The single advice that ticks me off (and it REALLY ticks me) is when my gait freezes my family starts with chanting, before I can even process the issue, " SAY MARCH, OUT LOUD" They heard the PT or the neuro doc say that at one time or another.. Actually I tried that process several times even changing words. It worked intermittently at best, then stopped. However, one day a woman I had just met, saw what happened & asked if she could give me some advice.. Asking is different,i I said yes: she told me to stop, take 2 or 3 deep breaths & think to myself a simple count. So. just like a metronome when I get feet freeze (FREQUENTLY) i DO AS SHE SAID, ( sorry hand issues tonight), . & mentally count one, two, one, two.. For me it works !
Actually, secondary to that success I altered the process slightly, but set up little rituals for when I have freezing in other parts of my life.
Really delighted that you asked that question. Thank you very much
Thank you to all of you who have shared so bravely, openly, and honestly. Your postings have enlightened me about what my husband is going through but not articulating. Parkinson's Disease requires a huge amount of energy, something that is hard to muster each day, and every day brings new and unexpected challenges. As much as I have been researching and thought I knew from my father's life with Parkinson's, I never realized how consuming living with Parkinson's can be.
I have been thinking my husband was just plain stubborn, refusing suggestions, not doing what he needed to do. That he wasn't confronting his Parkinson's and attacking it aggressively. That he didn't want to even try. I realize now that he simply can't some days, that it is an overwhelming task on a daily basis. His energy is depleted easily, it is difficult to rebuild his stamina. Anxiety robs him of sleep and challenges his decision making about the smallest of things.
Yes, I'm the one who offers those "bits of advice," who asks him to speak more loudly, take longer strides and walk with his hands out of his pockets lest he fall. It exasperates him and frustrates me.
When my husband was first diagnosed I was talking with our eldest son about the increasing challenges we were going to have to face. He wisely told me to think of them as a series of accommodations instead. As I learn more and begin to understand the aspects of Parkinson's that each of you have described, I hope to be better able to make those accommodations which will support him and our life together.
People are largely ignorant about PD. Many say they look ok but inside they are not doing well at all....Ive found that most people at late or mid stage PD really dont "look well"..Ive found that its because most people compare everything to do with PD to Michael J Fox..so if you dont look like him, you must be ok or doing good-Others dont have a clue that its a drug dependent disease when at peak meds yes some of us look-almost-"normal" or healthy. but if you know the disease and look close I can tell a PD suffer even when the meds are on. You cannot* let others dictate how you feel or view your life with PD. When I hear people say things or they say them to me that are flat out wrong-I simply say "no actually thats not how it is" and if they want to know what the truth is I explain it-but most don't like being corrected and move on. Dont concentrate to much on others people knowing what its like because honestly most dont care, I hate to put it that way-but most people other than friends and family , are simply trying to avoid a awkward situation and conversation. so the only things they know to say are these little cliche's that 90% of time are plain false. Ive also seen some people who are honestly offended that people dont know they are sick-they are constantly angry that people tell them they look fine -because they want others to know how miserable they really are. Its like they are somehow afraid people wont believe they are sick if they dont look it. I have to tell you , there are people that wont believe you are sick if you literally turned purple in front of them and had a limb fall off. Others really dont care if you are or not ..so my point it, dont worry about it and dont let it bother you. Until your Dr starts telling you that you aren t sick, that you look good cause you are good-then dont let anyone affect the way you feel about yourself-because I cant stand to hear a person say -"they or you" "Make me feel" this or that..no one "makes " you feel anything you chose to feel any given way.....Look out for yourself and consider others and everything will be fine.....lecture over;)
We were into a discussion with our daughter-in-law recently. Her mother is fighting Huntington's disease and our daughter-in-law could not understand why her mother would not be up for a simple surgical procedure. Our daughter-in-law is young and not as understanding as she could be. My husband and I looked at each other and we suggested that her mom just couldn't handle ONE more thing! I have been there more than once. My thought in regards to the question is this: Before you speak to others about what you think is a good idea for others, ask some questions, try to walk in their shoes and think about what they are going through. Have some mercy and compassion on them.
Blessings to you!
It seems to me that anything I have read here is respectful. Complaints and griping are a reality and we all hit those flat spots. What I find helpful is we can address or voice issues and others have input. I learn from it, either when I vent or try to understand what is going on. Perhaps the person who expressed something about an embarrassment with their PD spouse may have been expressing the embarrassment as the way others are seeing things or that it becomes uneasy at times as to the way others perceive that person and act. It is difficult on both sides to be perfect and both care person and PD person need to understand or get insight from others. We should not have to be afraid to bring issues bothering us to this forum - we are looking for clarity. If embarrassment was an issue maybe that person needed to know ok not to be perfect and ok to suffer some human frailties and to dust yourself off and move forward. That it was not an unkind concern but a need to know each of us sometimes experience human feelings but don't stay there. Important that we can admit and move on from our flaws and not stay mean or self centered. And we are not alone in the range of things that happen and do get selfish on occasion but don't stay there. And ok to voice flaws, doubts so there is good input from others to help enlighten. Isn't that what it is about? As long as they are not mean in that intent to be mean. I see too much meanness in this daily living with abused/abandoned/homeless animals and a bulliness in mean intended humans towards those who can't defend themselves but I haven't seen that on this forum; just a willingness to express and gather information. When I have felt low and all out of gas, help has come from here and has been a great supporter and cheerleader when needed. So kudos to all. Whew, 'nuff said. Thanks to everyone for being here for all of us.