Local support

About Parkinson's and health Newly diagnosed
1

Hello, I’m a new member. My husband has recently been diagnosed with Parkinsons (in January) we live in North East Cornwall and so far we haven’t been able to find any support groups locally. Our GP surgery doesn’t have any Parkinsons support and we haven’t had any support from the hospital either. It’s quite worrying not knowing how to move forward and what we can expect. Does anyone know of any support in the Launceston (Cornwall) area please? Many thanks.

2

Why not ring tel line here [Helpline 0808 800 0303]

What will occur is your husband being prescribed a dopamine replacement Parkinson medication.

A trial & error medication. I take Sinemet.

If you have any questions do ask.

Best wishes
Steve2

3

Hi Jay2,

Welcome to our community forum. We’re happy to report we can help with this. Please have a look at this page of our website, which will lead you to local resources: Support for you | Parkinson's UK. We also have a free and confidential helpline on 0808 800 0303 if you would prefer to speak with someone over the phone. Our wise and friendly advisors have helped loads of people find care and they will happy to speak with you.

We hope these tools can help, and with our warmest welcome,

Jason
Forum Moderator

4

Thank you for your reply, I’ll give that number a call. Yes, he was started on a ‘test dose’ of co-beneldopa by a general medicine doctor in hospital in early January but then he was transferred to a different hospital as he was actually in hospital for a completely unrelated reason. In the second hospital they told him he would be contacted regarding the Parkinsons diagnosis after he was discharged, he came home 4 weeks ago and we haven’t heard any more - we have tried phoning the hospital but just go round in circles, no one seems to be able to tell us who will be seeing him or when or even who referred him regarding the Parkinsons. The GP surgery has been pretty unhelpful, they just said they won’t deal with it and he’ll need to see a neurologist and will have to contact the hospital - which we have already done several times.

5

Thank you for your reply. I have tried the local support page on the website, however when I put our postcode or town in, it comes back with nothing. I’ll try the phone number next week. Many thanks.

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Morning Jay2 … You might go down the private route initially. Look up your local Nuffield hospital they will have a list of neurologists, pick one that takes NHS patients and go and see him / her. Costs about £250 but gets the ball rolling. You can ask if he/she would take you as an NHS patient or refer you to someone who would.

All you will get is a prescription for Parkinson’s medication. You will also need a Parkinson’s nurse to deal with the month to month running of your husband’s Parkinson’s. There is no cure for Parkinson’s just medication.

I have other health issues as well as Atypical Parkinson’s and my GP isn’t qualified to deal with my Parkinson’s issues.

My GP did arrange for me to have a datscan of my brain, the results were positive for Parkinson’s. Positive or negative datscan you still take the same medication. They look to find a medication that works for you as an individual. I tried two that didn’t work before I found one that did.

I am 71 years old. I also have spinal stenosis and mild neuropathy and I have Atrial Fibrillation.

Eat well, cut out the booze & exercise.

Any questions please ask.

Best wishes
Steve2

7

Hi Jay2,
I’ve been caring for my husband since he was diagnosed at 41. He’s now 64. If I may offer some advice…

  1. If your husband has mobility issues contact your local council and arrange to have a home assessment done. They will come out to your home and assess what ( if any) mobility aids your husband may need. This covers everything from memory foam mattress toppers and electric anti pressure chair cushions to grab rails. ( usually supplied and fitted by Milbrook healthcare)
  2. Contact the Parkinsons Community Nurse team for your area 01209 318 048 its my experience that they hold the most clout in getting things moving and they are an amazing resource. There is more information here… Parkinson’s nurse specialist service | Cornwall Partnership NHS Foundation Trust
    They can also hopefully tell you who the Parkinsons nurse is for your area. They usually work within the same building as the community nurse team and are a good bridge gap between neurologist visits and also if you need any advice or are concerned about anything.
    Be aware though they are usually hard to get hold of as their area is usually massive!
  3. Register yourself with Carers UK - again they are another access point for you and will be there for you as a carer. It can be hard for us and you must always remember to take time for you and recharge your batteries.
  4. Don’t settle. I moved my husband to a different GP as the one we were with originally just couldn’t seem to get their act together. I did the same with his neurologist and it was the best move I ever made. He has an amazing neuro now and his meds are better than they have ever been.
  5. Know that there are always people on here you can talk to and who understand.

I hope this helps

Very Best Wishes,
Beth

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