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Janet, I'm so glad to see your posts again. I hope your move went smoothly and that you are well and happy. I also want to thank you for your kind and, as always, wise and thoughtful response. It is such a comforting feeling to know that although I haven't met any of the listmembers I still feel as if you and the others are my friends. Your words have given me a new perspective when thinking about my husband. I know he is afraid. He is convinced that I am going to die and I think he wants to emotionally distance himself from that so he won't be so hurt by it. I've told him that I will likely outlive him, but he is convinced he's right. You were right on target when you say men want to fix things, not emote about them. He is a retired Air Force officer who has lived a no-nonsense, let's get this thing fixed and get on with it kind of a guy. And he can't fix me. I also think there is some disappointment and "why me" feelings on his part. This is a second marriage for both of us. In June we will have been married 8 years. PD was not something he was counting on. We have both saved and prepared well for retirement. It was supposed to be "fun" for both of us. I try to tell him I'm tough and we can still do most of the things we wanted to do. Hopefully in time he will better understand what PD really is. I think I will do some self-adjusting of my meds and see what happens. Well, Cyber-Sis, thank you again and it is wonderful to be part of the family! Much love, Claudia [log in to unmask] wrote: > hi claudia > > you wrote: > >I couldn't sleep so, of course I headed straight to the computer to see > >what new messages I had. Reading the posts is a big part of my day. > > one of the most important aspects of this list > is the sharing of joy and pain here > pd has melded us into a true > albeit virtual > family > > >I read the one from the gentleman who skied with his wife. > >I could feel the love in that letter and I was so happy for them. > > i saw their love as bitter-sweet > since it is tinged with the sadness of their perceived loss > kahlil gibran said something about joy and pain > being opposite sides of the same coin > experiencing both makes us richer > > >But, I have to admit that I was a little jealous, too. > >This is a hard e-mail to write because it's so personal and so painful. > >My "caregiver" is my spouse. We have no relatives where we > >live (southern California) The closest ones are Kansas City or Florida > >My husband is a good man but he seems to be totally lacking in > >sensitivity. He provides well for me and provides all the practical > >necessities. But his way of dealing with my problem is to stay at the > >office very late at night, so it is bedtime when he gets home, often I'm > >already in bed. > > the way your husband is 'dealing' with the problem > seems to me to be avoidance and denial > which are generally based in fear; > i know it well > > stereotypically > the male of our species > likes to go for the active 'quick-fix' solution to problems > an 'insoluble' problem requires a lot of work and attention > > >I asked him this weekend why he doesn't ever talk to me > >about PD. He said "I know enough about PD--it's a > >progressive disease, your life's going downhill and you'll > >die..just accept it and get on with life". > > he says he knows 'enough' about pd > in other words > all he wants to know > this reverberates with more of the same fear and avoidance > > you have both used terms like > 'my problem' 'your life's going downhill' 'you'll die' > certainly the disease is yours, claudia > but it can be shared by both marriage partners > for better or worse > in sickness and in health > this is one of the big tests > > in 'facing the facts' of your impending doom > it seems to me that your husband > is expressing fear of his own > inevitable death > > that is something we all have to work through > we were all born in order to die > "life is a terminal disease" > our time here is limited > not infinite > i think the key is to figure out > what the heck we are supposed to be doing while we're here > > i truly feel that we are in this earthly university > to learn as much as we can > in order to love as much as we can > > >I tried to tell him how much it meant to me > >to be able to talk to the one I love about it > >but it fell on deaf ears. > > his own fears and denial have blocked his ears > it's important that you realize that > his response is not a rejection of you > but a reflection of his own pain > > >I try really hard to stay positive and most of the time I am, > >but today it feels like everything bad is falling on my shoulders. > >The dr. has told me it's time to retire. > > a scarey thought, if you let it be so > but he could be wrong; he's human, too > > >I'm having so much trouble with my balance > >that I now have to use a cane. Up till now no one could look > >at me and see that anything was wrong. Now my "secret" is out. > >I'm not really vain, but it just makes PD > >so much more "real" to me. > > ...like saying previously unspoken thoughts out loud > they take on an added dimension and impact > > >This seems to be going so fast--I was only diagnosed 5 mo. ago! > >I had a job that I loved and was good at--and now > >I don't think I could go thru a day there.. I was the > >Postmaster of my city and had 60 employees. I took great > >pride in my job and worked darn hard to get where I was. > > my impression is > that your symptoms are progressing awfully quickly too > > you say you are on lots of meds > i may have suggested this before > but i think it might be important/interesting/revealing > to pare down your meds to the bare bone > and take a good hard look at your symptoms > and how they are affected by your meds > you could be suffering from some unknown interactions > > have you told us your med schedule in detail? > have you seen a movement disorder specialist? > or another neuro who specializes in parkies? > > i am convinced that your situation could be greatly improved > we have to learn to be our own advocates in dealing with pd > we cannot rely on anyone else > > i challenge you to apply the same grit and determination > you have shown in your previous job > to your 'new job' - pd > you have access to the most knowledgeable people > and the most comprehensive data base in the world here > > >I hope this doesn't sound like total whining, > >but so many times I have heard members say "we're there for you". > > we are, and i am, claudia > > i don't think you are whining > you are opening up your deepest feelings to us > and i, for one, feel honoured to have been on the receiving end > > >I'm a proud person who never > >asks for help. But I'm asking now. > > that took a lot of courage > > >Surely I can't be the only one of the 1600 of you > >who don't have supportive caregivers, > >How do you manage the emotional aspect of it? > >Any of you with loving caregivers have any ideas. > > i have lived alone with pd for 9 years > so i have no 'caregiver' as such > but i have been learning > to be one > to me > > >I have joined a support group and they are wonderful, > >but it is about 50 mi away so its not practical to try > >to spend time with them in between meetings. > >I have always been so busy with my job that I never really > >had time to develop friendships here > >and we have only lived in California for 7 years. > > i found that pd forced me to look at my priorities pretty hard > and now i am in the process of making changes > to reflect those priorities > > re-evaluating can be scarey > or it can be exciting > it is our choice > > >I'm sorry to sound like a whiner, > >but it all just feels like it is crashing down > >on my head right now and > >I'm feeling a little sorry for myself. > >Something I don't do often.. > > your feelings have caused > you to admit some painful things > and reach out to your cyber family > i cannot fault those emotions one whit > > >Maybe this is just part of the depression > >that comes with PD > > anger / denial / bargaining / acceptance > are the stages we all go through > in dealing with any > perceived loss > > >and I'm taking so much medicine > >that that could be contributing to it too > > i'm not a medico of any kind > but i'm pretty sure that you are right in this > > >--and if none of those work I guess > >I could always "Blame it on the Bosanova". > > or howzabout on san andreas? > > with much love from your syber sys > > janet > > janet paterson / 50-9 / sinemet-selegiline-prozac / [log in to unmask]