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I can't stop feeling sorry for myself and guilty of the burden for my family

I was diagnosed with Early Onset PD at 45 (5 days after my birthday actually) I was OK at first, even when, 5 months later I was diagnosed with breast cancer (that was a nightmare) but I am 5 years post end of tx this September 2024...
Now it feels like with the breast cancer packed away, I have too again look at and unpack this rotten carton of eggs that is PD.
I can't help but feel sorry for myself, the guilt I feel for my family as the burden I will become just keeps growing.
I feel embarrassed that I will be shuffling along, why my amazing husband has to somehow hold his head high, that he is not embarrassed by the progression. He swears he never would be, as his love for me is so deep and strong, he wants to make sure he is around to look after me, not a nursing home.
But most days I just want to move away and live like a hermit and not bother or be bothered by the rest of the world, even though it would shatter my family.
I don't know how to change and be accepting, as this is just so bloody unfair!!

  1. my heart goes out to you. <3 I know others in our community can relate to the emotions you are experiencing. I truly hope you know you are not alone in this. It sounds like you and your husband have a special bond and he loves you deeply. You mentioned acceptance, so I thought I would share an article on the topic just in case it may interest you - I truly hope you can release the feelings of being a burden because you are NOT one. Your family loves you and wants to be there for you. Hopefully you can find a way to let them. Again, please know we care and are always here for you. Don't hesitate to reach out if we can help locate any PD related info or simply provide a listening ear. Sending so many hugs your way. -Jessica, Team Member

    1. Hi Cindi, I was diagnosed with PD at age 47. I had just retired from the Air Force where I had a very rewarding time in service as Medic. I was actually a Flight Medic for most of my years in the Air Force and that's where I met my wife who was a Flight Nurse. I have always been strong and fit my entire life. You have to be to do the job I did in the military. I was devastated when I first got my diagnosis and my very first thought too was...Oh I don't want to end up being a burden to my wife. I was embarrassed as well and I still am at times with my tremoring. She immediately said "We will get through this together". She also encouraged and "Pushed me a little" for me to get involved in doing the things I can do to help battle the elements of PD.

      I have always been fit and I'm in the gym everyday but I needed to alter my fitness routine to include the functional aspects that helps with my PD. So I went to an evaluation at the Parkinson's Fitness Project here in Seattle and I learned so much about what I need to be doing to help stay ahead of things a PD progresses. I learned that working on my balance, strength, flexibility and doing exercises to help with my posture, I can stay ahead of things. My goal is to be as functional for as long as I can. I am so glad my wife encouraged me and motivated me to focus on staying functional.

      This past year, my wife too has battled breast cancer and is still fighting it. By me staying on top of things physically and mentally, I have been able to be there for her and support her though this terrible battle. She decided to do the ice capping to keep her hair during chemo which required me to haul around a 70 lb cooler full of dried ice back and forth to every treatment. I could not have done this if not for her encouraging me to stay functional. I'm so glad I am able to now be there for her.

      All that said, the stress of this past year has been immense. Unfortunately, my PD has progressed significantly and its very scary but I'm still in a better spot than I would have been. I'm still in the gym everyday, I started going to Rock Steady Boxing class and Stretch Lab. These are the things that help keep me functional and help me to not worry about my loved ones caring for me. They love me and they always will.

      You hang in there!!! You beat cancer and you can navigate the challenge of PD too. You just have to fight !

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