For those who care for someone with Parkinson's disease
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Topic I'm ready for support. Go to previous topic Go to next topic Go to higher level

By ChiefsWife On 2014.06.05 17:47
Hello, I feel the nerves like I always do when the reality of my husband's illness hits me square in the face. Logging in here makes it real once again. I'm 58 and my husband, 62. He's had PD since 2000 or before and was diagnosed in '02. He has had both DBS surgeries and they've been successful. First was in '03 and second in '09. The tremors are only an issue if he turns the device off. (Our running joke; Are you turned on?) He had to retire earlier than he had planned but maybe only by 3 years or so. We're comfortably retired. I finally felt the need to look for support because of my husband's recent decline. He's still ambulatory but with difficulty. He's in great pain almost all of the time he isn't sitting. He still putters around with honey do's but only 20 minutes at a time and then he needs to rest. He rarely drives anymore and shouldn't at all. My mother died in '11 of Corticobasal Degeneration; she was gone within 4 years. My father died in '03 of what everyone thought was Alzheimer's but turned out to be Arterial Sclerosis of the Brain. I say this so you'll know that caretaking is not unfamiliar to me. I pretty much know what both my husband and I are in for sorry to say. After looking around I liked the "feel" of this board. I run a board myself, private, that started as a sewing board (splitting from a much larger board) and morphed into a social board (I mean really, can women stick to talking about only one subject??!!) I've made wonderful friends there that I love. We all support each other through whatever life throws at us. We've recently had a family member commit suicide and another's daughter had a stillborn child. There are only 8 of us but we've known each other over 12 years now. In spite of these friends I still feel the need for an outlet like this. Hope I fit in and that maybe I can enlighten at times as well. Thanks for having me.

By moonswife On 2014.06.05 22:52
Welcome Chiefswife. This is a great board to learn from, lean on and vent to. It has been my relief valve since I found it five years ago. I think I have seen most topics covered, and a lot of good advice dispensed. Two members have PD themselves and remind us all what THEY are going through, while we deal with our own issues. Visit often, donate to keep this not for profit site viable, please. Jim, that maintains the site does an incredible job. Read some of the history of how it started and you will come to appreciate it even more.

By JulieB On 2014.06.06 11:27
So glad to meet you, Chiefswife. I know you will find solace and compassion here, as I have.

Even some of our closest friends and family members do not quite understand what only a PWP and his/her caregiver know. I look forward to your posts and thank you for introducing yourself -- I love details. :)

I'm 56, my husband Michael is 65 and was diagnosed in 2004, but has never had tremors. The biggest thing with his PD right now is encroaching dementia.

"Day by day" isn't a phrase that's appropriate for us anymore -- "hour by hour" is more like it. I'm thankful for the grace that comes whenever it's needed, and pray you'll find the same.

Hugs... xoxoxo


By carman96 On 2014.06.08 10:33
Welcome ChiefsWife.
Lots of good advice here. We are all in different places with our loved ones in this disease, but unfortunately some else has already been there and can offer some much needed support.

By ChiefsWife On 2014.06.11 18:57
Thank you for the kind welcome.

By parkinit On 2014.06.17 23:30

Welcome. I'm a bit sporadic on this board nowadays as my husband has advanced quickly the past several months and about 5 weeks ago suffered a stroke.

He has a colonized bacteria and had to have his catheter flushed with vinegar water every other day because of this. We are now treating another UTI from a different bacterial strain.

My spouse is in a comfortable, yet sometimes confused state, but he doesn't seem to realize his state, so I do stress he is comfortable. After many years of falling and being frustrated with his inability to do things he used to do, it is almost a relief to see him in acceptance of sleeping, eating, and watching television as his life. It is a good life and he is well cared for by an army of caregivers day and night to allow him to reside at home.

There are all stages of PWP on this site and many caring, loving caregivers such as yourself.

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