Strong & Steadfast 05.15.24 Parkinson’s support Group

about we used to have about 12 130 followers on Facebook live and this first time actually see me in all right they're seeing you right now okay um we're going to wait for Kathy to come in all right and um but I want to thank everybody for coming out tonight and I sure y'all I will be calling girl tomorrow at him uh if he's watching this I'm we're coming but um I want to thank everybody coming out to the strongest Dead Fast par support group I just wanted I wanted to take a second or two one to um get Pastor mat to open with prayer always open with prayer and I think we should be really I'm I'm really thankful that I could be here tonight um with everything going on a lot of people did not know um I lost my son the 22nd of April and um I was in um rehab and um this young lady right here was um we have a lot in common easy really easy to talk to her um but um it taught me a lot about the spouses and the C Partners I never like to ter I like ter partners that what they do for all of us don't have a spouse and I don't have a partner I have two children Nicholas Victoria come here for a minute one on one side one on the other side said I don't have a spouse she always take you around like that but God blessed me with the two youngest that are really just wonderful just outstanding this one is too overly protective and just ran out the doors but on a serious note I really just wanted to say especially that um what the spouses and wives do for the husb is just overwhelming it can be difficult it can but we appreciate and I invited eony my friend here to actually speak on just what y'all do is pure love out of love is um I promise I wasn't going to cry but what y'all do is is you're the foundation you're the support you're the drill instructor and if you ever just you probably have one of those oldfashioned rolling pin you know hidden up behind the bed just kind of just kind of cuz I know sometime Victoria feels and nichas feels that way but you know what they they're always there for me and one of the things about this group is I always said and I missed y'all last month [Music] with family just feels so good to be back amongst family and friends and um I'm going be making some phone calls fuss Ming people tomorrow I did not make it tonight but now they probably had a good reason but um what what happened to me taught me a lesson and I said I was only going to take five minutes so I'm not going to skip wrong I'm going turn it over to Pastor M but Kathy was talking about when Leroy to his tendance in his foot and this young man is very active guarding and bending and lifting and moving and and me we're going to take a different look at the park support group we always have great speakers but with Lisa help moving forward when the meeting starts if George and Victoria want to go back there and test my speech there will always be a laptop back there Dirk want to Eng Gil one y'all want to the laptop will be back there in the corner and you can actually test your husband's speech instead of going I did not understand the words you said I thought you wanted chicken you got steak I am so sorry no I'm kidding I'm trying too but but on a serious note this really scared me because only one person of everybody physical therapist and occupational therapist my own PC and I just ask one question could this attendant killes this thick could have been tight and ready to snap at a moment and there one person said yes because of the par Shadow so we're going to be really I'm going to be they're saying November December I can yeah it's going to be it's O Odell Beckham Jr one of the wide receivers for the New York Giants when he Tau his he was out for a year and a half uh he has bettery and better trainers than I do but um so we figure next football season you'll be playing for the Giants I I hope so but uh I but no um I just wanted to say I've missed y'all coming to here I actually this is only we're in the fifth six fifth month yes and I've only been I've only made two meetings this year and if anybody would have asked me what kind of ship you're in George I probably would have said all right good but no not so all I want to say to everybody is we're going to be taking a different look we're going to take us guys going to be taking a lot off the wives so many wives always saying George talk to this one and talk to that one so George is going to be talking I'm probably going to make C mad I want y'all's wife to stand behind me with those rolling pins all right on that note yeah that way if you say the wrong thing she can hit you now George before you move someplace with with everything that's been going you guys can sit down if you want or you can stay there if you want oh sure so with everything that's been going on in georg's life not only with this but with his apartment or condo whatever you want to call it and with the family that he mention oh my hot water heater wanted to explode yeah yeah yeah yeah and uh I said are people starting to call you job and I said two things that he's got an advantage over job number one he already knows that his Redeemer liveth amen and he'll see him again on this Earth the second thing is that George doesn't have a wife to tell him to just Curse God and die so I don't know that's good or bad sometimes we need a wife to tell us those things uh I'm I'm happy I'm I'm I'm I'm I'm happy yeah yeah all right well let's pray father I thank you for this gathering for each one who is here because we have something not only to get but something to give father as we contribute to one another and lift each other up thank you Father for our guests who are here tonight and I thank you for George that he can be back with us thank you for for being with each one in Jesus name we pray amen amen I would like to take this time to introduce really special woman strong female um we have a chance to sit down and actually talk about things one of the things that she's com to talk about is care and I'm going turn it over to the floor is yours good evening I see you good evening everyone as he was saying my name is eony Henderson I am direct of nursing at Patriots colony in Williamsburg Virginia which is a part of Riverside Health System and I'm going tell you a little bit about that in a minute um but before I get started I really wrestled on what to talk about when Mr bosan um was bragging about this group he thinks very highly of you all I had no clue um that Parkinson advocacy was so big right so he taught me a lot um so in listening you know it started out as me why you come by the the group sometime I'm like yeah check it out so it went from that to oh I'll put you down as a guest speaker and I was like oh God okay well sure you know I don't know much about I'm a nurse but I'm not a Parkinson specialist so I thought about what I could talk about and the first thing that came to mind I was saying caregiver he taught me to say care partner um so I thought that was a good place for me being a nurse in the setting that I work in to come talk about so in doing that I came across a quote that I want to open with and I'm going to replace the word caregiver with care partner okay this is a quote from rosn Carter and it says there are only four kinds of people in the world those who have been Care Partners those who are currently Care Partners and those who will be Care Partners and those who will need a care partner um so what that told me at some point in life you will experience care partner where whether it's through you or you receiving it from someone else so I just wanted to kind of open with that um as a thought so my hats off to the Care Partners the spouses um and what you do every day because it is a selfless act that you're doing on the contrary I commend those living with Parkinson's because that's not an easy task as well so I commend you on your drive and your perseverance through living with Parkinsons um so with that being said I am um e I'm director of nursing I am a registered nurse um I've been nursing for about 25 years give or take um in the Life long Health sector um Patriots colony is a Continuum care Retirement Community in Williamsburg under Riverside Health System we have all levels of Care on our campus um independent residents and then we have a health care center where we have a rehab um a long-term care facility assistant living and a Memory Care um and I bring that up because a lot of times the community um and Care Partners might not always know resources they have um and not here just to advocate for my facility but just facili in general because as you're functioning as a care partner you have to remember self-care as well that's very important because if you as the care partner break down now we got to find one for both of you right um so I always like to Advocate don't leave yourself out um so with that being said you know and let me go back to the Parkinson uh residents and and members here um keep in mind I know Mr Bowman is an advocate on doing things that is that's going to boost your quality of life um and that comes through Lifestyle Changes stress reduction exercise and things like that um because as he was saying he's very active and yet he sustained the injury he probably never would have thought he would sustain but because of his activity I'm sure he's been able to thrive and recover um more more productively than someone that is not as active so use him as an example uh for those lifestyle changes as well so with that being said I also brought some materials and one of the things I wanted to just point out a lot of people are not interested in like a long-term care setting or going to a nursing home so I wanted to shed light on something called resit um respit care is a care like intermediate I call it uh where you just need a little break you might have to go out of town and handle some things um or some self-care and this can be days or weeks or even months a lot of facilities offer that type of care as well um where they it's almost like an adult day type of extended state right so I'd like to share light on on those type of things so I did bring some um folders with some information on different Services um but Mr bosan was with us for rehab in our section um for Rehab we have physical occupational and speech therapy big rehab team with actual therapists and technicians there um where you get therapy five days a week twice a day um so it's a pretty intensive thing so just wanted to open the door shed some light just in case you were unaware of those services and just to let you know yes you have this support group here but there's also Community Support out there as well um for you when you have to have rehab or just need a break um to take care of things or if you have to go out of town um there's rest fit services so you know just to advocate for caregivers because again um it's no easy task I commend you um we support you as a community as an organization under Riverside Health System do anyone questions so far yes no you can't ask about um so what kind of level of care when it comes to the PT and OT is it is it based on a person it is based on a person so what happens when you have to go into that type of setting the therapist will come and do an evaluation they will discuss with you your prior level of function and your goals off of that so they do a Hands-On assessment to see where you are functionally and then they formulate a program to help you um the Care Partners are involved in that as well because they can help navigate okay this is what here or she was doing prior this is where I would like them to try to get to and they will it's like boot camp they will push you to reach your goal right because if we allow residents to give up easy they won't have the success that's desired right to go back to their prior levels of care so I will tell you it's not always easy but sometimes good things don't always come easy you have to push and be motivated um to to be successful in those areas but I question so say I feel like I'm getting weaker and going down is it possible for me to go through my PCP and say look I heard about this rehab facility I wouldn't want to get into it is that possible so that's where little red tape is right so you normally to get to My Level facility typically you've been in the hospital you don't just usually come from home to rehab and that's simply because of the insurances how they work right you have to go through getting cleared like just for any other medical uh service um but sometimes your doctor can refer you for home health and through Home Health Services they offer therapy the only difference with Home Health Therapy Services is is not as intensive this is a therapist that's coming out to your home a couple times a week maybe 30 minutes at a time right versus being in a facility is five days a week twice a day right so that is the big difference so typically to get to my level of care or impatient rehab usually you have stayed in the hospital so that is a little bit different so whites hit them put in hospital he said it not me he said it not me but um there's usually more more than one way to accomplish your goal you don't always have to go through that setting again you can go through Home Health um they offer out patient services um and in one of these pamphlets because we have a variety of re resources through our um we call it the lifelong Health division they have um resources that help you be successful in your home whether you need home health therapy things like that so there are multiple resources there within our division that help navigate those things for you um yes I'm trying to think of so we have just to name a few of our lifelong rehab facilities we do have one in Williamsburg Smithfield Newport News Matthews Saluda which is in Gloucester and Sanders which is in Gloucester um so we have it's not just rehabs we have Home Health Services we have Hospice Services we have choose home that's the service where um Care Partners seek their assistance in getting everything and resources in the home um um to be successful there um they have adult day Services uh we have the Martha Goodson Center that helps with um cognitively impaired residents um So within the lifelong Health division we have a number of resources that you know a lot of people may not know about and can take advantage of and usually if it's a resource or something you need we don't offer somebody in that sector can direct you in the right direction to get the help that you need now I just want to stop and just say this the intense level that his name is Chris he look like Captain America like Captain America he worked me like he beat me up like but the level of rehab that Mike and Chris put me through um I have to say that I mean I could go like this and not feel muscle tone but they taught me to lift 186 pounds so they taught me to leg to support because when I had the cat on and I'm just going to say this try go to the bathroom keeping one leg up in the air it is totally impossible almost kill me I'm just going to say and you got to keep it up the whole time and the cast is kind of Weir you but they work with me to a point and a level that when my brother called he said George like and I said went off the track practice football practice basic training he said yeah I said put all that together and and and that's what it's like here and he goes good and I said no excellent the level of intensity was just beautiful and not just two hour was working withart picture okay you know what you're talking about but this whole department I put in for what ride calls the champion here because the way they worked with everybody nobody the whole the whole P everybody there loves their job on a level that you don't see it was so beautiful no you're fine let me tell you about Mr Boseman I told him if he stayed any longer we were going to have to put him on payroll he is something else one night my staff told me you know Mr bosan called a staff meeting he called up and had all my staff gathered having a whole staff meeting so he is he's definitely you have someone in your corner that he's not going to let you give up easy you know so we we enjoyed having him but yes he he called a whole staff meeting um but yes care G care Partners I can't stress enough though um to remember you know you're doing a great job you know I don't know you all but through Mr bosan I feel like I do because he talked about this group he is so passionate about what this group is doing and and the purpose of it it sparked my interest um hence why I'm here today so he really thanks a lot of you all um talked about you every day and he's really he he cares a great deal about those living with Parkinson but he also shows great concern about the Care Partners and that and that was the big act just come talk to the Care Partners you know because your your role is is so important but my big plea is don't forget your yourselves in the midst I tell my my families all the time of my residents you know it's a big task that you have but don't forget yourself you know and celebrate the Gams celebrate games that's that's important as well any questions at all I didn't really talk about our campus I mean I can take another 30 minutes and talk about the campus um but I I will add a little thing about um Patriots uh if you're unfamiliar with us we are a gated community in Williamsburg that I think I mentioned we service all levels of care and what makes us a little unique our independent residents there are all retired military or civil service and the idea of what they call a CCRC or Contin care retirement community such as ours is Aging in place so our campus is designed that when our residents come in and move in our campus they know and have the security that if their functional mobility level changes if their medical status changes or their cognitive status changes they can migrate around the campus in different levels of care without leaving their community and their friends and their spouse for example if there's an independent resident living on campus just so happen Falls and fractures the hip and need rehab they can come down the hall or across the street to the rehab where Mr Boseman was their spouse can get to them easy their friends can check on them and they're still within their Network and their community so there's a little security Factor there um that as I age I'm still going to be within my community so that is kind of the idea so a lot of our residents that come through they actually live on the campus or their spouses live on the campus and you know they do their rehab they go back to their prior level of care I I tried to put my money down but they were in the other day so it's it's a it's a very nice C but I just wanted to shed a little bit more insight on on our cus now on that note a couple yall have seen the email and Pat is starting up support group yes and me and pastor Matt has already said that we're going to help them and I'm not looking for and they have twice a month we had once a month I think it's the second Thursday second four Thursday of every month but don't quot me on that I know the next meeting is the 23rd and we're going to go there and talk to them about I think what when Lisa came here Lisa made a comment and the comment was most of the group she spoke to That Fun Fun out talking engage group that she been around a long time not those words to it um but the point I'm getting to is yes I figh forers cars Bill House Bill 1142 is still out there and going strong and we're going to Res submitted but also more groups um there was so many not many but there was a few resents that pass that Hades and one nurse walked up to me and she said I always see you do like this what are you doing I'm like one of the most important muscles we have to keep loose is the muscles behind our shoulder blades so I'm always and she goes the J there has prop and he's loed what can we do and I was like not doctor but when he eles make sure he constantly Works those muscles um just doing this just moving just working your fingers this was totally unforeseen I'm so thankful Man by the name of Chris look at me in the face and said it was going to tear regardless I could have worked it I could have worked it I could have worked it because of theend really easy and I'm not going to lose another family member I'm not going to lose another family member between strongest deast Riverside par supp group p well with that being said before he had me emotional up here um and just I'm going leave you with one last quote just from one care partner to a group of Care Partners and it's aot am Maya Angelo that I really like and it says I've learned that people will forget what you said people will forget what you did but people will never forget how you made them feel so being in a world um of care giving care partnership um because it is a partnership um that's that's one thing to always keep in mind is how you make someone feel you know jokingly tell people life is lifing all the time um but you control you in the choices that you make the drive that you have um and the way you treat people and that's you know our mission statement at Riverside you know we try to treat people um as we would want to be treated you know so if you have any questions again I B some reading material um on lifelong health and Patriots Colony both have a little bit of the similar information but I be happy to leave those packet with you and thank you for inviting me Mr bman and I it's my pleasure to um yeah actually we was talking and I went and wrote in her office and said oh guess what you're speaker was uh okay what do you want me to talk about and I'm like room just kind of but um I did talk about every day every one and is in soble soble the state yes I have and doesn't have I in this room every and I only ask you every morning look Mir and say but me I'm going to beat this I'm going to beat it I I would next guer everybody knows came here in Mar um this has been really tough on me to the point I've actually realized I have serious gaps in my memory and I just found out that's of not just the shortterm memory Bute gaps in the longterm memory but Mar of this year to come and speak about speech and swall and she did a great job left a lot of questions on the table [Music] [Music] so what questions do you guys have for me you had enough time to like marinade and think about things like what are you noticing in terms of speech what are you noticing in terms of swallow what are you noticing in terms of memory thinking concentration cognitive functioning appointments remembering um got work you and both man you one of the things that and eony and Chris did for me and it's really worked out beautifully is they programmed my phone when I'm supposed to take my medicin my phone alerts me when it's time for to take so a thing like this that our sun body oh watch well it's not nice wonderful eff really it let you know the choice is though once you turn it off is that if you don't do it soon might be gone for a while you could be doing something like I'm washing dishes I'm not take that hour later take medication so that and your phone could be the same way it let you know it's time but if you're not ready to do it almost like a snooze yeah I can dismiss it but if you con minutes it remind me remind me and I was worried because believe it or not I went a whole day a whole day and realized that when I got in bed and couldn't sleep cuz one pill I take I'm like why can't I sleep so again not just the facility but the staff and Administration staff to for me to roll in office like look I'm a little worried about my meds so I came up with this idea I need y's help and it wasn't the L thing about back hour were like okay sat down and on the laptop and was like and chis took my phone I was like I not go with and I was like K said it when he said it he said it not just for this whole year but next year in 2025 but if a medicine drops off I can actually just delete that medicine and a new one one and I put my doctor's appointments in so it actually worked out great now I'm proba going to start with the most questions because okay laugh so I met a young lady at and come find out that we met around 2011 2012 and we was friends and together for almost three and a half years I remember the face of this young lady knew my children my Go's allergies my son's favorite food my favorite foods and I'm sitting there and she goes George wait a minute you really don't remember and I was a sentence and L I know the short term was off but just and we we talk every about three four times a day and I really I really feel again about sports there is no way physically possible to tear your ailles tend and walk on it for8 days in driving and drive yourself to the doctor's office in the point the surgeon says please do not drive yourself to your own surgery but the whole plan with Riverside was okay they saw all my doctors saw look scenario dominant side of your body weak side of the body you're going to have zero balance and the zero balance I'm trying to comprehend what is you talking about zero balance until I saw the cast and I tra in this this F feels like a brick because of the part everything is muscles are locked right now so when they said zero balance but my question is I didn't know extent of the memory loss until I ran across this young lady and she's telling me St she's in detail and I'm like wait a minute and then this past weekend we was talking about jury and I was like yeah I think I had an account at jar Jus and she George you bought me two things from jar wait a minute she said you literally don't remember so Lisa I'm like really like because I knew par affected the short term but to take gaps out of years just Bible sometimes it's it's the idea of if you don't use it you lose it type of thing it's information that's in there that might not have been put back in the folder if you want to think about it that way or might not have been um engaged in a while you know it's if you haven't quoted out in a while your brain might have been like we're just going to put this on the back somewhere like I don't need this right now we got bigger fish to fry balance movement um so it could be something as simple as that um I like to give the example of the brain as like a big road map and stop me if I told guys but it's it's like a massive roadway and we travel the same roadway most of the time you know the roads we're comfortable with we're on all the time but if something happens to that roadway and we don't have another way to get to that information it becomes really difficult you know if there isn't a side street if there isn't another way to get there it can be really difficult um I was having a conversation with somebody regarding me Nam and we were talking about labeling people's names it's like oh well that's Joy that's Sunny you know they're all friends my age I'm like okay do you have any other labels for them no they're just they're just people I know from my neighborhood okay your neighborhood that's another label any other labels for them well we all go to wine and cheese night okay there's another label because the more labels and roadways and ways to get to them then all of a sudden it becomes oh who's that lady that oh her name starts with a J she's from wine and cheese Night Joy oh yeah that's right she does live in the neighborhood so you're not stuck on just that one way of getting to it you've got all these different options to get to it so think of it like a spider diagram so say you've got the word dog okay put the word dog in your diagram what are some things that you can describe a dog how how can you describe a dog anybody anything loyal loving what did you say fluffy cute yeah I love it tot totally not how are cute and fluffy they could bark what other things would you call a dog or what what other things could you label a dog ramb rames loyal he bites he bites bites yeah so you got your spunky ones and you got your your loyal and fluffy ones what about like neighbors dogs or things you find in the neighborhood or things that you find at the animal shelter or not a cat or um you can find them on a farm probably you can find them probably not at an exotic Zoo so think of all those other ways that you could think of just a simple simple thing of dog you know so all those other different things in your life if you said relationships friendships sit down and think okay how else are they related in my life how how else if I can't think of that one word how how else can I describe it um so description is one of the strategies that we use a lot when it comes to for memory recall we talk about you can't think of the word great describe it for me a lot of people go why you don't need to hear that no please please go ahead so for if you can't think of the word dog it becomes that fluffy thing that I have as a pet that's super loyal and sometimes stinks and children yeah exactly it's like okay you need more because people might say children they might say cat you know it's like how do we narrow it down more for you like how do we how do we get it more chances are you're gonna get to it then you're GNA come up with oh dog got it here we go but getting there you're you and your care partner is actually kind of helping you get to that get to that situation or your conversation partner could kind of support you in that the other thing that I like to say is we don't want our brains to build a wall so when it comes to memory if you're sitting there going I can't think of that thing what is it I don't know and you have that feeling of like that wall being built in front of you and you're like it's further and further away like I can't think the word I'm not going to get there I'm just going to give up on it that's the last thing we want because a it doesn't feel good like doesn't feel good at all and B you know the more we kind kind of like subject ourselves to that like oh well I can't do it the more we're going to start to believe that we can't get those words so the idea of that forward momentum like we're going forward all the time so describing it talking about it um having your communication partner help you get there um when it comes to those memories it's like hey can you help me I think it was a couple years ago you know kind of digging more into it and keeping go keep going with it the more we can do that the faster you're going to get to that word or that phrase or that memory versus just trying to think of that one that one word or that one description yes it might be the best word in the entire world and you're probably going to get there you just got to work around it and through it first um so perfect sense is kind of fun like that where it can affect um a lot of our our memory our thinking our concentration our cognition but it doesn't stop us so all those being said it also affect sleep oh yeah really oh yeah yeah oh yeah very much so yes um I had a question I don't know if you guys my wife and I was talking the other night and u I have a swallowing long time that's [Music] associated I wasek yeah okay and I I got to see yep the good old like x-ray he was also and Y and also it affected my my speaking you I had DBS surgy ever since I had the second DBS I had it's help my walk right because that was my main issue right right and that's a huge quality it's almost yeah yeah because it helped like he said it helped all those other sers tremendously but the program that he's on it makes his speech yep very common so we just got to work around it see there is not it's going it's not going back [Music] iink lot drink a lot to really do a hard SWOT drink something do hard after you get stff like up in here like little I mean I'm I'm a firm believer and it's probably going to sound funny but my is trying to kill me stuck up in here and trying to like down and they just stay there and finally like like saying I'm drinking like so it fills me up and I don't eat that much yeah I think that's one Reas why I was 139 139 lb W and I think that's just too small yeah that's too small and I out riding by he's always been J which is good Wow since he's had Parkinson his weight has gone down a lot yeah yeah but it seems like he started losing weight more when he started having the difficulty swallowing so you know you try to fix foods that are sof M you know and even when we have Sal I took a pair of I'm just trying to cut it up St you know yeah yep um have okay so the concept of filling up with water is is very interesting that's very common actually um so if you go to take that swallow I think that concept of doing that real hard swallow when you swallow is going to help you out because it should take you less swallows or less sips of water to clear what's in there um another idea is using um something a little thicker like an inshore or something like that sometimes that can kind of grip whatever is hanging out there a little easier heavier and some other things too great I was just I said think maybe we need to get you more protein yeah because that it's just too small it's too small yeah think about think about those like protein Rich healthy yeah protein shakes protein yeah protein shakes are great and they're easy to there's so many of them now too like I'm sure you can speak on this one like hey we got a nurse here a lot of recipes um many smoothies that you can add supplemental protein to peanut butter you know those resources as well so you can definitely okay it's an array of recipes you can do right at on the Flor now if anybody remembers I'm allergic to potassium I'm allergic to tree nuts nsgic to Mercury and I Leto all the food Seafood so my problem that I'm finding is between water cranberry juice like take milk mhm that's all I can drink now okay but I do the heart swallow and um I can't think of her name but she works there Stacy no came and wanted to see me swallow and she even pulled up some old x-rays and she was like that little lip FL it's not going back there no M doesn't move oh it's not moving at it's not moving at all so so the food is actually keeps yours isn't mine even with the heart swall that one B tiny little brain just get then you're trying to cough you I found myself winded right then getting like HED because I'm trying to cough that and then finally you just kind of just sit back and kind of just like keep drinking and keep drinking and keep drinking until finally now I her name Amy said George it doesn't make sense for them to go back in and try to work it so I'm having by myself literally my diet is slowly getting worse and where the potassium comes inure boost no Gator so I'm literally you come up with something that you don't have to know but just em like spin movie or something we have like the things that well you can't do the peanut but and but they protein [Music] Powers Yeah some protein powder a lot of health and [Music] you a support okay what do I do with this on a serious note like said this whole thing was me and when I said in the beginning um I said mind I to it but I'm also trying to others understand me Ed and Chris sat down in my room and I asked them a question and the question was was one of the first symptoms of pares and they thre out answers answers when I gave the answer they was like wow like and then some more questions I think he sat there for like almost an hour just just just just talking about something in 2018 I didn't know what it was all I know I was B and and be able to sit down with someone with and Chris's knowledge of medicine and background everything go there's so much to this disease that I still feel that when it comes to par we're at the bottom of the list y'all I mean because we need to Advocate more um another thing I have is uh I don't know if anybody has nightmares bad nightmares bad started having bad dreams I mean nightmare every night I wake up I wake I wake her up and now this week is y'all we' been able to sleep this week but before I mean I mean you were on it but your dosage was a little less and so he has a little bit of a higher dos and so he's been for the last few nights has been really good but I mean he sounds one time he went downstairs cuz he was trying to so I get some sleep oh my God it woke me up it scared me to death and I don't like for him to keep sleeping through it I don't so I just go ahead and wake him up but it was like somebody was killing me W you know and so uh yeah it's it's it's getting pretty bad so afraid to go asleep you know I wake up understand what you're saying and then sometimes I wake him up and it's like he wants to go and I yeah he's still in it so I go ahead and wake him up question I have I mean like is it dangerous to wake them up or is that what you really need to do well you know they always say that but I do because I want to be stocked in the face I don't want to I want to stop it I want to stop that drain you here's the thing and told Victoria anybody who really knows me in detail because of my training Don't Wake Me Up come Instinct because my instincts can end something really KN or do it with a long [Music] Ian talking because it's not nothing chasing it's like sh it feels to you don't want to go to sleep and you don't want to close your eyes and you find yourself um eony because of my training and everything you have to realize the surgery I think at the time I was still on mg of so I was taking almost 4000 mg of plus kopan the maximum 2 m some other medicines between my son and everything Happening Now who I went six days with 13 hours of sleep when D and gaale came to see me and I think Pastor M was I can't remember I was so out of it yeah you were I little went six days with 13 hours of sleep and then this young lady said I mean I was literally like because it was a training through and the extent and everything my body was fighting the medicine so then they finally came okay we're going to give you something and immediately best 6 hours slept no dreams no nothing woke up [Music] cleared the next night level six but oh those dreams about my friend yeah every night every he has the most awful look on his face I mean the most horrific horing look on his face you know what I'm like I see one night I was going to film but dirt where his feelings on his sleeve and if I was to show him that he's going to B him all day long so I you know what I'm not going to do it because I actually was going to do it just to show it to his doctor but I know how he is I I'm not going to do it the who sees the little I know have flers in my eyes and like passing by and that but I even see Shadows of things even when I'm and I know that's hallucination sounds like there was commercial talking about Park and he was see like a chair but a separate chair but the separate chair wasn't there so I mean either I am going crazy see those those are the ones that really get me the most but like I said I mean Point like last night guess the house was bu but sleeping then cut on shot back so I I put the towel down have the bucket in the chair I stretched my back good for for four hours but I didn't go to sleep until 02 this morning wow I got up at 03 this morning even when Pastor came over to see me like George are you sure you can make it tonight are you sure you just want to home going but then everything and I'm here but sometime I will go weeks without maybe a week without maybe six hours of [Music] sleep it's natural what what medicine he's referencing is m but they went up on his does so far pazam is working that's that's their first doy Choice pazam and then they go to melatonin but he had already tried melatonin before he went to the do was GM everybody a different one of the things that me I think eony and Chris was talking about that 50 people in a room with par and not two people right and all the other medicin you're taking too is what bothers me sometimes is it's like you have to be your own um okay what's the word advocate your own Advocate but also your own person putting it all together right and you know it's exting it is because before dirt got Parkinson's it was always two people coming together to make decisions that if his idea was better I go with him but now I feel like I have to do it all you know and it does get overwhelming I want to make sure that I'm doing the right thing you know so and he gets a little frustrated because D has a lot Pride sometime I think need to let some of it go but you know he's used to when I first met him he was used to taking care of I mean I didn't have to worry about anything Tak care everything I never had to think about anything worry about anything he did it all but when he got po the whole Road reversed you know I mean even now he can't even drive anymore so I have that on me too he's it's still more driving for him cuz he has the dancea you know it's not the Parkinson why he can't drive it's get dancea has his even with his prescription his eyesight it's not crisp even with prescription but it's enough for him to get by he doesn't have much peripheral vision he tried to drive one day last year and ran right into a sign and damaged the front car and like okay that's it you know and since then it's it's it's not it's it's it's not even it's not any better so he can't drive because he can't see so with that you know it's like another thing you know they have to do all the drive and have to do all this and you know it's it's a lot you know and I know a lot of times he feels bad about it and he does try to pick up the slack with some things because he knows that I have to think about everything make all the decisions you know and maybe still can make some decisions some things cognitively you know and I've talked to about it it's like no that's not a good idea you know so well this is why and we probably won't get a chance ton this is why the last 45 minutes of each meeting is where the spouses and Care Partners out the room and guys get together in a little circle and we can talk and y'all can just he the good thing about having all here is they have a [Music] right serious girl have they have tea they have coffee you ladies and everything was already set up here okay does Parkinson affect your hearing okay cuz my husband he has he has a difficult time hearing and it kinds of CA it caus a communication issue because he'll say well I told you such and such but I didn't hear it or I would go and do something he said what I well I didn't hear it or I say d can you do such and such do he didn't hear it and and at first before I got hip to what was really going on I'm like oh my God marus is progressing because he's just you know something's going with the mind but it's actually he can't hear and then today he will say things like we was getting out to go to get something to eat and I walk in and I'm thinking he's behind me I'm like where did he go so I went back out bu he was a little bit back I said why you tell me he said I did tell you but his voice is so low that you don't hear it I said well next time grab me by the arm to get my attention or do something don't just walk away like that I'm like where is he but does that do any good because like Li if I told him once I've told him aund times when you're looking that way and I'm this way I can't hear a word exactly and invariably he looks that way MH that's not Parkinson's that's Mary I was going to say I was which one of you has Parkinson's in that situation yes are any of you listening to the videos of Parkinson voice project from Richardson Texas Samantha marvelous they're wonderful and speak out absolutely doing really well with nice speak program we got what uh what are we not asking that you'd like to tell us about know more about this speak I you do because it really has helped him a lot a sing along afterwards there's a live Zoom sing along and there people all over the country some of all the world they were singing all these songs together and it just is so uplifting and wonderful but the woman who does this Samantha aler is just a delightful person and she they're practicing all these sounds and things that are helpful me she knows that they are oh great yeah yeah so if you don't get to see it at 11 o' in the morning turn it [Music] on so how how you have to have someone you have to subscribe to well yes it's sub but there's no cost they never charge anybody they also send you a workbook that you can work for that we're not doing as well with that as we are with her because I think he's more it's good because it is it really is she's just so inanc and the subjects are so interesting she talks about today she talked yesterday she talked about graduations she talked about Mother's Day she talks about all these things and she's very interesting and it's about a 20 minute thing there 20 minutes doing 11 11:20 you can do it later in the day but find the speech by apologies person will help you to get that on your computer I have it on my laptop and on my now is this something that we can set up here because you mentioned something about t yes um so okay so speak out maron's voice project and lsvt lab those are your two like worlds of therapy right now MH um they actually did a study in 2022 that was a parallel study that um looked at both of them actually had in my back that's really weird was like looking at it this morning um where they actually did a parallel study and showed that both of them were good both of them do great things it just depends on the person what's the second one um lsvt loud loud and then out yeah big and loud and then yeah yeah yeah and a lot of people think that is loud but there actually two different programs so there's the physical program and then there's a speech program so a lot of people have done have said oh I've done lsvt I've done lsvt but they've only done the pH part part of it they haven't done the speech so yeah no that if you do that there's two different ones so um Parkinson's voice project is based in Texas uh I think Dallas Rich what did you call Parkinson's voice project or Parkinson voice project Y and their program is called speak out but you have to have someone to put that you have just subcribe to it in a way however she did so so it's not an app it's a program so it's supposed to happen is you're supposed to go through the training with your speech therapist and then after the four-week training then you can you can have access you have access to the the learning library which is all of the um the weekly they do them five days a week um and there's not only do you have the ones from five days a week but you have the ones from like all the way back so yeah so so you can you can access them anytime they actually recommend that when you do um when you do the Therapy Program itself which unlike loud loud is four times a week for four weeks speak out is two times a week for four weeks so way different way different in like and commitment um and it's just a different mindset so like loud they just want you to think loud Think Loud Think Loud Think Loud it's great for some people believe me I've had some great success with it speak out talks about intentionality they talk about being intentional and the idea is that we are going against the or we're trying to homeone into the intentional um sensory system versus our automatic sensory system so our automatic sensory system is what is affected by Parkinsons so there automatic movements automatic motions everything that's the normal things are affected things you take for granted exactly so when we tap into the intentional system we're able to basically stop Parkinson's symptoms in their tracks and we're able to be strong we're able to be louder with it like it's it's like and and they take it as a full body approach like they they'll say like she'll say like take a sip of water with intention pick up your cup with intention like everything is about intentional movements and intentional you take that breath with intention they always that get access to correct that becomes like the home program that becomes like the lifelong home program so the cool thing about um PBP is that they've um they're completely Grant funded so um but twice a year they do have in June and December yes they do they ask for money they do they do and then and the money pays for um pays for training programs um so like so Riverside outpatient got a grant for four speech therapists for any students we have for the next year and any patients that we have for books materials anything that we want for an entire year um it's $600 a person to get trained in it so just like do the math on that one let alone materials they give you access to every book and printouts and photo card like the stuff that we used to have to spend a lot of time and energy and effort trying to like find and source and like we have access to and you'll have access to too because of us which is just my goling like it's unbelievable so how so how would ler get into this yeah so you have a couple options um You can call me Selfless Love um so you're in Williams I am but I can do tell visit video visits basically yeah we do over zo so would he have to get a order from his doctor to come with you yeah so I need an initial order for the evaluation and treatment and then after that I send the order after the doc saying what we're doing the doc signs off on it we get three months of therapy goes through your insurance all is great and well in the hospital then rival that's awesome that's awesome she's great we got a lot of good ones it's pretty awesome she's she's really good um so that's that's kind of the the process in it um from what I I usually like to see a patient initially in office but I can still do I can still have you like send recordings to get those initial Baseline measures okay but there are people here in Newport News there is one at the M Mo and there will be one down at sh view I don't want I sorry there is one at the big the big hospital um across from Christopher Newport Riverside yep yep there's one person there Kathy she's certified and then there's um where does Ken come fromen because she's home health though she yeah she she's clearly home health so Cathy certified at the M Mo and then Stacy wox is is in the process of she should be that by know um down at sh view so those are those are two options on this side of the L let me ask you a question too concern his speech is pretty good projection and so on but I'm understanding that the same muscles that really control the VOC swall wonderfully for the rest of his life keep doing what you're doing and so you know that's that's more my the incentive from me I can understand so helped him his his um well I don't know if but it's going to keep it like it is same the same mechanism that's used for speech is going to help you give a good Thro clear give a good strong strong heart swallow and help with the coordination what did you want to say abouts me my hearing uhuh is I can hear in my ears loud like I'm talking real loud oh yeah but you don't hear me talking real what speak out [Music] uhhuh yep it's that intention that drive I always talk about like a driven voice like you want to have that like that that push behind your see that's the issue that he he can't get that out he feel like when he's talking Lou think he's holling at but he's not you know but somebody might think he's hollering M you know so so so a good way to do that is to actually like record yourself in conversation together and use the voice that you think is too loud and like quite literally put that microphone right between you two or put the microphone across the room and you both stand at the same place so you kind of have an idea and talk and then listen to it because a lot of the times with Parkinson's it like you hit the nail on the head I always say it's kind of like that knob in your brain that allows you to understand levels gets turned down but they don't tell you it's turned down so it's like it's that like it's little sneaky little Gremlin in your brain turning things down you know it's like so it's turned down so you know if if if this is like normal volume okay you're starting down here and when you get louder or bring up your volume it kind of comes to normal where if I was starting here Lou real obnoxious my patients with hearing a actually turn them down in my office [Music] physical that's why I said and I walk out said that you doing all that we actually both had [Music] Stacy so I'll tell you this I'll tell you this it's very interesting because I like just finished the training for speak out and I've been lsvg L trained for like 10 years 12 years something like that like it's it's like so normal anymore you know they're very parallel but at the same time it's the approach that makes them different so they use an a they use a warmup they use a Glide up and it Glide down they use a lot of those very similar exercises exactly like fundamental exercises but they approach it very differently very differently I've actually had to like check myself and I'm like okay not to like I'm taking notes like crazy cuz I'm like oh don't say that got it they say to say that got it okay I'm like what am I doing who am I I'm starting to think like maybe I need to pick one where yeah [Music] goe I'm sorry it'll come back we were talking about that hearing and you you hearing it differently than what's coming out yes way tested talking to a group Methodist men 20 people and I told I asked how many of yall can hear me [Music] good thing learn to speak out yeah right and you're doing it right now you're using that intentional voice yeah it's tot it's very clear yeah it's the idea of that voice kind of like when you talk about speaking out and for you loud people um it's more of the voice kind of going up and over in carrying through the the audience versus like that because that is loud you know that like ah I'm going to really like push it through push it through where speak out is kind of more like all right I'm GNA use my entire body and I'm gonna send my voice that way I'm gonna make sure my voice carries yeah yeah it's it's it's like a total like brain shift yeah it's it's it's really cool meeting afterwards on thss where you saying just just the best they just sing some of these old songs and they have a little band that's playing yeah super cute you know introduce themselves and it's just air super super cute it's support that's that's exactly it that's exactly it so that the um intentional singers yes love them um that's who we actually based our um on-site choir off of up in Williamsburg so that was kind of our our concept of how do we a create camaraderie because we all need help we all need we all need people we all need people that we want to just like hang out with and be let's just sing some music that's really good and fun and like it's just fun so yeah yeah and when you think about it singing uses the same muscles as speaking so when my patients come in they're like oh know I don't sing I only sing in the shower like great you're a singer now like no I'm like but you're here for speech like you're here for voice therapy you're here for speech like I'm going to do some exercises that are going to feel voicey because it really engages those muscles and get things moving and ging for you so yeah you he you only hear the singer and you your home they everybody like knows what how pool sing exactly it's just fun it's just it's just good times over over those things yeah not everybody comes in at the same time so it's there a good reason everybody's you're good you're totally good um I think you can see the singals without being um I feel like those are on YouTube I think they are um so there's there's some ways there some ways around it yeah they recommend that you've been through the therapy before you kind of start Dowing I YouTube clips and those types of things CU there are a bunch of universities exactly it's kind of like I don't know it's like go to the test for the class that you have you kind of read the cliff notes for it's like yeah you know the information kind of but is it going to be like super beneficial for you to be able to like take and run with probably not you could probably fit until you make it but those those cues aren't there you know we talk about the the fact that when someone's in a therapy session from the moment they start with you you don't let them get away with anything like you're constantly what was that did you feel that intention did you feel that you know try it again with an intentional voice try again speaking out like it is brutal and I actually I'm so bad about it I'm always like it's fine let him talk let them do their thing now correct them and I kid you not I saw one of the webinars that I watched the other day was a bunch of Parkinson's patients saying please don't do that we're here because we want to know we don't know like we don't know and we can't tell when it's wrong so it does not offend us when you tell us I need to speak out more I need to speak out I need to use my intention I need to you know I need to drive my voice you know doesn't hurt our feelings when you use those cues they said it might sting a little bit at first cuz we're like whoa you just yelled at me you just jumped at me but then they realized oh cuz this is what's going to totally change my mind and my body and my just mindset in general so oh and sometimes you show some testimonials from people someone who who speaks and you cannot understand anything and you know two months later it's like oh my goodness that can't be the same person you you're just amazed at it so it's it's I mean I just yeah it's pretty awesome yeah they have a huge always one of the key things that I heard you say in this whole Sho in health care and medical you are being proactive I heard you say why wait for him to have the problem associated with I can be proactive and Empower those muscles and different so it prolongs the quality exactly so that was a good thing because Falls in line with I'm by far not a Parkinson expert but I'm listening and taking it all in and that was one of the takeaways and it falls in line with what you were explaining about being intentional being intentional about actions and movements and things like that which circles back around to what Mr ban is saying almost like your mission statement Parkinson I have parkon parkon doesn't have me so all of that kind of you know as I'm listening intertwines with you're living on purpose with a purpose and being intentional about it um and in tune being proactive if you know certain things are or affects our secondary two parans go ahead and jump ahead of the game and do things like you're doing be active and exercise things that's going to improve your quality and improve those things that may be associated with parans it's all part of that fight so that's that's a good thing that you're thinking ahead do absolutely and that's where I want this group to continue thinking ahead and not waiting for the just to happen anticipate right anticipate and I mean most of us was military and and with any job you you you you're shown a job and how you take that job to the next level and the next level and the next level to become good what you did you pushed yourself well the statement I made before the meeting was we need to push ourselves we really need to I mean you can't slack up we can't we got to keep pushing forward and my some Pi month months from now three months from now I won't see everybody supposed to be here here I want to see this this group stronger is stronger I mean we had talked last year we was going to go to willsboro we was going to walk up this Trail to this big rock and I kept saying in my mind finally I said it to the group so don't laugh I was like what you make it Pastor be behind friend for this one right here but but we really was actually talking about doing this we're not ready we ain't ready to walk down the H half I mean I can't where do George wants to see George in three months from now well I mean like I said I could go like this before going to Chris and Mike beat the crap out of your own good it was it was beautiful I mean they pushed the my body they pushed the park to a totally different level which I mean and I always wanted to do because I knew this side was the weakest side now here's the thing the the weaker side is the stronger side now and now this side is having to catch up which is balancing off which is kind of what you saying why wait to so again God does things for a reason we might not understand it but he does things for a reason so can I ask a totally different question is there any research on how diet affects Parkinson well I can believe that it has to I have never read it well my nutritionist has me on a very high now a typical breakfast for me and they had to double portion me so a typical bre at P colony was probably about four to eight eggs um big piece of meat or hot protein four pieces of toast a bowl of cereal big thing of cranberry juice thing of milk and a thing of water now that's just breakfast but you got to realize something the way they was pushing my body now here's the here's the cool thing about it dinner and lunch was the same same way like I said I mean my roommate didn't get like one sub I had three of the filling with fries and [Music] everything get is they was pushing my body that they needed to give my body extra protein and what my nutritionist said was George lower the starch and raise the protein to give the body more energy now when that energy burns down I can tell because the the trimmers the The Voice the body needs that protein so I found a she went Riverside and all she did was she s me down was like tell me you're Ding and I was just telling them tell them and tell them like okay starch not much protein I'm like okay but I'm like three chicken legs and a th still not enough you still have too much starch on your plate George and and it took a while for me to actually but being there and the way they was feeding me and trust me I went in 186 lb I left there 185b eating like that every day for three three and a half weeks about three weeks but left with more muscle tone and musle mass in my body than anything so I mean just like when we was younger and playing sports or anything else we ate different when we was younger how the gator raade the sports drinks the the the the candy bars for that boost sugar okay it still goes for the partisans partisans need more protein the body needs more protein than starch and it's it works good for me but I can tell when that meal is going down and I really need to get food quick but yeah I mean I don't know I mean I have when I said I have a bunch of doctors my nutrition is we like constantly but there but there's no research that anyone knows of like it's not my wheelhouse like honestly I would talk to nutrition I would talk to your doc and say hey can I talk to a nutritionist you know we're we're trying to figure out the best diet we can have CU that's the totally opposite diet of what he does for diabetes okay so I mean we've found just by trial and error if there's not enough carbs in the meal his blood sugar is going to be high and so you know it's like okay so this works for this somebody's recommending the opposite for something [Music] else it might be one of those where they say you know only only eat I don't know gummy bears and it's like well maybe that works for one person and you know unless you're diabetic and you're this and that no that only help if you know you have low blood sugar and okay great I feel like it right now I found out the day my cholesterol isly high and I've always been a person to work out I've always a matter of fact me and him used to work out together but I have a her disc in my little lumbar that I get a injection for in my upper back I have early stage scoliosis I have early stage degener dis disease my knees I'm just my feet just beginning to get better so I haven't been able to walk I've going to the foot do like okay what am I going to do because I know because they were telling me you need to exercise what am I going to do okay so you chair excise chair you know I tried that in by the second week M so she asked me she said well do you have a bicycle I said I have a bicycle so she said ride your bike but my feet is beginning to feel better so I'm going to try because walking never bothered my back but I couldn't do it because I have issues with my feet so I'm going to start back you know walk there something that helped me I go to a caror and and I have scoliosis in the back and I'm leaning over and she's trying to get me to stand up and one of the things she told me to do was Suck my belly button into my back okay and what I found because when I'm guarding my back can really yeah but if I keep doing that it's it's almost like it shifts everything oh really and it so you suck it in you hold it in for so many seconds yeah until you forget about it and then it's that intentionality okay but when my backs then I thinking okay stand up Su in see what happens and helps it helps okay and um I also find once in a great while I'm actually standing up stream but my body feels weird what I found is my muscles have forgotten how to stand I noce sometimes especially when I'm laying or sitting I'm not straight I'm not it's like I'm like this so now I'm trying to think of okay what can I you okay what can I eat now look at Top This that scared me to death it was 343 that's high your cholesterol yes ma'am and I've never had a problem with my cholesterol ever ever was taked red yeast chice what is it red yeast red yeast okay that's what his doctor prescribed and brought it down some for cholesterol okay well I've got to pick a prescription tomorrow because and I've never been a person been on a lot of medications or whatever and I've never had issu with my blood work but like I said like I I a month ago I went on the base I mean to the base of the gym and I was exercising we were going on a regular when I got home you these spasm start going across the back the top of my back and I said okay well if I mess myself up I'm the only person that drives and can get us around so you know what why go and mess myself up so I haven't been exercising which is not me I haven't even been walking like I've always been a walker all year round I used I would go out there the fort Monro and I in the winter yes ma'am and I was just put layers of clothes ear must had I was and I was never cold because I would layer myself up but I always like walking but this back like I had knee pads on right now I haven't even addressed that problem yet so it's like okay what am I going to do yeah you know so I'm I'm going to start back you know on top of getting this diet right you know and then there are just times when I I had my mom you know she has dementia and you know sometimes you can have so much on you you just get to the point okay I'm tired trying to plan this meal I'm just going to eat whatever is easy whatever is quick and what easy but now yeah it's a lifestyle change it is it's a lifestyle CH happen overnight and really when you you said you know when you have those busy days you just go to whatever's in there but you have to go back to whatever's in there and change change up was there so when you do go to grab whatever's there choice right I try to make like chili and soups that are healthy freeze them and then so more when I say I absolutely am not cooking tonight I pull something out of the freezer and put it in my room and see we'll go and get something somewh and bring it back home restaurant Foods course one of the things that I had Victoria got home because they both work and um I asked Nicholas to boil about Bo about a dozen and a half boil eggs and put them in a refrigerator but then I found if I put it in one of the little Skillets put water and just put it on two it reheats the egg so it's not cold coming out the refrigerator then I do my toast but I can't stand I walk a little bit I'm doing I'm doing about 100 yards my Walker and about 50 yard it has to be on carpet walk you know this thing got