01/04/2016 the 'New Normal' ­ Google Forms

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No, never 16 26.7%

Yes, infrequently 17 28.3%

Yes, frequently 20 33.3%

Yes, all the time 7 11.7%

Yes, it is appropriate 57 93.4%

No, it is inappropriate 4 6.6%

61 responsesView all responses Publish analytics

Summary

Barts­MS

Do you feel normal?

Do you think it is appropriate for people with MS to be, or at least to feel,normal?

How long have you had MS (years)?

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33.3%

28.3%26.7%

93.4%

gavin@giovannoni.net

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4

9

10

20

2

8

1

3 years

13

6

15

29 years

7 years

7

35 years

16

45

16 (since diagnosis ­ probably 5 before)

10 plus years

5 diagnosed, ca. 8 total?

14

3.5 years

2

8 years

35

2.5

10 years

29

10 years in November

24

9 yrs

3

16 years

1 year since diagnosis, but probably had it for 5+ years.

in hindsight ­ 10 years since first symptoms ­ but only 3 years since diagnosis

36

9 years

3 years

7.5 years since diagnosis

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Yes, currently 44 72.1%

Yes, in the past 10 16.4%

No, never 7 11.5%

'New Normal' is an inappropriate term, I don't support using the term.: 0 5 8.2%

1 10 16.4%

2 4 6.6%

3 13 21.3%

4 18 29.5%

I am very supportive of using 'New Normal' as a descriptor for pwMS.: 5 11 18%

3.5

17

4 years

28

Have you been treated with a DMT (disease­modifying therapy)?

How would you rate the term 'New Normal' as a descriptor of people livingwith MS that are in long­term remission?

Comments?

Interesting concept!

16.4%

72.1%

0 1 2 3 4 50

4

8

12

16

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I have been NEDA for 3 years but have residual issues from before ­­ my new normalor disabled? If you aren't "normal" but long term stable with minor transient good &bad periods you have to reference everything to your new normal; and still painfullyfeel & mourn the loss of true normal.

There seems to be continously changing new normals in MS. For me, it is importantto recognise 'this is where I am now' and adapt as best I can, trying not to look backat yesterday's normal.

I've always understood the 'new normal' from Doctors as being: here are things nowon your next point of decline and you're not going to improve so get adjusted to it asthis is now your baseline.

Really IMHO there is no new normal in MS as the disease may decide attack atanytime, one never knows what tomorrow will bring.

New Normal. We all have to learn to adjust how we live cos we are constantlychanging. This could be learning new skills or recovering from injury or living with aLong Term Condition such as MS. I think you are trying to make people with MS lookfoward and not hark back to the days when they could do things which are nowimpossible. OK I cannot run, hop, skip or jump (New Normal) but I do not getdepressed cos there are always new challenges to overcome. Yes I do get pissed offthat MS has robbed me of several activities that I really want to do. These includegetting into a car and driving off somewher or working in the garden but I have learntto adjust, you call it New Normal. Rather than call it a New Normal teach people tolook forward and not to look back. Its not easy, believe me, but it makes you engage,be a part of the community.

I am quite disabled (far end of edss 6.5) but I have lots of cognitive reserve (PhD inmaths, MSc in environmental psychology) and feel normal when I am doingsomething intellectual rather than physical.

normal is such a relative term and it always depends on what you compare to. i feelnormal because i can do all the things again i always used to do, work an cognitivelydemanding job, travel internationally etc. on the other hand, anything can becomenormal over time. probably interesting to look at the literature on the normalisationprinciple in this context, if normal is meant to "be (feel?) like everybody else". Thereare plenty of people who do not have ms and who do not feel "normal" due toperceptions of societal norms. I have a friend who is in a wheelchair with musculardistrophy ­ he feels normal and gets annoyed if people treat him differently althoughphysically he lives with some restrictions. so, difficult concept, normal!

something akin to the way breast cancer patients think of themselves

I would prefer new permanent abnormalities

I would anticipate that those of us who have been living with this illness for longerperiods of time would be much more comfortable with the term. I believe that I wouldhave been intimidated by the term "new normal" at the time of my diagnosis.However, I would pay a king's ransom right now if I could ensure complete stability(NEDA) with only age­related changes. I also believe that pwMS have more reasonsto be optimistic and expect better outcomes than those diagnosed 10 years ago (just

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as I was more optimistic than those had cause to be who were diagnosed 10 yearsbefore me). For those diagnosed early and treated with newer, more effective DMTsthe "new normal" might be closer than ever to just plain normal.

I'd prefer a term that doesn't belittle the lack of normal that I feel. "Stable injury" orsomething. I would prefer an acknowledgment of the damage.

I'd be concerned that 'New Normal' makes it acceptable that MSers might never feelfully normal again. I'm 'lucky' that natalizumab is an appropriate treatment for me, andI feel a lot better on it than I did on beta interferon, but the damage has already beendone. I get physical and mental fatigue such that I can't perform in the way I couldpre­MS; there are symptoms that will never resolve. I'm better off than most: I workfull­time in a professional field for a supportive employer, but I will never move anyfurther up the career ladder than I have already because I don't always have theenergy and clarity I'd need to perform effectively in a more senior role. I'm fine on agood day, but there are too many bad days when brain fog descends and I have tospend the day doing less complex tasks. I might have to accept that this is my newnormal, but I don't want the professionals to think of it as normal or call it normal andgive up looking for ways of making it better.

Each day is a new normal, as time goes by I realize things are changing that othersare not aware of.

I don't think I'll ever feel normal in the way I used to but I'm beginning to accept this.The term 'New Normal' describes this feeling very well.

While I can understand the concepts underlying proposed use of a term such as"new normal", I think it is inappropriate and risks undermining the everyday difficultiesand uncertainties that PwMS face when they have a significant level of impact fromtheir MS. I don't want a new normal ­ I want my original and real normal (i.e. beforeMS) back again. I certainly do not want to accumulate a collection of "new normals" ­which is what will happen for most PwMS.

I have had periods of feeling only physically disabled that seemed a "new normal".But being MS fatigued never feels normal.

I was unable to say I've had MS symptoms for 29years but only diagnosed 15yrs ago.I've actually adopted self description of my CURRENT new normal is ... because I didnotice my natural disposition to be optimistic lead me to redefining my self ratherthan struggling to accept the changes, which weren't always recovered from. Thisdefinition I created, LOL, not you

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