I wonder if anyone can relate to this,
I have had parkinsons for about 6 years. Over the past year or so my family has distanced themselfs from me.
I seem to spend more time on my own. My wife and i used to go everywhere together, these days we do not go out together and i am starting to feel left out.
I have even taken to sleeping down stairs on the settee as my wife just used to turn over when i got in bed.
Certain tasks i can still do but some i need help. I wanted to mow the lawn last week and went inside to ask for help lifting the lawn mower. After waiting for half a hour with out response i managed to do it on my own.
I look at the picture on the forum of the couple in the garden and i wish we were still that close.
I am not looking for sympathy, but i just feel lonely sometimes.
My computer is my out side world. I watch box sets on it films etc as when i go downstairs no one seems bothered anymore.
Please do not feel sorry for me, i am just posting this to see if anyone relates to this topic.
I’m sure your story is relatable to many people on the forum and I’m sure they’ll chime in soon to share their own experiences with you shortly. In the meantime, we have a lot of information on the Parkinson’s UK website that you may fin helpful for you and your wife. You can find this section here: https://www.parkinsons.org.uk/information-and-support/being-relationship
If you’d like to speak to someone about this, you can always contact our confidential helpline - one of our advisers would be happy to help with this issue.Give is a call 0808 800 0303.
I hope you find this information helpful.
This is a long shot, but I get the sense you and your family are grieving over the loss of your former self.
Your Parkinson’s will leave you isolated if you don’t explain how you’re meds work. Try keeping a log of how much energy you do have and when.
Are you and your family aware that one of the most harmful symptoms is the lack of emotion that your face shows nearly all the time. Try videoing YOUR face while you are with your family and watching TV. If you see more emotion while watching TV, there’s what you have to work on.
It’s not just not feeling up to going out in the past when you were still asked/invited that can wear down relationships,
It’s easy for a PWP to fall into the trap of not expressing when they are and are not ready to go out. 45mins after my meds up to 30 mins before my next dose are my leaks. We then try to time outings so that we arrive where we’re going as my meds kick in.
It will take ongoing effort to break the cycle you are in where, I suspect your family think you’re more interested in watching TV than simply talking with and going out with them.
Next time the grass needs cutting ask if someone would like to do it with you, as I bet what they last saw was you saying you’re going to cut the grass but not hearing you asking for help. Then you’re back in front of the TV while waiting for your energy levels to rise.
You’ve probably heard of ‘use it or lose it’ in relation to fitness, you need to start exercising you relations.
Start with showing this post to your family and ask for help in losing your Poker face.