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13 comments:
I am a caregiver for my 68 yr old husband who has had PD for 8 yrs. Retired Strawberry farmer.
My husband is 54 yrs old. He has Parkinson since 8 yrs. For the time being, at intervals of two dosage of Sinemet , his body becomes flaccid, he can't even stand up and he is having signs of depression. Please give us some advice. Thanking you in advance.
In reply to the caregivers comment, I am attaching a brief article about caregivers for PD that was published years ago in PDUPDATE.
Caregivers: Valuable Members of the Healthcare Team
R.A. Mackey coined the term “caregiver” in a paper published about the meaning of mental illness. The term now loosely encompasses anyone who lives with someone who has a chronic illness. There seems to be little regard to the quantity of daily care that individual provides. In our public consciousness caregivers are almost invariably “burdened” and have difficulty coping. Recent research is finding the actual personal experience of caregivers is more ambiguous. The rather skewed outlook research has focused on is perhaps a function of the caregivers who sought help- those who were having the most difficulty providing care, or those whose partners needed the most medical attention. Researchers Greenberger and Litwin have found even burdened caregivers could provide good care given adequate resources, self- esteem and support.
Who are the caregivers? Instinctively, we know most are women. In a survey of 2000 families only 14% of men provided care to elderly fathers, while wives, daughters, daughter’s in- law and other women provided 86% of the care. Caregiving sons reported significantly less burden then daughters or other relatives did. Yet research found the odds of being institutionalized were twice as high if the caregiver was a male. The rationale provided by researchers was women provide more personal care and housekeeping, which are necessary for remaining in the home, while men provide assistance that is less enabling for an ill patient to remain in a family environment. Who cares for elderly women? This breakdown is more evenly split. Fifty-nine percent of women care for an elderly female, while 43% of males perform this function. Of the 59% of women providing caregiving services, 47% were daughters.
The caregiving role can be classified into three or four categories depending upon the daily tasks the provider performs for the dependent person. Researcher Maier proposes the initial period occurs after diagnosis, when the family comes to accept the revelation that an illness has moved into the home arena. The next phase takes place as the family provides home care. Networks are opened to home care, respite services, day care programs and home- based rehabilitation. When community services are inadequate or when the patient’s illness progresses to a stage where formal continuous care is needed, the next phase of the caregiving role begins. Physical separation from the sick member may be traumatic but is not the end. In this phase, the caregiver works with the institution in providing ongoing support. Death of the loved one and bereavement are the last transitions of the caregiving role.
Difficulties may arise at any time. In a study of 380 spouses of PD patients, caregiver strain was present at all levels of illness and tripled by the time the patient was at stage 4/5 on the Hoehn and Yahr Scale (Stage IIII: Fully developed, severely disabling disease; the patient is still able to walk and stand unassisted but is markedly incapacitated). When caregiving begins to erode the health and quality of life of the provider, the literature says the provider is experiencing a significant burden. Burden takes various forms, loss of personal time and autonomy, financial stability, and or, personal relationships. In a study involving primary female caregivers of severely demented patients, three issues were good predictors of the caregiving burden- poor financial status, difficulty asking for help, and past unhappy marriages. Other investigators found criticism and disparaging comments made by family and friends about the caregiver’s performance, along with conflict about the needs of the patient within the family, lowered the self- esteem, caused resentment, and increased the likelihood of depression in the care provider. Our society provides its own obstacles. Studies show women caring for men received less help from local health agencies and support services, than male caregivers.
What enables a caregiver to endure a significant burden while another sinks into despair, depression and disability? Two variables appear to be significant. Though physical health of the patient does not always determine how able the caregiver is to cope, the degree of mental health is an indicator of the caregiver burden. A caregiver with an optimistic outlook, who is self- confident and feels competent, is more likely to cope well. Greater caregiving burden is not a predictor of lower self- esteem. Burdened caregivers who develop a sense of mastery can be more self- confident. Self- confidence can be bolstered by nurses or other healthcare workers who take the time to listen to frustrated, exhausted caregivers and allow them to express their feeling without judgment or repercussion. The greater the caregiver’s ability to cope, and the higher that individual’s self- esteem, the more likely he or she will be able to seek and acquire help. Happy relationships often have a positive influence on how a caregiver provides care. Moreover, this is not dependent on economic status. Indeed, the personality of the ill patient also plays a role.
Caring for the caregiver happens when the caregiver’s needs and health are recognized as important as the patient’s health and needs. Health professionals and even extended family members cannot assume the health of the PD patient will deteriorate faster than the caregiver’s health. Many spouses have and will die first. No amount of words can convey the benefits of having a contingency plan.
Maier K. Calne S., Informal Caregivers: A Valuable Part of the Healthcare Team. Parkinson’s Disease Ed. By M. Ebadi & R.F. Pfeiffer, CRC Press: Boca Raton 2005.
Dear Abi,
You describe an unusual situation where your husband becomes "flaccid" and can't stand up. Generally when the effects of Sinemet wear off, patients become rigid, have tremor and have difficulty initiating movements. My concern would be that the flaccidity of his muscles might reflect a drop in blood pressure, something that happens in a variant of PD named Shy-Drager syndrome. The schedule of medication you mention is not clear to me. I recommend you see an expert in Parkinson's Disease to make sure his therapy is optimized. If you are need a University Medical Center, I recommend you call the Neurology department and ask for an appointment.
Dear Doctor,
My dad has advanced stage PD. So far it hasn't affected his thinking, but lately he gets confused quite often. For example he forgets who he is or talks without making a lot of sense. Generally it doesn't last long and only occurs during his 'off-times'. Is this common? He just had an operation on his bladder and had general anaesthetics, could this have caused it? What can we do to help him?
Thank you very much for you input.
Ina
I hope I am asking a question of the doctor. My son starting with numbness in his face three years ago. his symptoms increased to vison problems and tremors in his muscles when they were flexed. he went to several neurologists and optical neurologists and at first was told it was all in his head. he went to the mayo clinic and was told the same without any testing done, just going on his previous tests for other neurologists. this past month with symptoms increasing including being exhausted and not being able to work, he got to go back to the mayo clinic. they said he had parkinsons symptoms and some that were not. they decided to put him on the medication to see if he had it. a month later he is up to 3 1/2 pills and still no improvement. he said his eyesight is failing in his right eye. what can we do??????/ please help. should they also be having him have blood tests to check on the medicine? any suggestions would be welcomed. It has been too long for him to be suffering without any help.
Dear Doctor:
I just read in June 2009 PRF News that one of the signs of PD may be loss of smell. I am 79 years old. Should I see a Neurology doctor for tests or are their test for possible PD in my future?
Dear Doctor,
I forgot to say that I lost my sense of smell 2 or 3 years ago. J. C. Clark
My Wife has been diagnosed with PD about 4 years ago. She has dementia. I am confused between the parkinsons like symptoms associated with Lewys Body, and those from actual PD symptoms.Our MD says it could be either of them. Can you add anything to this?
Jim
Is there any connection between Parkinsons and Plantar Fasciitis? Thank you.
My dad is 87 and has parkinson's for 18 years. He's been in the hospital/nursing home for the past 10 weeks. One of his problems is frequent sweats (even without any noticeable fever)--the sweating is such that it puddles in his collar bone.
His medicine has been much more difficult to regulate during this hospitaliztion--his regular regime of sinemet every 3 hours plus mirapex and amantadine seems to be either not enough or too much.
I read book 'Stop Parkin'and Start Livin' (Reversing the Symptoms of Parkinson's Desease) by John C. Coleman, Griffin Press. Author advocate using Bowen Therapy (massage) and Aqua Hydration Formulas (homeopathic) for Parkinson disease treatment.
Any independent opinion on using this approach?
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