Impostor Syndrome?

[Mary C]

Olivia H
Glad you are doing so well.Wishing you all the best and enjoy each day .
Mary

[Olivia H]

Atypical or ALS 'outliers' are certainly out there, some are just very very slow and gradual. But for others, as in my case, walking and balance deteriorates quite quickly, but not completely, and then nothing much has changed at all. Still pretty much the same .... for over 9 years.

[Johnny5]

Progression varies with everyone w/MND/ALS. Nothing is the same but it all is. Confusion is caused by a simple truth.

On the last trip to my ALS clinic, I was told I am an outlier. Someone who does not fit into the standard progression. Some pALS are still walking at 16 years. I have spoken to 3 of them so far and hope I get to join that club. When you look at the graph showing the progression of a group of people with ALS, the outliers are the ones that chart a way out of the trend the majority do and are generally disassociated with the statistics because we throw the idea of normal out the window. We all do. Hawkins lived 52 years with ALS, he was an outlier also.

Be happy. We can walk still. So many of us can't. My progression is picking up now, my legs get exhausted, my arm and hand are clumsy and I drop things way too often. This is expected but hoped against. I lie to myself and say no, this is not MND/ALS, but inside I know it is...because too many pokes and prod's and exams have proven it is not something else. Debbie said it right though. Make the most of every day. We are a special lot, and nothing can change that but us.

[Deb]

Hi Eddie,

Please don't ever feel like a fraud when you have a diagnosis of MND. I have been diagnosed for nearly 4 years. On a good day I am grateful for all the things I still can do. On a bad day I worry about what's around the corner.

The uncertainty of MND and progression is hard to predict so we should make the most of everyday.
Take care,
Love Debbie x

[Ellie]

Not entirely sure,

You should find out which motor neuron disorder you have - different variants can have very different trajectories and prognoses. xx

[WheelsOfSteel]

Any idea which type of MND you have? xx

Not entirely sure, but I will say it is the "starts at the bottom and works its way up" kind.
Nothing noticeable in voice or swallowing (yet).
I am having to learn a whole new load of medical terms and abbreviations to understand this forum!

Thanks for the reassurance folks

[matthew55]

Once you have the official diagnosis it opens all the doors. Being terminal has it's advantages. From adversity comes opportunity. 😉🤗😁🍻xx

[PeterPan]

WheelsOfSteel Hi Eddie, I felt the same this time last year. Very guilty and uncomfortable. Previously, as a Citizens Advice adviser I’d helped lots of people with PIP, Attendance Allowance and ESA applications- sometimes having to explain to that not all the criteria were being met. I certainly don’t feel guilty now - my capabilities are well within scope!
The DS1500 process is a real godsend. To have a health professional complete a short form and take all responsibility is great. Best of all you don’t have to complete a 50+ page question booklet and wait months and months for a decision.

[Shaun]

You are not the only one Eddie , my progression is very slow, in fact I don’t think anything has changed in the last 6 months, I’m still mobile, still working, still playing golf, still drinking beer, saw my consultant last week , couldn’t explain it, just said keep doing whatever it is I’m doing and he will see me in 12 months
s.

[Olivia H]

You have been diagnosed, and even if you just get a little more fatigued, or are suffering very gradual weakness, you will need all the various supports, such as the blue badge etc. Despite the headline "2-5 years", in reality people can progress very slowly, or in short bursts and then long plateaus where there is little deterioration. I know of two people who are at 20+ years with it. Keep positive, keep occupied, focus on what you can do, dont dwell too much on the losses, adapt, still plan but also live each day🙂

[LindaB]

WheelsOfSteel enjoy all that you can do while you can. 😉🙏

We're all at different stages with differing progression it seems. Today I've showered independently (using shower chair) & enjoyed a lush tuna, mayo and cucumber sandwich I made for my lunch....but I'm aware that tomorrow or next week could be different. I may then need someone to help me shower or make me a sandwich. So I relish every achievement ...even something as simple as a sandwich. I don't take it for granted👍🏻😉😇

[matthew55]

Denial is a defense against despair. Everyone does it, and we all come out at some point. Don't beat yourself up over it. 😁😊😎🍻xx

[Rosemary6NT]

Good Morning Gang.
I can't help feeling like an impostor on this Forum. Only diagnosed a couple of weeks ago (after a year of symptoms) and, as the saying goes, I can still "walk, talk and chew gum at the same time" which are exactly the abilities that I may lose in the future.
I had my first home visit from my MND Specialist Nurse yesterday. She is going to submit a Form DS1500 (confirms the diagnosis) but I can't help feeling like a fraud sat here applying for PIP and a Blue Badge.
It's almost like I was wishing I was worse!
Crazy eh?

Noooooo! Not an imposter. Make the most of what you have for as long as possible. I felt the same at first but put it down to denial. Reality will assert itself at some point

[Ellie]

I can still "walk, talk and chew gum at the same time"

Long may it last Eddie.

Any idea which type of MND you have? xx

[matthew55]

Don't worry Eddie you will catch up soon. Just enjoy it while you can. 👍🤗😁🍺xx