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The worst was yesterday when he dropped his cell phone in the Walmart parking lot. He is in stage 2 parkinsonism. He's shuffling more and mumbling more. Is he slipping into stage 3 already?

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My husband would like to carry a wallet but I keep it in my purse. He has missed placed it and several other things ,so I keep track of everything that is important. Someday are better then others for him. He has had Parkinson's for 7 years now. unable to drive because it reflex's are to slow. and his walking is not for a long distance.
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With Parkinsons's the smallest of tasks can become monumental, leaving your loved one frustrated and helpless. Sometimes, it helps very much for the caregiver to just get it done, so you can move on to more pleasant things. Just give him less to keep track of.
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I think that new catalogue should be arriving any day now so I'll go look for that. Thanks.
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I think someone else in the thread might have mentioned locators that you can attach to things, especially to keys, and I vaguely think you might be able to find something like that at Lillian Vernon catalogue or something like that.
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Thanks, Geo, but I think he would bulk with that, or leave home without tying it on. Right now, it's a daily search for his car keys. Are we having fun yet?
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Aside from just the fanny pack, if he just dropped his cell phone, then he might not remember to replace it in the fanny pack. I'm not saying the fanny pack won't be useful, just not to depend on it. If you can find a way to physically attach the phone with a lanyard or something, even if he drops it, it's still attached. I'm sure there must be products for this but, at the minimum, I can imagine attaching a rope to it and tying the thing to something like his belt so that, if he drops it, it's not crashing to the ground nor getting left behind.
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Al is frightened now because he woke up and can't remember going to bed. He had undressed, put on his mask and got under the covers but he just can't remember doing that. However, he had no problem finding his way to the dentist this morning. But this is the one he hadn't been to in 7 years, so that's long term memory. I guess I was tired from the long session because I fell asleep on the couch and burned up the stewed tomatoes I was making for tonight. He's still asleep so he doesn't yet know how bad the house smells!! Maybe by tomorrow he won't remember that I ruined his supper -- sometimes losing short term memory is a good thing : )
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My husband has also had PD for some time. He is 75 and 3 years ago I had to find a nursing home for him. Unable to walk and talk clearly. Oddly, he has no dementia. His doctor doesn't go by stages so I'm finding this conversation interesting. Even if it's an age old one.
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Sunny, Sounds like he needs a reason to keep going. Al finally retired for the 3rd time last September and he's going downhill faster since then. He has more trouble pulling things from his memory to his mouth now. (For those who don't know, Al has a PhD in pharmacology - took early retirement at 55, reactivated his pharmacy license and worked as a pharmacist since then.) Perhaps we need to give our men a reason for living. Al's reason is that he understands that when he dies, I become a pauper -- maybe even homeless. So he is trying to be as healthy as he can. He goes to the gym 3 times a week because his doctor told him to, and is careful to take his meds as prescribed. He does crossword puzzles because she told him it would help keep his mind active. Perhaps you need to find what your husband needs to make him want to live and be well. Good luck to you. I may not have a "husband" but when he looks for company, he is still my best friend.
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My dad has had PD since 2009. Yes everyday is a treasure hunt for things that he moves around constantly. He sleeps very easily, falling asleep in his chair watching TV. Night time goes easy so far. I am lucky considering what you all are going through. I do have to do almost everything for him (except hygiene - glad he still is able to do that. His legs are having a hard time moving at times, and again, thank goodness it is only that so far. His thinking is not totally correct, but his memory for long term is much better than short. I notice he doesn't remember much that I have told him or talked to him about. Thanks for all your discussions. It is a big help to read what may happen. I am trying to keep him home as long as we can, which means I only can work part time and even then not sure how much longer I am able to leave him alone to do that. I keep hoping this is the worse things will get, but one never does know. Hang in there everyone! And thanks for being so helpful.
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Yes, he can still reason, at least during the day. But as I said, he's very stubborn. And I feel very strongly that he should keep his autonomy as long as he can. We've only been married since 2008, but have been living together since 1993. We married because we realized after my mom died that we might need to make legal decisions for each other. The commitment has always been there. We are lucky. Our house and cars are paid for, I have a wonderful daughter (and her husband) from a previous marriage. And I have a large circle of supportive friends, four of whom who have helped me this week. I wish my husband had that, but his friends and former colleagues are scattered (he is an archaeologist and a pretty solitary person.) The progression of the PD has sped up since his retirement 1 1/2 years ago. He has always been happiest when out working "in the field," as they say. Now he can't. He is a strong man, and what I fear is that his body will keep on going long after his mind quits. Then I will have to decide what to do next. I'm not sure what Medicare and insurance will pay for.
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Sunny, can he still reason? If so, perhaps you can get him to understand that his health is also yours -- that you need him to be well as long as possible in order to be a companion for you. My husband understands this, but in my case, he only understands the financial problems involved, not the emotional. Whatever, it keeps him doing what the neurologist tells him to do. Maybe men can't understand how attached we are emotionally to them? How long have you been married? We've been married 57 years. I don't know what I'll do without him.
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My husband was put on the Excelon patch, which I thought helped him. But he didn't like how it made him feel, so he quit using it. Now he wants off the Stalevo. And he is stubborn as a mule. It is HIS health, not mine, and he needs the autonomy to make his own decisions as long as he can. So I try not to interfere. But it is hard.
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My husband has always misplaced things, even before his PD diagnosis.. But it has increased since his retirement. I try to think of it as a treasure hunt. But I think I will order some of those "Tiles" and link them to my cell so we can find his wallet, his keys, his cell (which he forgets to charge,) etc. I would put them on his glasses if I could. He has 4 pair, and constantly loses them. He does fine during the day (except for losing things) but sundowns in the evenings. What is hard is to watch this intelligent man whom I love descend into dementia. And I cannot do anything about it, plus I have health challenges of my own. I want him home as long as possible, but I'm not sure how long I can care for him. Any advice about what Medicare will pay for?
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The doctor just gave Al another med which is supposed to help with his memory loss. It's expensive but we have good insurance. Sometimes I have to remind him where we're going. He still drives, but I don't know for how much longer. I don't know what we'll do when he can't, because I don't drive at all.
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Hi Laney..my husband is 75 also with pd forsome time now. He requires round the clock care and sadly has been in a nursing home for the past 3 yrs. It's hard, but I just can't care for him at home. Cannot walk, has garbled speech (not understandable), diskenisia and needs help eating. I visit him almost daily (one day away for errands) and help him with lunch. One different thing is that to date he has not exhibited any signs of dementia.His dr. does not go by "stages" but I often wonder.
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Somehow you need to get your rest. Do you still sleep in the same room with him? Perhaps if you had separate rooms he wouldn't keep waking you up. But it's nice that he's concerned about your welfare. I heard someplace that staying awake all night is "normal" for someone with PD. My Al often has restless nights when he thinks he's not slept at all.
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I don't know what stage my husband is in, but he has PD-related dementia. He does pretty well during the day, but "sundowns" in the evenings. He wakes me up 2-3 times at night. Last night, one of the wake-ups was to see whether I was warm enough. I appreciate the concern, but he didn't have to wake me up to ask! He has always lost things, but now it's a "treasure hunt" every day-- keys, wallet, glasses, etc. I have an odd auto-immune illness, and am not sure how long I can continue to do this. I want him to stay home, but I don't know how long I can care for him.
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The latest problem is sleep. Al sleeps nearly all day and our primary doctor told him that it is normal. Yesterday, he got up at 10, went for some blood tests and a short stint at the gym, then ate breakfast and went back to bed. He didn't get up again until 4:30. I don't know how much he slept last night, but he was asleep every time I got up for my potty breaks. Is this a normal pattern?

I'm feeling very good now because I had my epidural. These shots are keeping me from having more surgery. I don't know how long I will be able to keep getting them before it becomes dangerous. The surgery would mean another fusion, bone removed from the other hip this time, wearing a brace for 3 months, with 3 months of PT after that. Not a pleasant thought. Al couldn't take care of me a year ago and my poor daughter was run ragged between her job, her bi-polar husband and her grandchildren. I get so depressed thinking about it.

Assisted Living is not an option for us -- even if we sold everything we own, we'd only have enough $$ for one of us. Makes a person wonder if the struggle to get Al through ten years of college was worth it.
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Amott6- hang in there. And yes we do learn lots of new ways of doing things. Just wish I could learn a lot more patience :D
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His neurologist is a she, and she's very thorough. I think I'll give it a couple of days to see if he calms down a little. Picking up things up off the floor is hard for me because I had surgery last year and have 8 pins and 2 rods in my back now. Parts of me don't bend like they used to. But I've learned new ways of doing things. I guess that's what we do best -- bite our tongues.
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@amott6 - wouldn't hurt to check. Our neurologist did that once with dad when his shaking was really bad. There may be another solution he may recommend instead of increasing his meds. Ours is reluctant to increase and I don't blame him...meds can cause more of a problem sometimes and I always feel if there is something else that can help is always better than a med increase, but definitely ask your neurologist and see what he says. My dad loves to shred, which makes me happy...I feel for you picking them up off the floor. Dad was a pitcher and still tries to "pitch", which includes his clothes into the hamper, newspapers not making the rack, etc. I can say my back is very unhappy with the constant bending over, not to mention it is very irritating when trying to keep the house clean and take care of him. I have tried to bite my tongue because if I ask him to stop he says he is catching heck lol, poor guy. I am still learning patience. Hope it comes soon! :D Good luck and God bless!
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Ugh. Al is obcessed with identity theft so that every piece of paper that has his name/address on it must be shredded. Problem is the shredder is in my office. He rips out the labels and usually drops them all over my room. I then pick them up and dispose of it for him. The stress of the hot water heater problem is behind us now but he is still very shakey after it. Do I need to check with his neuroligist if it continues? Perhaps he needs a higher dose of his meds?
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Hang in there LaneyM. Don't feel guilty, it is a hard thing to get through and when you need help, you need help. You are doing what you need to do to help your loving husband. Check out Companions and Homemakers, I am not sure if they also come in to help bathe, etc., but even someone to come in and hang out with him while you can get yourself out for a while will help. I understand, I feel like my father is attached to my hip also. The most frustrating thing for me is that he doesn't remember anything I tell him and feels like I am just giving him hell, which I am not. Not sure if he is tuning me out or if it really means he doesn't remember (You know how hard it is to let someone help you when you want to be able to do it yourself). I never had children, but feel like I have one now, except he is not so willing to help out like young children that like to help mom sweep, clean, etc. It is definitely a turn around for me. Hang in there. I know how it feels to be tired and depressed and not want to get up and do the same thing again, day after day. My prayers are with you and your husband. If you ever need to just vent and express your feelings, feel free to send me a message. It feels good to talk to people going through similar situations. This forum has helped me feel much better about myself and the situation. Thanks everyone for sharing your experiences.
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Prayers and good thoughts to all because this is not an easy job. I have just started checking into nursing homes and am feeling really guilty in doing so. I am also going to check into help coming into the home. I have been so tired lately and depressed I feel like my husband is attached to me at my hip I know that is depression. I love my husband to the moon and back but this is so very hard watching them loose control of all the things they once could do.. I have a hard time remembering how he looked before I have to look at pictures.
Take care all I know how hard it is....god bless us and give us strength
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Hi, blueeyed ... My husband is not quite as bad as yours is. He does the shuffle, the mumbling with his head down, shakes and drops/loses things. But he still walks without the walker and is still social. To answer one question, I don't think the PT he had at the balance clinic didn't help very much but he hasn't fallen in a couple of months now. Al is a very smart man, graduated cum laude from college and went on for a PhD. I think this has helped with the PD. I dread the day when he will need help with more things if his mind stays so alert. We got him a "zipper" necktie and a shirt that has velcro instead of buttons so he can still dress himself.

I know it is different when it's your father instead of a husband. I lost both my parents before they ever needed help. Just hang in there, get help when/where you need it and try to keep smiling.
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My dad is 73. I think he is stage 3. He also loses everything so I know the treasure hunts everyday and night. I really love when he just has to find something that is not needed at that moment. My mind is starting to be photogenic-like, when in my head I see where it was laying around (as long as it is in the house). He shuffles, talks low and into his chest, but his mind is hanging in there and thank goodness we are not at the stage of total care. My husband and I live with him. We have been married 8 years and only been out on our own life for a year. Previously, we were caregivers for my mom who passed from breast cancer. So, it has been a long time that I have been care giving. I am in CT and wondering if anyone has ever participated in a Parkinson's study where they work on motor skills, especially with the difficulty walking and if it helped anyone. We are working on supplements to help him get stronger and help him to detox, since Parkinson's make it hard on the body to normally detox. I am hoping detoxing helps makes the oil he excretes through his hands better. (I have to wash surfaces at least 3-4 times a day, which is still better than what most are dealing with in bathroom clean up. Unfortunately when that time comes, I will have to get a nurse in to help because I just can't do it. I feel stretched so thin, find it hard to have a life of my own and am worried and stressed about his disease increasing. I am thankful he is still walking with his walker, but it is getting difficult for him. He is such a social guy who used to go out more and it is so hard watching him not be able to do what he loves. On losing things when we are out, I hold all his things so the stress is not there, I know nothing has been misplaced or dropped. I want to thank everyone for their comments. It really helps to read what others are going through and what I have in store for me. I have siblings that just do not want to know, which adds another stress making me full everything. I am hanging in there and trying to do the best I can. This site has been very helpful. Thank you everyone for listening and sending prayers of strength your way.
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Thank you Elaine for all your valuable information. The people who were conducting the program I attended were a retired minister and a lady they were not or did not work with Va....they fill out the forms for free as many elderly have problems filling out this 26 page application/you get one thing wrong they reject it and you have to wait another entire year.....they have had 100% approval so far on all forms they have done....but you need to be careful for sure who you get to help you....a lot of people,don't know of this benefit they tend to keep it hush hush
Thanks again for your information will going to that web site need all the info I can get
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LaneyM - (and everyone else please read this as you may be eligible for Veterans Aid & Assistance Program) LaneyM - you mentioned you went to a meeting to learn about Veterans Aid Benefits. The Veterans Aid & Assistance is a wonderful program, but a word of caution. Many meetings that discuss the program are held by investment firms. They say they will assist you in filing out the paperwork for free. They will do that but their main reason to help you is to get you to invest with their company. That's fine, if you're ready to invest money. Also do not go to any organization that requests that you pay them to help you fill out the forms. Go directly to your local veterans administration office or give them a call and they will help you free of charge. Check with your County Offices - many have a veterans dept. and they will assist you for free in filling out the paperwork. You should never have to pay anyone to assist you with that paperwork. Yes, you are right the person applying must have served in the military during a declared wartime. Also their spouse is eligible for benefits. You do not have to spend down your money like applying for Medicaid. The applicant will be able to keep any ss checks, pensions etc., that they receive. This program basically assists you financially, not based on your financial needs, but the fact that you or your spouse served during a declared war. To qualify for A&A it needs to be established by your physician that you require daily assistance by others to dress, undress, bathing, cooking, eating, taking on or off of prosthetics, leave home etc. You DO NOT have to require assistance with all of these. There simply needs to be adequate medical evidence that you cannot function completely on your own. Go to www.veteranaid.org and on the left side of the page you will see "The A&A Program". Click on that and it will give you a lot of information. Benefits are paid if the person needs to be put into a nursing home or an assisted living. It also provides benefits - visiting nurse, etc., if the person is still at home. The applicant will not receive benefits immediately upon filling out the application since it can take months for processing. However, once approved they will pay retroactive back to the 1st day - it's just that you may have to wait until the first payment arrives. It's a wonderful program and every veteran and spouse that is eligible should take advantage of the assistance - they fought for our country - now they should be helped. Good luck & God Bless!
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Do you want to know how many pairs of gloves/mittens I lost in the winter of '95/96, when I was age 50? Well, I don't want to tell you. :-)

One factor in judging someone's progression is the baseline. Did he lose things often when he was "normal"? That is a little different than someone who hardly ever lost things suddenlybeginning to lose things right, left, and center.

Many years ago my mother had an unexplained seizure. The doctor was trying to see what lead up to it. All seven of Mom's kids were assembled. "Has she had a poor memory lately?" We looked at each other blankly. "Well," he tried to explain, "has she been forgetting the names of her grandchildren?" In spite of the seriousness of the situation we all burst out laughing. She gets OUR names wrong, never mind the next generation. This has been going on since she had more than one child. So that particular example didn't tell us anything about changes in her current status.

In addition to looking at lists of symptoms, it is important to use what you know about your loved one's abilities and weaknesses before the illness, to judge how serious the current symptoms are.
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