My partner has been diagnosed with pd 2 years ago,he has right sided tremour in his hand,it seems he completly puts it out of his mind,he doent talk about it at all,he was given a pd nurse but has never seen him,if i bring it up he dismisses it saying hes fine and doesnt need to see him,recently i have noticed he is getting a tremour in his left hand,i dint know what to do to encourage him any more,he hasnt even seen his consultant since being diagnosed
Hi Kazwill,
Welcome to the Parkinson’s UK forum.
We’re sorry to hear about your partner’s situation, it must be very difficult for both of you.
Some of our members will surely be along soon to share their experiences.
Meanwhile, if either of you would like to talk to someone please feel free to call our Helpline advisers on 0808 800 0303 or email us at [email protected]. They’d be more than happy to offer you support and advice about this.
Best wishes,
Edwina
Moderation Team
Hi Kazwill and welcome, you have come to the right place for advice and friendship. I know people do find it difficult to accept that they’ve got the disease but it does help if they are able to talk about it whether it be on here or with a PD Nurse who in my experience are very helpful and knowledgeable. Recently my step-daughter visited and mentioned something she had noticed about me to her Mum whilst I was out of the room. I have since told her that there is nothing to fear, that if she wants to talk openly about one of my defects in my presence i’m not going to be offended as we’re probably already aware. The thing to remember that because your partner has been diagnosed with it doesn’t meant that it is instantly life changing, you carry on as you are and do the best you can everyday. What your partner has got to take on board is that he isn’t the only one with the disease, there are people on here who have had it longer than me and I was diagnosed in 2011.
The fact is that one in 500 people have got it, okay we all have different aspects of the condition but we are all able to talk about it. With mine I have the side effects of memory loss/forgetfulness, balance issues, speech impediment and I walk like i’m drunk !!
Also, I have had a Deep Brain Stimulator fitted which I have had for almost 6 years, the battery lasts five years and so had mine changed in March of last year. It controls the Parkinsons side of my tremors(without it I would wobble like a jelly !!) but I also have a Dystonic Tremor which is different again and I do have this to contend with as it affects me when I am eating or when I am trying to do something whereby concentration is imperative.I tell anyone who will listen that the way I have coped with it is to be positive in thought and not to be afraid of poking fun at yourself, making a joke out of it. Some of his friends may shun him but as I tell others, these people aren’t worth the paper they are written on, his true friends will stand by him.
This week in The Sun there was an article about research that had been done with the upshot being that GPs will be able to prescribe SEX, now how that is going to work I don’t know. Can you imagine the prescription, once three times a day, I don’t think so !! It certainly brought a smile to my face. This is something that I have made people laugh at. I hope you can persuade your partner to come out of his shell and talk instead of bottling it up. I wish you well in this venture, keep us updated on what happens in the future, we are all here for you.
Les
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Hi Kazwill,
I can understand your partners attitude. I waited 9 months from when I first noticed my tremor to raising it with my GP.
My GP diagnosed Essential Tremor but referred me to a Neurologist for a second opinion. It was a further 6 months before I got to see the neurologist and received the PD verdict.
It was only then I started to read up about PD and started to accept the situation.
By the time I started on medication things like typing were very frustrating with more time spent correcting than composing.
Now that I am on Sinemet, I can type again!
It really helps once you have accepted the condition and start looking for ways to make the future easier.
All the best,
Jim
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Hi Kazwill
I was diagnosed with PD 18 months ago. It took me some time to acknowledge I had problems and once diagnosed I found it hard to talk about it. I didn’t want to get involved with anything to do with Parkinson’s because in doing so it made it very real for me and then I would have to face up to it.
I found it took some time to get to a place where I could begin to find out more and I expect different people will reach that point at different times. You sound as if you are a very caring person and being there for your partner as he does begin to acknowledge it is the best thing you could do for him and perhaps be ready when he is ready to find out more about the condition. As I’ve found out more I’ve developed a greater understanding of it. It’s important to know it affects everyone differently. There are positives and remaining worries - for instance how is this going to affect me in the future. I try to take each day as it comes. To date, with the help of my medication, I’ve been able to regain much of my ‘lost’ skills. I still do much of what I did with a few exceptions and I try to enjoy them. I can’t play my piano well, but could I before, probably not as my friends fondly called me ‘Les Dawson’ whenever I played.
Best wishes for the future. I hope it goes as well as it can do for your partner and you x