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Kashi - Ugh! What a hard problem.

How can you get him to agree to hire help? What happens if you "ask" him to mow the yard? I know you don't really want him to do it. What if you said, I'm hiring someone next week if you don't get it done by the weekend. Then when he wisely doesn't try to do it himself, say, I have to hire someone because you're too busy. Then he can say that he was GOING to do it, but you were just too impatient. Face saving.

Have you tried begging? My father never responded well to logic, but he understood and respected "want." Tell him it may be silly of you, but you WANT to hire so and so because ----- He needs the work, or he will do it right now, or it makes you so sad that it's not done, ------ and will he please please just let you do it? Because you WANT to do it.

What works with him? You should try not to make him admit that he can't do these things, or admit that he's being irratonal. For example, "You've mowed the yard 500 times. You should just take it easy." Would an "irrational female" temper tantrum work? He could feel superior to you by remaining calm. Bribe him with sex or a special food. Agree to skip one of your activities to stay home with him to watch a special movie.

He may be a real tough nut to crack, but try every different flavor of honey, because it usually works better than vinegar or logic.
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I've posted my comments to another thread, but it seems to fit here...I am also taking care of my older husband (although he won't admit to that!). My situation is not very much fun as he is not accepting of his physical limitations.. He thinks he can still do everything, but he can't and doesn't. So it's left up to me to get things done around the house and yard. We have a large house on 12 acres so it's a lot to take care of. He gets very upset if I arrange for outside help, i.e. someone to mow the yard, do repairs around the house, etc. He states that he can do all those things but of course they never get done. We have not been getting along at all because of his attitude and I've even thought about leaving but I know that he cannot take care of the house which is a big investment and I hate to see it go down. So it's a real dilemma as to what to do. Not sure I want to live like this. I'm retired and am very active. He cannot do much at all ..even walking across the room tires him out. He's never really has taken care of himself and has had bypass surgery. Not sure of his mental state but it seems to be deteriorating too since his attitude seems irrational to me. He also seems to resent that I am very active. I keep telling him that we are both getting older and cannot do some of the things we used to ..and that it's ok. But he doesn't seem to listen. Any suggestions on how to handle this?. I
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kthompson, my husband has Lewy Body Dementia too. He started having symptoms in his 40s, and we tried to get a diagnosis, but because of he was so young the drs never considered dementia. I think I noticed the symptoms, because of his age, maybe would have written it off to old age, if he had been older. Anyway, it took 7 years and 5 doctors, 6 if you count the chiropractor who told us to consider Parkinsons. Strange that we had to go to a chiropractor to be pointed in the right direction to doctors who knew the difference. That was 5 years ago. So I've been dealing with this for 12 years. I am 60 and he is 61 now. He is still somewhat functional at home in his routine, with supervision (reminding, cautioning, etc.), but doesn't drive or make decisions. Though things are starting to slip more, and we need to start getting a little in-home care.

Jenx4740's regarding your concerns about financial survival for the spouse, we're in the same boat. We're living on his on Social Security Disability, with VA health benefits for him, which works for now. But I know when we hit the care facility stage, our assets will be an issue. We'll probably have too much to qualify for assistance, but not have enough to pay for a care facility, as least not for long. The big middle class "Catch 22." So the big question will be how do I come out with enough to survive. Since I had to retire early to take care of him, I'll probably be out of the workforce too long to go back to my old profession, and will probably live into my 90s, if family history is any indication.

We have lived frugally all our lives, so have a little put away. It would have been enough to continue to live frugally and work part-time, if this hadn't happened. Unfortunately, the last few years of medical expenses (prior to getting on VA) have caused some deferred maintenance to our house. A friend recently suggested that I make sure to use some of our savings to get our house in top condition and a new car, so I am left in the best position possible, and there would be less savings to count against us. In our state, I will be allowed to keep the house, a car, some savings and some of his income. Anyway, I need to go to an elder law attorney to figure how to do this legally.

It's all very nerve racking, since my crystal ball is on the fritz.
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amott6 - so sorry for you and your husband. I just read a story about a woman with PD who used weighted utensils to eat, to overcome the shaking. You probably know all about that already.

I fall down from time to time, usually from not looking where I'm going, and I am certainly shakier afterwards.

Did you notice that there is a section here for PD? Again you probably know that. I know very little about the disease, myself. Good luck.
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I am 76 with some minor disabilities, caring for a husband (77) who is a stage 2 Parkinsons. I married my sweetheart 57 years ago. Last evening we went to a church picnic, where he fell shortly after our arrival. Then his hands shook so much that he spilled half his food as he carried it to the table. I felt so bad for him. His hands are shaking more lately, but not as much as after the fall. Was it the fall that caused it?
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kthompson - "he would PROBABLY remember killing someone"

Hilarious in a disturbing way. I know what you mean. But my husband would make up reasons why!

Yet another reason to be glad I'm retired. God bless us every one.
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Jinx, yes, my husband is still fairly competent - that is, he would PROBABLY remember killing someone but not the reason WHY. Is that competent enough? LOL We are going through this journey together, he is 44 and I am almost 46. His problems started in his late 30's but we didn't recognize them for what they were and sought no help. *sigh* At any rate, I have to tell him over and over and over again the things we do every day, and if there is anything that varies from the semi-routine of our lives, then it's closer to every five minutes of reminding him. I just try to remember (mostly with great success) that he is just not himself, even though he LOOKS like himself and SOUNDS like himself. Yes, I miss my husband, but I figure if he wakes up on THIS side of the dirt then there is hope. As far as going through this Medicaid step and retaining a few dollars just in case I die first... yes, I'm doing that. I've recruited our older daughter and youngest son as executors. I've been keeping all our bills on the computer in a working Excel program that I made myself. I call it Checkbook and every transaction from our checkbook or automatic draft to our checking account gets put in it. I also keep a partial record of our savings as they fluctuate, depending on medical needs at the moment and the availability of funds in the regular checking account. He does not keep up with ANY of the bills, or grocery money, or checking account or savings... none of it. He DOES however, question me on why he can't have more than $75/week. That comes to $3900 per year and I've told him that... he used to work offshore as a Motorman (like a mechanic) on a drilling rig, and he made very good money (over 80K/year). Now that we are reduced to disability and my income, he's angry that he can't just spend what he wants anytime he wants. Sorry, I didn't mean to digress... there's just so much I haven't been able to talk about. Even when I told my boss his situation (after 2 1/2 years of this) and what kind of health he is having, my boss said, "I didn't know he was that bad off." But I'm not a complainer, people get tired of hearing it after awhile, I know. Thank God for this place. I can read and pray and vent, all in one fell swoop. I hope I answered your question, though I feel as though I probably just confused you more. Have a blessed day.
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Hello everyone. I haven't been on this thread for a while so I'll give you a quick update. My husband's condition of Lewy Body Dementia went down hill rapidly. He was pretty stable for about 2 months, but then everything went haywire. He took off in the car twice; got lost both times, and only by the grace of God was he and everyone else on the road safe. The second time the police were called. He was found 3 hours later, about 10 miles from home along the interstate!!! Fortunately, he was spotted by the highway patrol because he saw the car going very slowly. By the time he turned around and came up behind, my husband had pulled off the side of the road and the "Be on the Lookout For" alert came over the radio!!! He transported my husband to a behavioral center where he stayed for 10 days. He was just moved to a SECURE memory care facility because I can no longer keep him at home. It is too dangerous. I have been working on getting his license revoked, but there was a dis-connect between his neurologist and the neuropsychologist who did the testing and the results never got to the doctor. The only reason my husband pulled off the road is because he ran out of gas!! He did not know he ran out of gas. He told the police, "stupid car". I discovered it was out of gas when I went to pick it up. It was an emotionally draining experience that I would not want to repeat. I have been doctoring my stomach since the occured and am seeing the specialist tomorrow. I believe it's all just "nerves" and stress, but I need to be sure. So my friends I now am facing all that I knew had to happen eventually, but I am totally OK with it. Because of the number of "coincidences" involved in all that happened, I am sure that God's plan has come to pass in His time. I know my husband is safe and will be well-cared for. It's been a roller-coaster ride of visiting facilities and making all the arrangements, but I can now speak from experience. The people who work at these places have seen and heard it all. They will guide you through the process and give you all the support you need. Do not be afraid! I have found that by reaching out to people, they are more than willing to help in whatever way they can. If they don't or can't do it, they know someone who can and will. I will not see my husband for a few days...he needs time to adjust to where he is. He doesn't know he'll never be coming home. they have treated him with respect and genuine concern for which I am very grateful. When you go to see a place, do like you are supposed to do at a RR crossing: stop, look and listen. Observe, talk to people, ask questions...don't be afraid. I have some concerns about how my husband will react when I do go to see him: will he say, "Let's get my stuff and get out of here" or what??? I don't know, but I DO know that the people there...nurse, CNA, techs, admissions director will be there to help me. God is good. I am blessed.
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Hello! I'm taking Bookluvr's suggestion to reactivate this thread for spouses. I'm at the point were I need to go to an elder lawyer. How can I handle this and not make my husband feel bad? He accepts that he has problems, but prefers to call it ADHD.

We need to set up our limited resources so that whoever lives longer will have assets to live on, and so that he will be eligible for Medicaid when our assets run out.

Has anyone gone through this with a spouse who was still competent? What was it like? Was it painful?
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Star42, thanks for sharing your story and the advice. I think it's normal to miss changes in behavior when you've lived with someone so long. If it doesn't slap you in the face as strange, you just think it comes with getting older. The only person who could tell me anything is my husbands ex and she hates us so where would the objectivity be or the truth for that matter. His sons are in their 20s and as nice as they are, they're not that interested in their dad, like a lot of kids their age. I started my diary today. It's evident something is not right, I just need to find out what it is. My daughter and her toddlers are traveling here as we speak and I'm anxious to see how my husband behaves the next 4 days. Last weekend his grands, 2 & 6, came for the night and he hardly interacted, left most of it to me. Not like him at all and that started my concern. That and the fact he made plans for us to attend a function after we'd just agreed not to go, sad he forgot. None of it seems like him. I'm so thankful for AC because if I hadn't read so many stories about this subject, I am not sure I would've snapped to it.
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Considering the privacy laws that are in place, I'm sure your physician would share any info re: your husband with you, providing he has signed a release form. They would then be able to give you any info re: his health. I had no idea my husband had dementia until he had surgery; following surgery, he seemed very confused, disoriented, etc. The surgeon told me anyone over 70 can be confused,etc. following surgery; however, he said since there was some underlying dementia, the confusion may not go away, that dementia is progressive and at times after surgery is more apparent. Until that moment I had no idea he had dementia. Hindsight is a terrific thing; after the surgeon made that comment, I was initially in denial, thinking there was no way he had dementia. Since then, I have been thinking back over the last couple of years and realized I did not pick up the signs. I recall that he used to be a very kind, thoughtful person. I had noticed something was "off", but could not figure it out. We used to go out for dinner, etc. The last couple of years we did nothing together, unless there was a family get-together. He would buy cars, motorcyles and not tell me. I made the remark to a friend long before the diagnosis that I felt like I was living with a stranger. I would attempt to discuss something with him and he would accuse me of arguing. There were times when we would have a discussion, I would ask a question and he would just walk off. He would leave in the morning to have breakfast with his friends and not return home until late in the day, take a nap, eat supper and go to bed early or "run an errand", anything to not be around me. After the diagnosis, I found out from his friends that they had noticed odd behavior, he could not appropriately answer a question, his driving became very dangerous. When I tried to talk to him about his driving, he would become incredibly angry with me and tell me to get out of the car. I also noticed the "hoarding" in his car........bank statements, cancelled checks, blank checks, bills that were not paid, etc. Many, many other items just thrown all over the car. I would find scraps of paper with the bank balance scribbled on it. I talked to the bank and was told that he would be in there frequently, asking them to balance his check book (apparently he could no longer do that); when they worked on it for him, he would argue that they were wrong, that was not the balance. He had overdrafts. I was totally unaware of these things since he would hide his check book from me. His friends told me they had noticed the poor driving habits. I would ask where he had been all day, I would get a vague answer. He would make very foolish purchases, buying items from infomercials we did not need. He would lie about anything. He would have a problem taking his medications according to instructions. He would also become angry very easily and normally, he usd to be very good natured. Paranoia is another sign. It's good that you're headstrong and have a take charge attitude. I wish I had been more observant, perhaps I would have noticed the odd behavior sooner. Dementia is progressive, but there are drugs which can help slow it down, but not reverse it. I've been told that anyone with dementia does not realize they have it, if they are told they have it, they deny it. They believe there is nothing wrong with them. Please let me know how things are going. I wish you the best. There is a SLUMS test that can be given by a physician or social worker. It's a 5-7 minute test (just a few questions, nothing demanding). 0-20 is severe dementia, 21 + is moderate.
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Gonzalez, I'm so sorry the confirmation was Alz for your wife. Even though you weren't surprised, I'm sure it came with much sadness. I guess all you can do is take each phase as it comes and be prepared as best you can be. Your wife is lucky to have you be by her side. Hugs to you too.
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NewWife, oh such wonderful news. Your message came through loud and clear how happy you are! Take care of your "rooster" and enjoy your newfound joy. The best to you both.
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Good Morning everyone, I have been absent from this area for a few days, and want to let all know what is going on. My husband had his surgery yesterday and for the last few days have been in a tail spin getting things ready for his back surgery. Well, yesterday after everything was done, I have the wonderful news that my husbands disk was something the doctor has not seen in years, instead of a 40 min surgery to give the nerve area relief, it was over 2 hours and he felt there was a good possibility that the nerve was damaged beyond repair...however, for the first time since I have known him, remember I am the newlywed, he walked out of the hospital...YES, he walked out, no cane.I have been in tears of joy since yesterday afternoon..and today he is walking around here like a rooster strutting his stuff...

You know sometimes we don't get to give good news here, and I had to share this with you all. Yes he still has dementia, that will not change and that is hard on us all here, however what a thrill to have something go right...God bless you all here...and just wanted to share good things do happen for us once in a while here.

I may not be able to get on a lot for a couple of weeks while he is not allowed to carry more then a cup of coffee or twist, and the recovery is so very important because he forgets that he can't do things...I am staying up a lot right now, not much sleep and watching him close because we want him to be careful. Hugs you all..
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Scared, thanks so much for your advice. Even tho my dad had Alz, I lived 300 mi away, had teenagers at home, worked full time and didn't get home enough and throw in the fact that he'd been "off" for two yrs before my mom thought it important enough to tell me. So I wasn't in the position to observe my dad in the early stages. I really hope I'm wrong but I owe it to my husband and to me to find out what's going on. I'm sorry you and your husband have had to and are going through this.
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Dear Allways, in our problems no one can tell you what to do, only you can decide. So I am going to tell my experience and what I did. And remember that this processes are at very long time. So I would recomend to be very cautios and slow.
About 5 years ago, (my wife had 65) I began noticing variations on her conduct, things that she did not explain. First I tought of an adventure, out of her character and age, but not imposible. So I kept to myself observing and began keeping in mind the conduct alterations. Without much comentaries. Only things like: Where were you? Why? winthout insisting, and saw failures in the answers. I wish that would have being the problem! After about a year she changed, she began forgeting small things, messages, etc. And one day she was lost in a Mall, a large one but not enormous. So I decided that we had a diferent problem. Let another year passed and about 3 year ago I told of my suspicions to our GP at the time of a yearly check-up. He weas worried, examined more carefully and ordered a psychological cognitive exam. I made also, so she did not exactly know why. If I was wrong, would beno harm.
Unforunately I was right, and we took a diferent way of seeing life. The dianose was clear, Not the prognose. And I let another 2 years go by, observing very, very carefully everything
A week ago we made another ChUp and came the confirmation, it is Alz.
In comsequence all is changing again, to begin with, I advise in a e-mail all our close friends anf family. The answer has being conmovent, full of frienship, worrieness, and I believe, in love.
Now I will wait the next development. That is in few words my experience.
Best of posible lucks and hugs
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By all means observe, journal and talk to the doctor...but be sure you have your husband's permission or some legal means to talk to the doctor otherwise the doctor can't/won't talk to you. If I had been more observant a year or so ago, I wouldn't be in the fix I'm in. Read all you can on Alzheimer's and other forms of dementia...there are many....research, research, research....it proves you care! This way, too, you can ask pointed questions when you are talking to the doctor instead of being vague. Learning the "lingo" helps. Good luck! I know how much my husband's personality changed about a year ago...if I had known then what I know now, I would have been better prepared and prevented some of the bad things from happening.
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When I joined this thread the other day I wrote that my husband didn't have dementia. But to be honest, I am concerned something is going on with him. I know he has never been tested, he may have never thought it was warranted. I only reconnected with him two yrs ago so I don't know how he acted previously. After reading some other posts, I now am concerned. Lately he has been doing things out of character. I don't know if its his age (63), the severe pain he suffers from arthritis, his meds or what. I'm asking for some advice, if y'all would be so kind. Do you go on full force observing mode, keep a diary of events, bring it to his attention or what? We go to the same GP and im wondering if ethically its ok to discuss it with her. Foremost I want to give him respect and be above board. How do you approach this without offending him or scaring him? Last night I very nicely reminded him that if he ever felt anything was amiss, he needed to share (he's very private) it with me, his partner, because if anything went wrong, I might be the only way he got help (hope that made sense). I can be headstrong and one of those take charge at all costs kind of gal. I don't want to screw this up. Any and all ideas will be greatly appreciated.
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Dear Lyndaholt - try your local area agency on aging and the local mental health association...check to see is there is a group called Senior Choices in your area...they may be able to help you. Don't give up. Help is out there...it's just hard to find sometimes, and I know how time-consuming it can be to jump through the hoops, wander through the maze and get frustrated and tired. In the long run, it will be in YOUR best interest as well as your husband's.
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Good Morning all ! Thanks for the response and suggestions. SWOMBO you are so right controlling your attitude is key as is deciding to be happy. If nothing else it can't hurt.
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I have called the Alzheimers Assn. They aren't much help. I need some sort of day program. Nothing lose. I take him to a memory care program that is good, but it is a 45 minut drive for me. If go to grocery store it's OK, but can't go back home because I spend so much time on road. That is the only way to get hair done or an appointment for my self. Oh and I am responsible for my 99 year old Mother. Thank goodness she is in assisted living and gets excellent care, but I have to do her appointments, meds and financial affairs. I don't know if it is our area but agencies aren't helpful. Thanks for trying to help. Think I'll go cry now because it's time to get him up. :(
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My husband doesn't like to use the cane we have because it's adjustable in height and it "clicks" sometimes when he puts it down...he is SO vain! I just smile and tell him we'll look for another one....one of the few lighter moments in the struggle.
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You are very right into the: "to give my husband space and dignity and not hover or be too protective" That is one of may priorities. Even if frequently I feel like exploding and held myself of doing things. I force myself to stay put and wait.
I am not surte if carpeting is a good idea, in my cse I woudn´t do it. (now it is done, so...) I feel myself more surefeet in surfaces like wood (or sinthethics like) but of course you know bewtter your situation. About the cane perhaps you ca mencionate that is elegant, I would suggest to choose a nice one, not one of those horrendous orthopedics ones.
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Lyndaholt, I'm not to point yet where I've had to reach out for assistance but sure the day is coming soon. Please stay on AC because there is help here. Other caregivers can guide guide you. All of us can offer moral support at the very least. My heart goes out to you. Do you have family or friends to help? You won't be able to go thru this alone and I'm surprised you've handled all this and you're still sane. Scared offers sound advice, don't give up.
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Dear Lyndaholt, call the Alzheimer's Assoc and your local area agency on aging. They will have resources and guidance to help you. My husband also has both of these diseases (at least that is the current diagnosis; going through lots of testing right now to be sure...hallucinations are associated with a different type of dementia, but he could have both)...Call today! There is help out there. If your husband is a vet, call the VA. They also have resources available. Don't take this lying down! Go out there and fight for what you need/deserve. There are thousands of people getting help who never paid a dime in taxes/SS/Medicare...we who have been paying all our lives deserve the benefits, too!
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My husband has Parkinson's and dementia. He has had Parkinson's for 12 yesars and the dementia has become worse the past two years. Cannot be left alone, has "punding" behaviors, (going through drawers, closets, etc. continuallly). I have to constantly know where he is and what he is doing. He can become agressive if he wants to do something and I try to stop him. He does have some mild self-mutilating behaviors and hallucinations. I wish I could put him in a nursing home at times, but we don't have long term care insurance. After all our money is spent on nursing home, what am I supposed to live on. I am 70 and am too old to live in a box under an overpass. I consulted a lawyer that was supposed to specialize in elder law, but he wasn't much help. Said that I could keep house and car. That doesn't help pay daily living expense like insurance, taxes, my meds and food. I cry every day because I am so scared of the future.
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Always...wow! You are to be commended...knowingly taking on this kind of responsibility is unbelievable! You are fortunate to have the love of your life with you.
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Gonzalez38, thanks for the warm welcome. I am sure I will have questions and comments (but I will skip the cursing, thanks :-)). This is a new experience for me and I have to determine how to give my husband space and dignity and not hover or be too protective.
Thank you for sharing your experiences with polio. I will check hubby's shoes. Yes, a cane is a good idea, just don't know if he'd be receptive yet. Since the last fall, we sold the house, moved out to the country and the house is fully carpeted. He has fallen a few times but no injuries.
It comforting to know I'm not alone and I appreciate the opportunity to learn and share.
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This site is such a great support for anyone who checks into it. We learn from each other. If anyone has suggestions we will be glad to read them. I read somewhere the government is changing where Alzheimers patients can stay for care paid by Medicaid. It is still being argued in Wash DC. as of this year. Keep your eyes open and write your state senators,federal congressman etc if you do not agree. God Bless We need all the help we can get.
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Dear Always, I am sure that what I am writting is something usual for you, but still... To me, the most important and trascendental aspect of this page, is the posibility of venting and telling aloud, (even cursing I woudnt mind) of problems that may be are not mentioned outside. Use it as much as you feel useful.
On another aspect: I had polio as a baby, living my whole life with weekness in my left leg. And once in a while I fall, in my case I don´t have weakness, so never had being more than lacerations and some pain. But because of it, I am very careful of the shoes, not special, but well made in the base. Also at some times or circunstances I use a cane, I have some (Having various is for vanity, but all of them are useful and adequate) I am particularly careful in marble, or polished stone, rain and stairs.
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