My husband saw the GP in January because he was concerned about memory problems: she said his memory seemed okay, but she thought he might have early symptoms of Parkinson’s and sent him for a CT scan. This showed a likely diagnosis of normal pressure hydrocephalus and she referred him to a neurologist.
He saw the neurologist in May: she agreed that this seemed probable and referred him for an MRI head and spine, as well as a lumber puncture, which were done in June.
His next appointment is not until the end of September but meanwhile his condition is deteriorating very rapidly: he is unsteady on his feet around the house and is no longer able to walk far; he has extreme difficult in planning tasks and seeing them through; and he is having problems with constipation and urinary incontinence.
We are finding huge difficulty in accessing more information and advice.
Does anyone here have any advice that might help us?
Hello Bron33 … You don’t say how old your husband is.
I would suggest you phone the helpline here & speak to a Parkinson’s nurse.
0808 800 0303 & they will phone you back.
The best proof of Parkinson’s is a Datscan of your brain. The Brain Mri scan is really to rule out other health issues.
I had a positive datscan & I was diagnosed with Atypical Parkinson’s disease. I am 70 years old & was diagnosed in June 2023.
Hello Bron33.
I was diagnosed with Normal Pressure Hydrocephalus in 2016 and had shunt fitted shortly after this. You are quite right, finding information is not easy and what there is can be very depressing and/or confusing. I did find one reasonably clear explanation but can’t find it at the moment if I do I will of course let you know
The problem I have is I don’t seem to fit what the doctors expect to see. I didn’t know I had an enlarged ventricle until I was diagnosed with Parkinson’s and because I had none of the expected symptoms that went along with that they concluded that it was a pre birth defect and if the Parkinson’s hadn’t kicked in I would probably have never known. I was referred for assessment for dbs in 2016 when they decided to look at it again and concluded it was NPH. So I have trouble seeing myself in most things I read and as a consequence I do have trouble understanding it, even sometimes wondering if I have it at all.
Contrary to what you often read saying it is a rare condition, both my consultant responsible for managing my Parkinson’s and the consultant responsible management of my NPH both say the same ie that it is more common than the stats suggests and that many elderly people just put down the symptoms as part and parcel of getting old when it is in fact NPH that goes undiagnosed and untreated.
From my perspective even though I have the condition and should be able to say something to help you, that is hard for me to do since I don’t fit anything I read. The other problem I have and the main reason I can’t say much to help you is that for everything you read about NPH having a rapid deterioration etc creating the blackest of black scenarios, you can find another contradicting that view. On balance I think the best thing you can do as Steve2 has already suggested, is speak to your husband’s medical team to see if the appointment scheduled for the end of September can be brought forward. Maybe your GP can offer some advice or a way forward and it is always worth giving the helpline a ring for their view. The Alzheimer’s Society may be another good option
It feels like I have written much but have given little to the main points of your post. However I absolutely agree with you that information on NPH is difficult to find and what you do find all to often contradicts something else you may find. After my diagnosis and fruitless search for information I decided all I could do is manage what it does to me by whatever means I could. It doesn’t really matter when push comes to shove whether it is Parkinson’s or NPH if it’s happening to me I have to manage it as best I can. I am truly sorry not to be able to offer you something more constructive and sincerely hope someone will come forward with comment and advice that really helps.
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phone the hospital where your consultant is based and ask to speak to their secretary explain what is hapening and see if you can get the consultant to give you a call. I would also get an appointment to see your GP - they may be able to speed things up but can also access things like occupational therapy and physiotherapy which your husband will probably need as well as treatment.
Thank you very much for your kind reply and your suggestions.
I rang the Medical Secretary some weeks ago, stressing that my husband’s condition was deteriorating and that we lived very close to the hospital, and could easily attend if the clinic had any cancellations. She was very helpful and pleasant, but there were no cancellations when I rang. She said she would make a note of our request, but we haven’t heard anything further.
We had asked the GP in June for a referral to a physio from the Neuro team. He now has an appointment for an assessment next week. This has taken about 10 weeks to get, after many phone calls and a wasted hospital visit which we thought was for a Neuro physio assessment, but which turned out to be with a technician who was expecting to be measuring someone who had already had an assessment for a walking aid.
On a positive note, we attended a gentle exercise class run by our local Parkinson’s group a couple of days ago, which was very welcoming and a lot of fun. So neither of us are feeling quite so desperate and unsupported as we were.
Thank you very much for your kind reply. My husband is 74, and previously in good health, apart from having had polymyalgia about five years ago.
I phoned the Parkinson’s Society some months ago, after the GP had suggested that my husband might have early signs of Parkinson’s and after he started having falls. I was told that until he had a diagnosis we weren’t able to access any local support.
Luckily, I realised more recently that the local Parkinson’s advisors might take a different view. We have now been in contact with them, been told we are very welcome, and managed to attend a gentle exercise class together earlier this week. So we are feeling more supported.
Our problem is knowing that treatment should be available, via neurosurgery, but having no idea whether that will be offered by the neurologist and how much longer my husband will have to wait for a neurosurgery assessment. I realise no-one can answer those questions other than the neurologist.
Meanwhile, I wondered if other people here had had similar difficulties in getting prompt treatment and care.
Thank you very much for your kind reply. It’s very encouraging to hear that you had a shunt fitted quite some time ago, presumably without complications.
I guess if your symptoms didn’t seem to fit those described for normal pressure hydrocephalus, then it is hard for you to assess whether the shunt has helped alleviate your symptoms, and by how much?
It is quite comforting to know that you found it hard to find information, but that in the longer term this hasn’t mattered much to you, because, as you say, taking each day as it comes and doing what you can go manage any problems is what each of us ultimately has to do.
Thank you again for taking the trouble to share your experience. It is very helpful to know that we are not alone.
Good morning Bron33 … I am pleased to hear you are finding our input helpful. Most of us here go from being totally unaware of what is wrong with us to “relative experts” in a period of less than a year.
I am afraid to say that seeing a Neurologist on the NHS takes a very long time. My NHS Neurologist returned to Armenia & I am seeing no one apart from my Parkinson’s Nurse. Also you may find that our GP’s wash their hands of us as Parkinson’s treatment wise as we are under the “Parkinson’s banner”.
Having said that I am on the correct medication [Sinemet] for me & I don’t really need to see a Neurologist although I am supposed to be on some sort of waiting list.
All that happens with Parkinson’s patients is that their symptoms are treated by medication. Very much trial & error. Most medications have side effects & a decision needs to be taken on which is worse, the symptom or the side effect. The side effect for me is fatigue / sleep problems. But the Sinemet does help me & I am happy to take it.
What you might consider doing is seeing a Neurologist privately [costs maybe £200]. If you like the service then perhaps ask if this person takes NHS patients.
Always book up a 6 monthly follow up appointment whether you need one of not.
I attended a 6 week Neurological Physiotherapy course. It was 1 hour a week in a gym. I had a Parkinson’s trained physiotherapist & found it excellent. Exercise is very important. You can go to Youtube & look up “exercising for people with Parkinson’s disease”.
Hello Bron33
You are quite right, my shunt was fitted as I said in 2016 and I have had no problems with it. They always said if there was a problem with deterioration in my mobility to let them know and they will try to determine whether it is the NPH or the Parkinson’s. This happened once some time ago when the pressure in the shunt was adjusted slightly but it was found to make little difference so they suspected it was more likely to be my Parkinson’s.
As an aside the pressure adjustment was an interesting experience. The specialist nurse came to me with a small box and a pen like ‘gun’ which he held on my shunt for a few seconds, pressing firmly, his box beeped and that was that.
When the shunt was first fitted there was a marked improvement in my mobility and interestingly in my handwriting, and although not particularly neat could do proper’joined up’ writing for the first time in a long time. That is no longer the case and the general view is that it is more likely my Parkinsons is the cause.
I think the truth is that some of the symptoms of both are similar and it is not always easy to be certain which is the primary cause. My personal view is that for me the Parkinson’s is the stronger of the two conditions but the doctors can fight it out amongst themselves if the situation so demands.
I must apologise as I meant to include these in my reply and then didn’t - maybe one of these can help or at least point you in the right direction.
