ksmith

I concur with Sue. I can't catch myself. I give in to the fall.. welp.. here I go. lol

I attended the Thursday afternoon service and was surrounded by his family and heard how wonderful he truly was. So many of them came from his daughters, this day was a private service for family but I attended for my work schedule didn't allow for the public service. The stories that were shared only emphasized the man that Steve was. A joker, never in malice, always were the best stories shared and garnered the loudest and full-belly laughs. Listening to his daughters speak of life before and after his stroke you were reminded that life didn't change. I mean , of course, what and how they did changed but they 'were able to make new memories'. That phrase was shared many times throughout the service and just echoed the purpose of "The Stroke Network" to remind all of us that we shouldn't allow stroke define us but we define our own lives. For all who don't know about Steve, his stroke left him quadriplegic and able to speak. Through speech therapy, he was able to speak but barely. His family , his wife Missy, would listen and say what he said. He truly lived the Stroke Network's mission statement and one story that touched me regarding why this site is important. His daughter shared that one day, shortly after his own stroke, someone rang his house with 'a British accent' ( she was 9 then) asking if this was America. She abruptly hung up and this gentleman called back and asked to speak to Mr. Mallory. She explained he was not there and this gentlemen wanted to call to thank Steve for he communicated with his gentleman after this " Chap", as she said, to thank him for after the chap's stroke , Steve talked him out of committing suicide. This was a common story that was shared between family and friends was how Steve and when Missy, his wife, met in 10th grade of High school . She shared a story of when he was learning how to communicate she would have to hold a 'sigh word board' and she would have to follow his eyes to form the words to speak. The bottom line was he truly devoted his life and love for helping others. His legacy will always be felt in the website and the ' Silver Wolf' will be he heard every time a person is given support and compassion for I can say personally, he helped me , in chats, to get me out of a bad place after my stroke because when you look at me don't think stroke and having to explain it and accept my truth. A gentleman who was not able to do a lot did the greatest gift to the world. His daughter said, " My daddy said he could lift the world and I truly believe he did."

OK I see this two fold, hear me out.. 1) I will always defer to my abusive relationship for it reminds me of that.. guilting you to stay for dominance 2) Damage to specific parts of the brain can cause what you are complaining about the things that he is experiencing ( HERE ) that being said, I DO NOT think because he has damage that justifies what has been happening and agree for your own mental health leaving is the right thing to do!! I do think that having a serious conversation with either his family or with your local office for disabilities , normally in a shared department with the department of aging ( but check with either your county or state offices) and share your concerns and let them know you can't deal with it anymore. You do have the legal right to say you can't do it and have no guilt for your health is just as important as his.

Does he have family that you could contact and inform them that he is going to require someone to be with him in the near future?

That is a great idea Heather. One thing that the Doctor told me was it matters about keeping my feet warm but also dress like I'm in the artic. That is for even though your feet are warm and if you're wearing a short sleeve shirt despite socks and all, your body will still register for being cold. And why was this year worse than others? No answer for it happens more in middle age women and COULD be hormones or because the sky is blue. I was assured that in warmer weather it normally gets batter, which it does, but I still have to be careful. The 'blistering' on those toes are due to the constriction of the Capillaries so they are breaking down.. SLOWLY but still . So I am bundling up, which I hate to be hot and am still taking the medicine. If those don't slow down the occurrences, the doctor recommended a Nitroglycerin cream to rub on them but other than that, there isn't much that can be done for it due to the drug interactions with other medicines.

I am so happy for you. It's the little things that most people forget to appreciate for they make up a big accomplishment like what you did.

I'll let her know. She truly is a lovely person. Ironically, I haven't seen her since Dennis's service 😞

The Stroke Network will continue to provide a place for those who seek to understand , to help educate and to offer support to all of those who have been affected by stroke. With Steve’s passing, as unfathomable as that is, we are reminded of the love and compassion that went into the creation of this website , which include the message board , chat groups and library. That all came from his heart to help others who have been affected by stroke. We know that life doesn’t often end with having the stroke but continues with the friendships and the knowledge to better navigate life. if anybody would like to pass along their condolences, you can let me know or you can write something out and send it to me and I’ll print everything out and I’ll bring it with me on Thursday thank you 🙏 for those who do not know, Steve’s wife’s name is Melissa but she also goes by Missy

Welcome to the website. I understand having vertigo, balance issues and falling. The one thing that I always recommend to people and I know your stroke was 10 years ago is to get your eyes checked. Most people think that vertigo has to do with your ears , and for most, Yes it does but also if your eyes are even a fraction off or have the slightest nystagmus ( eye bouncing Nystagmus) in it can cause your balance to be horrible . I have two issues : I have vertigo caused by my eyes, were off they were miss aligned and I’ve had surgery to align them but I still have nystagmus in both eyes. It’s worse on my right eye so I wear a contact that occludes the sight from that eye. I can still see out of it but without the contact I see everything double and it jumps up and down so my left eye is the primary. From the same stroke I had damage to my brain stem and my cerebellum. And as you know having damage to those vital organs which is the primary source of your balance and coordination functions . I did therapy, as well, but it did not help me because the damage that was done in my cerebellum ,which controls the balance, I was told that the damage to it means that I may or may not ever get that back. That’s not news that anybody wants to hear but that was the news I was told 12 years ago. I still have that problem. But every stroke is different and I’m not saying, as you found out in 10 years, it doesn’t get better but it becomes more manageable ,at least for me it did .Not by a lot but I can deal with a little bit better. My ears have been checked and they’re fine. I had people looking at my eyes for a long time but no one noticed that they were just slightly off ( other than when I needed prisms of course) and just that little bit will do wonders. I wish you great success in your therapy and I hope with your braces that works too because I also have a slight drop foot in my right foot that when I’m tired it drags and I do trip and I stumble. But I fall ,more often than not, by just standing. I’ll lose my balance and I cannot stop myself. I just have to ‘go with the flow’ as they say and just fall. If I turn too fast or if I get up suddenly and it throws my balance off I will fall into things. And especially when I’m tired you can almost guarantee or fall more than once

The Stroke Network will continue to provide a place for those who seek to understand , to help educate and to offer support to all of those who have been affected by stroke. With Steve’s passing, as unfathomable as that is, we are reminded of the love and compassion that went into the creation of this website , which include the message board , chat groups and library. That all came from his heart to help others who have been affected by stroke. We know that life doesn’t often end with having the stroke but continues with the friendships and the knowledge to better navigate life. if anybody would like to pass along their condolences, you can let me know or you can write something out and send it to me and I’ll print everything out and I’ll bring it with me on Thursday thank you 🙏 for those who do not know, Steve’s wife’s name is Melissa but she also goes by Missy

I have such a heavy heart to have to share with all of you the passing of Steve Mallory yesterday. I am going to talk with his wife Melissa tomorrow and will share the information once I hear. please keep the Mallory family in your prayers and I will share the address once I get it for condolences

May I say that when I left my abusive ex-partner ( many years ago when in Florida) I said I was not sorry for leaving for after a while my love for him was lost after the verbal and physical abuse ,over the course of 7.5 years ,and a son together. It still was hard for I became comfortable with life, despite being hell, and when I finally escaped ( and yes I said that correctly for I waited for him to be at work and my father drove down to get us) I was in counseling for sometime for I blamed myself for things even though I knew it wasn't true and I was willing to go back, at one point, and the words said were imbedded into my brain and still, even after 27 years, I have self doubting thoughts. My point is.. I know it's hard and I'm sorry that you are watching a shift in your partner, not like mine who was just an arse, change into someone you don't recognize anymore. If I may make a suggestion, talking to someone may not be a bad thing. You may not think you need to but i know it helped me x

I wish I had days like that. But overall it’s not that bad. I’ve been dealing with this my entire life as well as members of my family for this is hereditary although within the past year it’s been rather difficult and painful. Your feet must be happy all the time to feel the grass and the earth beneath you. ❤️🌎🦶🏼💚🇦🇺

Willis, I'm so not looking forward to heat hot flashes either

So after talking to my doctor about my Raynaud's and when he looked at my feet, after being in my thermal socks in a faux fur boots, my toes were already blue. So we're kinda thinking it's more stress related. Starting around July, I start wearing sock and slippers inside and warmer socks when temperatures change. We both were perplexed about my toes because , for most people and before it got worse, the pain only came when the blood returns, whether with clothing or in warm water, and that is how it was for me:: Step 1. turns numb and white patches that look like a cadaver foot. Step 2 & 3 blue or purple I'd soak in warm water and then the 'pins and needle' feeling would comes as they warm up.. But now I go from step 1 to 3 ( deep purple) and the two toes are in absolute pain. Pain to touch or anything touching it. The pain in unlike any pain I've felt before. I would run my tub , lukewarm only, and place my feet in there and when the blood and feelings would come back I would have the 'pins ad needle' feelings, much like when your limb was 'sleep' and waking back up. This time, yes I can still do that but just for two toes, one on each foot, are so painful I can't even put into words. Air, water or socks, basically anything touches or even 'thinks' it, is worse then it has ever been. Most people, and I was once one, it was uncomfortable but not extreme pain. This is nuts. I never had an issue ,with pain, nothing more than the usual. My father is mainly in his hands, my aunt is mostly feet and so on back in my family is varies. For Christmas, my mom would get me 'winter socks' that were more cute than what I needed. I tried for years to explain what I needed and until now she , thankfully, saw why I needed the thickest thermal socks available. The problem is when I was married or at my parents house, I was not on the ground floor. Concrete under carpet. So that must explain it right? NO for I've lived here for over 6 years and never had this. Most information you read about Raynaud's talks about cold weather and stress. Cold weather is the biggest trigger and mine but also stress that happens all year and in all weather. It happened in the summer when I was trying to walk in hot sand and I was stressed over that for it was post stroke and unless I have a solid flooring, walking is so difficult. I was trying to walk and not fall and I started to panic.. I lost the feeling in my feet, numb, and I ended up with a 2nd degree blister under my foot. I don't walk on sand anymore for my father is the beach director , where I go, and he drives me ,or a one of his workers , to the location I want to be and I text him and he picks me up. (( I'm very lucky to have such a super dad and I know it... I love him)) We are going to try a low dose of Verapamil ( is compatible with my other medicines) to see if that helps (Taken a night). I don't have high blood pressure and have to have weekly checks with my doctor to monitor my pressures unless I feel to light headed then I am to stop immediately. We are going to try this - and we will go from there. I've crossed checked my medicine with this new one as well as my doctor and pharmacist. There is always a part of my brain that always worried that, 'Will my blood pressure fall so low I won't wake up because I take some strong sleeping medicines at night?' I know my doctor would never allow anything to happen but you know...... fear. So far it's been OK. My feet aren't cold , I've not stopped wearing heavy socks or slippers, and my side effects are mild. Nausea, constipation seem to be the biggest. And I've been experiencing something that I've not had in a long time.. hot flashes. I'm turning the heat down to almost 60° but I always have a sweater, hat, gloves ,blanket and scarf for when the temperature fluctuates . I just hope that my fans will be good for me in the summer or else I will be giving my electric company a bonus. I wish I could have solar but living in an HOA either we ALL agree or nothing.. 😞

I Have been using this everyday. I made plans with my mom to go to a thrift store and within 5 mins I called her back and said;' Do it need it or Do I want it' Thank you for the mantra xxooxx

me too. Cheers Sue ❤️

We all get unknown callers and thankfully our cell phones have caller ID. I haven't had a land line forever. I was paying for a land line and I understand in an emergency that is ideal to have but when I did ALL I got was spam. Back in the 90's and early 00's my family, who lived in another state(s) away, we often sent a fax .. ( remember those) for none of us, family, were into small talk. EVER. So we'll write it all down and say it in a note, If follow up was needed of course we'd call. Now, I say all that as a granddaughter of the sender of most faxes sent.. even my parents, who live down the road, and I talk via text unless I go down there. * they don't just pop up at my door for they never know what kind of day I would be having that day .so they know if I go down there.. it's a good day* Talking on the phone now isn't one of my favorite activities for I can't correctly hear my own speech and , with Aphasia, I can't read a person's face if my talking is off, especially of person's I don't know. There are a small handful of people who I will talk to on the phone outside of family and . you guessed it, most are stroke survivors or my best friend from before the stroke to today who gets me but even though we text when I am having a bad day. BUT.. I started in a new group Home earlier this year and I go into work yesterday morning only to be greeted by my co worker donned in full PPE and my first thought was … How is this going to work with these guys? But yes we have to be in full PPE for a precaution for another co workers daughter was tested positive and was at work before she or her daughter knew. I have a new , deeper respect for nurses out there for I saw my two cousins, both nurses , having to do it all day. But I tell you that to tell you this.. So on January 19th I received my first vaccine and was waiting to more to sent and the state to , once again , open up testing for 2nd dose. I was in the grouping of healthcare 1A group but the scarcity of doses caused my appointment to fall around the same day that was open to 65 & older and 18-64 will health issues that would be more likely to contract the virus. I'm not complaining for I think it was a great time for them to be open. ( side bar:: my county was the #1 in Vaccine takers in the state of New Jersey) I had been trying to set up my 2nd dose, 28 days later, for where I had received it wasn't able at that time and by going on the website the state offered had some places available, within 100 miles of me, but they were only giving the 1st dose to people. So today- I'm mopping my kitchen floor and my phone rings and a number with no name on it and more then likely it's a telemarketer so I normally don't answer these but I also thought it could be one of my co workers whose numbers I do not have. Neither.. It was a nurse from the County Health Department and she wanted to set up an appointment for me to get my 2nd dose. She explained to me the state was going to call those who are due for them. And on the 28 day mark. Oh Happy day!!! It's a late Christmas miracle lol

Holy Crow.. I can't even imagine how that feeling was. I'm glad you you will be good, in the end.. I'm glad you are able to help Dan more but golly...be careful. yeesh

holy cow. what a sight to wake up to

thank you for understanding and such great suggestions and I will do them.. much love

You are absolutely correct and I’m so glad that you understood what I was trying to say. That’s another reason why I don’t blog that much for I can’t always correctly convey my thoughts. You also reminded me that I have to listen to what I tell people for sometimes I have similar suggestions but I guess that’s something that I (we) tend not to do. . I have been making a sincere effort to focus on my ‘wants and needs’. I mean it sounds silly but I’m 46, I think lol and never really lived on my own to gain the insights to do what needs happen to be successful . And now, post stroke, I’m lucky if I balance my checkbook within $20. Lol. ( the worst thing is I worked in banking forever...ha ha ha ) My son and family are staying on top of me. You have such wonderful advice . cheers 🙏

So hear me out... I'm not snooty.. promise For the past 12 years, I've been taken care of. meaning, when I had my stroke I was married and my husband ( now ex) was taking care of the monies and life was good . When we got divorced, I moved in with my parents so, again, I wasn't paying the bills. I have money in my savings but I try not to touch it unless REALLY important. I found an "apartment' but went to an association and now a condo right down the road, literately. merely .5 miles ( .8km) so I have them nearby if I need them. My neighbors know I had a stroke and are helpful, when needed. I, thankfully, was able to buy it out right so no mortgage but just HOA fees. My ex husband is union electrician and makes GREAT money. He also is still one of my best friends and he allowed my younger sons SSID, through me, because we have joint custody and he knows what I get a month for social security he gets in about a week and a half. That said ... I really never realized how lucky I was. I don't want to come across as pretentious for I truly am not. It is more like a fresh divorce .... even through I've been divorced for years.. or like finally being on my own.. I hope that makes sense.... I got a letter from Social Security that said , and it's true, in March my son who has been getting the Social Security is going to be 18 so it'll stop. Well of course ... But it was ... not something I thought of. That'll be a loss of $640 a month. OK but you have your SSDI you get.. well yes but I had to get a job so have enough for bills. It's not cheap to live in NJ. My parents have said it's fine to move back in if I need to. Heck, my dad already has plans to transform their den ( which was a garage that he transformed into a 'bedroom' when I left my abusive ex partner in Florida...with our son ..now he is 27 and he and his partner have my grandson in Florida ) So bottom line, my parents rock. So they offered to have me legally rent my place ,to my niece pay the bills and I move back to my parents. And they'd welcome it. I'm just uncomfortable with that for, she is responsible but there is history behind it. Or I can sell my place and I'd get my money back. The more I type this down, the more I sound contradictory but I know, at the end of the day, I'll be OK. My father said give it a year and within that time if I run into financial issues, he can help. They aren't rich but comfortable. He gets his teachers his teachers pension plus Social Security (and mom gets SSI) and because he is over 66, he can make all he wants and he drives the activity school bus to sports games, for the school he worked for, and during the summer he is the beach director at the beach in the town I grew up in and makes more then I do with SSDI and part of the jobs pay from May-Sept. He would give you the shirt off his back... my entire family, like most of yours, puts family first. I feel horrible to take anything from them because they have always done so much for me and my sister and I want them to just worry about what they are going to watch on TV lol. But that's why family does. I'm lucky to have my family and I know that I cancelled my cable TV and only kept my WiFi but at a less speed. Bundled up more and kept my heat a little cooler than what I would have. I guess the one good thing about my surgery I can't really eat food. I;m not going to not eat but less snacking and going out to eat , when my son comes. I can pay my bills every month, which is the most important thing, but putting extra money into savings for taxes is going to be harder and I'm not going to get a lump at the end of the month just scattered so tight. If I took from my savings , I'd be stuck at the end of year with paying tax on it. I've never got anything back and had to owe... guess that is pretty self-explanatory If it sounds like I'm whining... kinda but it's weird to say this but I've never been on my own.. I hope that makes sense. I swear every word I type i sound like spoiled shite. I feel like an a$$hole for even talking about this for I admire , truly admire all the stories I hear about we all do what we have to do. I'm a big girl and I know we must think like we are lotus flower. We grow no matter where we are and least expected. But we grow. I just wanted to write this down. I try not to talk about personal,, like this, often for I know it may sound, pretentious and that is not becoming but I wanted to get it off my chest. I'm good just like the times we are in, situations can change in a moment and that's the way the cookie crumbles

I talked about you today with a new caregiver. I told her that you are , at least to me, a very revered and an inspiration to many folks,both caregivers and survivors. I'm pleased to hear about a new relationship. Please keep us up to date with this. Fondness makes the heart grow fonder ♥️♥️♥️