What do you wish your partner understood about what living with Parkinson's is like?

What do you wish your partner understood about what living with Parkinson's is like?

A MyParkinsonsTeam Member said:

My husband has a heart of gold but what I would like him to be aware of is that I know that while I have Parkinson's he has also been affected by this disease too with a uncertain future of caregiving responsibilities when I become dependant in later stages of PD. This weighs heavily on my mind. I Know he holds no qualms about this future burden. However it saddens me still so I wanted to express my gratitude for his unwavering support, love, patience and loyalty... So I wrote a poem for him and other caregivers to acknowledge their unselfish and loving commitment to those of us with P D.
🌷🌷🌷
This poem is dedicated to my husband and all those caregivers who have put their own lives on hold to care for loved ones battling PD and/or other chronic illnesses.
Your strength and presence inspires loved ones to keep on going!
Your kindness motivates them not to lose hope!
Your caring encourages them to keep on fighting their disease!
And they acknowledge that they wouldn't be at this point in their life journey without your on-going support!

🌷 IN APPRECIATION OF THOSE WHO CARE FOR US.🌷
When the diagnosis of Parkinson's impacts on a loved one; it also affects you!
Your lives change dramatically as future implications become many not few.

You evolve into a well-informed supporter, strong advocate, and loyal carer as well
Encouraging a loved one to remain active and independent throughout this private hell!

Your life is put on hold, while you devote attention to their pressing needs.
Monitoring how their symptoms vary daily and where future progression of Parkinson's leads.

You share all their emotions, as you both regularly experience what this disease has cost!
And you understand and give comfort as they grieve for all that they have lost.

At times you wonder if your constant presence and assistance makes any difference at all
Especially when loved ones can seem detached, moody and not the person you recall.

But your caring partnership is the best therapy to motivate and keep their hope alive in the quest
Of discovering a miracle cure in the future to eradicate this devastating and universal pest.

But until then, you are truly valued and appreciated for the love and strong support given tirelessly each day.
Loved ones recognise you as their own treasured earth angel and send thanks and praise in a most sincere and heartfelt way!

posted about 3 years ago
A MyParkinsonsTeam Member said:

I struggle with my family's apparent lack of care and support too and it was all having a very negative effect on me. I was offered Cognitive Behaviour therapy and this was so helpful. I realised that you can't change people to be or do what you want them to be and that I was the only one who could change my situation - I could change how I react to them and I can also change my expectations and cut down on the "should" and "ought" words in my thinking. Also, I don't have to prove that I am a worthwhile wife or mother and I can say no t o something that will be too much for me when they haven't realised how difficult it is for me sometimes to do the things they ask of me.

posted about 3 years ago
A MyParkinsonsTeam Member said:

For those that have been hurt by selfish immature people:
" I used to think the worst thing in life was to end up alone. It's not. The worst thing in life is to end up with people that make you feel all alone". Robin Williams. God bless and comfort you.

posted almost 3 years ago
A MyParkinsonsTeam Member said:

We have a video that suggests how to get out of a freeze position. He says take a step sideways or even backwards. Even bend over and touch the floor if this helps you. It really doesn't matter what others might think if it gets you moving forward again.

posted about 3 years ago
A MyParkinsonsTeam Member said:

Since both my wife and I have PD, we don't have too much trouble understanding each other, but she is advancing much faster than I am, which throws me into the roll of care giver more and more. As PD advances, it not only effects physically, but as I am discovering, mentally as well. when her meds aren't working, her thinking is "different". we've had several conversations about this when she is feeling better, but I also have to remind myself that what she says when she is having an off day, isn't what's important - it's what she says when she is on...also, she is having to put up with a lot more limited movement, as she is falling several times a day, and that frustrates her...and with just the two of us, some times that frustration bleeds over....we've been on this journey for 20 years now, and it's always changing. Going with the flow is easy to say, sometimes hard to remember!

posted about 3 years ago
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