About the Introductions and Personal Stories Category

Hi @Jean6254,

Welcome to the forum.

I’m sorry to hear about your recent diagnosis; it’s completely understandable if you’re feeling shell shocked, this is not the easiest news to digest.

We know that Parkinson’s affects everyone differently which is why we have a ‘newly diagnosed’ section on our website with all the information you need to support you during this time. There’s information on the different types of support that’s available to you, support for your family and an introductory guide that you can download. You can find this info here - https://www.parkinsons.org.uk/information-and-support/newly-diagnosed-parkinsons

Also, our helpline and Parkinson’s local advisers are here to answer any questions you have about your recent diagnosis and life with Parkinson’s. Do give us a call on 0808 800 0303.

I hope you find this information helpful.

Best wishes,
Reah

Hi my name is Marian, and my husband was diagnosed with Parkinson’s 17 years ago. He is now 72. He is still working as an accountant in his own practice. Up until a year ago his PD was reasonably mild, just dexterity problems with buttons, laces etc, and difficulty writing, although he started using his left hand instead. He also had stiffness and slight balance problems (he fell and broke his hip 4 years ago). His other problem is severe constipation.
Since December 2017 his condition has worsened, with severe pain in his right leg (the one with the hip replacement) when walking. His parkinsons nurse said he was under medicated and increased his sinemet. This resulted in hallucinations which were a bit unnerving for me (I thought he was losing his marbles!) and unpleasant for him as he felt not in control. He stopped taking the increased dose, and the hallucinations have diminished, but his mobility has worsened, and he now walks with a stick and suffers pain. He would like to exercise more but the pain is making this difficult. His cognitive skills are also impaired and he is finding it difficult to work ( I think he should give up, or at least cut his workload, but that would another bit of his independence gone which he would find hard). The parkinsons nurse said recently that reducing his medication won’t make the PD advance any quicker, it will just give him more symptoms and left the ball in his court. We havent seen a PD consultant for 3 years, so not sure where we go from here Does anyone
else have a similar experience or any suggestions?

Hi @marianwalker,

A warm welcome to the forum.

This is a really tricky situation - has your husband received physiotherapy for the pain in his leg following his fall? If not, it may be worth asking his GP to refer him to one as this could help with the pain and his mobility. We have more information on this here - https://www.parkinsons.org.uk/information-and-support/physiotherapy.

As this is quite a complex situation, I would also advise you to contact our helpline for more information and support. Do give them a call as soon as you can on 0808 800 0303 from Monday-Friday: 9am-7pm, Saturday: 10am-2pm, or you can email [email protected].

I hope you find this information helpful.

Best wishes,
Reah

Hi, my name will be TheFallen for security reasons. I live in Qld Australia. I was an emergency RN in my final job back in 2013 after a diagnosis of PD in 2010. Im married with two children 26 and 35. Im 58, male. Im active and sceptical about what PD is, how its treated and many other aspects like diagnosis and prognosis. Right now Im off some prescribed meds.

Why? This paper “Parkinson’s disease managing reversible neurodegeneration”. Its sobering. I esp am interested in the horrendous cascade of effects from Carbidopa that are known to be lethal, thought to be irreversible neurodegeneration PD symptoms but are instead reversible. Ive seen this before, its bad medicine, so Im going to try L Dopa from Mucuna without carbidopa and instead 5 HTP plus supplements as described.

Hi Reah
David was receiving some physio which has finished, but our PD nurse said she will arrange for some more, we are just waiting to hear…
I will definitely contact the helpline as you suggested.
Thank you for your help, I’m so glad my daughter-in-law set me up on this site, it is so nice to know there are people I can chat to who understand, and it has been helpful reading all the stories on the forum.

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Hi

I’m new here at basically I’m at my wits end and feel like giving up.

I’m 35 and have been my fathers sole carer (with help from my husband) for the last 8 years since losing my mom to cancer.

I have my own health issues diagnosed with fibromyalgia but currently under tests for MS along with depression and anxiety since the death of my 2 twin daughters in 2011.

I try my best for my dad do everything for him available day and night to do for him and take him anywhere he wants to.

A couple of years ago I found out he was calling sex lines I felt sick a huge row erupted and that was that I didn’t tell anyone not even my husband as I felt embarrassed for my dad and myself then it happened again a few months later huge phone bill so swapped him to pay as you go told my husband and after another row with lots of tears he promised never to lie to me or do it again.

Then on Saturday out of the blue he decides to tell me and my son who is 16 he played roulette On one of these tv shows I obviously gave a disapproved look and he said it’s fine only cost me £8 I was £41 up but then lost it my son couldn’t understand why I have given such a look but it screamed compulsive behaviour.

On Sunday while he was at my house at a family and friends gathering he decided to tell me he was taking a friend out for dinner as she felt down ( they met at a support group) I said oh ok as I’m a date he laughed and said I’m sure your mom would approve it felt like I died inside and I was angry he had said this in front of friends.

I spoke to him about this on Monday as I was crying and he said he wouldn’t take her out as he didn’t ever want to upset me I explained it’s not my place to say he can’t but he could have chosen a better time to tell me anyhow he said no forget I ever said anything.

So leads me to last night he had slept most of the day and told me during a phone call he will have to have a go on the roulette rig he can’t sleep I didn’t answer him and thought I will have a chat with him today.
So I’ve visited him today and after checking the bank saw transactions totalling around £20 I googled the company and something wasn’t adding up so I asked him what number he was calling he said he didn’t know so I looked at his phone after googling the number it’s sex lines again I asked him 3 times tell me the truth what the number is and he finally admitted it was sex lines I felt sick again and just told him I’m not sorting the financial mess again and walked out.

I’m ready to run off and give up I can’t take the stress worry and upset time after time I promised my mom as she was dying I would always look after him but I feel like I’m drowning in it all.

So sorry for the long post

Hi nen83,

Welcome to the forum.

I’m really sorry to hear about what you and your family have been going through. Unfortunately, Impulsive and compulsive behaviour is a possible side effect of some Parkinson’s drugs. You’ll see on the forum that many of other members have experienced the same side effects - Hypersexuality problems

Only a relatively small number of people experience this, but it can have a big impact on the person affected and those around them. I’m pretty confident that your dad is experiencing this and I would urge you to speak to his GP or Parkinson’s nurse about this asap so that they can review his medication. There is treatment available which involves reducing the daily dose of Parkinson’s medication, or changing a dopamine agonist prescription to levodopa or another type of medication. We have a lot more information on this via our website here - https://www.parkinsons.org.uk/information-and-support/impulsive-and-compulsive-behaviour.

We have produced an ‘Impulsive and compulsive behaviour in Parkinson’s checklist’ which can help you talk about this issue with your dad’s specialist or Parkinson’s nurse - you can access this here - https://www.parkinsons.org.uk/sites/default/files/2017-03/Impulsive%20and%20compulsive%20behaviour%20checklist.pdf.

Our confidential helpline and Parkinson’s local advisers are here to answer any questions you have about impulsive and compulsive behaviour. Feel free to give us a call on 0808 800 0303.

I hope you find this information helpful and somewhat reassuring knowing that your dad’s behaviour isn’t uncommon for people with Parkinson’s.

Best wishes,

Reah – Forum Community Manager

I can’t see a’Compose’ tab anywhere ??? Do peopel just reply to eveyrthing?
I was newly diagnosed in April 12 after 18 months of waiting lists, tests, consultants etc. I have spent the last 2 weeks in shock. The Parkinson’s local advisor i saw said I was like a ‘rabbit in headlights’. I am just getting it finally processed through my head. I haven’t the strength to be open at the moment. i am slowly telling one person and then maybe two next week. The extremely good second consultant has put me on medication straight away. It’s one day at a time at the moment. I think I will need to start a diary otheriwse I will just waffle on here.
thanks for listening

Hi @Siwan,

Welcome to the forum. I am really sorry that you are going through a difficult time after your diagnosis. It is absolutely normal to be in shock and to take as long as necessary to open up about it to others. Hopefully you will find some comfort here in the forum, where you can find support from people who have gone through what you are going through.

In the meantime, if you would like to post your own thread, you can do so clicking the +New topic button that you can see at the top right of the forum’s main page, highlighted in green below:

Please don’t hesitate to “waffle on here” and keep us posted.

Best wishes,
Mara
(Moderation Team)

Hi. I am Zo and we have just been told my husband, who is 51, has early stages Parkinson’s. Although this was a blow to hear, it was also a relief to have an answer (after two years of tests, scans etc).
My husband doesn’t have any obvious external shakes. He has stiffness, particularly on one side, internal tremors and tends to shuffle when walking. The symptoms are slowly getting worse.
He recently had a DATscan which came back as normal though. Has anyone else had a normal DATscan but still diagnosed with Parkinson’s?
We are both trying to be positive but the unknown is daunting.
Thank you for listening x

Hi @Zo3,

Welcome to the Parkinson’s UK forum. :slightly_smiling_face:

I’m sorry to hear about your husband’s recent diagnosis, Parkinson’s affects everyone differently and though it is a relief to have an answer, it can also evoke a range of emotions. We want to be here for you and your husband every step of his journey with Parkinson’s which is why you should check out our ‘newly diagnosed’ section. We’ve the information and support to help here - https://www.parkinsons.org.uk/information-and-support/newly-diagnosed-parkinsons.

Regarding your query about the DATscan, diagnosing Parkinson’s can take some time as there are other conditions, such as essential tremor (see ‘How long will it take to get a diagnosis of Parkinson’s?’), with similar symptoms. There is also currently no definitive test for diagnosing Parkinson’s. However, there are a few ways that a specialist can diagnose someone with Parkinson’s, which includes investigating symptoms, MRI or CT scans, SPECT or DATscan. Please visit our website for more information on this - https://www.parkinsons.org.uk/information-and-support/how-parkinsons-diagnosed.

I hope you find this information useful.

Best wishes,
Reah
Forum Community Manager

Thank you so much! It’s good to know there is support out there and others to share the journey with.
There is so much to take in and I appreciate the links and information.
Thank you! X

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You’re welcome, @Zo3. :slightly_smiling_face:

From the moment I was diagnosed with Parkinson’s disease, I lost all interest in life. But I must continue to live for the sake of my children and relatives. I am ashamed of my illness, so now I hardly communicate with anyone. I would like to find new acquaintances, among those who are faced with this still incurable and poorly understood disease.

Hi evanssophiya welcome to the forum I am 9th member of my family with pd so have gained a lot of info firstly why are you ashamed you are still the same person but with an illness you could do nothing about my late dad was ashamed and I vowed it would, nt do that to me and it won’t please feel free to contact me anytime I will help if I can you will find me and my good friends on insomnia thread and you will find some good words of comfort on parkinsons is poetry thread look forward to making a new friend stay positive
Pete

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Hi @evanssophiya
Im so sorry that you are suffering in this way.
I’m most definitely not religious so with that in mind I ask you to consider.
Live in the moment… We do not own the past just as we do not own the future.
We own only a rag of time, this moment we call the present… It is not necessary to expand the present to imagine the future frenzy of our lives… Time is like a meal----each mouthful separate and fabulous.

I hope I have not come across too (deep) but hopefully inspire you to look from another perspective.
Oh and if you are religious, then fine but I’m afraid it’s not for me I’m just a fellow human.
Hang in there friend
Tommy :pill: :pill: :pill:

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Thank you so much for all of your words of support! I am learning to be positive and to accept the present as it is.
Pete, thank you for inviting. As I will be ready, I write you on insomnia thread

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Hi feel free to get in touch with me anytime you want to I see you met another insomnia friend in Tommy look forward to hearing from you
Pete

My name is Diana and I am 50 years old. I have not being yet diagnosed with PD but I think that I have it. Lately, I am feeling confused, doing involuntary movements with my arms, feeling afraid of driving my car, changing and I have lost my memory. Sometimes, when I talk I say the word incorrectly, and the other day I was reading my doctor’s lab prescription and I could not recognize what I was reading. I have pain and weakness in my articulations and muscles, and I feel my body rigid early in the morning. I will tell my doctor about all this symptoms that are new to me. The other day I had a tremor that last like a minute and I did not know what it was until I read about it. My uncle suffered from parkinson.

Hi Diana,

Welcome to the community.
We’re sorry to hear that you have been experiencing these symptoms. If you think you may have Parkinson’s it is best to see your doctor immediately, as you are planning to do.
There is also some useful advice on our website here for anyone who is worried they may have Parkinson’s, and our free helpline is here to answer any questions you might have on 0808 800 0303.
We hope this is helpful for you.

Best wishes,
Edwina
Moderation Team