan is typically (in the overwhelming majority of cases) positive not only in PD but also in PD-plus syndromes. So, a series of negative Datscans may strongly argue against the presence of degenerative parkinsonism in general (be it typical-i.e. idiopathic PD- or atypical- i.e. MSA and other PD-plus syndromes). Nothing is 100% accurate of course. I just wanted to point out that, theoretically, chances of a MSA diagnosis in a patient with negative Datscans is very very small. Good luck NN!! Keep us posted on the final diagnosis!
  6. Gardener got it right!! Since NFl levels are within the normal range in patients with Parkinson's, this blood test is NOT useful for the diagnosis of Parkinson's disease per se (i.e. differentiation of PD patients from normal subjects) . However, it may be of use in the differential diagnosis of PD from atypical parkinsonism (PD-plus syndromes: MSA, PSP, CBD).
  7. It's always nice to know that your fellow patients care for you and want to help you (aside from arguments, disagreements or theoretical discussions). If a fellow patient showed that kind of interest for me, I would more than appreciate it, and of course make sure I showed this appreciation to him/her, even if I disagreed with his/her views.
  8. I'm happy for you Patriot. Remember, I only want the best for you. I just think you are needlessly depriving yourself of a very effective and relatively safe drug. I support 100% your decision to refuse taking a drug (Mirapex) which has made you feel worse rather than better in the past, but levodopa is no dopamine agonist. It is much more powerful, and its strong effect is not accompanied by the nasty side effects of DAs. That said, if you insist on following the no-drug route, I will be rooting for you.
  9. Ups! Sorry, I didn't notice the date of the post. I only want to help Patriot, that's why I'm encouraging him to start levodopa. I'm convinced it will help him much more than he can imagine. Plus it will only augment any other positive effect, of exercise or cannabis.
  10. Sorry to go off topic for a while, but this is important... Patriot, I admire your perseverance and power of will to maintain a demanding exercise regimen, with obvious, multi-level and undeniable benefits not only for your PD but your health in general. However, I also think you are over-dramatizing the potential negative effects of levodopa- a drug you have never even tried!- while under-stating and grossly overlooking the effects of the disease. Falls, even if decreased in frequency, are an alarming sign that you should have started levodopa treatment. I don't think there's any other way to look at this. Levodopa will only help you feel better, exercise more and derive increasing benefits from your exercise. I've been on levodopa and Azilect for the last 4 years, starting 3 years after my initial diagnosis, and feel 10 times better than before starting meds.
  11. A few days ago I was talking to a colleague, after a really exhausting day at work...I told her "you don't know how tired I am" and she replied "yes, I DO know", by emphasizing the DO part, only because she had done the exact same thing and she was "tired" too. I didn't bother to start explaining her anything (and yes, she does know I have PD).
  12. "Describe how you feel to someone without Parkinson's". 1)Great question! 2)Describing how we feel to someone without Parkinson's is impossible. Non-parkies simply don't understand, CANNOT understand.
  13. Hi everyone! Although i'm not from the US and therefore not familiar with the political situation in your country I would like to say that , from an "objective" point of view, I find immensely strange that Clinton and Trump were the politicians chosen to represent your main political parties for the presidential elections.. Maybe you should wonder how you got to this point? Why did you have to choose between bad and worse for such an important political position. The whole world will suffer from this, not just you. (I can only guess this is a topic highly discussed in your part of your world, so my apologies if the answer to this question is obvious...I acknowledge my ignorance on this matter...) As for the political discussion in this forum -and any other discussion on topics other than PD.... PLEASE let's start talking about something other than PD for a change...We are not just "parkies"...We are so much more. A new sub-forum for general discussions- not related to PD- would be great! If you agree, we could make a "formal" request from the administrators.
  14. Watch for deer tick bites!! More about that later...
  15. Hi, everyone! Great replies! Well, first, there's nothing "typical" with Young Onset Parkinson's...Late onset PD follows a more typical course...but, again, this is a VERY individualized disease... Waywrd1 is correct, YOPD tremor is faster than the typical PD tremor... As for "regular" neurologists, they are not fully qualified to diagnose and treat YOPD. If possible, always prefer a MDS.. It does sounds like dystonia.. mild or severe. And typical of PD, since it is not fixed... Fixed dystonia -one that doesn't subside with voluntary movement- is NOT typical of PD. Typical PD-related dystonia occurs mostly at rest...Just like most secondary dystonias.
  16. I love that drawing too!!! ingenious and SO funny...cracks me up every time I see it. Peter is an amazing artist. And his PD-inspired blog is fantastic!
  17. I doubt they noticed anything...People in general don't care that much about other people and are not that attentive to details...Or at least not as attentive as we think...Worst case scenario they thought you were tired or distracted or that you had one too many martinis... (OK, the last one might be worse than PD... ). PD starts to really show in public view only when it's fairly advanced...Until then, only those who knows us really well -close family, particularly spouses, and friends- can tell when we are "off"...
  18. PD-related depression may be: 1)Situational/reactive depression, occurring as a reaction to the diagnosis and the significant challenges brought on by a chronic progressive incurable disease 2)Clinical depression, directly resulting from the disease itself -more specifically, from an imbalance of various neurotransmitters controlling mood and behaviour-other than dopamine- which are also dysregulated in PD. 3)Situational or clinical depression not related to the PD diagnosis or the disease (simply coexisting with PD). Remember that PD patients can get depressed for other reasons (death, divorce, etc), and that they are particularly prone to depression, due to their faulty brain chemistry... From a therapeutic point of view, it is important to distinguish between reactive and clinical depression, because the latter should be treated more aggressively, with a combination of measures including counselling, exercise, lifestyle changes AND drugs. The stigma associated with depression and almost all mental diseases is the reason why some patients prefer to be diagnosed with a chronic, debilitating and incurable disease like PD or multiple sclerosis than with a mild and treatable psychogenic disorder, such as anxiety or depression.
  19. All forum members have the right to have an opinion. This opinion doesn't necessarily have to agree with the opinion of the person who starts a thread or asks for advice. A "candid' discussion is supposed to be open to ALL opinions, both positive and negative. As for arguing, there's nothing wrong with that either. I also fail to understand why telling someone that he/she is not too sick or disabled, or at least not as sick and disabled as he/she may think is such an abomination. An insult, bullying, and all the rest. in my humble opinion, NN is not stage 3 or 4, despite her impressive symptoms when "off". She is physically able to do many outdoor activities -including motorcycle riding- while mentally she is certainly on the sharp and overactive side. Chances are she may never get to an advanced PD stage, considering her repeatedly negative Datscans, strongly arguing against the presence of neurodegeneration. This is good news. And should be received as such. I may be right or "wrong", obviously this is impossible to know. As for bullying it goes both ways. I only wanted to help NN, by giving her more a far more useful (aka "negative" according to some members) feedback than my approval of her plans for a future disability that may never come , and I was personally attacked beyond any reason or meaning.
  20. you cannot plan for your future disability. the future will bring whatever is in store for you and you can't control it. You can only control your life now, and your quality of life now. you have the tendency to overdramatize your condition. As for your disease stage, since you are still able to ride a Harlem, you already know the answer to your question.
  21. NN, you wrote you are stage 3-4. In my opinion you are not, and you couldn't possibly be, since you were diagnosed only three years ago. From your own descriptions of your daily living, you don't sound like you are in such an advanced stage either. This is good news. Also, no good can come out of "rehearsing" our future disabilities. First, because nobody knows if and what will exactly happen to them. PD is a highly individualized disease and every patient is practically living a different experience. Second, because we must live our lives in the present and enjoy what we have for as long as we have it, and in order to do that we must put PD in the back burner of our everyday life. Getting prepared for the worst won't help much with that...Third, because there's nothing we can do to change the future.
  22. NN you are nowhere near stage 4. I think most of us with PD tend to overestimate the severity of our disease. If you asked your neurologist he would probably tell you you are stage 1-2.
  23. From what I know, PD symptoms are NOT better in the morning, in fact, they are almost invariably worse, especially in patients who are already under dopaminergic therapy. There is a PD-mimic, levodopa-responsive dystonia (dopa-responsive dystonia), which is primarily characterized by diurnal fluctuation of symptoms. "Dopa-responsive dystonia (DRD) is a rare but highly treatable form of genetic dystonia. It often responds very well to regular doses of Levodopa (a synthetic form of the brain chemical, dopamine). In many patients onset is characterised by an abnormal, 'stiff-legged' manner of walking, with upward bending of the sole of the foot, or turning of the foot outward at the ankle and a tendency to walk on the toe. DRD may also extend to involve muscles of the arms and trunk. In addition DRD is typically characterised by signs on Parkinsonism that may be relatively subtle. Signs may include slowness of movement, stiffness and resistance to movement (rigidity), balance difficulties and postural instability. Many patients experience improvements with sleep and are relatively free of symptoms in the morning, developing increasingly severe symptoms as the day progresses. Accordingly the condition has sometimes been referred to as 'progressive hereditary dystonia'. It is a common characteristic that symptoms will fluctuate and worsen as the day progresses".
  24. Hi, and welcome to our forum!! Well, truth be told, Parkinson's is a damn good career-killer...But life goes on, and it can be good, even with Parkinson's... You mentioned that you have been prescribed a variety of medications, but none seems to have any effect. Also that Sinemet seems to be "slowing the progression". And that you are better able to tolerate symptoms. So, i'm a bit confused...Is levodopa working for you or not? If Sinemet has had no effect on your symptoms then the diagnosis of PD is not fully established, at least not yet. Also, none of the drugs for Parkinson's has been shown to modify the progression of this disease. PD treatment is purely symptomatic -to make us feel better- and cannot slow down neuronal degeneration in our brain. Dopaminergic drugs are basically masking the symptoms, thus allowing us to live our lives as normally as possible. Far from a cure, but definitely a relief... When did you symptoms begin? Drooling and slurring of speech are rather uncommon in a newly diagnosed. In order to function as better as possible in the society you must put PD in the back burner.. Of your mind and your life.. I know it's difficult. I know that PD is a constant reminder of its presence. But you must try live your life as fully and as normally as possible, without feeling like you are disabled, different or, in any way, "special". Everybody's got something. We got Parkinson's. Not the best but certainly not the worst thing that can happen. Also, you should get rid all this needless guilt and social embarrassment for your symptoms!!! We all get a lot more self-conscious when our disease starts to "show" more in public, but remember that most people are not THAT interested in other people in general and don't pay much notice to our tremors, our dyskinesias, drooling or whatever is going on with our bodies. As for those who seem to give you the looks of curiosity, pity or whatever, well, the problem is theirs not yours! And you don't need a bodyguard, or a caregiver, go out there alone and don't give a damn about anybody! I'm well into my sixth year with this disease, and as time passes I care less and less about what other people think. Stay tuned..This is a great place for parkies...
  25. Response to levodopa depends on several parameters, including the severity of symptoms. Worsening of symptoms translates into worse response to (the same dosage of) levodopa and need to increase dosage. Reproductive age women with PD may notice worsening of symptoms AND a suboptimal response to levodopa a few days before and/or during menses. Bottom line is, this is something "normally" anticipated, and common for many female PwP.