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Topic Oh damn it turned into a kinda rant! Go to previous topic Go to next topic Go to higher level

By LOHENGR1N On 2012.10.22 00:18
I don't know the answer to some of your questions. However I will give you my take on what might be going on. Neuropsychological testing would seem to suggest something neurologically is going on or such an event occurred to be the cause of a condition or on going problem. Thus the testing would be done to discover if one could the event or malfunction. With Parkinson's Disease many Neurologists take into consideration the progressive nature of the disease and the fact there is no cure or proven delaying medicine or therapy available. Once We are diagnosed with P.D. our condition becomes "guarded" or to be watched and observed. If introducing psychological drugs into the mix many interfere or interact with the anti-Parkinson's drugs causing a plethora of troubles. Not unlike DBS not all can or do benefit from it nor would some even be considered. So with the culprit of the cognitive trouble most likely being the underling disease the tests wouldn't provide a cause or if another cause were to be found treatment could be detrimental to the patient and their treatment of Parkinson's. The problem is we are programmed in our society that medicine will fix anything. If it doesn't or cannot then it must be the wrong medicine or the wrong treatment. Yes at times mis-diagnosis does happen but this is why many spend money on herbal cures or exercise equipment claiming to cure or slow the spread of our disease.

We see it here on the forum someone will post a "new way to stop or reverse Parkinson's" only to try then post in a couple of weeks or months panicked questions of what's going on or how come suddenly a change is occurring in a loved one? When if they looked back there might have been a dietary change or supplement they just tried or instituted which isn't helping but in truth hurting. Many will try these snake oils more readily than give the prescribed medicine a chance to work, thinking that out there is the cure that a poor village doctor discovered years ago and only now is it being shared with the world. Or the brain cells don't die in Parkinson's now, we just have to get them healthy with this or that supplement (which you can buy for only $$ ......isn't your loved one worth $$.

And We have Us self centered patients only caring about Ourselves. Now these feeling arise throughout care giving and it is overwhelming to say the least! Well it seems a miscommunication issue at times. You want Us to feel better and be proactive with our disease. Okay I'll give you it is with our best interest in mind you do. As our disease progresses we at times are using all our pro activity to get out of bed and dressed, getting moving around the house. We patients have at times tried to tell you what it feels like, like walking in mud, having weights attached to our arms and legs. To go from medicine working to trembling and unable to move in the blink of an eye etc. We still can't give you an accurate picture of it no matter how we try. It's hard to communicate it. We struggle between doses to do what we can get done. At times we don't have the energy to explaine what or why we're doing something let alone getting a "workout" in. We explain and then explain again and yes at times it seems we too are speaking to deaf ears. Sorry if that sounds harsh but it does seem it at times.

Some things that seem easy to the observer are misleading. As an example I'm sitting in a chair. A well meaning aide may say this is a perfect time to do the sitting exercises! Sound logical right? Wrong. I'm sitting in the chair because I'm out of balance is off and I just made that chair! Last thing I want to hear is how I'm supposed to squeeze my butt cheeks together 10 times while you count or lift a leg out straight at the knees.......I'm doing all I can not to topple out face first on the floor right now thank you so very much and if I'm succeeding I'm ignoring them because can't explain it just then or I will lose concentration and fall out of the chair! Yes these are low impact exercises but they are exercises none the less and should be tackled when meds are working at peak time But We'd like to maybe go to a store at peak time or try something with you in the yard or house to feel of help only to then be told we should do this exercise in down time. We fall asleep watching TV, eating, driving and talking to you not because we want to because we're exhausted trying to get through the day. Yes this is a tough disease and I can't imagine having to stand by watching Us losing our fight every day any more than you can really imagine how it is living with this disease and losing more and more of yourself every day. Thanks for listening to my rant, bed soon and it'll be better tomorrow or we'll find a better way to cope tomorrow. Take care, best of luck and hang in there

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