Home Designs For Life: Remodeling Ideas To Increase Safety, Function, And Accessibility In The Home.

Episode 13: Interview with a Woman Living with and Thriving with Multiple Sclerosis

May 15, 2022 Janet Engel, OT/L, CAPS
Home Designs For Life: Remodeling Ideas To Increase Safety, Function, And Accessibility In The Home.
Episode 13: Interview with a Woman Living with and Thriving with Multiple Sclerosis
Show Notes Transcript

Julia Gibson has been living with Multiple Sclerosis for over 33 years. Although her abilities have changed over the years, Julia fights the good fight everyday. She continues to live a full life well into her 70's in a multi-generational household with her daughter, son-in-law, and 3 grandchildren. Please listen to Julia's powerful story of living successfully with a debilitating, progressive, neurological condition.

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[00:00:00] janet: And here with us today, we have Julia Gibson. She is , 77 years old, and she was diagnosed with multiple sclerosis back in 1989. She has been diagnosed with primary progressive Ms. And she is here with us today to discuss what her life has been like with Ms. And how she is aging in place in a multi-generational household with her daughter and her daughter's family.

[00:00:33] janet: Thank you Julia, for being with us today.

[00:00:36] janet: So Julia, tell us about how you were first diagnosed back in 1989 with a multiple sclerosis. 

[00:00:45] Julia: I was having difficulty with walking and I was reluctant to pursue it. High went to see a neurologist [00:01:00] as I was referred to one, he tested me for a brain tumor. And once that came up negative, I was so nervous.

[00:01:09] Julia: I decided I didn't want to go back to pursue any further diagnosis. So I decided on my own, well, obviously the problem was with my foot. So I went to a podiatrist. Find anything relating the feet. Well, he took one look at me and said, you need to see a neurologist. I thought, oh dear. Back to that again.

[00:01:31] Julia: Then I saw an internist and I was complaining about headaches, which later I find out is associated with Ms. And he said, well, I tell you what we're going test you for all the things that I can say. And then we're going to look at the things that I can't fix. So the first list was relatively quick and then he [00:02:00] started on the list.

[00:02:00] Julia: He couldn't fix anything. He already had a pretty good suspicious. And tested me for Ms. And found that was the case. We had an MRI MRIs or new at that time, and they were quite laborious. They were like almost two hours long quite frustrating there anyway through the MRI and then of course they, want to give you a spinal tap

[00:02:28] Julia: and I said, what's the point of that? And he said, well, you probably don't need to have it because I feel comfortable with our diagnosis, with the MRI. So I said, fine, don't need to go in for any spinal. And he told me at that time, I will always remember. He calls me at seven 30 at night to let me know that yes, he confirmed and agreed with the diagnosis of Ms.

[00:02:56] Julia: But at the time there was absolutely nothing out there. [00:03:00] So he told me just to kind of live with it and they kept me on the phone for ever my. Concern at that time, which was not nervousness or being afraid. I was just glad that we could put a name on what was going on. And that was the sum total of it, because I didn't know anything about Ms.

[00:03:24] Julia: So anyway, we got off the phone and he told me to come back in a year and that was that. So at least. I could start putting pieces together and went all the way back to approximately seven years old. When I remember distinctly what the impression was probably my first encounter with the disease or my first exacerbation was getting into a hot tub of [00:04:00] water.

[00:04:00] Julia: and my back and my insids started to spasm a really weird sensation. Didn't know what it was. I didn't think it was normal. I, because one of the reasons why I remember it so well. And so then from there on life was normal. My progression was extremely slow, which gave me plenty of time for denied, and denied.

[00:04:31] Julia: And then later in life I always knew I didn't like actually. I exercised just didn't feel good. Not knowing why, of course, but other than that, things went on pretty much as normal. So the one thing I would have to say. It's in my thirties. I was, I finally was able to get pregnant. I never felt so good.

[00:04:57] Julia: I couldn't understand why women [00:05:00] complained about pregnancy because I never felt so good. Well, come to find out that's the time when Ms takes the. And you feel like a normal person outside of pregnancy. And so that was the first time I really felt like a normal person and it was great. It was just wonderful.

[00:05:21] Julia: I enjoyed it thoroughly. Then after pregnancy, you're still holding on to that normalcy for lack of a better term. Through lactation, but once you finished, like patient and pregnancy is really put to rest the AMS comes back and it can come back hard not in my case, but we did go back to progressive.

[00:05:51] Julia: So, but I remember that normalcy feeling. It was the, it was quite exhilarating, but. All right. Well, [00:06:00] anyway, going on from there as I approached, started to approach menopause, which came early for me, trying to step up and after I was diagnosed, I was able to start putting pieces together there again.

[00:06:16] Julia: And seeing what was that medicine? What was menopausal.

[00:06:21] Julia: That's when they think started stepping up a little regarding the AMS and was not able to walk very well without a five mile hike and I couldn't finish it. I was learning to be a school bus driver, and that was in the days when they had the big old buses with no power brakes, no power steering.

[00:06:43] Julia: And they had the. And then after I would come off of training sessions I couldn't walk my left leg. Wouldn't move. I ended up absolutely not having the ability to use the left leg at all for a period of time. And [00:07:00] Julie, how old were you at this point? What you said menopause came early for you in your forties.

[00:07:07] Julia: Okay. So like I said, that's a menopause kind of step things up regarding Ms. So I remember one time when I had a an exacerbation. My left arm wouldn't work and I thought, Ooh, that's really strange, but me, I never told anybody anything about the shy always because they always resolved. You got a little bit of rest and it resolved itself.

[00:07:34] Julia: You took a break and it would come back. One time I. was taking a load of laundry to the laundry room and I put the basket on the machine and I looked down. I had absolutely no idea what to do with it had absolutely no idea how to start the machine, how to work it. So I thought, oh dear. I, this was the time where I could write. Capitalize on [00:08:00] being panicked or frightened or freaked out.

[00:08:04] Julia: But I simply chose to go in and lay down and rest for a little bit and it came back. So I went out and was able to carry on, but that was a little bit of a rude awakening regarding Ms. But that didn't happen very often. Okay. And when did you get to the point where. You were having difficulty performing your daily activities of daily living like dressing and bathing.

[00:08:37] Julia: And then also tell us about your functional mobility, how that changed, because I know at the time you were not in a wheelchair and now you are in a power wheelchair. So tell us how you transitioned. Again, it was very slow. Gave me a lot of time to prepare myself [00:09:00] mentally knowing what was going to happen.

[00:09:02] Julia: That I finally got a doctor to tell me that. Yes, indeed. Through all these years, I was going to end up with my future being quadriplegic. Now that's a future to look forward to. I tell you. I did to get prepared ended up getting a wheelchair. And I remember after the gentleman brought it in and set it up and we worked out the logistics of it then my husband said, aren't you going to sit in it?

[00:09:33] Julia: And I said, heavens, no, I'm not there yet. Isn't it or a period of time. But then as my walking grew shorter and shorter, five miles went down to 4, 3, 2, 1. Now we're taking in steps. I can't go to the mall anymore. I'm looking for a place to fit. I have my furnitures strategically placed in my house so I could grab a hold [00:10:00] of it for It keeps me moving strategically using my arms for bounce.

[00:10:07] Julia: So then it started coming down. And so now I'm spending a little more time in the wheelchair and a little more time. And one thing, one limb would get weaker. I used to crochet then my left hand started to go. So I could not crochet anymore. And this little thing is one by one over the years would slip away.

[00:10:32] Julia: So for instance, today I have to use of my right arm only. The other three limbs are in varying degrees of disability. My left arm, my left hand. Isn't worth much. Can't hold or function. I do have my elbow and my shoulder for lifting. I need that or transferring. So I still have the ability to transfer.

[00:10:59] Julia: I can still [00:11:00] dress myself. I can still pretty much in my own fashion in my own way. Dress myself. I'm down to about I've minutes, standing, holding onto something and pacing up the minutes for exercise. And I do some exercises to try and keep what I have moving. Because if you don't use it, you lose it.

[00:11:28] Julia: Right. And tell us well, a little bit about your personal life. So you were a stay at home. Mom. You are a wife. Well, now you're a widdle. I'm sorry. I had bill passed away a few years ago. We're a passionate art collector. And tell us about your current living situation. Today I live with my caregiver.

[00:11:54] Julia: My husband was wonderful. He was actually my prince. He had [00:12:00] no problem. In fact, it was interesting because going way back before I was diagnosed, we had gotten married our second time around and he Married me with two small children. He was 14 years older. And so he took on quite a burden. And then four years after that I was diagnosed.

[00:12:22] Julia: So here he is with two small children and a wife, that's going to meet a caregiver and he never flinched. He was just so it's a wonderful so now he's taking care of. And then as time goes on with him being older, he's starting to have health issues. And so all of a sudden our roles are flipping and I'm trying to care for him and he's trying to care for me.

[00:12:49] Julia: So at one point in time, he ended up in the hospital and my youngest daughter who was still in school, came to the hospital. She was living in [00:13:00] a. In Ann Arbor, Michigan. And she came down from school with her husband and her two small children. Coke came out of a hospital against doctor's orders, packed him in the car with an oxygen tank, gave me a half hour to pack, cook us back to Ann Arbor.

[00:13:20] Julia: She was doing a fellowship and the VA hospital put him in the hospital where she could monitor his. And took care of him, took care of me. And that was it. We never went back to living on our own. Again, we lived with my daughter from then up and bless their hearts. They. Didn't take on one old parent, they took on the both of us and we reply to pair to draw to, well, that's a beautiful story.

[00:13:49] Julia: Yeah. She didn't think twice about it. I've been surrounded with some pretty great heroes. I tell ya. So Mr. [00:14:00] Gibson passed away. So Al I'm here with my daughter. And the family and I tell you what the whole, they think one line, one word is attitude. And living with the family helps you stay. Younger to a degree.

[00:14:20] Julia: In other words, you're not able to sit back and I was never one for picking parties or feeling sorry for myself. You can't fall into that. You just have to fight that with everything that's in you and to try and stay above. Honestly, I think that's one of the basic reasons why I'm still here. And still being a viable person to a degree as much as I can considering I've been carrying around this load of NS for most of my life.

[00:14:54] Julia: Right. And tell us what are the modifications that were made to the home [00:15:00] that you live in so that you could have your independence. But also receive help and participate in caregiving duties. Cause I know that you have three grandchildren and you've helped out quite a bit. So, so tell us about how your home has been modified.

[00:15:17] Julia: I don't have all the All the apps and the helpers that I need because of affordability, honestly for instance, I don't have a walk-in shower and this house, my daughter and I have two daughters. One is in Missouri and she built a home and she was in a position where she could tell them.

[00:15:40] Julia: Asked me what I wanted when I needed. And she belted, I have a beautiful walk-in shower. I have a total handicapped bathroom and my bedroom in her house in this house, we haven't been quite so fortunate, but we make it work. You just [00:16:00] figure out what you need now with my husband being a vet. We get a lot of things.

[00:16:06] Julia: And I did from the VA who we supplied all of the things that he needed, which I just used for myself after he passed and took advantage all of those, for instance, the bed rail that is stands up. And that helps me to get in and out of bed. And another thing that I. And I don't know where I got the idea is I bought a piece of alas, alas.

[00:16:37] Julia: Oh gosh. Elastic, berm, tight elastic wrapped it around my mattress and I use it as a pulley. So when I want to roll from side to side, I'm able to use. There's a lash. They stripped that I put around the bed and I can pull myself because I'm not able to [00:17:00] turn my body without help. And that's on my arms because my legs are pretty much useless.

[00:17:08] Julia: Okay. That's very innovative. Yeah. Yeah. It was. I had the one people come into the house at night, tell them about it. They note that and try to pass that on because it really has helped greatly. What about your bathroom inside? Well, tell us about you're in the immediate space where you live, that gives you privacy from the rest of the house and the family.

[00:17:35] Julia: When we first moved into this house we didn't have in lot quarters, obviously. So my kids gave villainize a garage and so we had it modified. And I put in a toilet, I wasn't able to put in, we didn't have room enough for a bathroom per se, but put in a toilet, which was a [00:18:00] high I parked, I put in a handicapped toilet.

[00:18:02] Julia: So it was higher and put the bars on either side of the toilet. There's no barge inside that, the area that the toilet, but I used the doorframe and I use the book. To transfer fading. I'm not able to get into their shower anymore because it's a step up. You have to step up to get into the to the base and that the shower to the floor of the shower.

[00:18:27] Julia: And. So I'm not able to do that anymore. So I converted, I have put in a bar sink and the garage and I made from the bar sink. It works fine. And I feel like I'm clean and I can do a sufficient job and it works. So I'm glad that. Where I need help. The things that I cannot do anymore is a course without having a shower, I'm not able to wash my hair.

[00:18:58] Julia: My daughter throws my [00:19:00] head in the sink and we carry on and. I cannot clip my toenails anymore. They just thought the little things you can do. But for the most part, I'm in pretty good shape considering taking care of myself. Yes. I can feed myself. I don't need any special equipment for that. Cause like I mentioned, I have my bright hand functioning.

[00:19:25] Julia: However, coming to the fact that trying to use a knife and fork, no, that doesn't work. I only have the right hand. So there's no such thing as a knife. I do kind of depend on my kids head, make it easier for me to eat by cutting my food it's necessarily. Now with the bathroom situation is modifying the shower.

[00:19:50] Julia: Something that you or your family has and your future plans? Yes, we looked [00:20:00] into getting one bathroom completely remodeled. And then this particular case, it's a little bit of an older house. We had to completely started that door. The door wasn't even. Adequate to get a wheelchair through it.

[00:20:16] Julia: So we would have to cut. We'd have to start there at the door, a larger enclosed Cub and shower, and that would all have to be removed. So we just haven't been in a position to afford it in this house yet. Cause it was a considerable remodel. Right down to every degree, right. Because with a power wheelchair, you definitely need to have at least a 32 inch clearance, correct?

[00:20:45] Julia: Yeah. And then we put, I can't even get into it. And we're a little bit lazy because this thing is working fine. So I feel like I said that I'm able to clean [00:21:00] sufficiently that I am comfortable with it. So it's a work. Yeah. Right. And you've made it work and that's what matters as long as you're you're functional and you're satisfied with what you're able to do and the tools that you have.

[00:21:15] janet: Then it works and you're independent with bathing. Now if want something else and you can afford it and you can afford to hire a contractor and make these changes, then you know, that's even better. But until then, and you've been just like you said what matters is the attitudes that you have, and that is one of the things that I've learned as an occupational therapist over the years is that it didn't matter what the person's problems were, what their diagnoses were, what mattered was their attitude.

[00:21:52] janet: And you would, I would have patients that really. Had a we're in a terrible state of [00:22:00] health or very handicap, but their attitude, if it was good life wasn't that bad. And I've had the opposite people that really compared to others didn't have so much disability, but it was the end of the world.

[00:22:16] janet: One story that I want to say, because I've known Julia for many years, I was her occupational therapist about what was it? Julia seven years ago, right. Or five years? About five years ago. Yeah. And I worked with Julia for probably over a year. Right. We knew each other about two years.

[00:22:39] janet: And we became good friends. And when I was moving from Florida and I moved to Colorado, Julia, she got on a city bus. Okay. And mind you, she's in a power wheelchair. She went to the mall. I know it's a manual. I don't, I have a [00:23:00] power wheelchair. I haven't gotten myself into my power wheelchair yet. I stick to the manual because exercise like, again, if you don't use it, you're going to lose it.

[00:23:10] janet: So I try to stay mobile manual wheelchair. Okay. Thanks for correcting me. Okay. So, so she went in her manual wheelchair. Got got on the city bus, went to the mall and she bought a throw blanket for myself and my family because we were moving to Colorado and we were going to have cold weather and it was the most beautiful throw blanket.

[00:23:39] janet: It was white and it was knitted and I still have it. Oh my goodness. That's amazing. Yeah, and we use it all the time. I always thought of you. And, but that just shows you how independent you've always been. Yeah, I try. Yes. Right. I tried [00:24:00] trying to be so, but no I have the power chair sitting right here.

[00:24:04] janet: And uh, my physical therapist, Laurie bless her little heart. She says, well, it's time. We started moving into the power chair only if just to give your body a break you're working hard, but now you're at an age where we need this. What is working as long as possible because the time is going to come when I'm not going to be able to transfer.

[00:24:29] janet: And then it's going to be a whole different ball game. But to right now, she said, I want to preserve your shoulders lifting. So we're going to put you in the power chair and give your shoulders a break from pushing in the wheelchair. So and that's important too.

[00:24:45] janet: I'm glad Lori is doing that with you, because that's just as important since you may have to transition into that for more hours of the day, then you definitely want to learn now and be comfortable with it [00:25:00] then when you really need. Yeah. It's like learning to drive all over again.

[00:25:05] janet: Well, Juliet, I so much enjoyed our conversation today and I know that our listeners will learn a lot from you. You have such a powerful story and you're just a fighter and we can all take a page from your book.

[00:25:22] janet: It's been the only thing I can say that helped me greatly was the time allotted for denial. My progression was slow and so I got to have a time for just denied and I, and, but then you come back to reality and you're ready to face it. Right. And the, and you said that you face it and you move on and like you're, we all have challenges in life.

[00:25:52] janet: Yours is a mess for perhaps for someone else it's, Parkinson's perhaps someone else it's [00:26:00] mental illness. So. Our issues are all different, but thank you so much for being with us today. And it was just such a great story and inspirational to, well, thank you very much, Janet that I've enjoyed your friendship and I've appreciated your help and your guidance every inches away.

[00:26:22] janet: And here we are. And thank you. Thank you, Julia.