I've just realised that I last saw my neurology consultant in July 2021. In between I had a one-sided phone check up with the PD nurse to document my decline 😶. Obviously services have been strained with the pandemic but I wondered if others have had the same issue.
Question. How frequently are people seei... - Cure Parkinson's
Question. How frequently are people seeing their NHS consultant?
Every six months here too. On the phone nowadays. I can't recall one productive meeting.
I last saw my Neurologist late 2019. My elusive PD nurse has spoken to me twice since then. Each time for less than 2 minutes. Think I have fallen through the cracks. Hey ho what can they actually do for me anyway. I just crack on with it. Never complain, eat, drink, walk and enjoy life. 😘
Similar experience. I am seeing 3 neurologist so see 1 every 3 months. So far they all have had similar recommendations. 1 pushes medication so she is my least favorite although she is highly recommended. The PA'S and nurses don't have the same training and I am not comfortable with them. It makes you feel like a number. Lucky to get 1/2 hr. and they aren't interested in discussing alternative treatments. Not sure what the answer is. Good luck!
My husband has seen his Neuro, who incidentally tries to work with him on helping his symptoms, every 6 months. Has tried him on something new to try and reduce dyskinesia, and has made an appointment in July to see how they are working!!
His previous Neuro sounds like many people’s experiences, 10:minutes then puts up meds, never answered questions, stands up to encourage your exit!
He’s seen 1 PD nurse and 1 on zoom in 7 years!
Same experience here. I am heavily reliant on self-care via exercise, meditation and nutrition.
I have lived in the UK for 10 years now. Only been to neurology in Sheffield once. The neurologist didn't even examine me, just asked about my symptoms. Do not get to see my GB neither, only phone calls.
That's very worrying.
My PWP hasn’t seen his neuro since 2018. We’ve finally decided to have a private consultation. Even that is a 3 month wait. Crazy.
Unfortunately this appears to be the way things are going. Privatisation by necessity.
My husband was referred for an initial appointment to diagnose PD in 2018.He was seen in 2020.Since then we have seen his neuro once last year for 6 minutes( I timed it) after 3 cancellations.1 telephone call with PD nurse lasted 2 minutes because she couldn’t understand my husband,and wouldn’t talk to me.We live in Scotland.
When we decided to look at a private consultation,we found it would be with the same neurologist that we had seen through the NHS.The treatment protocols are hemmed in by strict guidelines so there’s no room for them to suggest anything else apart from a few basis meds,and a” come back when you get worse” mentality.Thank goodness for all the participants in Health unlocked,Iv learned and applied so much from here that’s has been so helpful.Thanks!
I last saw my neurologist over 20 years ago. I reversed my symptoms as others are quite CAPABLE OF DOING . at not cost whatsoever.
I’m really glad to know that you have been able to get your unique set of symptoms under control and are living a productive healthy life.However to assume that everyone is capable of achieving what you have done is simplistic to say the least.Each Parkinson’s journey is different,as seen on this forum,and some treatments, B1 protocol for instance works fantastically for some and not for others.Age of being diagnosed and other health problems have a bearing on what each one can physically achieve,so a One’s size fits all attitude isn’t helpful.
What did you do to reverse symptoms? My husband has freezing of gait and balance issues which are very debilitating Thanks for your help.
I Di fast walking. The fact that your husband freezes is easily overcome, when you know how. There are two separate parts of the brain that we use all the time. Because he has been walking since childhood he controls his walking by using his subconscious brain, but that has been affected by the PD and it stops working and he freezes. He has to switch on his conscious brain and use it from now on to control his walking until he reverses the symptoms. To switch on the conscious brain he must first stand erect, which can be done in the frozen position. Then he places all his weight on one leg and move it out in front of him. Then he is walking already.
So, consciously pulling his shoulders back, sticking his chest out, and standing as tall as he can, he is then using his conscious brain. He must then place all his weight on his left leg and that frees his right leg and then he can start walking by lifting his right knee up and moving his right leg forward and he is now walking, but he must now learn to consciously place his right heel on the ground and push forwards with his left toes. He is now walking consciously. When he stops walking consciously he will freeze.
Practice, practice, practice.
Read the above answer
Wow.....when my husband freezes I tell him to STOP then we count 1 then 2 and 3, and see how many steps follow. It does help momentarily.
don't only get him to step forward, first get him to stand erect and concentrate on standing erect, then he must stand on one leg and lift the other knee up and plav=ce the foot as far forward as possible and land on the HEEL. Then transfer the weight onto the HEEL of the other foot. Make sure to push forward with the back toes.
Keep practicing all of this.
I see my Neurologist and then my PD nurse at 6 monthly intervals, normally by Video unless I feel that there have been significant changes.
I changed Neurologist after a few yrs of him not listening to anything that I suggested might be helping ( exercise, nutrition, mindfulness, etc), asking in the early yrs for his advice, which on reflection was a waste of those yrs tbh.
I think it is more important to find a Neurologist who actually understands and listens, rather than to focus on how often you see that person- after all, you know how you are feeling and reacting to things much better than he/she will so if B1 or Mannitol, for example, make you feel better don't let them tell you otherwise ( but of course be sensible in what you consider taking- do your research esp within the PD community where there are some very good voices of support)
All the best
Very well said. Thank you very much PT.
I saw mine last early january. The beginnings were bumpy as i got a dismissing one and it took 3 years to be seen by someone decent. Im not on the NHS but The HSE in Ireland. I thought our system was a disaster. Since i got this neuro im happier. He got some young neuros under him who always end up calling him because my symptoms are so mild they dont believe it. I think walk, red light, meditation, B1, supplements, herbs, self love and coming to these forums all help. Ill see my neuro next in july. So its every 6 mths. My gp dr though is my go to if i need changes.
Thank you. Great to hear that you are doing so well. 👍
I stopped going to mine after 1st visit post-diagnosis, as all they offered was prescribing meds, which BTW, I only am on supplements, along with exercise and good eating habits.
All real help has came from all the great people on this site!
I have a regular neurologist who lives near me and a MDS I travel to see. I see them alternating visits about every 3 months. The MDS regulates my medication. Guess I'm blessed to have such good docs at the ready to help. I was complaining about the frequency, but I will stop complaining now and understand not everyone has that kind of access!
Six monthly appointments with MDS (by telephone during Covid) and another elusive PD Nurse here. I'm sorry that others have the same with their PDNs but it's made me feel better that I'm not being deliberately ignored!
Do you think their is a shortage of movement specialists?
In the UK there may be neurology consultants with particular areas of specialisation. I think the issue here is a general unmet need going on the replies here. This is an NHS wide problem with growing waiting lists. More Parkinson's specialists would be good though, particularly if it could be uncoupled from geriatric care as that's not always helpful.
I am so sorry to hear so many awful stories of all your experiences with seeing a neurologist. It was the same for me for a while. I was diognosed Dec 2019 and put on rasagiline knowing very little of my condition or what the medication did. I was contacted by phone six months later and told if I started stiffening up to ask doc for levadopa. How stiff is stiff I wondered. I was then left high and dry for two years with nobody to turn to.
After complaining to the hosp appts clerk I was given an appt within days and my life is so much better. I see a lovely neuro doc every six months and a lovely parkinsons nurse too. She spent an hour with me discussing what vitamins I take and offering suggestions. All on the NHS.
I have just come home for my hosp visit with neuro and was really surprised. I wasn't going to mention my self help treatments as usually you get pooh poohed if anything other than drugs are mentioned. How wrong was I. He said that he could see I was doing well even whilst still recovering from covid which has knocked me back since January. So I bit the bullet and told him what I was doing. Fast walking, B1 therapy, macuna, and cue1, which he was very interested in and will look it up. He also said that it is better to stay off drugs for as long as possible and was impressed by me taking charge of my own destiny.
When it comes down to it we are all basically on our own and helping ourselves is all most people can do but it is nice to know that there is at least one informed doc out there to help. All we can do keep on doing what we are doing and hope for the best
It's heartening to hear of good experiences. There is good practice out there. Apart from the frequency of appointments my consultant has been fine.
I was diagnosed last June by neurologist but also have sleep consultant for RSBD my next appointment with neurologist is next week but I have suffered acutely with depression and had to see the PD Psychologist so I think that’s why my appointment is under 12 months, I’m fine take co caryldopa go to the gym and walk every day but realistically I’ve used this forum and Parkinson’s UK for information and learning about the condition I don’t see GP and at 61yrs old I feel a bit written off at times. I am at the moment completing Power of Attorney for health while I have capacity but don’t like to bother GP for help with it so have decided to go to private GP who is actually my own GP to get 30 minutes face to face to go through forms although my husband is a retired GP and is appalled that it can’t be done at the medical centre. It can be a very lonely disease I feel.
Sorry to hear that. I hope you find your way out of the depression soon. I'm glad you are being seen. These are the times when it mustn't fail us.
why not try Hardys daily essential nutrients with added vitamers for your depression. It’s worth a shot and has got rid of hubby’s depression and I now have my 20 year old son on it who was struggling with adhd symptoms and depression and anxiety and he has perked up remarkably and has just finished the first term at uni doing well after basically sleeping through year 12 and dropping out of school in last year.
He is also taking rhodiola rosea which I also think makes quite a difference to his energy and motivation. (But watch for any drug interactions).
Ten minutes once every 11 months. Can’t recall a single thing said by my consultant which has been of any significance and certainly no questions at all about the regime and routines I’ve established with the help of those who contribute here. My PD nurse did express more interest and has apologised for not having the time to keep up with the range of research and developments taking place. She had never heard of the Symbyx Biome laser, for example. Thank heavens for this forum!
they are trained to push pills, not to interact with pwp ... I have seen 4 neuros so far here in the US, and none of them have been able to spend any real quality time explaining what I can expect since my diagnosis last May ... I'm honestly not certain at this point that this is not some bogus diagnosis even. I'm about to see a 5th one, to whom I sent that article about "hopamine", and she sounded enthused about it, so I have a small hope.
SAW CONSULTANT 3 YEARS AGO WHEN DIAGNOSED NO CONTACT SINCE ONLY CONTACT IS WITH PD NURSE AND THEN AT MY REQUEST
Parkinson’s nurse once every twelve months. Not much use (she seems to dread discussing anything other than drugs although at face value she’s very arrogant ) she did though look up Ambroxol for me on a database to see if it’s available to be prescribed by GP (I may have got the jargon wrong - short answer is it is but they won’t).
I had a very depressing consultant to start with but since asked around and found about as good a one as I could hope for. Have been warned by the nurse that this consultant is getting on a bit but he’s up on the research, leaves me with hope, and I trust him. Have seen him 3 times in less than a year which I don’t understand but equally am not going to question as the appointments have been useful.
Every six months I see my consultant - don't forget we also have the 'services' of the elusive, Lesser Spotted Parkinson's Nurse.
Thank you for replying. Maybe they've forgotten about me. I'm not sure if I want to be found again to be honest.
our appointment due May 21 was delayed until November 22. Then it was with a registrar not neuro and the specialist popped in to stand in the doorway for 5 minutes to say “everything going ok?”
It is a worry. I don't have any pressing needs but there may be people who do.
yeah. I had a moan about it and he quickly got a pd nurse appointment but she just really wants to give him more drugs and up his dose and that never ends well.
Every 6 months for me, some in person, some by phone