Dana's MS Interview
Name: Dana
Age: 55
Diagnosis: Relapsing (RRMS)
Location: Canada
Diagnosis: Relapsing (RRMS)
Location: Canada
1. When were you diagnosed?
1994
1994
2. What were your early symptoms? What made you thing something was wrong?
Fatigue prior to 1994. But I had severe right eye pain and shady vision, and was diagnosed with optic neuritis.
Fatigue prior to 1994. But I had severe right eye pain and shady vision, and was diagnosed with optic neuritis.
3. What are your top symptoms you deal with every day? Do you use mobility aides?
Neuropathic pain, MS hug, Trigeminal Neuralgia, and my left leg gives out. No mobility aides.
4. What is your relationship like with your healthcare team? Positive? Wish it could be better?
I love my MS team. They're quick to return calls. My neurologist is very caring. He is the type to call you back at home, in the evening, or on a weekend. But he's going to be retiring.
Neuropathic pain, MS hug, Trigeminal Neuralgia, and my left leg gives out. No mobility aides.
4. What is your relationship like with your healthcare team? Positive? Wish it could be better?
I love my MS team. They're quick to return calls. My neurologist is very caring. He is the type to call you back at home, in the evening, or on a weekend. But he's going to be retiring.
5. Are your family, friends, spouses, coworkers, and neighbors supportive? Did relationships change? Do people you know treat you differently now?
I would say my family is supportive. But I do not believe my friends are and I don't complain to them whatsoever.
I would say my family is supportive. But I do not believe my friends are and I don't complain to them whatsoever.
6. What are some things you loved to do that you had to give up due to having MS?
I loved working, but I had to give it up. Going for long walks.
I loved working, but I had to give it up. Going for long walks.
7. What are some things you still love to do? What's your passion/hobby?
Gardening, and I pace myself. Reading, and I use large fonts. Cooking.
8. What is the most negative outcome that has come about since having MS?
My inability to work. I wanted to retire at 57. But I went on disability in 2014.
9. What is the most positive outcome that has come about since having MS?
I believe things could always be worse. Never really thought about it before.
10. Do you have any pet peeves about MS (labels, ads, peoples views about MS, etc)?
I think people have a lack of empathy because many of the symptoms of MS are invisible.
11. What's your biggest fear with living with MS?
That I will become immobile and have Progressive MS.
12. What's your biggest hope with living with MS?
A cure.
13. Best piece of advice you can give another individual living with MS?
My advise to anyone is that no two people are the same. Don't compare yourself to anyone else. What works for someone else may not work for you. MS is individualized.
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?
I do not follow social media of MS on FB. I found it too overwhelming. I did when I was first diagnosed. But there are too many opinionated people. I do follow some on Twitter. I find them to be more informative. I am aware of them but I have not used their services.
15. One thing you wish people knew about what it's like living with MS?
MS changes every day. Sometimes every hour. For the people who do not have MS, no you are not having the same symptoms as I am. Also, there are lot of side effects with medications that can be catastrophic. Just because I look fine, doesn't mean I am. I'm not.
*I want to Thank Dana for the interview.
**If you would like to follow her, check her out on Instagram: @damien1939
Gardening, and I pace myself. Reading, and I use large fonts. Cooking.
8. What is the most negative outcome that has come about since having MS?
My inability to work. I wanted to retire at 57. But I went on disability in 2014.
9. What is the most positive outcome that has come about since having MS?
I believe things could always be worse. Never really thought about it before.
10. Do you have any pet peeves about MS (labels, ads, peoples views about MS, etc)?
I think people have a lack of empathy because many of the symptoms of MS are invisible.
11. What's your biggest fear with living with MS?
That I will become immobile and have Progressive MS.
12. What's your biggest hope with living with MS?
A cure.
13. Best piece of advice you can give another individual living with MS?
My advise to anyone is that no two people are the same. Don't compare yourself to anyone else. What works for someone else may not work for you. MS is individualized.
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?
I do not follow social media of MS on FB. I found it too overwhelming. I did when I was first diagnosed. But there are too many opinionated people. I do follow some on Twitter. I find them to be more informative. I am aware of them but I have not used their services.
15. One thing you wish people knew about what it's like living with MS?
MS changes every day. Sometimes every hour. For the people who do not have MS, no you are not having the same symptoms as I am. Also, there are lot of side effects with medications that can be catastrophic. Just because I look fine, doesn't mean I am. I'm not.
*I want to Thank Dana for the interview.
**If you would like to follow her, check her out on Instagram: @damien1939
Comments