Maryam's MS Interview
Name: Maryam
Everything is good.
6. What are some things you loved to do that you had to give up due to having MS?
Everything. I was an anesthesia student when my MS started. I left everything when it started. I live my life in the kitchen and on the computer learning web development.
Not a lot of positive outcomes have come from having MS. But I have learned web development so that's good.
10. Do you have any pet peeves about MS (labels, ads, peoples views about MS, etc)?
No
Age: 42
Diagnosis: Primary Progressive (PPMS)
Location: VA
Diagnosis: Primary Progressive (PPMS)
Location: VA
1. When were you diagnosed?
I was diagnosed in 1998, 4 years after my symptoms started.
I was diagnosed in 1998, 4 years after my symptoms started.
2. What were your early symptoms? What made you thing something was wrong?
In 1994 I had optic neuritis but the eye doctor didn't diagnose it. 4 years later I had hand cramping and a tremor in my right hand. I had an MRI and other diagnostic tests and was confirmed with MS.
In 1994 I had optic neuritis but the eye doctor didn't diagnose it. 4 years later I had hand cramping and a tremor in my right hand. I had an MRI and other diagnostic tests and was confirmed with MS.
3. What are your top symptoms you deal with every day? Do you use mobility aides?
My main symptom in the last 7 years has been Trigeminal Neuralgia. I don't use walking aides. Maybe I need to, but I prefer to use the bus or stay at home.
4. What is your relationship like with your healthcare team? Positive? Wish it could be better?
I currently don't have a healthcare team. Whenever I need something including physical therapy, I go to a clinic.
My main symptom in the last 7 years has been Trigeminal Neuralgia. I don't use walking aides. Maybe I need to, but I prefer to use the bus or stay at home.
4. What is your relationship like with your healthcare team? Positive? Wish it could be better?
I currently don't have a healthcare team. Whenever I need something including physical therapy, I go to a clinic.
5. Are your family, friends, spouses, coworkers, and neighbors supportive? Did relationships change? Do people you know treat you differently now?
Everything is good.
6. What are some things you loved to do that you had to give up due to having MS?
Everything. I was an anesthesia student when my MS started. I left everything when it started. I live my life in the kitchen and on the computer learning web development.
7. What are some things you still love to do? What's your passion/hobby?
I love to drive. Maybe it's a way to live a normal live. I'm bored and get lonely but prefer to be by myself. I wish I could work but I can't.
I love to drive. Maybe it's a way to live a normal live. I'm bored and get lonely but prefer to be by myself. I wish I could work but I can't.
8. What is the most negative outcome that has come about since having MS?
Rectal nerve damage has made bowel incontience really hard and bad for me.
Rectal nerve damage has made bowel incontience really hard and bad for me.
9. What is the most positive outcome that has come about since having MS?
Not a lot of positive outcomes have come from having MS. But I have learned web development so that's good.
10. Do you have any pet peeves about MS (labels, ads, peoples views about MS, etc)?
No
11. What's your biggest fear with living with MS?
Ending up in a wheelchair
Ending up in a wheelchair
12. What's your biggest hope with living with MS?
Remyelination
Remyelination
13. Best piece of advice you can give another individual living with MS?
Every person with MS is different.
14. How do you feel about the MS community? Social media? Yay or nay? Are you familiar with MS organizations such as the MS Society, MSAA, Multiple Sclerosis Foundation, etc? Have you ever used their services?
Nay. I know the MS Society, I receive their magazine. I don't know about their special services.
15. One thing you wish people knew about what it's like living with MS?
Never thought about it. I hate the word "disabled", and wish it wasn't diagnosed on me.
*I want to thank Maryam for the interview.
**If you would like to follow her, check her out on Instagram: @rock_mary
Every person with MS is different.
14. How do you feel about the MS community? Social media? Yay or nay? Are you familiar with MS organizations such as the MS Society, MSAA, Multiple Sclerosis Foundation, etc? Have you ever used their services?
Nay. I know the MS Society, I receive their magazine. I don't know about their special services.
15. One thing you wish people knew about what it's like living with MS?
Never thought about it. I hate the word "disabled", and wish it wasn't diagnosed on me.
*I want to thank Maryam for the interview.
**If you would like to follow her, check her out on Instagram: @rock_mary
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