Recently Diagnosed


#1

Hi my Husband was diagnosed with PD last Thursday, he is 63 and he’s naturally devastated, he’s been given 2 types of medication and has to go back at the end of April to see how he’s getting on with them. I’ve read on here that people have PD nurses? We haven’t been offered a nurse and not any information about anything apart from the PD is life changing NOT life threatening. Do we have to get our own nurse , or will the Dr sort it for us? Maybe it’s too soon after being diagnosed, any advice will be greatful, thank you in advance.


#2

Hi @Pauline,

A warm welcome to the forum.

I appreciate how hard it must be for your husband to accept his recent diagnoses. We understand how this can be a shock to the system for your husband which is why we have a ‘newly diagnosed’ with Parkinson’s section on our website. Here you’ll find a lot of information on the help and support available to you and your husband - many of our newly diagnosed members have found this section to be incredibly useful following their diagnoses.

To answer your question regarding your husband’s Parkinson’s nurse, his GP should refer him to a Parkinson’s specialist, however if you contact our helpline service on 0808 800 0303, one of our advisers can arrange for a Parkinson’s nurse to contact your husband within 24 hours.

I hope you find the above information useful and please do give our helpline a call for more information on the support available to your husband at this stage of his Parkinson’s journey.

Best wishes,
Reah


#3

Hi Reah, thank you for the reply and the information regarding what to do about the PD nurse etc , I will let you know how I get on ,this is a brilliant helpful forum , thanx once again .


#4

Hi Pauline,
Welcome to the forum. It will take a while for the diagnosis to sink in for both of you. There are good days and bad. Symptoms are wide ranging and and not always constant. I’ve realised that after 18 months diagnosed that i need to find what works for me. Thats exercise (pd warrior and yoga). Interaction with people (working in retail after diagnosis). Seeing friends for coffee etc. Healthier diet.
You’ll find your way and a pd nurse is a great source of information. Maybe there’s one attached to your hospital? There’s lots of information on here too.


#5

Hi
My name Keith.59 I have just been diagnosed with PD after a 4 year journey .
I prolapsed a lower disc at work which gave me serious problems but after a epidural injection the pain subsided but I was having problems with my left side especially my leg and foot .I attended Preston royal hospital neuro dept and had .2 emg test for mythemia gravis due to my left eye drooping and dribbling from the left hand side of my mouth.
All the tests came back negative.I asked for a second opinion at another Hsp but the consultant wanted to repeat the emg tests which again came back negative.
I went for 4 session of Bowen treatment which slightly helped but the Lady told me that all my muscles were very taut and advised me to make a list of all syptoms and take it to the next neuro appointment which turned out to be the best advise so they can see the full.picture.
At the next appointment I was seen by a junior registar who read the syptoms and sent me for another brain scan and a DATSCAN which proved positive although it not a good result knowing someway helps.
I have started on Co careldolpa which I hope will ease some of the problems.


#6

Hi @trailerman121,

A warm welcome to the forum.

It sounds like you’ve had quite a difficult and confusing journey so far which couldn’t have been easy for you. Given that you’ve recently been diagnosed, I think it would be really beneficial for you to take a look at the ‘Newly Diagnosed’ section on our website. It has a lot of useful information that I think you’d appreciate knowing.

We also have a dedicated team of advisers via our helpline service who can offer more help and support that’s specific to your needs. If you give them a call on 0808 800 0303, they’ll be more than happy to help you.

I hope you find the above information useful.

Best wishes,
Reah


#7

Hello. I am 58 and started with some symptoms 7 years ago. My diagnosis was confirmed on 6 March. Like @trailerman121 it’s taken several years to be diagnosed and a Datscan last July tipped the scales to Parkinson’s. At first I didn’t find the Madopar very effective but I now seem to be getting the hang of timing it before meals and so am feeling it is having some effect but also aware of when it is wearing off.

I have been referred to a Parkinson’s nurse but won’t get to see her until May

Out of all the symptoms I experience, the one I find most debilitating is the fatigue - I feel like the bunny who didn’t get the Duracell batteries and the energy just suddenly drains away.

It is great to have this forum and to know that everyone contributing understands how this condition feels - not only the physical aspects but how, if you’re not careful, it can strip away your confidence and sense of self.