Neurologist help: I have read so much on... - PSP Association

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Neurologist help

nannygoon profile image
5 Replies

I have read so much on hear about neurologists visiting patients and I wondered how and if I could get this for my sister (81) fully dependant bed/chair bound now not communicating, Parkinson's nurse visited about 3 months and consultant but no plans for regular visits (sister in nursing home). Have they written her off? Is it just palliative care now or should I be doing more for her? We are in Scotland anxious for any answers to this.

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nannygoon
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5 Replies
jzygirl profile image
jzygirl

Nannygoon it does sound as if you are getting over anxious over your sisters situation. From what you have said in your previous posts your sister is being well looked after and that is the most important thing. All care homes are equipped to deal with palative care etc. There really is not much more that can be done apart from general care duties and when the time comes the care will increase to keep her comfortable. Most people will see the neurologist once or twice a year. As long as the parkinsons nurse has seen her in the last six months you know her situation is being monitored by the neuro team because they will write and tell the neurologist the latest findings. And if there is anything to worry about the care home will have the gp out and if they think it necessary gp will contact the appropriate people. Please relax and make your visits to your sister as enjoyable as possible. please please accept that you have not been lacking in the care of your sister and the more you worry about what you think you should be doing you will lose focus on caring for yourself and your sister. Janexx

nannygoon profile image
nannygoon in reply tojzygirl

Thank you so so much, your response is so right I am trying to hard and I will try and understand that I have done enough, and start putting more into my visits with Rose take care and thank you again.

NannaB profile image
NannaB

I agree with everything Jane has said. My husband saw the neurologist at our hospital once a year for 4 years but apart from looking at him, he didn't do anything. On our last visit when I pushed him into the consultation room in a wheelchair, the neurologist said it was obviously an effort for me to get there and as there was nothing he could do to help it was pointless going to see him. If I agreed he would not make another appointment. I was relieved as it is an effort and thought he talked a lot of sense. Your visits probably do her far more good than a professional who is a stranger would.

Nanna B

zjillian profile image
zjillian in reply toNannaB

I have never had a neurologist tell me anything that i didn't know already and that anybody who looked at my husband would instantly know without any schooling at all. I have gotten more support and information from this website than any doctor has ever given us. And it isn't free..US health care does not pay anything if you live outside USA (although we still have to pay them for our Medicare!). So twice a year we go to see the neurologist who we pay $100 a visit and about half as much in gasoline for the car to drive there.

A good nurse or caregiver is worth much much more and more useful and compassionate. Don't worry about not enough doctor time and hug a nurse today.

Jill

nannygoon profile image
nannygoon in reply toNannaB

Thsnkyou for your reply I agree I am a bit over anxious about Rose and I need to put more faith in the nursing home and more into my visits to Rose, thank you again.

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