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Partner Recently diagnosed with Parkensons
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Alyxboi posted:
Hi we just found out my partner as parkensons. I was wondering as I am only 38 if anyone else is out there willing to chat with me about this that's around my age. My partner is older and I am looking for some that just might have something similar to this, as in your younger and you have an older partner with it or spouse. If not anyone with family that has it I am interested in chatting with too. Mostly caretakers as I will be her primary caregiver inside the home. thanks for any and all support you can give.

We just found out yesterday she has it. So this is VERY new for us, and scary.
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susiemargaret responded:
hello, A --

i am so sorry about your partner.

i know we have readers of all ages, so i hope some will respond to share their experience with you.


one idea i had is that it might help for you to find an in-person support group for caregivers; your partner might find a support group for people who suffer from parkinson's helpful as well. to find either of these, first check with all of the major parkinson's education and advocacy organizations --

-- michael j. fox foundation, http://www.michaeljfox.org/index.cfm ,

-- natl parkinson foundation, http://www.parkinson.org ,

-- american parkinson disease assn, http://www.apdaparkinson.org/userND/index.asp ,

-- parkinson's disease foundation, http://www.pdf.org/en/index ,

-- parkinson's action network, http://www.parkinsonsaction.org ,

-- parkinson alliance, http://www.parkinsonalliance.net/index.php ,

-- parkinson's institute/clinical center, http://www.thepi.org ,

-- parkinson's resource organization, http://www.parkinsonsresource.org/index.php ,

-- bachmann-strauss dystonia/parkinson foundatn, http://www.dystonia-parkinsons.org , and

-- WE/MOVE, http://www.wemove.org .

-- then check with hospice facilities near you;

-- call the depts of neurology or movement disorders at any large hospitals, medical schools, or nursing schools near you;

-- look in the "community calendar" section of your local newspaper; and

-- do an internet search under -- ((caregiver OR parkinson's) "support group" "name of your town" "name of your state") -- this will bring up many sites, but if you are looking for in-person rather than on-line support groups, you will probably be able to narrow down the most helpful sites fairly quickly.

for you in particular, emotional and logistical support will be very important, esp when your partner gets to the point where she is less able to take care of herself. here are some caregiver organizations that might be able to give you some guidance and support --


-- http://www.wellspouse.org/home.html ;

-- http://www.disability.gov/health/caregiver_&_provider_resources/caregivers ;

-- http://www.caregiversdirectory.com ;

-- http://www.abta.org/index.cfm?contentid=162&itemtype=2&Caregiving- ;

-- http://www.caregiving.org ;

-- http://www.netofcare.org/content/default.asp ;

- http://www.caregiver.org/caregiver/jsp/fcn_content_node.jsp?nodeid=2083 ; and

-- http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=354 , caregiver resources, second section.


i see that i am about to run over the word limit, so can you meet me at my subsequent post? i have just a little more to add. i send caring thoughts to the both of you and hope you will keep us posted on how you and your partner are doing.

-- susie margaret
what good is gold, or silver too, if your heart's not good and true -- hank williams, sr.
 
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susiemargaret responded:
hello again, A --

this is the second part of my response to your inquiry about emotional and logistical support for you as a caregiver of your partner who has parkinson's.

one of the absolutely critical areas of thought and planning for you will be getting some respite support for yourself.
respite care is when someone else comes in and looks after your partner for a half-day, or a day, or two days, or even three days so you can go somewhere else (a hotel, a friend's house, wherever) and get a break to recharge your own batteries, so to speak (to sleep uninterrupted, to eat out, to shop, to visit with friends, etc.) -- a respite from your 24/7 responsibilities. you can find info on respite care at --

-- http://helpguide.org/elder/respite_care.htm , be sure to read the entire page, because toward the bottom there are multiple links to other helpful resources for full-time caregivers;

-- http://www.eldercare.gov/Eldercare.NET/Public/Resources/fact_sheets/respite_care.aspx , a federal govt site;

-- http://chtop.org/ARCH.html , http://chtop.org/State-Listings.html , and http://chtop.org/Search-For-Respite.html , on all of which you can search for help by state; and

-- http://www.respitelocator.org .


finally, you might also want to ask for advice and emotional support from several other communities where people are likely to be faced with the same caregiving problems you will be facing --

-- the alzheimer's community, http://exchanges.webmd.com/alzheimers-exchange ,

-- the stroke community, http://exchanges.webmd.com/stroke-exchange ,

-- the multiple sclerosis community, http://exchanges.webmd.com/multiple-sclerosis-exchange , and

-- the cancer community, http://exchanges.webmd.com/cancer-community .



i offer these several alternatives not to overwhelm you but simply to show you that there are resources for caregivers that you can draw on. don't try to tackle all of them at once; it will be too overwhelming. check out one or two, see what they say, then check out another one or two.

i send caring thoughts to both of you and hope you will keep us posted on how you and your partner are doing.

-- susie margaret
what good is gold, or silver too, if your heart's not good and true -- hank williams, sr.
 
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Alyxboi replied to susiemargaret's response:
Thank you, I will check a few out. All that info seams helpful will go through it slowly.
 
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Haylen_WebMD_Staff responded:
Welcome Alyxboi,

I think it's great that you are reaching out for support! I imagine this is a very stressful time for both of you.

I wanted to give you a link to our Parkinson's Disease Health Center. Here you can find a wealth of information and resources, Please click here to access:

Parkinson's Disease Health Center

As always, susiemargaret has provided excellent information! Thank you susiemargaret!

Haylen
 
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propark replied to Haylen_WebMD_Staff's response:
I am 42 years old now, diagnosed about three years ago. If I can help in anyway post here or email me at bprochazka@bedford.k12.oh.us


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