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
2 days ago
Just wondering...do any of you have any experience with the Parkinson's silverware? Liftware, i think its called? mom eating has become a torturous thing, and of course, shes fine and doesn't need any help. They are a little spendy, but i don't mind at all if it will help her eat with a little less frustration. I was hoping maybe some of you have tried it, or run into anything else you could recommend that might help.
6 days ago
Soooo, we met with the head and neck doc. Dx: John has squamous cell cancer of the tongue base. It is a treatable cancer, but not in John's case. Neurologist said he would not make it with surgery. His casd was brought before the board of docs and they all said he would not survive full on radiation/chemo treatment. So we are looking into palliative care treatment. Meeting with a oncologist and a radiologist as soon as we can get appts. To see if John would benefit from a few radiation treatments to shrink the area some as it is blocking his airway. If we do nothing, it will gradually grow and block his airway. Doc said timeline would be 6 mos to a year, but probably closer to the 6 mos. We have a lot to think about going forward but it all hinges on these next few appts. I had to tell our boys. That was hard. Older son is so calm and practical, younger son so emotional and thinks with his heart. Older son lives close, younger son lives on the other side of the Rockies 9 hrs away..a hard drive 9 hrs. It was interesting their two different reactions. Not sure how I kept it together but managed to. I am sure it will catch up with me eventually.
6 days ago
Bad day. I was sound asleep and dreaming when I had to get up to help Gary. Daughter is gone, and I have granddaughter for the day. She woke up at the same time. So I went from sound asleep to taking care of people in 5 seconds.
Of course, it is bath day, Gary sitting on the pot morning, and a busy work day for me. It is two hours later, and everyone is fed, bathed, and dressed. Dogs have been outside. I just took MY pills and am eating a bagel. So, the worst of morning is over.
But my back hurts, and lingers of the dream I awoke from still linger. And Walgreens called with Gary's refill. And I have a load of laundry to do, mostly urine covered pads. Dishes are stacked up and backed up.
It's going to be a very long day.
10 days ago
I had to place my husband in a nursing home. He has had Parkinson for 16 years now along with dementia with lewy bodies. At home he was taking his sinemet ever 3 hours especially during the early part of the day. Has anyone run into the problem that in the nursing home they don't follow your usual schedule. I have been told they have a extended period of time to give the medication. With Parkinson's medications fluctuations of 30 minutes to an hour might be acceptable for other agents but not Parkinson's medications. They have to be administered on time. I understand it is difficult in the nursing home working with so many patients but it so difficult to see him struggle with moving and eating when if his medication was given closer it would help.
11 days ago
This forum has been pretty quiet over the past week so I thought I would check in with everyone. Thursday past, John had his biopsis done on his neck...3 of them. Also had the "hose down the nose" scope proceedure. We have a follow up appt this Friday to get the results and see where we go from there.
John is having such a swallowing issue and his appetite has decreased significantly. He cannot swallow pills now so everything is crushed and added to applesauce, yogurt or pudding...all day long, sigh. He has gone from 130 lbs to 119 lbs in the past month. No life to him. Sleeps a lot. I am waiting for Friday to get here and see what is what. He may be anxious or depressed. Been in constant contact with neuro doc and pcp. Oh, and the neck surgeon doc said he believes it is the PD causing the swallowing problems and nit the mass in his neck since he saw no blockage when he scoped. A lot to take in right now.
As for me, I am exhausted but that is nothing new. We bought a nurse call button system from Amazon which helps greatly. But it seems like I do laundry constantly. Cannot keep John in clean clothes and he soakes wash cloths with drool quicker than I can wash them. And I have a PILE of them at the ready at all times.
hope everyone else is doing ok. Pop in and say hello! Hugs, PatM
20 days ago
What can you offer for TIPS and SUGGESTIONS for the caregiver to try that has worked for you in your DAILY dealings with your loved one?
You know, the simple, small stuff that makes your life easier.... like putting a kleenex box and water bottle at each place they sit so you don't have to keep fetching these or providing a wooden back scratcher, or having them sit on a pillow so they can (sometimes) get up on their own. If we all post a few things, it will be a great benefit to others who follow in our steps.
Please post it again, even if you have said it on another spot so we can all have one place to come back to for new tips. And thanks for all you do, it DOES make a difference!
20 days ago
Even tho he has so many of what I believe are pd's symtoms & is on 3 meds for it My brother has not been diagnosed with Parkinson's I agree with his Drs well I trust them but sometimes I wonder & others have brought it up as well so does anyone know anything about tardive dyskinseia? I know it can mimic so to speak parkindons but he's getting worse I'm afraid if I chance making his dr drop us if I keep on with the doubts I don't want a new dr he is amazing He has also been diagnosed with dimentia
20 days ago
Just whining ...
Well, this morning my daughter had overtime, so I was balancing 2 roles, Grandma caring for grandchild, and caregiver for Gary. When I went into the bathroom to empty and wash his urinals from yesterday (spill proof holds 12 hours for him) I did a brief calculation.
When Gary was hospitalized the second time 2 years ago, he started using a urinal. Not only does he use them, he can't manage to "hit" them without me placing them. Sigh.
Anyway, I figured in the last two years, I have washed and emptied them twice a day for a total of 1,460 urinals.
Assuming he goes at least 4 times a day, I have helped him pee more than 3000 times.
I guess the best I can say is that we only have to do it one day at a time.
Hope all of you have a good day.
21 days ago
I've been waking up at 3:30am for over a month now. Sense my dad fell and has been recovering. So much has been going on and it's been frustrating that during this time I really need more sleep I can't seem to get it. I've asked myself why? What is going on with me that I'm wide awake so early?
I realized this morning that I'm getting up early so I have time to cry for a few hours before the days tasks start rolling.
I get my coffee, read my FB posts and just weep...then I pack my feelings back into the box, put the lid on and push through. I wonder if I will still do this after dad comes back home????
farm gal said...
22 days ago
I get so very tired. Just hope I can keep taking care of my husband. Now it seems like I have so much responsibility. And his short term memory is changing quickly which is surprising. It is comforting to read all your posts and know so many others are going through the same thing
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