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Topic My Boyfriend's Recent Diagnosis Go to previous topic Go to next topic Go to higher level

By xoxo123 On 2013.07.01 00:12

By LOHENGR1N On 2013.07.01 19:27
xoxo123, Hi and welcome to the forum. Not many people visit this board to often (most use the main one). Glad You found Us. You have a real dilemma which only you can answer about staying or not. Some do, some don't that's up to them. Parkinson's Disease isn't a walk in the park it can get pretty hairy at times.

Parkinson's Disease is a progressive disease, there is no cure. It will get worse (progression is hard to pinpoint as some grow worse faster and others slowly). Many of our medications cause ugly side-effects, compulsions (gambling and porn, mood changes and anger issues). It can be a roller coaster of a ride as the med's get adjusted to the right level and then when it seems they're working they need adjustment again. I'm not trying to scare you I'm just letting you know what you maybe facing. As I said there's no wright or wrong to stay or go it's really up to you. If you repost your post in the main caregiver board I'm sure many will offer their stories and opinions to help you. It is a very hard road to travel and some with many years of marriage end up apart before the journey is done. But some have gotten married along the journey with their boyfriend or girlfriend. Each individual makes their own choices. The best advice I can give you right now is to sit down alone and think about where you visualized your relationship to be in 6 months or a year from now before the P.D. diagnosis? If you were having second thoughts or even saying something like I'' give him another 3 or 6 month's to straighten up and treat me better I'd really really think hard about going on just because of the P.D. because it gets harder. Take care, best of luck and hang in there.

We're all in the same game; Just different levels.
Dealing with the same Hell; Just different devils

By xoxo123 On 2013.07.01 23:31
Thank you LOHENGR1N for the feedback. I have been researching this obsessively for the past 3 weeks and I am aware of how ugly this disease can get. My great aunt had PD, but she was old when diagnosed, and I watched her get worse, but I wasn't around her often or for long periods of time, so I just accepted it as it came. She had a nurse most of the time taking care of her. It's wasnt really "my responsibility". Now I feel directly impacted by this disease. My boyfriend is a strong man, he's a bodybuilder, has a very muscular, hard body. It's so difficult to me to see him so vulnerable. He says things like "there is no point in living, I am dead", and I don't respond...I just listen. I wont tell him it's gonna be alright, and he will be ok, cause I know thats not the case. I try to talk about potential advances in medication and treatments that may slow his progression, but I don't want to give him false hope. If I were the one diagnosed with PD is would probably be as pessimistic as he is. I don't see a future with him, we are just two different people, but I can't abandon him now. I have a lot of knowledge with regards to diseases as I work in the medical profession and have studied a lot of diseases states. I am completely blind sighted about what my life has become in the past 3 weeks and the pain I feel in my heart for him. I wish I could make his PD all go away. Sometimes I think this is just a bad dream and I will wake up and it be gone. I can only imagine what he is going through. I feel selfish for feeling sorry for my self because I am hurting so badly for him. I don't want to post this in the main forum. I just wanted to vent a little and your feed back was very helpful. I am curious about why the side effects of the meds cause compulsions such as sex addiction. Can you explain that? He just started taking a medication, not sure what its called, but he was upset because it is helping with the tremor in his hand, which further validates that he does indeed have PD. I know he is not alone, there are many out there with PD, but I know he feels alone...I feel alone.

By LOHENGR1N On 2013.07.02 23:56
I can't explain why the medication (dopamine agonists I believe) like Mirapex cause these compulsions. I don't believe the experts know why, they suspect they over excite or simulate areas of the brain involved with compulsive behavior. The way He's behaving in "normal" grieving process of being diagnosed with a disease like Parkinson's Disease. I may help to reread anything you have about the grieving process it may help not only him but you too. If you're sticking around toss out most of what you've studied about disease states, nothing teaches like front and center being there. It's important that He keep doing all he can and was doing before diagnosis. Remember He was active before diagnosis and just the Doctor saying or confirming Parkinson's Disease doesn't magically make one instantly disabled or a cripple. He has some productive time ahead of him. I Myself have P.D. I was diagnosed in 1986 shortly before my 34th birthday and now I turn 62 in a few months. So there are a few of us out here disproving the medical estimates. Tell him not to despair He's still got life to live. When I pressed my Neurologist back then as to how long He said probably 15 years, 20 if I was lucky. I said Doc I'm 33 I'd like 25 to 30 to which he responded we'll see and I'm still here. So don't give in or give up.

If you want you can go to the American Parkinson's Disease Association web site there is a like to the young onset center. Ask them to send the Young Parkinson's Disease Handbook to you it will explain a lot and I found it to be a great help.

from the movie Tombstone;
Doc Holliday: What did you ever want?
Wyatt Earp: Just to live a normal life.
Doc Holliday: There's no normal life, Wyatt, it's just life. Get on with it.

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