About the Introductions and Personal Stories Category

Hi, I’m David and I’ve been working for Parkinson’s UK for the past 4 and a half years as a Local Adviser in the Scotland team.

I’m here to help moderate the forums and help signpost you to useful information and resources.

Hello, Im Shona and Ive work with @DavidGoldthorp as a Parkinsons Local Adviser in the Scotland team.

I am also hear to help moderate the forum and information and support. :slightly_smiling_face:

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Hi, I’m Emily and I work at Parkinson’s UK in the Professional Engagement team, working closely with healthcare professionals.

I am here as part of the Parkinson’s UK moderation team to offer support and information :grinning:

this is the first time i have posted but i have been on the forum and i dont know where to start i read your reply to me when i replied to a post thanks for that.my husband has has parkinsons for ten years and it is very difficult to deal with for myself how do you get to be in contact with people who are in a similar position that reply to a post was some lady i could relate to as though i had wrote her post.thanks mpr

Hi everyone, I’m Katie and I’ve been a member of staff at Parkinson’s UK for just over 2 years. I work closely with healthcare professionals through the UK Parkinson’s Excellence Network.

I’m here to help moderate the forums and signpost you to useful information and resources.

Hi, I’m Nick and I’ve just joined the forum. I’m 51, diagnosed 2 1/2 years ago. I’ve read the forum on and off over that time, but only just got round to joining…

Welcome Nick.

Annie

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Hi guys, My name is rafal. I am the new one here and would like to say hallo to everybody ! My father suffers from Parkinson disease. I hope I will find plenty of information here so that I can make his life with parkinson a bit easier for him. English is not my first language. I hope you don’t mind that .

My name is Anne Poole, I live in Verwood and have been living here for about 30 years. I look after my husband Howard who is now in an advanced stage of Parkinsons. We are well looked after by a team of carers.Howard is 92 in July and I will be 85 in September. If anyone wants to know more about us I would be happy to provice it. I am known as Annie.

@Agnes99 Hi Annie, welcome to the forums and thanks for introducing yourself and your husband, Howard. I’m glad you are being well looked after by your team of carers, particularly at this difficult time with all the Covid 19 restrictions are making life more complicated.

There’s a topic area on the forums for Carers, Friends and Family which may be of interest, but do feel free to explore all the other sections too.

Do remember we also have our Parkinson’s UK Helpline and Local Adviser service which can provide practical and emotional support for Howard and yourself too.

Warm regards,

David
Forum Moderation Team

Welcome Rafal.
Annie

Hello everyone and thank you for welcoming me on this forum. I have recently been diagnosed with Parkinsonism at Ninewells Hospital. It was my second opinion, the first specialist doctor I saw was at Dunfermline Hospital in January. I am at a stand still as I do not know how to practically deal with all of this. I am from Belgium, moved 2 years ago to bonny scotland (my hubby is scottish) after living together in Belgium for 20 years. Dealing with NHS and procedures is all new to me, so if someone can help me out what to do next it would be much appreciated. I also have some questions about the side effects of my medication and how it can influence my daily life. I am 58 years old, a part time evening student at the University of St.Andrews, looking for a job (do I mention the diagnose or not). No kids, renting a wee house, hoping for a life without to much worries…

Hi @belgianbiscuit, :wave:

A warm welcome to the forum. :slightly_smiling_face:

You’ve definitely come to the right place for information and support. Even though you’re based in Belgium, we have a lot of information on the Parkinson’s UK website for newly diagnosed people with Parkinson’s that I’m sure will be very helpful to. You can find this information here: https://www.parkinsons.org.uk/information-and-support/newly-diagnosed-parkinsons

Parkinson’s affects everyone differently so your experience with medication to manage your symptoms may be different to everyone else. If you’d like to speak to someone about this, we have a team of advisers via our confidential helpline that have extensive knowledge on Parkinson’s related medication and would be happy to speak to you. Our helpline and Parkinson’s local advisers are here to answer any questions you have about your recent diagnosis and life with Parkinson’s. Call us on 0808 800 0303.

Best wishes,
Reah
Forum Community Management

Hi, new to the forum, unsure where to start, looking for a starting point and a friend suggested a forum. I am starting a medication and a little worried about side effects and feeling anxious :slight_smile:

Hi @AnaElsa, :wave:

Welcome to forum, we’re so happy we can be here as your starting point.

We have a lot of information on the Parkinson’s UK website around different medications that might help explain some of the side effects. However, Parkinson’s affects everyone differently so your side effects might be different to the next person.

Do keep chatting on the forum and remember we have a team of trained advisers, who have extensive knowledge about Parkinson’s medication, and can talk through your worries on our helpline via 0808 800 0303.

Best wishes,
Katie
Forum moderation team

Hi Katie, thank you, actually collected meds yesterday and started sinemet CR one tab for a week then increase to two a day for week two and three a day for week three, my neuro consultant sent me a copy of the letter and mentions another med Ropinrole. Feeling rather anxious and worried at the moment as I dont have a definate diagnosis and the mangement plan of meds is hopefully going to fix me! I have had scan and tests and more scans and last was the dat scan and my letter reads probably extra pyramidal disorder affecting left arm. Either way I’m taking each day as it comes and they are very early as one of the issues is no sleep but then can’t say I sleep in the day,just so exhausting, just putting one foot in front of the other! I have found lots of reading on this site and my consultant is going to check in with me to see how i go, fingers crossed I see some results! thank you for posting :slight_smile: :smiley:

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This is my first communication. I have had 15 months since being diagnosed with Parkinsons. I have great pain and weakness in my left side-consultants not sure what is the main cause-muscular-skeletal or neurological, or both. I have become disabled which is a shock to me and my partner-my mobility is affected. The single Parkinsons symptom causing me distress is the almost total disappearance of my handwriting.

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Hi @Morna and welcome to the forum :wave:

I’m sorry to hear about the distress caused by losing your handwriting. This is a common symptom of Parkinson’s and hopefully you can find others on this forum who can relate.

If you ever want to chat about your diagnosis or any distress caused by your symptoms please do call our helpline on 0808 800 0303 and speak to our trained advisers.

Kind regards,
Katie
Forum moderation team

Hello, I’m Molls, my husband was diagnosed in 2013 with Parkinson’s. Until a couple of months ago he’s coped really well. Had stiffness in his left arm, dragged his left leg a little, but still managed to play golf. With a buggy for the last year or so.
Lately his tablets have been wearing off before his next due dose, so his movement is restricted and night times are awful. He can’t turn over without my help. He’s also become very anxious, distressed and gets very hot and sweaty. We’re both struggling at the moment.
His tablets are being increased, over the last 2 weeks, but doesn’t seem to be any improvement as yet.

Hi Molls,

Welcome to our forums. We’re very sorry to hear about your husband’s recent issues. We always recommend speaking with your Parkinson’s nurse and GP about any changes in response to medication, along with employing the advice and feedback of our lovely community here. Please also feel free to peruse our website at Parkinsons.org.uk or call for a free and confidential one-on-one discussion with one of our specialists at 0808 800 0303.

All our best to you both,
Jason
Moderation Team