Hi, and a very warm good morning, on a chilly morning, I was diagnosed 7 years back , at 39 it was virtually winning the lottery, the doctor had no words to console me. I have been through a lot of rough seas living with pd. At the moment I’m on furlough, working in hospitality, but there’s lot of uncertainty as to resuming work, but more , if ill be able to after a year in confinement.
I just happened to see this link, as i was browsing through parkinsons art.
i have scribbled on pages venting my energy trying to sketch. please visit the site for a virtual visit tothe gallery and view some talented artists. thank you
It may be a chilly day but here’s a warm welcome to our friendly forum. I’m sure you’ll receive replies from your fellow members, some of whom will be artists or art lovers.
These are indeed difficult times for everyone and, when you have an additional concern like Parkinson’s, it can be even more challenging. Others will likely have a lot to share with you.
I also wanted to tell you about the Parkinson’s UK website which you can find here. You’ll find a lot of useful information about Parkinson’s so take your time and explore. If you need more support, do you know about our Helpline at 0808 800 0303?
Best wishes,
Janice
Moderation Team
I am not new to parkinsons I have had it for 12yrs, I have been retired 12yrs, i have been doing longbow archery until this year parkinsons has beaten me i cannot pull the bow anymore.
Hello everyone,
I am new here, and glad to see you.
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Hello back to you👍
Hello, Marian,
I suppose my husband’s Parkinson’s journey has been quite similar to your husband’s. Mine was diagnosed in 2013, and we were managing quite well until the beginning of last year. We were returning from holiday (in those happy days before Covid) when he started to behave very strangely; neither the cabin crew nor I could understand what was happening. After we arrived home, he started to have dreadful hallucinations: children running around, tramps sitting round our dining table and a Japanese lady putting something up her nose, amongst others. He asked me to ask the Japanese lady what she wanted as I was “fluent in Japanese”, but I didn’t think, having watched a few episodes of “Shogun” decades ago really qualified me! Our GP was wonderful, and came out during lockdown to help us, but ultimately my husband’s consultant told me to get him to A&E, where he had tests to make sure the hallucinations were not the result of an infection. There followed many weeks in hospital, during which time I was unable to visit, and ultimately he ended up in a care home. His cognition has greatly improved, though I wouldn’t say it has returned to normal, but he has become physically frail and has experienced several falls. Our house is not safe enough for him to come home, as we have glass and steel stairs and tiled floors. For some time, I had been suggesting that we moved somewhere more manageable, but he always insisted that his work must come first. Now I am left to try to sort out all the paperwork he has accumulated, some of it going back to the 70s, and will have to manage the sale of our home and the purchase of another property by myself. If I am able to find somewhere suitable, he may be able to come home, though I can see a few problems arising from that as he has to have help through the night to turn in bed because of the pain in his back and hips. Sending my best wishes to anyone dealing with this dreadful condition.
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hello I am speaking for my wife Margaret she is 79 and was diagnosed 3yrs ago
She has been managing on her meds quite well but recently has become agitated and confused and is arguing against taking the med at the right intervals as the Consultant advised her appetite is low and
we are are not getting out due to the Covid (I am shielding) I am 82 in April, active and still driving etc
But would like to know how I can help my wife we have been married 61 yrs so I know her quite well !! but this PD is terrible to deal with now because she is upset quite a lot each day !!
advice of any kind is most welcome Thank You
Hi @guitarman and a warm welcome to our friendly forum.
Sixty-one years, how wonderful! Watching your loved one struggling isn’t easy, and it’s important that you also take good care of yourself and your own needs. I’m sure you’ll get some great support from other members soon but in the meantime, you might like to read about caring for someone with Parkinson’s on our website here
You can also contact our helpline and speak to one of our advisers about any concerns that you may have. Do give them a call on 0808 800 0303.
Best wishes,
Janice
Forum Moderation Team
I cant work out how or where to introduce myself
Hi am also new to the Forum, you have had such a bad year and sorry that your husband has to live with Parkinsons,
My husband was diagnosed in 2014, he is 83, he is still able to move around in the house knowing where all the “grab” places are actually still manages the stairs to go to the toilet as he prefers his own toilet upstairs. I can leave him for a couple of hours and we do pay for a wrist alarm that is connected to Sanctary it has worked on a couple of occasions when he fell in the garden and also in the garage. When we first visited the consultant and he was prescribed his Levidopa my husband was very reluctant to take them but the consultant said if he didn’t take them the next time he saw him he would be in a wheelchair, consequently he has taken his meds and it has kept him semi ambulant although he has a lot of freezes. I don’t help him too much getting about the house as he needs to be as independent as possible, Im sure this has helped him although he can no longer walk outside unaided but has a walker which he refuses to use inside. He is an expert (as he is an avid You Tuber) he reads everything about Parkinsons but sadly his memory and initiative is deteriorating. I have all the household accounts to do, everything is now in my name he cant use a bank account anymore because of hi hand tremor. My biggest problem is if anything goes wrong I have to sort it in the house car and garden which is worrying as I go into panic mode, however all this said we live a pleasant life …it is what it is I hope you can persuade your husband to listen to your consultant. Regards and best wishes
Hi Vivsy,
We just wanted to say hi from the Moderation Team, and to be sure you and your husband were aware of our helpline at 0808 800 0303, as well as the many helpful resources on the website. It is wonderful to hear that you are both keeping informed and taking your medical team’s advice. We hope you will also find some comfort here among our friendly and welcoming Forum community, and we wish you and your husband the absolute best.
Jason
Moderation Team
Hi. I’m Nina. My mother is at end of life Parkinson’s. I have been caring for her for over 1 1/2 years, in addition to my step-father who died of cancer last Feb. It has been tough as I live in another county and was only just married when my step-father needed end of life care (He was the primary carer for my mother). Life has been tough, especially with COVID. I stay with her as there is limited help and I’m really starting to feel the impact of it all now. Just reaching out to understand that others are in my position too and wondering how you cope.
Hi Nina,
We’re very sorry to hear how difficult things have been of late. Please feel welcome to call for a free and confidential chat with an adviser. Just ring 0808 800 0303. They are friendly and helpful, and have resources to assist carers and not just PWP. You might also find some comfort in the knowledge compiled in this section of our website.
Wishing you all the best,
Jason
Moderation Team
Hello, I am New to this Forum. I was Diagnosed with Young Onset Parkinsons in Oct 2018. I am a 46 year old male.
On furlough from work, and I have a Medical Driving License that expires next year.
I live at home with my Mum, who has not been well. Have been looking after her. She had been in Hospital, had driven to the Hospital around 3 times to deliver things for her. Phoned her up on various occasions, as was not able to visit due to Covid regulations.
Our next door neighbour is her older Brother who is a bachelor. I go to see him every day as I do his medication. Felt like his Secretary, as I had been dealing with his Post, Bills etc. Been driving him about to the local surgery and have taken him to the opticians. Have helped to cut his grass three times this year, and doing our gardening.
I had been my Mum’s unofficial carer. Feel as if I my life is on hold at the moment.
Hi Ahello,
Welcome to our lovely forum community. It sounds like you have a lot on your plate, so hopefully you will learn quickly that you are not alone in what you’re going through, and there are wonderful people here who understand and can share their valuable experience with you. We’d also invite you to peruse our website at https://www.parkinsons.org.uk/ where you will find loads of helpful information, and please don’t hesitate to make use of our helpline, at 0808 800 0303, staffed as it is with highly trained advisers who are able to assist with a variety of needs. Your questions don’t need to be medical, and you are welcome to call us just to hear a friendly, understanding voice.
Please accept our warmest welcome and best wishes,
Jason
Moderation Team
Hi ime new to the forum ,my husband has parkinsons, and ime finding it difficult some days , nice to know theres someone to talk to
Hi Chezza,
We just wanted to say hi and welcome to the forum. Over the coming days you’ll hear from our wonderful community, all of whom are welcoming and supportive and happy to share their experiences with you. We also have a website that is easy to use and full of helpful information, for family and carers as much as PWP. We recommend having a look at this section to start, and we want to be sure you’re aware of our free and confidential helpline at 0808 800 0303. Our advisers there are able to offer assistance in a variety of ways, so please don’t hesitate to reach out, even if you just need a friendly ear.
Our absolute best to you and your husband,
Jason
Moderation Team
Hi, I joined this forum today but wobbly fingers caused me to mis type my username 
It should be Woolhead but I think I’ve figured how to change it 
Anyhow all that aside I’m 66 yrs old and female and not quite sure if I have PD or not.
I was diagnosed with MS ( Multiple Sclerosis ) in 1992 by one lesion which showed up on MRI. The rate of progression with that has been thankfully slow although I have not been able to walk a great distance for a few years and for long outings I use a mobility scooter and for shorter distances , a rollator . That is until we went into Lockdown in March 2020 when my walking deteriorated and I found increasing difficulty turning in bed and getting myself out of bed without my husband’s help . Because of difficulty accessing my MS team I finally had an MRI in September 2020 which showed up no abnormal activity relating to MS. Fast forward to this year and I developed Bradykinesia and finally got to see my Neurologist a month ago, who categorically told me what I suspect all along that this is not MS , neither is it idiopathic PD. She put me on a low dose of Madopar for three months and has referred me for a DAT scan.
At the moment I’m feeling confused as to whether you can have both MS and PD or whether I was misdiagnosed in the first place. As well as bradykinesia I’m also getting problems with my speech - my voice has become very weak and sometimes hoarse. My neurologist also noted dystonia in my right foot, and whilst I have no tremor in my arms or hands, fine motor coordination is almost zero when it comes to handwriting and handling small items such as buttons.
My apologies for such a long posting and thanks for reading. 
Hi @Woolhead and welcome to the forum. I’m sorry to hear you are dealing with so much at once. Of course, only a doctor can diagnose you so I do hope your scan can give you some certainty about what’s going on with you. You’ve come to the right place for support. Our friendly members are sure to show up shortly to talk about their own experiences with getting a diagnosis and dealing with more than one condition.
I love that you ended with a smile. Attitude can make such a difference. While you wait for your scan, do feel free to browse our site for information, and give our Helpline a call where we have advisers who can advise and support you through this interim time. You can reach them on 0808 800 0303.
Best wishes,
Janice
Forum Moderation Team
