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Petrified!!!

Diagnosed with PPMS on Tuesday morning. Not a great surprise to me - I had convinced myself for a while I had MS. I was very calm when the neuro told me. Even when I saw the MRI image on his screen and all the white spots. I came home and, with my wife, was in a “doing” mood. Phoned the DVLA, car insurance company and the critical illness insurance people. Yes - we had a cry. I don’t want to accept I’ll never run the marathon again. This morning, I received a bulky envelope from the MS people (no letter enclosed) containing various leaflets about MS. I know it’s all sound advice but it has suddenly hit me. I’m petrified. I don’t want my 2 daughters to see me shambling around, needing help with even the simplest of tasks. I’m a man. It is my job to protect and (with my wife) provide for them. Someone, anyone - tell me something to put a smile on my face. Sorry for the negativity. I used to be such a laugh!!!

Hello Ally,

I took the liberty of seeing your occupation on your profile. I assume that your job may involve a lot of time on your feet and going up and down stairs! Unfortunately you MS will affect this. The rate of this will depend on the speed of the MS. It’s a real bxxxxxx I’m afraid. I was diagnosed with PPMS in 1993 expecting all sorts of drastic deterioration and humiliation. This didn’t happen. I was able to keep working for the next 22 years. Beingopen and honest with the family was really helpful as they were really supportive and made great efforts to become more familiar with what I was suffering from.

I was a little more cagy with my employers and only really told them fully after a good long time of proving my worth!

As it turned out everyone was very supportive and both I and those around me learned to manage everything. I even got married 10 years ago and now have a wonderful baby daughter. All I’m saying is that the diagnosis and impending symptoms did not signal the end of my life. There just had to be adjustments. The swimming, cycling and hill walking had to stop but they were replaced by other things. I can still travel and go to concerts etc. Most places are really accomodating. it’s a good idea to vent any anger and frustration on forums like this if only to see you are not alone. It’s also good for sharing jokes and observations, about the idiots who don’t understand, (politicians, architects or anyone going round with their head up their bottoms).

I hope this is helpful.

Steve Mc.

Hi Allyh… well I can tell you straight out that your reaction is textbook classic!!! It takes a few days to sink in then WHAM!!! It hits you like a concrete block! I can also tell you that you will be in this ‘up and down’ state for a while. You will get days when it’s ok and you can deal with it… and then (sorry to say) the old concrete block will hit you again.

Fortunately this emotional rollercoaster will lessen in time. While it is there though you can do nothing but roll with it. Cry, rage, rant and above all TALK. Tell your wife (and daughters if old enough) exactly how you are feeling. Don’t hold it in. It will fester and get worse! Talk talk talk until your throat is parched & you can’t say another word!

Ok next… let’s get this straight. PPMS is different for each and every one of us. We have a user on here who was dx over 40 years ago! Still living independently. Still getting around. Another user has been dx over 20 years (in fact it might be 27 years) and only recently gave up work… not because of her MS… but was made redundant.

Now as you know, it’s not like that for everybody… but most people with PPMS progress slowly. The chances of waking up one morning and not be able to walk or see are so tiny they are not worth considering (actually I don’t know anyone with PPMS who had that experience). For most of us it trundles along slowly.

For myself, yes I’ve had to make what sound like huge adjustments to my life. I walk with a stick. I use a mobility scooter. BUT none of this happened out of the blue. It was a slow process and by the time I made the decision… say to get the scooter… it was ok. It was just a practical decision. It was a case of slowly realising that getting to the shops and around the shops was a real pain in the rear end… I struggled on for a bit and then thought to hell with it… I got a scooter and hey presto… independence restored!!!

And just because I have mobility problems doesn’t mean that you will… it’s just that, what I’m trying to say, none of this will happen overnight. You’ll get used to it. You will in time change your attitude to disability… but that won’t happen overnight either. GIVE IT TIME!!!

Oh one other point… allyh… do you live in a cave? No? Thought not. Your wife and daughters need your love and your support. MS will not stop your ability to provide both of those. They do not need you to go out and kill animals or shoot arrows at invading tribes. Get a grip!!! You are still a man. You are still a husband. You are still a father. MS doesn’t stop you being who you are!

Great to see you on here and welcome to the gang… come back and ask us anything! We are the experts…

And in case you didn’t notice… I was dx 5 years ago (after several years of symptoms) and I can still write a long and detailed answer to your post!

One day at a time… say that to yourself every day. It helps.

Pat x

Thanks, Steve. Telling work is one of my biggest fears. I know I can’t realistically carry on doing the same thing. Why didn’t I just stick to that boring desk job?!!! Ally

Wise words, Pat. I’m typing this through floods of tears, but I know you’re right. I just need a hug from someone who knows what it’s like!!! X

Here’ that hug… ((((((((((((((((((((((((((((((((((((((((((((((((HUG))))))))))))))))))))))))))))))))))))))))))))))))

Pat x

And shoulders that can soak up a lot of moisture!!! Gotta go…preparing something delicious and worthy of my wonderful wife. Valentines Day waits for no man! Thanks. Maybe the world isn’t that bad a place, X

Hi Allyh

Here’s another hug (((((((((((((((hugs)))))))))) from one ppmser

to another, and flowers for your wife on Valentine’s day

Give yourself time, don’t beat yourself up about the dx, be kind

to yourself, and above all talk, talk and talk some more about it,

and take one day at a time. I promise you that life is still worth it,

even with ppms, just give yourself time to adjust,

Enjoy your valentine’s day with your wife.

{Pam x PS Sorry I forgot to say welcome to our “special gang”