Hello there


#1

Hi, I’m from the US, but fell in love with this forum. My personality feels a little stiff, drawn to your your warmth.

It’s been 16 years since tremor onset. Fighting when I can because it makes such a huge difference. Would like to be more consistent. I’ve had so many challenges leading up to diagnosis of PD that PD in many ways seems less hard…mainly I suppose because it’s a diagnosis. It gives permission to be imperfect. I don’t have to hide in shame anymore.

I’ve had symptoms most of my life. Certainly since my 20s. I’m young onset, born in 1961. I wonder if anyone else feels the same way.

Lucky to get to be here.

In friendship,
Chrystal


#2

Hi Chrystal

Hope you are enjoying your association with the Forum. I am quite different - diagnosed earlier this year, now 83, but have found the Forum to be a lifeline - lots of people with similar, and different problems, but all willing to help.

Glad you found us.
Audrey


#3

Thank you Audrey! Glad to meet you.

Warmly,
Chrystal


#4

Hi Chrystal.
Something you said there resonated with me.
Thinking back to some of the past problems that I have had. PD may have had a grip on me for longer than I had thought.
Welcome to the forum.
Hubby


#5

Hi Hubby! It’s interesting how researchers have identified so many early-phase symptoms that soon Pd may become detectable/diagnosable long before visible symptoms begin! Wouldn’t that be lovely? The next generation will be in excellent condition for the cure!

Thanks for your reply. It was lovely finding your friendly ping.

Warmly,
Chrystal


#6

Hello Chrystal,hope this finds you well. Looking back I too realise the signs were there way before I was diagnosed. I am 69, been diagnosed two years. Fingers crossed research will help us all before too long. Stay happy
Sue x


#7

Hi To you all.
I am new to this although I have constantly been on the Forum for information so I will briefly tell you my story.
I met my partner 6 years ago after 1 year he was diagnosed with PD which was an utter shock. He will be 74 this year and will never ever accept what he has. He has been very angry, wanted to self harm etc so consequently has and is still under a psychiatrist. However we seemed to get over the anger and both of us have been going to Pilates 3/4 times a week which he found a great help with the PD . This year April he had a complete knee replacement which seems to have not helped with his PD in fact we both feel it has made it progress. Especially with the constant pain (he was frightened to take strong pain killers because of the constipation it caused ) and endless sleepless nights …However the knee looks good walking slightly better but cannot get the sleep he needs. Unfortunately when he closes his eyes to try and sleep he sees demons and horrible faces only in his head not around the room if that makes sense .He also said the pressure and pain on the top of his head was awful ,almost like his brain was trying to get out of his skull.
This morning he said he felt as if his blood was boiling all around his body is this normal. ?Tomorrow I will be phoning the Parkinsons nurse or his neurologist but trying to get an appointment is hopeless. I hope someone can help I feel so desperate to try and get answers for him, Is it part of the progression? Thank you for reading and Bless all out there that have PD.


#8

Hi Karlitza3,
Sorry to hear about the problems your partner is having. We’re sure some of our members will share their experiences and advice with you.
If not, someone from the Parkinson’s UK moderation team will respond to you as soon as possible. You can also call our helpline service on 0808 800 0303 to speak to our trained advisers. The lines are open from Monday-Friday: 9am-7pm and Saturday: 10am-2pm.

Best wishes,
Edwina
Moderation Team


#9

Hi
Thank you for your message I am looking forward to receiving feedback from other members.
I have dealt with the helpline before and found them extremely helpful.

Regards
Karlitza


#10

Hi @karlitza3,

I’m really sorry to hear about your partner. I see that one of our moderators has already suggested that you contact our helpline which is great, especially as you’ve already had a good experience with them. It sounds to me like your partner may be experiencing hallucinations which could be due to eye problems. We have a lot of information on this on our website here, https://www.parkinsons.org.uk/information-and-support/eye-problems.

If he continues experiencing visual disturbances, your specialist may suggest reducing or changing your Parkinson’s medication. If the hallucinations keep happening there are other treatments that can help - details of these options can be viewed via the link above.

I really hope you find this information useful and please let me know if there’s any other way that I can help.

Best wishes,
Reah


#11

Hi Everyone,

I came across this forum when looking for some kind of support. My husband was diagnosed with early onset Parkinson’s a few months ago and we are still trying to get to terms with it. I find it so hard to manage to give him the time and attention I want with the demands of our young children. I love them all so much. I try really hard to be cheerful and look after everyone, but today I just sat down and cried as I felt so overwhelmed.

Does anyone have any practical tips on how to cope? Would love a virtual hug as well.


#12

Hi @karlitza3
I may not be able to give advice on the hallucinations but I can let you know how my knee replacement affected me,
I’m 72 with PD, Arthritis in both knees and Diabetic amongst other ailments
His knee is probably still swollen to a certain extent however it’s vital he keeps up with the exercises.
As for the painkillers, providing they are strong enough to give him the relief, he should try them.
if they bring on constipation that’s relatively easy to treat. He needs to remember Just what they have had to do to replace his knee in truth it took almost 12month before I could say I’m back to normal. Give it a bit more time.
I am now on the waiting list to have my other one replaced, then hopefully that will help me with the balance, shuffling and falling issues.
If you are unable to continue with or have given up on Pilates your GP could refer you to Neuro Physiotherapist. Having said all that, you must find it difficult trying to convince him to take action.
Do you think he would be able to make contact himself? Many members here have complex issues and find the forum useful.
Best wishes
Mal.


#13

Sending you a hug. It’s good to cry sometimes. It’s not easy. Keep talking I find it helps & this website is a lifeline. My hubby has PD not me.


#14

Hi Coffee,

A warm welcome to the forum.

It’s nice to see that you’ve already received some lovely responses from our members. In addition to the forum, there is a lot of support out there to help and support you and your husband, we have a network of local advisers who are very knowledgeable and can advise you on any other support you need. If your husband’s neurologist hasn’t put him in touch with a local adviser, you can find them through our confidential helpline and our website here, https://www.parkinsons.org.uk/information-and-support/our-support-services.

Feel free to give our helpline a call on 0808 800 0303, Monday-Friday: 9am-7pm.

Hope this information helps and you continue to meet some great people on the forum. :slightly_smiling_face:

Best wishes,
Reah - Forum Community Managers