3.What lessons do Ray and/or Marti share that can inform communities on ways to better support people living with chronic illnesses?

Don’t need title page. Answer each question separately using in text citation, transcript for the video is on the bottom. sources attached too

Now apply this weeks learning materials to address the remaining questions (one at a time) about Ray and Martis experience with diabetes.

Experiential Interview: Marti and Rays Shared Diabetes Experience [Video File, 24:53 minutes]

1. Marti and Ray described some of the financial and lifestyle-related stressors they faced, and the role of family and community members and organizations in helping them cope with, and move beyond, these stressors. What were some of the stressors, and how did they affect their lives? What role did community supports and resources play in helping Ray and/or Marti to adapt? How accessible were these community supports and resources? Were there disconnects between what was available and what Ray and Marti felt would work best for them?

2. Ray and Marti were very effective in dealing with the stressors of Rays diabetes and in fighting for what they needed. Not everyone has sufficient social supports or self-advocacy skills to accomplish this. In what ways can communities support healthy living with diabetes? Consider community-level interventions you have read about in the KU Community Toolkit (Links to an external site.) that might successfully address one or more of the issues we are focusing on this week, e.g. access to diabetes-compliant foods, safe environments for physical activity, financial strains, etc.

3.What lessons do Ray and/or Marti share that can inform communities on ways to better support people living with chronic illnesses?

sources:
Clark, N. M., Lachance, L. L., Doctor, L. J., Gilmore, L., Kelly, C. S., Krieger, J., & … Wilkin, M. (2013). Improvements in health care use associated with community coalitions: Long-term results of the Allies Against Asthma Initiative (Links to an external site.). American Journal Of Public Health, 103(6), 1124-1127. doi:10.2105/AJPH.2012.300983.
Else, L. (2012). Of wealth and health (Links to an external site.). New Scientist, 215(2875), 42.
Haynes-Maslow, L., Parsons, S.E., Wheeler, S.B., & Leone, L.A. (2013). A qualitative study of perceived barriers to fruit and vegetable consumption among low-income populations, North Carolina, 2011 (Links to an external site.). Preventing Chronic Disease, 10, 1-10. Doi:10.5888/pcd10.120206.
KU Work Group for Community Health and Development. (n.d.)The Community Toolbox (Links to an external site.). This is a valuable resource used by many community organizers to promote health and wellness in communities around the United States and in many other nations.
Theis, K. A., & Furner, S.E. (2011). Shut-in? Impact of chronic conditions on community participation restriction among older adults (Links to an external site.). Journal Of Aging Research, 1-10. Doi:10.4061/2011/759158.
Toth, M., Messer, L. C., & Quinlivan, E. B. (2013). Barriers to HIV care for women of color living in the Southeastern US are associated with physical symptoms, social environment, and self-determination (Links to an external site.). AIDS Patient Care & Stds, 27(11), 613-620. Doi:10.1089/apc.2013.0030.
Wenger, E., McDermott, R., & Snyder, W. (2009). Social networks and communities of interest (Links to an external site.).

Transcript:
Annison Dale:We are here today with Marty and Ray. I am Annison Dale from Excelsior college and I also work at the university Almony school social welfare [unclear] and School public ale. Today we are delighted to have Marty and ray with us, to talk about the experience living with diabetes. So to start out ray why don’t you tell us little bit about yourself.
Ray:Well, I am pretty active guy you know, I’ve felt like I was in pretty good shape all my life you know. I started playing basketball when I was kid and I’ve never really stopped. You know, so I felt that I was in good health and when this [indecipherable] came it was a shock. You know what in my community people say he has sugar, but they never said the word diabetes.
So I didn’t connect to, over time I think maybe I did.
But in the beginning I used to hear I know it’s some kind of illness.
So I was at home It was kind of may be eleven-ish in Night I told my wife going I am going to bed and I got up I remember I was walking toward bedroom and all of sudden I just urged, I was twitching, twitching that just couldn’t stop I just kind of like I don’t know I fell out according to her. I don’t remember falling but I had seizure run on by a high sugar in my system and when I woke up I was at the hospital.
Next day I woke up there I was like wow didn’t know Why I was here and that was the beginning of it .
Annison Dale:When was this?
Ray: Umm. January 14th.
Annison Dale: Of this past year?
Ray: Yeah.
Annison Dale: Wow, so this is very new!
Ray:Real new.
Annison Dale:What was it like waking up in the hospital? Not knowing you know kind of what was going on?
Ray: I wasn’t sure umm. Well I just remember being exhausted, tired. I slept a lot, u know and either once in a while nurses will come in say if you but they kind of let me rest you know. over time as I got more alert, other people came and explained to me what was going with me.
Annison Dale:Hmmm. Marty what was it like for you?
Marty:Horrible. Umm he, The first manifestation was [indecipherable] that I pretty much knew the said the previous day he has gone to the bathroom gone to the bathroom, so we have going to have to show you to the doctor, then he went work and he used to work lot of work overtime a lot, and he came back and said I don’t feel right and he never complains about.
You know men!
So I said what is wrong?
He says I feel confused. Ok we go ER. We ended up going to the ER three times. Okay! They basically told us he had diabetes and all that stuff but if I had known what I know now about the disease the first time I would have just mandate that they admit him.
Because they kept sending us home one time, two times the third day went home Like he said it was 1 in the morning though and he got up to go to bed and I hear this noise and so we went back again and I told him that we are not going back home again and you are going to admit him.
He is like oh sure-sure.
So that’s how we found out about it but it’s an experience, it’s an adjustment its huge. there is so much affirmation that they give you.
Even now they are still telling us more and more about the disease.
I told the nutritionist I can’t imagine just somebody having this disease 25 years ago.
I mean it just boggles the mind, Right? Because there is so much affirmation that they give you so much! It’s just I just take it home and I have to listen I have pretty good memory basically to remember you know. So I mean it must had been literally this much stuff we are still going to nutrition counseling, endocrinologist and I don’t know if you realize but diabetes affects your teeth, your feet, your eyes, your blood your this your that.
Annison Dale:Hmm.
Marty:It’s just a lot , a lot , but you know he is still here and he said that that’s what he has to do to stay healthier and stay better he will do it. So I feel good that he is doing what he is supposed to be doing.
Annison Dale:Great! Ray You mentioned some of the adjustments what would have been some adjustment that had to make? We will start with you
Ray:Well, it’s about everything you do I have to think you know my day out right from the beginning when I get up. Umm in the morning the regiment I am on with my insulin this umm four times a day and I use or take a they called insulin pins and the doctor pretty much you know showed me how many units to take on pin. There’s a dial dials to a certain number that much insulin you are getting at the time. So in the morning I will get up and I will do the finger stick which a way of a written my blood sugar level at that current time.
So I do that it will be a certain number and I document that number and that’s when and I first when I wake up in the morning I got to do that.
And at that point I can eat something like breakfast and take my insulin and that’s going way to be rest of my life, at least at this point.
Sometimes things do change down the road I might end up taking less insulin.
but right now I am taking 10 units insulin three times a day, 36 units what they called night time dose of insulin it different kind of insulin long acting insulin that I need which gets me through the night I know bottom out.
Bottom out means very low blood sugar or sometimes means very high blood sugar.
But mostly at this point we are trying to keep it down to my knowledge.
Like I said, I am still getting hang of this, its a life change and this is a serious life change because I still like to exercise and stuff, you know my blood level has to be certain my sugar level has to be certain point before, I can even go into the gym.
So throughout the day like she said I used to work a lot.
I’ve kind of cut back on that but you know.
It’s hard because you have to be careful about when you eat, what time you have your insulin, what you eat, you can’t skip a meal like I said you really have to think you’re through the day.
It’s not like it used to be before never gave it a thought.
But now I really have to give it a thought. It’s been a life change.
Now that I am on insulin, I can honestly say that I feel fantastic.
You know I lost a lot of weight.
So far lost 22 pounds and that feels good.
I feel healthy I kind of got my energy back because I was kind of like [indecipherable] when I was I didn’t realized. I wished this part for the course.
I didn’t think of but I really was pretty exhausted.
She is shaking her head, but now that I have got my regiment down and my diet ,down my weight is off, I feel better than I have felt in my life . Some of the deal it’s given me new appreciation for life.
Annison Dale: You mentioned one of the adjustments about the work and coming back the hours has your job been pretty responsive?
Ray:Yeah.
I you know now all are guys are buddy we pretty know each other.
So we have diabetic conversation at work, well before I have never even noticed people were diabetic.
I knew one or two was, because they have had some incidents but now I know all diabetics. We all know each other.
Yeah we all talk but some of the people that I have very surprising you know I didn’t know they just looked the same to me they were just doing what they do but they still different regiment to me but still diabetes so that was a lot of you know lot of information even from them you know about you don’t have to do that but you got to do this then but I just listen to my doctors because you know I can’t see myself listening to my friends what to do with my diabetes, coworkers whatever.

Annison Dale:You know you both mentioned all the vast dimensional information how are you sort of filtering that through?
Ray:Slowely-slowely. It’s a lot and it’s still incoming you know the constant doctor acquirements because they never end for while they are starting to slow down a little bit now.
But I was a person I have a physical a year in unless I was sick I would didn’t go to doctor, but now I have got doctor’s appointment after doctors ,doctors and it’s you know I was complaining about it one day to friend of mine. This friend of mine came in and he explaining to me how sick he was. And I go to stick my lip because what I am going through and what is he going through is lot worse than what I am going through so the worse have to go through is doctor’s appointment so I will take it. You know.

Marty:He also has diabetes?
Ray:Yes he also. But it still is put things on perspective you can’t take anything for granted.
Yes
So
Annison Dale:Marty what is it like being with you and life adjustments? Because it interesting that lifestyle of that you and Ray are couple.

Marty:The food! The food. I do not like to cook everybody know in family they know I do not like to cook I have never really cooked. I never really had to cook got grown and had to meet him you know I just I don’t care for it
But the thing with diabetes and like I don’t know if you guys realize but whenever I used to go to grocery store I used to realize and met them do you know epidemic of diabetes. Because there is people don’t seem to realize it because we eat convenient food that we eat they are the worst things that you ever could eat the cold cuts and canned goods and any who the biggest adjustment was no convenience for food no.
You know he can have small amounts of whatever he can but just to be safe and I have make him take his lunch every day and that just involves lot more cooking for me and he used to not come straight lot of the time he would either work over time or his mother has big house around the corner he used to keep running to it.
So u had to late-ish hours so he would come 5-6 seven-ish and eat like that , well now he comes home right looking for dinner.
That’s the biggest change .there has to be something prepared for him to eat you know and its very expensive, very expensive, very-very expensive, so expensive. I have looked up on many diabetic recipes whatever recipes have different ingredient different spices its so-so expensive I think I have eaten I have a job I can buy these things but its so-so expensive you realize. In fact on of the first cook book I looked at said that its not cheap and it really-really isn’t. That’s been very biggest thing.
Ray:I know appreciate my wife so much you know I have to say that she is been you know she is a food warden she is a eyes that I need some time to make things work because sometimes you just feel like you need to grab some things and eat it regardless of whatever it is you know you cant get the pass the food fully. So

Marty:Its funny, in its portions my husband worked and his job can be physical and he worked for overtime so his portions are like huge but now he is down to like this so he is hungry every two hours, every two hours in the kitchen where do you go you going? To eat what eat you going to eat that and got so he eats more frequently in smaller amount but he eats more frequently.

Ray:Which is part of the deal with the diabetes, because you can’t eat huge amounts of carbs because it turns into sugar.
All the stuff I’d really like to eat that fill you up and keep you full you can keep that to really shrink it down.
I can eat it but I really have to small amount because it can turn into a bad situation and all the complications is the scary stuff for me in diabetes which all the other things can go wrong you can lose legs limbs, there is a lot of stuff there is a blindness. There’s lot of stuff that if you don’t take care of yourself and even if you do take care of yourself there is still possibility for it that it can go that way. There is no sure way but you can have a good life and healthy you know long life by sticking to the rules. You know so it’s come to long way unless she said back in the old days in classics how they had to take these needles.
Marty:Big needles ooh!
Ray:But a way that the insulin can be produced now is thins that a synthetic insulin that [indecipherable] is just like insulin that body produces. You are not taking some mixed up chemical you know this is the real deal.so
Marty: Like a sometimes would make a sense that the doctor might have to adjust, but his levels are perfect are great before meal after meal because we went to the nutritionist she thought may be but she end them and put the meter on them. you can put in software and print it numbers are great weight is going down, so he is doing well.
Annison Dale:Wonderful. You are working hard.
Marty:Yeah. He is!
Ray:Yeah I am planning on being around you know, for a lot of reasons. But this is good to have support like I said my wife has been more than wonderful to me with this whole thing. Because this is a burden, you know its heavy thing to carry around you know. She has made it a lot easier for me
Marty:Oh. Cute
Ray:Yeah ok.
Marty:I tried. I do.
Ray:Anyway this is in my family to everybody worries about you, get few more phone calls , nieces and nephews call me and say need some show some but people know, I guess some people just know that its a time to kind of come together which a family make sure supposed to do.
Marty:that’s just sweet need [indecipherable] shoulders they know how blowers.
Annison Dale:That sounds like family is your biggest support!
Ray: yeah. My goes out for those who don’t have any. But they have support groups for this because lot of people have to become insulin dependent they don’t want to take insulin, but my message is take the insulin you know. When I got sick I can tell I never want to feel like that again. It was horrible.
Marty: It’s terrible.
Ray: Horrible feeling. So the whole needle and the whole thing she won’t give me needle but she had to learn how to give needle in case. We haven’t crossed that bridge yet. But I am hoping that we don’t get her to that point because sometimes you just can’t be in position to give yourself if you are going to low blood sugar whatever you call that and you have to do that quick as quick just as injecting the insulin.
Annison Dale: How has it been with you have seen with different number of health care providers for the diabetes as you are getting stabilized which you sound as you actually are! being stable. Have you found a pretty good coordination of care, how has it been for you?
Ray: umm. Care has been good. my doctor. Really I was kind of disappointed by my [indecipherable] and then there’s more to the care takers and they explained to me that he was good to me did what he did gave me more confidence than him you know because I was like one point when I was like angry how come you didn’t catch this? How couldn’t you see this coming? He didn’t tell me? But the truth of the matter is it is hereditary and onset of it can come any time.
Marty: because when we went to the doctor he immediately she’s mind go oh ho. He looked at my husband in just September and said you are numbers are fine he said your numbers are good so this was lying in we.
Ray: And that’s what they told me that it’s pretty much chasing me you know what they meant by that is hereditary measure over time you are probably going to get it any way. But the fact that I was on active it kind of like kept it that bay longer. But he said you know you have fifty-ish kind of mark when a lot of stress stuff coming out you know so. Once they figure out what I had, I had doctors and endocrinologist and nutritionist just little bit everything
Marty: this thing was pretty well. They don’t like make sure this checked I guess all of your results to him. But he can go see this doctor it depends enough onto their own doctors so you know they have to really get together that much
Ray: They kind of a coordinated once I have found out about though. My nutritionist class information to my doctor same thing with endocrinologist and you know I haven’t even seen him yet. I won’t even see this guy to like July that’s so far out this.
Marty: [indecipherable] endocrinologist that this was your doctor.
Ray: Oh that it was good. That he decided to do that most doctors don’t even don’t do that I even know I didn’t know what an endocrinologist was I don’t know I have seen him not many times seen this guy or not. But I found out later on that he has seen in person she in fact allowed the blood work so I waited to find out that I am type 1 or type 2 diabetic.
Marty: He has both. Symptoms.
Ray:I might be changing where I am so I am hoping I am just curious really I am happy where I am at but I just which one I have
Marty:all the Symptoms of each one.
Ray: but I hope I answered your questions.
Annison Dale: Yes, more its than wonderful. As we wrap up you know this is going to be viewed by students here at excelsior do you have any kind of words of wisdom for the students in kind of your lived experience with diabetes they done there pd[unclear].
Ray: just be a good listener be intelligent enough you peruse you know what you really want to do because we need people that really know what they doing so please be good whatever you are going to be good at, that’s all.
Annison Dale: That is very important advice
Marty: I would say if you go to the ER for the same problem more than once don’t go home, stay there and let the and the EDA that we had the second time before we left she kind of something was [indecipherable] at her but I guess she couldn’t really say. Something was stuff and she was really good and fixing the bed and talking to herself and stuff she said something else too abd she said I can’t believe it they are sending you home something that remember she was talking like that?
Ray: I don’t know I was kind of out of it.
Marty: Yeah. But I still didn’t but still I feel he would be fine enough but he got worse so [indecipherable] I am staying that’s it. That is my lesson
Roy: They won’t really kick you out.
Marty: really.
Annison Dale: Well thank you very much.
Marty: You are welcome.
Annison Dale: Thank you.