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[originally posted 98-02-02] 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 almonte-ontario-canada / [log in to unmask]