About the Introductions and Personal Stories Category

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

Hi Everyone, Feel like a bit of a fraud joining as it is my dad who has parkinsons. My dad doesn’t live near me,I try to see him about every 2 months but lately I can see more deterioration when I see him and I am finding it so hard not to be so angry at parkinsons.

Hi @Thilinie, :wave:

Welcome to the Parkinson’s UK forum.

You are far from a fraud, this forum is for anyone affected by Parkinson’s and that includes family of those with the condition. I’m really sorry to hear that your dad’s health has deteriorated and I can understand why this has made you angry. However, I want to reassure you that you are not alone and we have a lot of members who know exactly what you’re going through and I’m sure they’ll offer you some support as well. In the meantime, you may find tips from other family members on how best to manage the changes you see in someone with Parkinson’s, you can find this information via our online magazine here - https://www.parkinsons.org.uk/information-and-support/your-magazine/tips/tips-family-friends-and-carers.

Although you are not your dad’s official carer (or at least you haven’t stated this in your comment), you may find the practical help and advice on issues that may affect you in our carers guide, helpful. You can download this here - https://www.parkinsons.org.uk/sites/default/files/2018-09/B071%20The%20carer’s%20guide%20WEB.pdf.

Finally, we have a team of friendly advisers via our confidential and free helpline who would be happy to offer you more support for you and your dad.

Best wishes,
Reah
Forum Community Manager

Hello, this is my first post here. I got diagnosed with PD 18 months ago at the age of 53. To say it was a complete shock is an understatement. This is coming off the back of adopting 2 children 1 year previous. My whole world felt like it was crashing down on me and dreaded telling my wife. 18 months on I have gone through CBT counselling, physio and now on Repinorole. 5 months ago took advantage of early retirement and redundancy so now a stay at home father and house hubby. The only silver lining from this has been the time I can spend with my family.
My fears are that currently I am mobile with minor shake, though I do have heavy legs, how long can I enjoy being a father, do I tell the other parents at school run … hard having to hide my condition. Sorry for the rambling but hard to accept my condition.

Hi Peej, welcome to the community. Sorry to hear about your diagnosis. You might want to take a look at our website, where you can find out about the support that is available to you: https://www.parkinsons.org.uk/information-and-support/support-you

You might like to get in touch with our Helpline too, as they’re able to advise on a wide range of issues affecting Parkinson’s patients and their families. You can reach them via email at [email protected], or call free on 0808 800 0303. Lines are open Monday to Friday from 9am to 7pm, and on Saturday from 10am-2pm.

Hope this helps.

Best wishes,

Owen,
Moderation Team

Hi. I have never joined a forum before so all this is new to me! I am 75 and take care of my husband is 84. I have many health problems myself, and my husband looked after me for many years in between my various operations. He was wonderful. I have ME, I wear a permanent Pacemaker and, despite two replacement hips, still have mobility problems. I am also diabetic. I try to stay positive, but during this last few years it has become very hard and I do often feel very alone.
My husband was diagnosed with Vascular Parkinson’s and Dementia about a year ago. They said there was evidence that he had had a mild stroke about 4 years ago, probably in his sleep, which had affected the basal ganglia, causing the illness. He was referred to a consultant who only saw him twice before referring him back to the GP. The consultant put him on Co-beneldopa, but said it probably wouldn’t work because it often didn’t with Vascular PD. Our GP seems to know little about the illness and we have had no help except from friends. We both have grown up families, but they all live so far away it is difficult for them to physically help us. Neither of us can drive any more and we live out in the sticks, so have to rely on others to ferry us about if we need to go out.
My husband’s main symptoms are difficulty walking, frustration and mood swings. Fortunately he doesn’t suffer with tremor. People who write in your forum talk about a Parkinson’s nurse. How do we get one? Are these wonderful people allocated automatically or do we have to apply? I am very ignorant about what help we can get.
A friend advised me to try your forum so that I had someone to talk to who knew what it was like to live with this cruel illness. I am sorry if my introduction has been a bit of a whinge, but that is where I am just now.
Thanks for listening.

Hi @Bunny22
I’m so sorry to hear about your situation it sounds awful but I’m glad that you have decided to join the forum and I hope that you you will receive some good feedback soon.
Meantime though why not contact the parkinson’s uk helpline (the number is 0808 800 0303) to find out where you can access the help of a parkinson’s nurse in your area.
I hope your parkinson’s journey will be a little easier now you have joined and I’m sure some of our most experienced members will be in touch soon as well as one of the moderators.
Tommy :pill::pill::pill:

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Hi Bunny 22as Tommy said you can ring helpline and ask your gp they should be able to help you with a pd nurse I would also urge you to talk to your family they will probably be happy to help you
Pete c

Hi Tommy
I totally agree with you we cannot change anything so live each day as it comes. Whatever comes I will deal with it at the time.

Sharon

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Hi everybody, I’m Robbie & I’ve been working with Parkinson’s UK for just over a year, mainly focusing on our supporters and the different ways they help raise funds for the charity. I’m also a keen member of Team Parkinson’s and particularly like hearing about research and getting involved with campaigns and petitions. I’m new to the forum but am already loving the sense of community here!

Hi, I’m 53 and had PD for 10 years. I had DBS in November '19. I work full time and am married with two children at university. Notwithstanding my diagnosis I remained positive, physically active, and lived life to the full, supporting PUK as much as I could. I responded very well to my medication (running 2 of my 24 marathons in the last 3 years), but the “offs” were too extreme so I had DBS try to smooth out the on and offs and as an investment for the future. This has been largely successful almost cutting my medication in half, and levelling out my whole day. The spanner in the works is a breathing issue I have developed caused by the larynx closing and restricting airflow and causing a stridor (a sort to wheezing when I breath in). I am told this is rare but that a botox injection in the larynx may resolve it. I would be interested to hear if anyone has had a similar experience. Thanks and looking forward sharing experiences on this forum.

Hi mu names Lou
My hubby was diagnosed with Parkinsons 18 years ago at the age of 39. In 2011 he suffered with impulsive and compulsive disorder due to his medication we quickly went back to his Neurology Nurse and we had to wean him off the medication he was on, things went back to normal, now recently we have seen a new consultant who had now upped the dosage on his Stelevo and it is now causing Impulsive and compulsive disorder and I am in pieces at mo, as I know it’s the meds doing this, we have been in touch with his neuro nurse and have we have to take him off of Medopar and decrease dosage on his Stelevo, today he told me it would be better if he was dead, as its messing with his head, his compulsive disorder is the hyper sexuality. Luckily I have good family and friends but still feel alone

Hi Loulou1,

We’re so sorry to hear about what you and your husband are going through at the moment, it must be such a difficult time. We have lots of information and advice about impulsive and compulsive behaviours on our website, which you may find useful: https://www.parkinsons.org.uk/information-and-support/impulsive-and-compulsive-behaviours-parkinsons

You might also like to try contacting our Helpline, as they’re able to offer professional advice and support on a wide range of issues affecting Parkinson’s patients and their families. You can reach them via email at [email protected], or call free on 0808 800 0303. Lines are open Monday to Friday from 9am to 7pm, and on Saturday from 10am-2pm.

Hope this helps.

Best wishes,

Owen,
Moderation Team