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Topic I get so mad at fate Go to previous topic Go to next topic Go to higher level

By BCSuzie On 2012.09.25 16:29 [Edit]
Hi Everyone, I'm new here.
My name is Suzie. My partner, Lance, found out he had progressive PA three years ago at age 46. We dated about 17 years ago, and reconnected four years ago. Three months ago we bought our first home together.
Sometimes I get so mad at fate. We are finally in a place where we can be with each other full time, and this happens. No one's fault I know...
I just want to scream at 'whatever' for taking him away from me bit by bit and I can see it, it's crazy! We haven't had a chance to travel the world or build a vault of memories yet.
His trumors are getting worse, his vision is worse and worse, he speaks with a whisper now which is hard in his job. The lack of balance won't let him scuba dive or climb ladders well, his foot is dragging and he's so sad. There's nothing that I can do. I promise him that I'm here, I'm not going anywhere. Wild horses wouldn't keep me away. We are planning trips, and trying to do the most we can right now.
I don't want to cry about it anymore. We talk about it and I have to hold it all in because I know I have to be strong for him.
I know I'm being completely selfish. I'm not the one with PA. I'm sorry, I really am. I am grateful for my health and the ability I have to help the person I love, I really am.
I'm just so sad too.
And venting. I'm venting.
I'm sorry.

By mylove On 2012.09.25 17:37
Suzie, our stories are so similar.... I want to share with you now but I don't have the time to post more. My love is Shakydog, who also posts here on this board. He's young onset as well, and I have many of the same feelings as you. Hang in there. This is a good place, a strong place, and great for support as well as practical info. (hugs)

By Laurel On 2012.10.12 23:02
Hi, Suzie. I'm new here too. My husband, Steven, was diagnosed with Parkinson's when he was 40; he's now 57. He had DBS at Stanford in 2006 and his physical symptoms for the most part are still in remission (his main symptom now is that he freezes up). But his brain is another story -- his cognitive functioning is slipping and it's breaking my heart. He's on disability. He is a writer, but often can't write. He's fully aware of what's happening of course. He gets frustrated or confused and tends to withdraw, so one of my caregiving issues is how lonely I feel. And I don't want to tell him about it because it will make him feel worse.

Oh -- Steven and dated very briefly 30 years ago and got back together 7 years ago. But I feel like you do, Suzy -- there are so many things we want to do together, and Parkinson's is going to get in the way.

I'm looking forward to connecting with others in similar circumstances.
~ Laurel

By parisvug On 2015.09.21 10:52
Hi Suzy. I actually joined this forum after reading your post. First, my user name should be parisbug not "vug". I had to laugh at my typo. Anyway, my husband And I were married 10 years ago. We didn't find each other until later in life, our thirties, but we encountered each other in the past but never connected for some reason. When I was about 32, I had my baby girl, then two years later, my knight appeared. My husband and I got married two years later, and loves my daughter as his own. My husband was diagnosed with early onset about 5 years ago, and things are getting worse by the minute, it seems. I feel totally alone, and I too am so angry at what has happened. We were suppose to grow old together, travel, watch our daughter grow and thrive! I feel like that has been snatched away. We had to totally change our life around. He had to quit his dream of being a geologist, and I went back to school to teach. I am currently working on my masters degree in special education, working full time in a school, taking another class to update my license, and dealing with having my daughter attend a high school in another location. I am overwhelmed, and feel like I have nothing to give back to my husband, and I hate that feeling. There is no support here because we live in a remote area of Alaska. I'm feeling very alone, angry, guilty, and frustrated. I just don't know what to do.


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