Im recently diagnosed and very concerned my wife & family dont know how to deal with it apart from ignore it.
Any advice or contacts i can give them to help them come to terms with my PD
Thanks
Steve
Hi Steve and welcome to the forum.
You don’t say what your symptoms are but I find that the best approach is to explain how PD is affecting you to family and what support, if any, you would like from them. I also found it really helpful when I persuaded my husband to come to my PD nurse appointment as it gave him a much better insight as I was explaining symptoms to her rather than just appearing to moan about things to him.
Having said that, my family are internet junkies and were busy researching PD avidly the minute I told them about the diagnosis - at a time when I was still trying to ignore it and pretend that life would continue as normal.
Clare
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Hi SteCummings
The only thing I can suggest is that you need to remember that you are still the same person - just a day or two older. Explain how it affects you and what you are doing about it. Nohing else has changed except that you now have a label on which to hang some of your problems. Introduce them to the Forum - they will find others with similar feelings. They can also help you by doing some online research - e.g.what support is available in your area etc.
Good luck
Knine
Audrey
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Hi Clare
My current symptoms are not life changing as yet, but i think my wife is scared of the unknown. Taking her to see my consultant changed everything, she now knows what ive been saying for some time is true. Deep diwn she is very supportive, which she has shown many times during our marriage, but with this she has no idea how to help.
Since she started researching what is on the internet, she is more confised than ever as so many contradicting views or it feels tgat way to her.
Anyway i will continue to be open about PD, and hope she follows suit.
But it does help knowing how other families have coped, as i share this with my family.
Thank you so much for replying.
Steve
Hi Audrey
That bit of advice is the best i have recieved, sometimes i forget that myself.
I will keep telling myself and everyone around me that every day.
Thank you
Steve
My husband has Parkinsons and when some of the symptons first kicked in I kept trying to help or take over and do what he was trying to do and he got annoyed with me so now I wait until he asks for assistance with things but I am trying to make things easier in little ways like I have bought him elasticated waist shorts and trousers as he was finding fastening the ones with buttons on the waist difficult. I must admit I find it frustrating when it takes him 5 minutes to do something I could have done much quicker.
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I have a feeling i will be like your husband, i will hate not be able to do everything for everyone as ive done all my life. My wife is the most patient person, so she will just let me do it at my speed when i slow up.
Thanks for the reply
This is the down side of Parkinsons, the person does take longer to do things and we can infuriate you but you must learn to be patient, allow extra time especially when going somewhere so that he is ready on time. Whilst on the subject of easy fastenings look at velcro fastening shoes, these make life easier, I know from personal experience. I muddle through doing a zip up and fastening buttons, eventually !!
Les
Ste, you are early days of diagnosis so you may be able to do things normally at the moment but as you rightly point out there will come a time when you won’t. Hopefully this is a long way off yet so enjoy every day and be thankful you’re alive.
Les
Les
Thanks for your reply, and your advice on patience is something I have to listen too as I’m the type of person who likes things done quickly. So when I slow down it will probably infuriate me more than my family.
One thing I will be doing is enjoying every minute whilst I still have my quality of life.
You probably won’t be aware of slowing down your way of life but people around you will like your wife. The changes won’t be instant but will be very gradual. Adopt a positive outlook on this thing. As you have found on here there are other people in your position and know what you’re going through and will give you advice as and when you need it. Your family can be there for you also, giving you support, if they see you struggling with something and offer help don’t snap at them just appreciate that they care. It is the same when you are out and about, always accept the hand of kindness it will make life so much better for you. You may find it hard to do it at first but you will get use to it.
Les
I am the carer for my OH and the hardest thing to do is stand by and wait to be asked for help, but I think I have learned. I am still worried when he tries to do something he is finding difficult but he does ask if he needs to do so. He also helps me by doing things like washing up, even though it takes a long time. After 2 years we both still get upset when he has problems but on the whole we live with it and enjoy the life we can still have together. And Velcro is marvellous.!
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Being the sufferer I help my wife by hoovering everyday for her and when she has big items that need folding I also assist otherwise i’m pretty useless !! As you say, thank goodness for velcro, a wonderful invention for anyone with Parkinsons.
Les