Pnew diagnosis


#1

I’m Daz I’ve just been diagnosed with early stages Parkinson disease and am not in a good way I try to hide it from my wife how I really feel as I do not want to burden her with my disability.
I have been put forward for DBS surgery as my tremors are really bad but don’t know how I feel about this I think it’s the unknown also I’m not too keen on being semi awake for the operation.
What I am seeking is some advice on the stages of Parkinson’s also can you ask to be put under general anesthesia for the operation and what is the recovery time. I have other health issues such as Degenerative disc disease and I had Caudia Equine Syndrome which caused nerve damage in my legs.
Not knowing much about Parkinson disease is my main concern and the surgery.
I am 46 years old and used to be a very physical person as I was a builder.

Any advice from someone would be greatly appreciated.

Many thanks
Darren


#2

Hi Darren you are in the right place for advice but you have to bear in mind that no two people with pd are same I am 9th member of my family with pd and whilst we all have a few symptoms that are same we also have things that nobody else has there is a lot of info out there so I would suggest you take time to check out all options some meds work for some people and not for others I would suggest that if you don’t have a pd nurse you need to get in touch with your local health board they will be invaluable to you as is helpline try to keep clear head if I can help please do get back to me
Pete


#3

Hi @Darren1972,

Welcome to the forum.

I’m really glad to see that you’ve already received some good advice from peter_corcoran. Being newly diagnosed with Parkinson’s is not an easy thing to come to terms with so it’s completely understandable that you are not in a good way. We recognised that this can be quite a daunting time which is why we have an entire ‘newly diagnosed’ section with the essential information, including the different stages to Parkinson’s. You can find this section here - https://www.parkinsons.org.uk/information-and-support/newly-diagnosed-parkinsons

Regarding your your DBS surgery, we also have information on this here - https://www.parkinsons.org.uk/information-and-support/deep-brain-stimulation, which you may also find helpful.

I appreciate that this is probably a very overwhelming time in your life and although I’m confident that you’ll receive more supportive advice from the forum community, we also have a great helpline with highly knowledgeable advisers that would be more than happy to support you further on this. Please give a call when you can on 0808 800 0303 from Monday-Friday: 9am-7pm, Saturday: 10am-2pm, or you can email [email protected].

Do take care.

Best wishes,
Reah
Forum Community Manager


#4

Hi Daz, My husband was diagnosed 20 years ago at aged 46 so we know how you are feeling. Can I suggest that you let your wife know how you are feeling. She will want to know to enable her to cope with it. I need to know how my husband is feeling so that I can help him the best way I can. He used to be as deep as to the ocean and not say very much at all about how he was feeling but slowly, over the years, I have encouraged him to let me know. We are dealing this disease together, as a couple, and it should be the same for you and your wife. If she doesn’t know, she won’t be able to be help. This forum is extremely helpful when you need to know any information or support. I have to say that Parkinson’s is a very weird disease and no two people will be having the exact same symptoms. When hubby was diagnosed, I just thought PD was about having tremors; he doesn’t have any tremors (apart from a tiny one in his face) but he has loads of other symptoms. I don’t know anything about DBS but I do hope that, if you undergo it, it goes well and that you get the relief from the tremors that you are seeking. Please talk to your wife, she will not see it as a burden. She will only want to help and be there for you. Take care.