A student from Saint Louis University recently emailed me asking if I would participate in a kind of Q&A and I of course said yes! She is going to school to become an occupational therapist, an important roll in the health care industry for many patients including people with Multiple Sclerosis. An occupational therapist works with patients to help them learn how to resume their daily activities or “occupations” with their disability allowing that patient to hopefully maintain a sense of independence . For example, and occupational therapist might help me learn how to compensate for my loss of fine motor control by teaching me various exercises that pertain to my particular daily activities and my particular disability.
Here is what she had to ask:
Q: Are you currently in school? If not, were you before receiving your diagnosis?
A: I am in fact currently in school. I had just finished a semester before my original onset and was able to take a class this semester as my symptoms had been improving. At the moment my symptoms are getting worse which would make full time school a bit tricky so I can’t guarantee I’ll be in school next semester.
Q: Could you describe your main occupations (daily activities)? Of those, which would you say are most meaningful to you?
A: Besides the daily functions of taking care of myself I do a lot of writing. This is my main hobby whether it be blogging or working on my novel. Sometimes I am unable to to type as a result of minor motor control loss so I compensate by using voice recognition software. When I can’t see what I am writing I simply make the fonts larger!
Q: In which occupations has MS affected you the most? (and why?)
A: MS effects every activity imaginable in some way shape or form. The little things are the worse such as buttoning your shirt or pants… Even simply grabbing a glass of water has to be done with care to avoid a mess… This is the case for me and many others who experience a lack of fine motor control in one or both hands. Luckily I only seem to lack the fine motor control in my left hand and I am right handed so I have done a lot of adjusting in things like typing. I can probably type just as fast now as I could before my MS as I have learned to mostly use my right hand and maybe use one or two fingers with my left hand as more of a “supporting tool”.
Q: In your blog you’ve mentioned that the weather in Southern California is not cooperative with MS; can you expand on your experiences with this a little more?
Also, are there any other aspects of your physical environment that you think affect your ability to do certain things?
A: Environmental issues: California… California is definitely not the place for someone who has MS and wishes to be happy… We experience extreme weather fluctuations of hot and cold. It might be 90 degrees out one day and two days later it’s hailing… The heat is not an MS patient’s friend especially for me as I am hyper sensitive to even the slightest warmth. 75 degrees is pushing it for me… When I go outside in temperature over 75 degrees I quickly loose my vision and become very clumsy. After long expose to heat I become extremely fatigue even depressed at times.
The only other environmental factor that gets in my way sometimes would be any kind of step. Sometimes my depth perception is really bad so I have to avoid stairs as I feel like I am extremely likely to misstep and take a decent fall… Curbs and cracks in the sidewalk can be a nuisance as well but this is not always an issue for me, only sometimes when things are really flaring up. This can also be an issue when dealing with drop foot as your foot catches every little thing sticking more then an inch off the ground… This requires some conscious adjusting of my own gate to get around.
Q: I noticed that you have a link to your photography site on your blog; what a great hobby/job, how did you get involved with it? Did your MS diagnosis affect your photography at all? (Did you have to adapt anything, take less jobs, etc.?)
A: I had always had an interest in photography but after my diagnosis and “recovery” from my first exacerbation I decided to just give it a go for multiple reasons. One I wanted to experience all that I could, not waste any of my time as a functioning individual and end up disabled again wishing I had just gave what ever it was a go. Secondly I was noticing memory issues… I wanted to be able to record all my memories and look back on them. Thirdly I have always wanted to work for myself and I though if I could get my career as a photographer off the ground that would work great for my MS because I could work my butt of when I am in good health and rest when I am ill and not worry about loosing my job or trying to get time off, etc. Of course that’s in a perfect world haha…
Q: I know that you’ve had some disagreements with your doctors about filling prescriptions too quickly or just to do it; do any of the prescriptions (current or past ones) have side effects so negative that they just don’t seem worth it to take sometimes?
A: My first Neurologist felt that I reacted very well to steroids and in comparison to other people that is true. I experience very little if any side effects when on Predinisone. Within a 6 month period of time I had already went through two solu-medrol steroid treatments (IV for about 1 to 2 hours for 5 days). The first treatment helped a lot, second did barely anything, and the third I stopped halfway through because I was experience horrible “roid rage” and mood swings… I just couldn’t handle the stress of being stressed and felt that it was making my symptoms worse so I stopped the treatment on my own as my doctor failed to respond to any of my messages.
Q: Would you consider yourself to have a “hidden disability”? Have you had any experiences where strangers judged you or treated you poorly because they did not know about your disability? For example, a friend of mine with a “hidden disability” frequently gets bad looks and sometimes even a nasty note on her car windshield after using a handicapped parking spot. Any experiences like that?
A: So far I have not experienced being treated poorly as a result of my disability. Though I do a good job at hiding it I am very open about it and have no problem explaining anything to anyone about any of my disabilities “invisible” or not. But yes, at least half my symptoms are “invisible” in that you would not know I was experiencing any issues unless I told you.