An Introduction

Hello,I was diagnosed in September last year,(and am a new boy) and have difficulty speaking and writing. My balance is not good either. but I can’t fault the NHS (once i was diagnosed.)

I was invited to introduce myself-so here it is.

e

Hi chrispy1, welcome to the community. You’ll find lots of friendly advice here, we’re a very helpful bunch! And don’t forget, if there are any queries or concerns you have that you can’t find an answer for, you can always contact our Helpline. They’re able to offer professional advice on a wide range of issues. You can reach them via email at [email protected], or call free on 0808 800 0303. Lines are open Monday to Friday from 9am to 7pm, and on Saturday from 10am-2pm.

Hope this helps.

Best wishes,

Owen,
Moderation Team

Hi crispy1 & welcome. You’ll find plenty of friends here. Glad the NHS has been kind to you. :slightly_smiling_face:

Welcome crispy1 to our forum. You will find us are all friendly and willing to share but do remember Parky affects us all in different ways. I agree about the NHS it was a battle to get support and help but once in the system and dx with Parky in Dec 2016 can’t fault there support.
An example being only today, I was having a really bad start to the day and got quite worked up and anxious as my meds didn’t seem to be working. Left a message on my Parky nurse group answer service and she called me back within in an hour and was very supportive and helpful. This certainly bug my mind at rest and I am seeing her on Thursday and we will be discussing current meds and what can be done.
Anyway welcome ask anything and rember to try and stay positive and accept the support available , local, Parkinson UK helpline or fellow friends you are yet to meet on the forum :sunglasses:

Welcome Chrispy,

Hope you get all the help you need a deserve.
A long road but one we will support you through.

Annie

Hi Crispy My husband diagnosed June 2018 age 49. I am currently 47. This wasn’t really the way either of us saw life panning out. At the mo he is on co-caraldopa (Sinemet type meds probably spelt wrong). He takes this 5 x per day. Due to struggling with restless leg syndrome he has also started taking another tablet to make others more effective- agonist type thing. We first went to doctors after noticing slurred and quiet speech for about 6 months. He was also shouting and punching in his sleep. Making nights in bed together interesting for all the wrong reasons. Initially his bloods showed a b12 deficiency and he was given booster jabs for 2 weeks and now has them every 3 months. Nights now more settled apart from the two weeks just before he is due for the next jab. He is currently ok slurred speech only when tired. He finds lack of dexterity with fine motor movements massively frustrating - eating his dinner with knife and fork takes ages. However he is a builder and still working. At the moment he is more agile and mobile due to meds’ than when first diagnosed. He suffers from a stiff neck, shoulder and back pain. He has intermittent pain down his leg. However we aren’t sure what is PD an what is normal wear and tear from a tough manual job. To be fair at the mo life is good. We have a 14 year old and making the most of every day. Not sure how long this luxury of a normal life will last but we treasuring every minute. Sorry for the enormous reply but this is our journey so far. No idea what our future holds. Genuinely hoping you are in a good place at the moment. Such enormous news to take in. I’m guessing like us you just want clarity about what your diagnosis means and implications. All we have been told is that PD is a boutique illness and different for everyone. Pretty frustrating for making plans. Hang in there. Sending you and your family all our love.

Hi Gertty. I had the same problem with my B12 levels like your hubby and my GP checked the drug bible (BNF I think its called) and I have been having B12 injections every 8 weeks and I don’t get mouth ulcers and tiredness as much. The guide states that anyone with a neurological medical can try this. Speak to your GP xx

1 Like

Thanks Poppy. Three months seems too long. In the 3 weeks before jab loads of mouth ulcers and lots of lucid dreaming. ThanksI think we will deffo follow up the8 week gap. Thanks again.