About the Introductions and Personal Stories Category


#1

If you are a new member, welcome to the forum!

This is the place for introductions and for you to tell us a little bit about yourself. Do you have Parkinson’s? When were you diagnosed? Do you still work? What’s your family situation? Or maybe you care for someone with Parkinson’s? Tell us about it.

If you’ve been here for a while and want to share some aspect of your life or your journey with Parkinson’s, this space is also for sharing that.

Please also have a look at the terms of use for our website and the forum rules. Our forum tutorial videos give some useful tips and things to remember when making posts.

Further information


pinned #2

#3

Hi, I’m new to the forum, my husband has been recently been diagnosed with PD. I am shell shocked after having such a terrible year. So many of my family were ill last year, I supported them all through operations, chemotherapy and then I lost my mum after a 6 month illness. Though I would not change being with her and had some lovely moments, she was independent and making sure she was being looked after, was exhausting - I got caught up in a system I knew little about, fighting both the hospital and social services to make sure she wasn’t sent home to a place that wasn’t safe for her. She wouldn’t let me claim any benefits for her and I would be constantly online researching charities etc, once I got home. I never got her home which is my one regret but I did try. I have barely had time to catch my breath when we received this news… He was my total rock and had been saying that he had a trapped nerve! He is so worried that he is going to do the same to me and wear me out. I am trying to stay positive and reassure him. He has the Billy Connolly left arm tremor but on the plus side (I hope) the left lobe lesion is described as being ‘insignificant at this stage’, he doesn’t even take aspirin so I doubt he will try pills unless he really has to. He is staying active which I am encouraging him to do but like another posting, I don’t know whether to back-off and leave him some independence at this early stage, or stay close. I was supposed to return to work this year and was quite looking forward to using my brain again! I lived off a redundancy payment all last year but it won’t last forever, on the other hand, he has to come first. Selfishly, I’d like to go to a bungalow sooner rather than later, so we can still make friends together in a street but he says the thought of moving is scary. I am rambling on - sorry, but we have only had the diagnosis from the consultant, haven’t even seen the PS specialist nurse or had a doctor talk about what to expect yet. I am already reading and reading trying to see how to make the journey easier.


#4

Hi Wiffey,

Welcome to the Forum. I’m very sorry to hear about your very difficult year, and your husband’s recent diagnosis. There are a few areas on our website you might want to take a look at, as they will hopefully have some advice and information that you may find helpful.

Firstly, you can find information and support for people newly diagnosed with Parkinson’s here: https://www.parkinsons.org.uk/information-and-support/newly-diagnosed-parkinsons

You can also find more specific advice on caring for a loved one with Parkinson’s here: https://www.parkinsons.org.uk/information-and-support/caring-someone-parkinsons

And lastly you might want to think about contacting our Helpline - a great source of information, advice and support on all areas of living with Parkinson’s. You can reach them via Email at [email protected] or Call FREE on 0808 800 0303. They’re available on Monday-Friday from 9am-7pm, and Saturday from 10am-2pm.

I hope this helps.

Best wishes,

Owen,
Moderation Team


#5

I have had


#6

Hi everyone - I was diagnosed with Parkinson’s about 9 months ago. I am 68 and was totally stunned when I was diagnosed - I have always been fit and healthy. The tremors are the worst part and the prescribed medication does not seem to have any effect. I have found a source of
RSO oil which does help. I am so pleased to find a group to share with and who I know understands and I thank all of you for being there.
JeanG


#7

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


#8

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?


#9

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


#10

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.


#11

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.


#12

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


#13

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


#14

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


#15

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)