I realize it's not appropriate to post from a private support group onto a public blog, so I'll just post my own response.
A lady posted on an online support group about entering into a relationship with a man several years her senior who had been recently diagnosed with PD. There were some supportive replies and a lot of not-so-supportive replies. Here is mine, copied and pasted:
I know all too well the apprehension and trepidation of entering into a relationship with a man who has PD. My dh is 23 years my senior. We each have a child from previous marriages, and have decide to start a family of our own. We have a two year old and are trying for another. The nay'sayers and flame-throwers are limitless. You have to develop a thick skin to be in our shoes.
I have to agree with pretty much everything ---- said. I couldn't have said it better myself. The best advice I can give at this point is to base your decision on what you DO know, not on what you DON'T know.What you DON'T know is regarding what ---- addressed - children.
1. Yes, your innocent children may be afflicted with PD. It is no secret that PD can be and in many cases IS, inherited. But so can a slew of other illnesses. No one wants to risk passing on such a horrible disease to their children. And it is a huge risk, no doubt. But you don't know that you will pass it on. If we based our decision to have children on what we could potentially pass on to them, no one would have kids. Alcoholism, mental illness, cancer, diabetes, alzheimers, down's syndrome - the list goes on and on. You could try to adopt, yes, but that could prove to be very challenging. There are not many agencies out there willing to give a child to a family with PD. The decision to have children with this man will be a hard one to make, but base it on what you know will happen, not what 'could' happen.
2. You will essentially have to be a single mom at some point. Because you don't know how the disease will progress, you don't know when that time will come. Hopefully, not until the children are grown, or at least up in size. But you do need to be prepared for the possibility that you will be the sole provider, financially, emotionally, physically. Having said that, again I have to say that you don't know what will happen. Your loved one may be perfectly capable of helping you with the kids. It's not an all or nothing thing either. If you are able to think outside the box and be a little creative, you should be able to work around many of the PD issues. Example - I make sure to purchase clothing and shoes my dh can put on my daughter. Elastic waists, loose tops, lots of dresses, velcro shoes. And we co-sleep, which gives him a ton of close, physical bonding time with her each day that he would otherwise not be able to do. Also, because PD affects his voice and facial expressions, singing and reading to our daughter with great expression and exaggerated emphasis is a good way to incorporate voice exercises into a normal play routine. So you see, there are many creative ways to work around these issues.
3. Yes, children need both parents. No one is going to argue that. But a disabled parent is not an absent parent. Yes, all children would prefer to have both parents healthy, and yes there are a million ways to teach compassion, empathy, kindness and understanding without imposing this situation on them. BUT, each child's reaction to PD has much more to do with their own personality than anything else. How else to you account for the parents who raise their kids to be persons of strong character, yet the child ends up in jail? Or the parents who are total losers and abuse the kids, but one grows up to be president? You can only raise your child in the best way you know how - the rest is up to them. That is true whether you have PD in the family or not. Yes, this does present a special challenge to children. I see it everyday in my own home. I am not blind to the fact that PD affects children. But the fact is, kids grow up to be angry, resentful and pissed off for a lot of other reasons besides having a father with PD.
As I said, base your decision on what you DO know. You DO know that PD is a progessive, degenerative, neurological disorder. You do know the symptoms and how they can affect your loved one. Get as much information as possible. Join online support communities, as you have done here. Network, network, network - join local support groups, make friends with PD patients and their carepartners. Surround yourself with a group of individuals who truly understands your situation. These are the people you will need to be able to fall back on to help you through, whether it be emotional support for you, helping you take care of your spouse and/or the kids, or helping you get some housework done. You will find that there are many people out there willing to help if you open up and let them in.
If you venture into this relationship, keep in mind that most people are not going to be supportive, at least in the beginning. You may feel very much alone at times. But if you truly love him, then go for it. We all want someone to love us, even those with PD. And loving a man with PD is no cakewalk for sure. But you need to be able to find the good in it somehow. Take what is good, hold it close and run with it. Don't let PD dictate how you live your life.
Prepare for the worst but hope for the best. If you need to make financial arrangements, then do so. You may need to move to a house more handicapped accessible, or downsize to a one-story. You may need to give up the extra vehicle to pay for extra insurance. Like most of us, I am sure you are not rich, so you will need to prepare for the future. But that doesn't mean you have to live your life as if you can't make a single move because of PD. PD can rob you of so much, so live your life to the fullest while you still can.
My dh worries all the time about not being able to provide me with the kind of life that he feels I deserve. I think that is inevitable of anyone with PD - most feel at some point as if they are a burden. You will need to give him a ton of encouragement and support. What you say to him matters much more than you may realize. This is where you will need to get creative and think outside the box. If he is worried about not contributing equally, especially if you have kids, then this is the time to show him how he can contribute in ways that he may be unaccustomed to, things that may be unconventional. Go out of your way to prove to him that what he is able to do is very important to you and very helpful.
Most of all, tell him every single day how much you love him, and why.
Good luck in all you do! My prayers are with you and yours!
