Helping Those Who Care for Parkinson's Patients
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This has been going on for awhile, but I can't much tell if my husband is "on" or "off" anymore. He just always seems off. He has asked our neuro to increase his sinemet dose many times, but our neuro won't do it because we have such a hard time with delusions and hallucinations and more sinemet will make that worse. I get that, but am just wondering: does there come a time when it doesn't seem to matter if the meds are taken on time or in the right amount, or at all? At our last appt. I made the comment that it didn't seem to make much difference when I gave my husband his meds, and our neuro just nodded his head. I didn't want to ask in front of my husband because I am thinking things get to a point where the meds don't help that much, if at all. But then why give them? And what can we do for our PWP when this happens? It is so hard to watch my husband just sit his days away. It bothers me more than him, and I am trying to deal with that. I'm just wondering if others have experienced this, and what can be done, thanks 
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My MIL took meds at specific times until she passed...22years. It was like clockwork and never changed, even in the nursing home. I really have no idea if the meds lose their effectiveness, but I do know that they calm down Carl’s tremors. I think, like you and others here, we do as our neuro recommends, afraid not to do so. Maybe this harkens back to a statement our beloved neuro gave us the first time we met with him, “I am going to keep you at the lowest doses possible, as long as possible. Unless you evidence a need in front of me, you two will need to be completely honest as to how well the meds work for you. Only then can we decide what is working and what is not, because over time, Sinemet, in particular, often becomes less effective.” |
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It's really not a case of Sinemet losing effectiveness as the progression of the disease. P.D. marches on more and more brain cells die so less and less dopamine is produced. What dopamine is left plus from the sinemet is routed by our brain first to our autonomic nervous system.To keep breathing, circulation going through the heart Trying to keep the body alive. Wow, I just had an epiphany ... Thanks for posting this! By answering this I've kind of grounding myself. Let me explain there are dark clouds gathered around my Friends home. One of his sisters called me last week...Al you better get up the see Tom! Why what's up? Hospice has been called in he doesn't have long. He hasn't eaten in a couple of weeks and is drinking sips of water now and then. Turning from shock and answering this post it is his body?brain? shutting down the digestion process in effort to keep heart running and lungs functioning. His hunger (alarm or urge) has been turned off in a futile effort to keep him alive. Toms had Parkinson's about a year longer than I have. We were partners in work, gas testing and repair weld then welding large transformers. Early in this disease we were atypical patients I think we fished in canoes (very unsteady craft which drove our Neurologist nuts. ) We snuck into apple orchards and swiped apples. Drove when we really should not have narrowly escaping the police a few times. Well I've gotten way off track with answering the original post thanks for putting up with this. It must have had to come out because it did. And I feel a little better getting it out. I dread the call that's coming. For 34 years we've had each other knowing a phone call or short drive away we had someone who understood. Damn I will miss him. |
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I am so sorry, Al. I can't imagine how hard it must be to have PD, and then to face losing your dear friend. I do thank you for your explanation, and it makes sense, except that, if sinemet ultimately loses its effectiveness, either because more brain cells are gone or some other reason (the brain gets desensitized, perhaps?), then why do neuros keep scripting them for advanced PWP? My husband gets all the nasty side effects but not much of a benefit, grr. |
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| Lurking, the Sinemet acts like dopamine. Years ago houses had fuse boxes electricity came into the house into the fuse box through the fuse into the circuit and on through wires to the tv, lights, refrigerator etc. once in awhile a fuse blew and needed a new fuse put in to fill the gap from outside wire to inside circuit. In our brain dopamine is like a fuse in the fuse box it bridges the gap between synapses (end of the little nerves) if the gap isn't bridged then the impulse or order cannot complete the action. As less and less dopamine is produced more L-Dopa needs to be supplemented to keep even the basic functions going however just how much each person needs at this time cannot be measured I would guess the brain isn't desensitized but rather more sensitive to the Sinemet however a time comes when the side-effects cause more problems than help so we reach a limit. |
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| Al, bless you and your friend. May you both be comforted knowing you had/have each other. Been thinking about you a great deal lately. Hugs and love, Jane and Carl |