Multiple Sclerosis

David R.

Age at interview: 62
Age at diagnosis: 44
Outline: David R. was diagnosed with MS after experiencing odd symptoms where gravity seemed to change. David faced difficulty with speaking and comprehension but was not diagnosed with MS until his gait became affected seven years later. He experiences incontinence, mental fatigue, and diminished mobility. David R. fears that he will eventually need a wheelchair and living environment alterations to accommodate it. David R’s outlook on life has not changed much as a result of his MS. He is still able to be with friends and engage in activities he enjoys. David R’s advice to others with MS is to separate those things that you can and can’t control and do the best that you can with the things that you can’t control.
Background: David R. lives with his wife in a small town with access to good medical care. He has two sons and practiced as an attorney until retirement. Prior to MS, David R. enjoyed running and camping with his two sons. Now, David R. uses a therapy pool at his local YMCA to help with his strength and flexibility. David R identifies as a heterosexual White male.

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In November of 1994, David R. started experiencing odd symptoms where he felt this “weight or cloudiness” descending on him for thirty seconds to a minute at a time about ten times a day. He felt “almost as if gravity had changed” and there was more gravity pulling him down like an internal weight. He also experienced increased difficulty with speaking. While he could still speak and comprehend what was going on in his surroundings, David R. felt that it was strange enough to contact his doctor. David R. was then referred for an MRI. The radiologist suggested that he might have Multiple sclerosis (MS). A second neurologist dismissed this diagnosis, AND referred him to a psychiatrist, suspecting that his condition may have been psychiatric rather than neurological. Over the course of a year, David R. received many diagnostic tests including nerve conduction tests and a spinal tap, none of which showed any indication of MS. In late 1995, David R. went to two competing medical institutions seeking answers. The first institution told him that he did have Multiple sclerosis while the second one told him that he did not because the plaques looked inconsistent with MS. A follow-up six months later showed no signs of progression, and he was able to resume his normal daily habits. However, the symptoms did not go away. Around 2001, David R. noticed that his gait was somewhat affected on his left side and returned to the neurology department to ask about his MS diagnosis status. After a year of MRIs and monitoring, the doctors had enough data to make a determination that David R. did have MS. At that time, David R. was no longer able to run but “could walk normally and maintain a pretty good, normal life.” Currently, David R’s symptoms include incontinence, affected gait, weaker right side, diminished endurance, and mental fatigue which contributed to his decision to retire. He also sees a psychiatrist to address the depression that accompanied his MS diagnosis.

David R. was put on a Copaxone medication regime. Over the next five years, David R. had three relapses that necessitated IV steroids for treatment. With each relapse, David R. noticed that his capabilities diminished somewhat, namely increased difficulty walking around as one leg might drag or he would be more prone to trip and fall. Despite these relapses, David R. continued to practice as an attorney, join his sons on Boy Scout camp outs, and lead a pretty normal life. Around the fall of 2007, he had a dramatic relapse greatly impacting the right side of his body. As a result, his neurologist switched David R. to Tysabri, which affected his white blood cell counts. He then switched to Tecfidera for four to five years, but his white blood cell count remained low. David R. concluded that these MS medications compromise his immune system and no longer takes any disease-modifying pharmaceutical therapies. David R. went through physical therapy regimes and learned the importance of physical therapy as being even more important than the medicine one takes because “when you’re fighting this illness, what you’re fighting is the diminishment of your capabilities.” Over the years, David R. has gotten pretty good at accepting those things that he cannot change and working within those parameters.

David R. has been walking with a cane for 11 years and worries that he will eventually need a wheelchair. While “that’s not the end of the world,” he would have to make living arrangements, house modifications, or completely buy a new house to accommodate a wheelchair. MS has not changed his outlook on life too much as he is still able to be with friends, keep up with people, and maintain his cerebral side. David R. is interested in getting more counseling regarding the aging process in MS.

As an attorney, one of David R’s specialties was the Americans with Disabilities Act. He knew that it was better for people to announce ahead of time if they are suffering from an impairment and he had enough trust in the people he worked with to disclose his MS. David R’s extensive professional knowledge of the Americans with Disabilities Act gave him an appreciation of what his rights were, and a better appreciation of the obstacles people face even in situations where one would think there should not be obstacles. David R’s advice to others is to come to peace with the fact that there is always a cloud of uncertainty hanging over one’s head when it comes to MS, and it is best to deal with it as best as one can. One way that friends and family can be supportive of someone with MS is to have an awareness of the fact that things that they might be doing unintentionally will have an effect on the person with MS.

 

David R. describes feeling like “gravity had changed”.

David R. describes feeling like “gravity had changed”.

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I felt almost as if gravity had changed, that there-- I was just-- there was more gravity pulling me down, or that there was like an internal weight.

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I had the difficulty walking around work-- that I would walk around but that, like, one leg might drag a little bit. I might be more prone to trip and fall, that sort of thing. 

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The main thing is that my gait is pretty much affected. My right side is weaker and less responsive than my left. When I climb stairs, for example, I have to climb one step at a time. So, I can't, you know-- I can't take my right foot-- I can't take my left foot, put it on the step above, and then take my right foot and put it two steps above.  

 

David R. stayed with his employer to maintain access to insurance.

David R. stayed with his employer to maintain access to insurance.

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But that-- again, that's one of the reasons why I stayed-- I continued working for the [LOCATION] as long as I did, because back around 2001 or so, there was always that cloud hanging over my head whether or not I had multiple sclerosis. And I thought that I would be better off staying with the system with a good retirement plan and good health insurance in case things got worse.  So that sort of discouraged me from, like, looking to change jobs, even in the late '90s, when I would have liked to change jobs.

 

David R. details how his neurologist monitors his disease activity.

David R. details how his neurologist monitors his disease activity.

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And one thing that they started doing, and I've always thought that it should be done with any multiple sclerosis patient, is they started taking measurements of my physical capabilities, establishing a baseline. I would have thought that that should have been standard for anyone with a progressive neurological condition so you could watch someone's deterioration over time. But that was really helpful.

 

David R. became more aware of disability rights after he was diagnosed.

David R. became more aware of disability rights after he was diagnosed.

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Well, you know, it was interesting, because I was actually the office expert in the [LOCATION] office of the attorney general on the Americans with Disabilities Act for five years before I was even diagnosed with multiple sclerosis. But it gave me a better understanding of a lot of things, not just the employment aspect, so the need to provide a reasonable accommodation and things like that, but also things that one would think would be like second nature for, like, medical institutions.  And I don't mean to rag on the neurology department at [INSTITUTION]. But you go there and the service representatives, the people who check you in, are sitting at a level where you need to stand to deal with them. A lot of people with neurological conditions are in wheelchairs.  Now, one would have thought that the architects and the designers-- and if not the architects and designers, the people who ran the place-- would have thought, hey, maybe we want to have at least one station where people don't-- you know, people don't have to peer up at someone when they're checking in. And so, you know, having knowledge about the Americans with Disabilities Act and also having made friends through that with people with mobility impairments in wheelchairs gave me an appreciation of what my rights were, and also a better appreciation of what some of the obstacles people face are, even in those situations where one would think there shouldn't be any obstacles.

 

David R. is impacted by incontinence and fatigue.

David R. is impacted by incontinence and fatigue.

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I suffer from incontinence. And there have been occasions when I've had to say to people, "Hey, you know, I'm more than happy to participate in the meeting, but you're going to have to allow me to take breaks so I can visit the restroom." I also, towards the end of my career at work-- as I said, I was suffering from fatigue. There were occasions on my lunch hour when I actually told my boss, "I'm really sorry about this, but I'm going to have to just lay down for a half an hour underneath my desk." I was that tired.  But it's a situation where when they hired me, you know, I was-- I'd been in the [LOCATION]-- I'd been working in a capacity where they already knew me, and they knew my condition. So, they sort of knew what they were getting. So, I don't think that I was-- I certainly don't think that the requests that I was making were all that unreasonable.

 

David R. wonders if he will regain some physical abilities.

David R. wonders if he will regain some physical abilities.

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I mean, the other thing I've never really gotten any answers on before I started physical therapy is whether if you lose, like, strength, or if you lose neurological capability, whether or not that's something that can be restored. I've never really gotten a straight answer out of anyone, which is that, you know, I was-- I was bad for a number of years where I wasn't engaging in physical therapy or whatever. But what I don't know is whether by not being as conscientious about physical conditioning and things like that, whether I lost capability that can't be restored.  

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