Have just been given a short notice appointment with our Neurologist for Monday, we only get to see him about every 10 months, so want to make the most of the appointment. Previously I've come away thinking Mum has gone through a lot of stress to attend the appointment (getting up early, driving for an hour through traffic, getting drenched getting out of the car into the wheelchair, etc etc) and we haven't actually gained anything from it. How do other people find it? What questions do you ask? What help / assistance do you get offered?
Thanks
Alison
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AJK2001
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After the 5th or 6th neuro appt the doctor basically said since there is no response to his prescribed meds the need to see him was only a formality. He gave dad the option to schedule another appt or just use his primary doctor for any issues. Dad hasn't been back to see the neuro doc. The neuro doc did put in a consult for palliative care evaluation which was done but not much was decided since at that time dad didn't need much more care then he was already getting.
Thanks Ron, I guess it's the way with an incurable that they can't offer much, but you hope they would be able to offer some advice, don't you.
I stopped taking Larry to see the neurologist. It was poIntless. He had nothing to offer. His primary care doctor (GP) comes to the house every three months. A lot easier for me.
We only see the neurologist if my wife is in hospital. We normally work through the District Nurses and palliative care team, which includes the hospice, I trust them to liaise with the neurologist if needs be.
And how did you get the referral to the Palliative Care Team? What support do they offer you? We have a fab Community Matron, who I find a great support.
It is a while ago now, but I think it was when I asked her GP could my wife be referred to the hospice for day care. Our hospice links very closely with the hospital palliative care team. The doctor in charge of the hospice (she founded it) is also senior consultant to the palliative care team. They therefore work very closely together in fact if I ring the number for the nurse I am often put through to the hospice. How it works in other parts of the country I do not know. I suppose your GP should be the first port of call. Hope you find the same level of care as we found.
I stopped taking Colin to the neurologist, seemed no point, he only asked if any change and even when there was, never offered anything, so thought there was no point.
You can also look up the string Questions for Neurologist by abbey (approx 4 yrs ago) by typing that title in the Search PSP Association window on the upper right corner of your screen.
Hi Anne, help! I tried putting string Questions for Neurologist by abbey
No questions came up. Did I not input it correctly? Is there suppose to be quote marks? What are the correct words, phrase, etc, that I need to put in? Thanks!!
My son is no longer around to need my help, but I still think it is important to learn.
You're right Margarita - I just tried myself and it didn't come up. Bizarre!
If you scroll up to the top of this post string, and look to the right at the Related Posts lists, abbieg's post Questions for neurologist shows up last. She has a yellow smiley-face avatar. I don't know why it wouldn't show in the Search results.....strange!
Hi, I'm still on the computer. Maybe it's just not working right now. I think I followed what you suggested (who knows with my level of computer sophistication) and what came up was this posting. Both a mystery and frustrating.
We didn't get much help from our neurologist but kept going because Chris liked her She was pretty and sympathetic. We would have stopped when it became too much.
I did leave you a reply but see that it did not post. We saw hubby's neurologist couple of months ago and he pretty much said that if we needed anything to call . I kinda said there is no point in him keeping appts every 6 months and he pretty much agreed. Next appt would be in the winter and we are not going to battle winter weather to be told oh yes i see you are declining give me a call if you need anything.
I sort of suggested this to our neurologist last time & he got quite the hump with me, which is why I thought I would ask for other people's experiences in case I was missing something. I quite agree I wouldn't take Mum in the winter, it's not worth it, but thought this time, the traffic should be better as the schools are off, it's a sensible time of day & the weather is OK, so I'll give it another go & see if we get anything out of it, other than Mum's hopes being raised, as there must be a reason for going or they wouldn't ask us back would they?
I hate the Neurology appts - I feel my husband is used primarily for teaching and there is no gain - though my husband likes the appts.
The only value - he is the gatekeeper to other services. Through the Neurology my hubby (PSP) has seen really helpful Uro neurologist, Sleep apnea specialist, Neuro Psychiatry, ENT - all of which have made positive contributions.
So I guess you need to look at current symptoms and see if any onward referral could be helpful. We / I have to ask nothing is ever offered.
As far as I am aware, in Northern Ireland, to be in with a chance of getting CHC if you are in a Private Nursing Home, one of the criteria is that you have to be under the care of a specialist consultant and seen on a regular basis. I read recently that between April 2011 and September 2016 only 43 residents were eligible for CHC in NI. (Not a lot).
The Department for Health NI has been asked to undertake a review of its current continuing healthcare policy in Northern Ireland. It has identified four potential options for consideration. I'm not surprised at their No1 option!!!
Option 1: Do Nothing
Option 2: Introduce a Continuing Healthcare Decision Support Tool Model
Option 3: Introduce a Single Eligibility Criteria Question
Option 4: Develop Standalone Guidance and assessment checklist specific to the HSC System in Northern Ireland.
Thankfully at the moment, there is no charge for domicilary care in a client's home so CHC is applicable.
So to end this long post, we will still be attending our Neurologist.
Apologies if I bored you with NI's inadequacies. Nanny857 xx
I don't know if this will help you, but this is how I prepared. We only see the doctor every 4 months (for the last 6 years). (Sorry, could not find abbey post so this may be either redundant or not as helpful).
1) I keep a daily diary of things that occurred, e.g falls, changes in supplements, amount of exercise, and changes, dietary changes (e.g. low carb, gluten free), and things I had read about like other meds, equipment, etc. e.g Why is he not taking/using this? What dietary/supplement suggestions does the doctor have? I would ask her for more suggestions. I would request specific blood tests I had read about that are not apart of the standard protocol. This site has been so helpful in my feeling prepared. (My brain is saying, this is what I am doing, now what are you going to do?)
2) I would try to find out how the doctor felt my husband was progressing and what I should be prepared for next. Her assessment came from his walking, and the other neurological tests. (toe tapping, finger tapping, finger to nose etc,)
3) I would ask, "what's next?" and what are the doctor's expectations for your mother and her treatment and why. What is the doctor's strategy? e.g. any clinical trials or treatments on the horizon that I should prepare for?
I am the 24/7 sole caregiver, in the US, and assistance and/or training is marginal at best. I have felt I needed to be one step ahead of the disease....and not so much like the dead dog walking. I should have asked who is going to teach me how to pick him up when he falls, or get him into and out of a car, or bathe/toilet him, or give him meds when he can't swallow or ...rather than using Dr. Google or Dr. YouTube? OK, I am beginning to ramble. Hope this is of some help.
We were the same as Dadshelper. We only saw the neurologist a very few times when he told us not to bother to see him again as he saw what an effort it was for me to get my husband to the hospital. He told me to ring and make an appointment if I really wanted to but there was nothing he could do that the Parkinson’s nurse couldn’t.
Every time we make a visit to the neurologist, I try to inform him of the changes that we have detected in the patient since the last visit and if there is any symptom or attitude that we find worrisome.
In general visits to the neurologist are quite depressing because it rarely tells you anything new that you have not already intuited or anticipated with the information that is collected in this chat. The neurologist tests and tells you what stage the patient are in. If the disease has progressed much or little and in which aspects of care we should insist.
I see that your incorporation into chat is relatively recent.
I hope it does not seem wrong to send you some small notes that I have been taking about the development of my wife's PSP-RD, with the hope that they may be of use to you.
Yes I am quite a newby, have been reading for a little while and been impressed by what a brave and supportive group of people are in this group, so recently plucked up courage to post.
Please send me anything you feel maybe useful. I find it very helpful to hear of other people's challenges and how they cope, I don't feel Mum & I are so alone in this, as it is difficult when people are not aware of the condition and they think you can rationalise a person's behaviour.
At the end of the notes that I have sent you by internal mail there is my e-mail address and a list of documents related to PSP that is neccessary to send by normal e-mail. The private internal mail of HelathUnlocked is not prepared for these types of files.
Alison - Thank you for asking your question - I was wondering the same thing and the answers are very informative as usual. Sending you hugs - Granni B
I’m similar to most responses. The only reason we continued to see thr neurologist is because my wife like to visit with her and her nurse. The neurologist even offered for me to email questions or concerns instead of visits, but my wife enjoyed the visits. I would always have a few questions from the 6 months between visits, but the continued to be minor.
Good luck Monday. Hopefully your mom will enjoy the outing.
We paid privately to see a movement disorder specialist with special interest in PSP, he was recommended to us. It was purely to run through the various medications he was on to help with rigidity, different medics had different ideas but he was more informed than the GP or Parkinson's Nurse. We only saw him the once but he said to email him if any other questions as he could see what an effort it was to get Ben there to see him. Our original National Health Neurologist wasn't very informative but did at least recognise that Ben probably was suffering from PSP.
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How do you know what stage you are in ?
What do you mean you cant help?
Do we forget the dental appointments?
