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Parkinson's Support Group

Welcome to this online support group for caregivers, family, friends, and others with an interest in Parkinson's care. Please introduce yourself - Ask for advice - Share your experiences caring for a loved one with Parkinson's disease. Talk about symptoms, treatment options, side effects, daily life, your tips for others. Vent, laugh, and come back as often as you need to feel less alone.

You can also find information that will may you manage financial and legal matters for your loved one in the Caregiving Money Matters Resource Center.

Help spread the support to more people in need -- Please tell a friend or two. Thanks!


What's New Today

Amina92040 said...

2 days ago

So today even though I'm still hurting from moving things out of my storage with my Grandson Anthony's help over the past three days...I had a plan.
-I was planning to begging to put things in place, sort downsize even more (even though I have already donated almost 80% of what I had. :-(. ) --Well dads counselor brought up his lack of hygiene this past week....and today he visited the Dermatoligest who we both really love ( he's just a super cool guy who treats his patients and there family like family...he calls me sis ??), and he told dad you MUST bath at least 3 times a week! And more is better for you at this stage in life. He gave him samples of shampoo and ordered a prescription cream for the sores he picks.
---He told him " Man to Man your daughter can't force you to bath, but she has to live with your smell, and skin flaking all over everything your skin is so greasy she must need to use windex to clean up after you! Come on dad! I know you better....take care of yourself ok?) to this dad nodded and said your right! I've been lazy and I should be ashamed! ----I'm sorry ladies but WTF just happened??? I've been trying to say all that nicely for over a year. When we got home dad said, " please do something for me, I am going to use the tub/shower off my room, it is closer than yours and I know myself, if I don't leave my bathroom before bathing then I'll not forget to do it! Go to the store get me a new shower curtain, rug, towels and bright in it all up for me please, if you do I'll feel motivated to shower. Get me some good smelling moisture soap too! My skin is horrible" -----Again I think OMG WTF just happened.
So ok I went out in almost 100 degree heat, and got somethings to make his bathroom more welcoming. ------I came home Hot, Tired, and a bit agrovated. But I did it! It's all ready for him in the morning. XxxxxxThe plan is: 7:30 his alarm goes off and he gets up, uses the toilet ( his morning meds due at 8:am, are placed in a cup alone with a bottle of water next to his sink). He will get in the shower, and after he gets out of the shower he takes his meds and gets dressed. I set this alarm to accrue Thursday, Saturday, and Tuesday. It's a start. If he wants to do it more often we I'll set alarms. *******I know this has been a lon post but ...you see the hope here? This looks and sound like a forward move!...I mean we have been going backwards so long and on so many things! Fingers crossed! {When I worked in Mental Heath and management we knew and was thought that Buy in from the patient/client/employee was vital in changing behavior! HOPE lives tonight.

Aligar said...

about 16 hours ago

Amina92040 said...

about 9 hours ago

Amina92040 said...

3 days ago

I applied for this today! It is for folks with Alzheimer's and or Demintia and in my case dad has Parkinson's w/ Demintia Wish me luck! I need a break so bad

http://hilarityforcharity.org/programs/grant-program/

LoriNannette said...

3 days ago

Amina92040 said...

2 days ago

PatMess said...

3 days ago

So we have all heard the phrase "don't ask the question if you don't want to hear the answer." John had his neuro appt today. I asked what stage he is in in regards to the PD and dementia. Answer: advanced. I asked what her best prognosis would be. Answer: 6 months to 5 years! What kind of a spread is that, lol. Best she can do! John is not following the typical path. His mobility is in the moderate realm but everything else is in the advanced stage so it makes it harder to judge.

there is pretty much nothing else that can be done but to keep him happy and comfortable with the very best quality of life we can manage. She actually said that patients at his stage are usually not still at home. Because he is she said is a testament to how well we work together as a team and the wonderful care I give him. She thinks she can get palliative care for him when I am ready for that. So far, we just push through and carry on, chins up and all that.

BobbieK said...

3 days ago

Amina92040 said...

3 days ago

Luludown said...

4 days ago

Even with help and a job I love 6 hours a day, as I watch my husband getting less and less able to take even a couple steps from chair t wheelchair, I get frustrated and anxious and scared about what's next

BobbieK said...

3 days ago

Amina92040 said...

3 days ago

needsupport said...

4 days ago

Need support

Amina92040 said...

4 days ago

PatMess said...

3 days ago

dogonit!! said...

4 days ago

Really BAD day......the fatigue...he is trying to keep up...we live on 10 acres..lots of grass to cut!!! I am so happy that he can still do it!! But after he is done..he is done for at least 2 days. we built this house 20 years ago..2 level house...going to see doc Wednesday..hopefully he will adjust meds......feeling kinda bad right now.

emptynest said...

4 days ago

BobbieK said...

4 days ago

PatMess said...

5 days ago

Good morning to all my fellow caregivers! Welcome to another week! Hope your weekend went smoothly.

John and i went to our son's house Saturday night for our granddaughter's 6 bd celebration. What is it about being at someone else's house versus at home? After all, it is our son's house. John did ok but I could tell he just wanted to be at home. And we (or should I say "I" ) paid for it the next day. Sunday he was so quiet and withdrawn and did not utter two words all day. Hoping today will be better. I hate it when he crawls into his own little world.

We have our other son and family coming for 5 day visit on Saturday. It will be interesting to see how that goes. Shower time! Catch y'all later. Have a good day.

Amina92040 said...

5 days ago

PatMess said...

5 days ago

dogonit!! said...

8 days ago

Just got the diagnosis....for my hubby...very low dose med to start..not helping!!! Only been 2 weeks...Very strong man at age 74..now can barley walk a straight line..so weak..fatigue is unreal......my heart is breaking!!! I know with the right meds we can get thur this but it is very hard!!!

PatMess said...

7 days ago

Southern-yankee said...

7 days ago

not brave heart said...

11 days ago

Hi, my friend has Parkensons Her family are taking care of her. We need help and advice on help for bordom , discouragement and stress for patient. Also courage help for family as care givers. This disease is causing a feeling of loss of control, fear and a lot of stress. any advice for activities, painting coloring, small jobs, ( sorting dry beans for cooking computer games, reading?) Are these good actives, Do we use trial and error to see what will interest the patient? Do we allow the patient to do as much as possible for themselves or do we jump in and help when it look like the task is getting hard. I am not so familiar Parkinson's, any advice may help thank you.

not brave heart said...

10 days ago

DianaCaring said...

9 days ago

Marshmallow2 said...

14 days ago

You're all invited to my pity party. I log onto Facebook every day. I see posts from people I've known from childhood - a married couple who are traveling in Europe together and post daily photos from the UK; a married couple who frequent the beaches in the local area here; posts from the Menopause support group regarding their wonderful supportive husbands. I'm married to nothing - drools, mumbles incomprehensibly, demented, can't do anything for himself. If only for one day I could have a functioning healthy man in my life. Sorry for venting.

emptynest said...

12 days ago

Marshmallow2 said...

11 days ago

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