Wives of young onset

Eternal,

SOOOO good to hear from you! Glad it sounds like you are on an upward swing. I encourage you (and others !!!!) to post here so others can learn and share. However, my email should be included in my profile. Please keep us posted.

lizzy4451 

I am looking for a local support group for -spouses- of people with early onset Parkinsons in the Cincinnati, Ohio area. My husband went to his primary care physician year after year in his late 30's wondering what was going on. He had many nagging symptoms in different body systems. He saw a urologist. He saw a gastroenterologist. No one had answers, and the medications for the problems were not working. Finally, I told him he could not write off the tremors in his left hand as a symptom of making contact with a baseball in his men's league any longer. He came home from the neurology appointment and said, "It is not going to be the diagnosis you were expecting, but I am not dying. It's Parkinson's."
He was just 41-yrs-old! We had a little girl in preschool and a toddler at the time. That was six years ago, and this experience been like watching someone die a little bit every day. I know that sounds harsh to those who might read this post who have PD, so I will give an example. It is crushing for me to see him almost get to the end of a day without a downtime only to be hit at 9 PM with a low that leaves him lying on the carpet trying to roll out his muscles before shuffling to bed where he will lie there unable to sleep. He really does take a pill (one of four different maintenance medications) every hour. Even when I am frustrated with his bradykinesia, weak speech, blank expression, irritability, and newly developing cognitive challenges, I tell myself, "Yes. You are married to him. Imagine what it is like to *be* him!"
I will give you an example of one way Parkinson's has stolen his joy. He discovered skiing after college when he started making a living. He loved going out west to ski black diamonds and moguls with his buddies. After a hiatus from skiing while our children were tiny, we decided to splurge. All four of us went to Colorado. The first day he paid for the rental of some equipment and a lift pass. He took the gondola up to meet my friend's husband. Two hours and no word from DH. I was a bit panicked. Luckily, the kids were in class all day, and I opted to stay at the base of the mountain. I finally received a text. "I am stuck. Coming down." After two hours of trying and falling and getting very wet, he was on his way to me strapped in the medical taboggan. He did not want to talk. A dark cloud hung over him that day, although the sun reflected brightly off the snow.
I just need some support. Sometimes, I admit, I get very angry. This is not what I thought marriage would be like at this age. I will spare you all the details because many of you are familiar with them.
I tried to talk to his mother about the challenges we are facing when she was visiting over the holidays. All I got was a blank stare, possibly because she is dealing with her own issues.
I want to be a better partner, and I think a step in that direction would be to learn coping skills around his degenerative condition. My kids need their Papa in whatever capacity he is able to be part of their lives for as long as possible. If you know of any groups that are local to us, I would gladly participate. Thank you.

DidNotSee,
I live about 2 hours from Cincy and have a support group. I like to learn about things that other people are doing and resources available. So I called the Cincy organization (see previous email with contact info). They do have support groups and, in fact, do have a caregiver support group that meets monthly (last Monday of the month I think). They were very helpful. They provided many more details - location, support group leader's name and phone. Since those things can quickly change, I would encourage you to call the office number to make sure you have the most current information.