Hello, My Husband has just been diagnosed with Parkinsons, he also has Bipolar Depression and Anxiety at the age of 49. We where given the information by letter and it came as a bit of a shock so we have questions but don't know where to turn as his next appointment is not until September. My husband has not dealt with this information very well as you can imagine. Any advice would be helpful.
it is a great shock without a shadow of a doubt. It takes a while for it all to sink in. I can still remember thinking that it was the end of my world.
It was not the end of my world, it was a change to the world I knew. This sounds really smug, it is not meant to. A great deal depends upon the kind of person you are. Some need to know all the facts others bury their heads in the sand. The thing you must not do is to knee-jerk react when this can be very detrimental to those around you.
The reason you contacted this site is probably because you need to feel as though you're not alone. You are not.
For me it was a great relief to have a positive diagnosis of something since I spent years feeling like a hypochondriac and never out of my surgery. The minute I received my diagnosis, I stopped seeing my GP. He only became an intermediary between me and my consultant.
Please use this site as a sounding board, friendly advice and generally people who understand and can listen to whatever you want to say.
It is especially difficult to believe that you will ever come to terms with it.
Hi Leith and welcome to the forum. I just cannot believe that your husband was given his diagnosis by letter. No support and no information or chance to ask questions. You both must feel totally devasted. You can always get excellent advice from the helpline, the number is at the top of the page, and don't forget tht we are all here to support you. Ask any question and there is sure to be someone who can help. No two PwP are the same but we do share similar experiences.
Best wishes to your husband, tell him that if he wants to chat, or moan, ask questions or play games on the Social Club site he can always join us.
I can understand completely how your hudband and yourself felt getting such news in a letter...12 years ago I was also told in a letter that I had PBC and that the prognosis was there was no cure and that I would be dead in 12 months. Boy am I glad he got that totally wrong.
Like Mrs T and Pebbles said use the forum to rant, ask advise, for anything. The members here are really good people come in and have a chat anytime of the day or night, there is usually somebody about.
Welcome, you have taken the first step, hope to see you again here.
The best of everything to you and yours,
Welcome to the forum!!
Boy, have we scraped the bottom of the barrel with the way your husband was diagnosed.
As others have pointed out, a PD Nurse on the helpline can be a point of reference. I am sure they have heard all the questions before and will provide you invaluable advice.
Ask any questions on here as well. We'll do our best to answer them and to provide you links to some valuable resources.
I started a thread a few months back titled "Age and Date of Diagnoses" under the "Newly Diagnosed" section. You'll find a dozen people diagnosed in their late 40's to early 50's. Maybe check their posts. Feel free to add your name (on behalf of your husband) to the list.
Best wishes to you both,
hello leith & welcome,
please read mrs t's post again & again. It is sound advice. You will, I hope gain much of that from this forum. Also a feeling of belonging, not to a club, but to a particular section of the human race that has a condition called PD
We can debate about it, laugh about it & even forget about it for a while.
With my very best wishes
I too was informed by letter and I was gutted! its such a life-changing diagnosis that I feel it should have been told to me personally. I had assumed when I received the letter that it would be good news and that my scan didn't show up anything- but NO! Seemingly its a common thing t do -up in my part of Scotland anyway.
Thank you for the welcome.
My husband and myself will need to sit down and write down the qusetions we have running round in our heads so we can then hopfully get some answers.
hiya leith welcome to the forum
i should imagine it was more of a shock to recive that news through the post,how awful,i thought they would of told u fae to face,anyway u will recive alot of info on here and there is good folk on here to talk with ,newbies and more experinced about the condition ,i hope to see u around the forum ,pop ur head in the cafe for a cuppa alot of us hang out there x
Of course getting this diagnosis by letter is appalling. However, as far as questions are concerned this could be a good thing. I found my brain whirring away searching for questions to ask immediately after having been informed in a sympathetic voice that I had 'mild Parkinsons'. I did get a few in, but most questions surfaced afterwards during the course of the following week and then I found contact with a person with PD (I did not know anyone with the disease, but was given a telephone number by PUK))and the material Parkinson's UK sent me very helpful.
i cannot give any magic answers but what helped me a lot when at 44 i was told i had pd was to listen to the official parkinson site , it is a great help to me and if you ask everybody else their advice you get so confused and scared,,,so to start with stick to the parkinson site....keep strong
Buzzicles . I thnk if you could get some help with sleeping it might help you cope a little better . My husband had a very difficult time with sleeping until they tried him on a controlled release Sinemet at night along with a low dose Amitriptyline which these days is also used to help with nerve pain .
It does help him at night , but does take a while to settle in