Hello, my partner (68) is having his first consultation with Neurology dept tomorrow (after an 8 month wait) I was wondering if there are any specific questions we should be asking - if there were questions you wish you’d asked at the time. It has been a very worrying 8 months and we are pretty sure that Parkinsons will be the diagnosis.
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Hi Plantpot,
We noticed this was your first post and wanted to take a moment to welcome you to the community forum. Our members will be round soon to say hello and offer their advice and experience. Everyone here is very supportive and represents a varied and remarkable group of people dealing with Parkinson’s.
We also have a website which is truly stuffed with helpful information. You may wish to have a look at this section which suggests some questions for your partner’s doctor. Questions to ask your specialist or Parkinson's nurse | Parkinson's UK. These are post-diagnosis, but may still be helpful during your partner’s appointment. We’d also encourage you to have a search of the site with terms you may be thinking about.
If either of you would prefer to speak with someone directly, do contact our free and confidential helpline on 0808 800 0303. One of our advisors will be happy to take any questions you have. Added to this they offer a range of helpful services, including connecting you to the Parkinson’s community in your area.
We hope this helps, we wish you both the best, along with our warmest welcome.
Jason
Forum Moderator
Thank you. I have been reading the forum on and off all day and have already found so much information. I will check out your link too. Thank you again, this resource has been so helpful.
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Good evening Plantpot … I was diagnosed with Atypical Parkinson’s just over a year ago following a positive Datscan & a negative Mri brain scan [to show my symptoms are not anything more sinister, like a stroke etc].
You might ask if you can have both a Datscan & a Brain Mri scan. The Datscan is the closest you can get to proof that one has Parkinson’s as it measures the Dopamine in our brain. The best test for Parkinson’s is an autopsy [my Neurologist thought that was funny].
So your questions are …
- Datscan
- Brain Mri scan
- Which Parkinson’s does your partner have?
- Get a follow up appointment booked.
- Request a Parkinson’s nurse.
- Does my partner have Neuropathy?
- What drug is to be prescribed.
- If the above drug doesn’t work what medication will we try next?
What they will do is examine your partner & do a number of physical tests. Diagnosing Parkinson’s is an educated opinion / guess.
Your partner will be given Parkinson’s medication to treat the symptoms, whether they think he has Parkinson’s or not. It will be one of the Dopamine replacement pills.
The initial Parkinson’s diagnosis is always worrying. But things get better as you get used to it.
You don’t say what symptoms your partner has.
There is no cure for Parkinson’s at the moment but things do seem to happen really slowly.
Depending on your partner’s symptoms it might be good to ask if your partner might also have Neuropathy. Up to 55% of people with Parkinson’s have Neuropathy.
I have Neuropathy & it is treated with a wonderful drug called Amitriptyline.
Do let us know how you get on.
Best of luck
Steve2
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Thank you Steve, that is very helpful, I’ve made a note of your suggestions and will take them with us.
His symptoms at the moment are in his movements, stiffness, trouble walking, balance, dragging his right leg/foot. He doesn’t have any major tremor. He gets quite emotional at weepy stuff - very unlike him. Urinary issues.
Thank you again for your response, I’ve been reading the forum on and off all day and am amazed at the wealth of information and support given.
My problems are my mobility.
I have stiffness & trouble walking… they think this is Neuropathy
I also have urinary issues.
But I don’t drag my legs at all. I have balance problems.
I’m not weepy at the moment & I too don’t have much of a tremor.
So a lot of similarities … I have Atypical Parkinson’s.
Steve2
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I will certainly ask about Neuropathy & let you know how we get on. Thanks again.
I had an appointment in neurology just ten days ago. Yes a big shock to me to grasp I really do have parkinsonian symptoms.
But the excellent consultant did not formally diagnose Parkinsons. When she does formally diagnose then DVLA will be notified . That will be another issue to deal with, so I guess she has done me a big favour. I still drive locally and have been worried that I might not be up to speed, so I envisaged taking a few driving lessons to either boost my driving skills or tell me to stop.
Next issue is who do i tell and when. I think my wife has decided who she will tell but I dont know who. Dont put hubby in that situation. Let him decide.
We have an unfortunate road ahead. Your hubby and me.
Best wishes
Sooty
Hello Foxes … I think it is down to you to tell the DVLA that you have been diagnosed with Parkinson’s, when you are. You give the DVLA your medical team’s details & the DVLA writes back to them to see if there is a medical reason why you are not fit to drive.
The trigger might be when they prescribe Parkinson’s medication to you.
I contacted the DVLA who after contacting the names I had given them gave me a
3 year medical driving licence.
Steve2
Hi Steve, as you were so gracious with your time to respond to my question I thought I’d let you know how it went.
The consultant asked lots of questions and carried out lots of observational tests - and in his opinion he did not think it is Parkinson’s - he did not see any Bradykinesia which is the tell tell sign??
He thought it could possibly be an issue with the spinal cord being compressed in the neck area causing neurological issues between brain and legs and has said he will order a spinal imaging scan - if that showed damage then we’d be passed to the operational team there.
If nothing shows with spinal scan then a brain scan will be done to see what’s what, and we’ll be passed back to neurology.
He said there is very obviously a problem (hubby fell during the consultation!) but he thinks it could well be a nerve condition caused by his spine ?
Thank you again for your response, and I wish you well with your journey.
Kind regards. H
Hello H … Thank you so much for letting me know.
Best wishes & best of luck.
Steve2
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Many thanks. Thats clearer now. So hard to give up my car for the local trips when a mobiity scooter wont do.
Hello,
Whatever you do, I advise not to look into a crystal ball and cross each bridge as it comes.
Few questions I would ask:
- what stage is your husband, they normally grade this on the Hoehn & Yahr scale 1 to 5
- Consultant should medicate to enable the Individual to exercise / stay active.
- If you know the stage - exercise specialist who knows about PD can deliver the appropriate activity.
To PM if you require anything further.
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Hi Plantpot “Welcome” to our natter page we are a friendly bunch, we all have questions to ask. I had had PD now quite a while, when I first went to see the consultant at our Hospital it is very hard to remember/take in what they say, Yes it’s PD but you seem to always get that bit of shock when told, the hardiest thing I have found is when you say drag your foot and start walking as though you have had more than one drink, you say to folk sorry it’s my PD it’s the people you try to convince, example went to see my GP OH!! you have Parkinson’s but You don’t look like you have? what are we supposed to look like? but the more people know the easy it will get. What I’m trying to say is if your partner has PD there is a lot of help out there, please keep posting since joining the Forum. I have found lots of answer’s to my questions and i hope I help other’s from my experience.
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Good morning Plantpot …
Bradykinesia means slowness of movement and speed (or progressive hesitations/halts) as movements are continued . It is one of the cardinal symptoms of Parkinson’s disease (PD). You must have bradykinesia plus at least either tremor or rigidity for a Parkinson’s diagnosis to be considered.
I saw my GP about 3-4 years ago for what I thought was a spinal issue. I have played hockey into my early 60’s. I had a pain between my shoulder-blades like someone had stabbed me with a knife. There is also an issue lower down near the base of my spine. If I sat down on a chair for a while or drove in my car I found it very difficult to walk. The pain in my shoulder blades meant I could not nod my head,
I started taking Ibuprofen for this & it took away the severe pain. There were times when I stopped taking the Ibuprofen & the pain came back. The experienced GP I saw who is the head of the practice I’m at said he detected a tremor & thought I had Parkinson’s. So he referred me to a Neurologist.
2-3 years later I see this Neurologist, whose speciality is Neuropathy. I tell him about my spine & he arranges a Datscan, a brain mri scan & a spine mri scan.
As I told you my Datscan was positive for Parkinson’s. My brain mri scan was normal for a man of my age [70] & my spine mri scan showed what he called age related wear & tear damage. The “damage” was where I had the pain.
This Neurologist whose speciality is not Parkinson’s said I had Atypical Parkinson’s.
I was first prescribed 2 different Parkinson’s drugs which did not work so I stopped them. He then left the NHS & I have not seen a Neurologist since.
BUT I do have an excellent [very experienced] Parkinson’s nurse & he prescribed
the Parkinson’s drug Sinemet & I take 2 pills 3 times a day. I am convinced this drug has made a difference to my mobility problems & my life.
At the top of the page I gave you some information on Bradykinesia. In my opinion I do not suffer from this. I can walk normally & swing my arms. I don;t think I have a resting tremor. [although I had a heart ultrasound recently & was told I had a tremor by the technician].
About 8 months ago I had a deep ulcer on my heel & my feet felt numb & were swollen. The Neurologist told me I had Neuropathy & I was given Amitriptyline. The ulcer heeled, the swelling went & the pill also stopped most of the pain in my spine.
My most obvious Parkinson’s problem is “gait freezing”.
Freezing of gait is the temporary, involuntary inability to move . During a freezing episode, a person with PD may feel like their feet are stuck in place, or glue to the ground. Freezing may also affect other parts of the body or speech. Some people are more likely to have freezing episodes than others.
Now I have this happen all the time if I stop & stand still for more than 2 minutes.
It is a horrible sensation I feel it building up inside me & I cannot move my feet. I can’t go shopping as I can’t wait at the checkout. It happens every single time I stop.
If I have a bad attack my mobility can be effected for a number of days.
Also I can carry a mug of tea at home but cannot do this simple task in a cafe, I get uncontrollable shakes & will spill the lot if I don’t get help.
If I hadn’t had the positive Datscan, which my Parkinson’s nurse showed me & said was as typical for Parkinson’s as you could get then I would doubt I had Parkinson’s.
Also I am certain that the Parkinson’s medication I take works so again I think proves Parkinson’s, but again I have no Bradykenesia.
Of course Atypical Parkinson’s isn’t typical Parkinson’s just parts of it.
Do I think the Neurologist I saw knows what he is talking about in regard to Parkinson’s diagnosis? No I don’t think he does.
My diagnosis of myself is that I do have Atypical Parkinson’s. I also have Neuropathy which effects my walking [My legs feel like they weigh a ton after a short walk] &
my “minor” spine damage may be a bigger issue than is realised.
Put Atypical Parkinson’s & Neuropathy & Spine damage together & that is where I am.
So Plantpot … How good is the Neurologist you saw ? He could be right in his diagnosis & it is important that this is looked into as a cause. My own spine scan was inconclusive in my opinion. After the mri spine scan I would recommend you ask for a Datscan.
Hope my post is of help. Like me your partner may have more than one factor effecting his health,
Best of luck.
Steve2
Hi Steve, sorry I’ve only just seen your message or I would have responded sooner. The symptoms you describe re your movement is exactly what my partner feels. From my reading here I know that Parkinsons manifests in everyone quite differently to the next, so although we are relieved at the neurologists initial thoughts, until all scans are done we won’t be discounting anything.
We have a spinal MRI on Monday, so hopefully will know more soon.
Thank you again for your input it really is very helpful.
I hope today is a good day for you.
Kind regards. H.
Well here I am again, months down the line and still no definite diagnosis.
Spine MRI didn’t show anything out of the ordinary, so a brain scan was done.
Neurologist now thinks it could be normal pressure Hydrocephalus and has requested urgent lumbar puncture, which we are still waiting for. Partner is deteriorating and the waiting times between scans, results and appointments gets longer.
So here I am at 2.30am worried and trying to find info on NPH!
Regards. H