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Worried. Any advice?

In the words of Richie Benaud, “Morning everybody”. I was diagnosed with PPMS just over 2 months ago. Since then, my legs (right one especially) feel like they are deteriorating rapidly. I’m struggling to walk any great distances and the thought of walking up the pub, or round a National Trust Garden fills me with dread. I know my condition is progressive, but this quickly? Is it all in my mind? I don’t want to bother my MS Nurse if I’m panicking over nothing. Any advice will be appreciated, me being an MS “novice”!!! Al

Hello Al

Your symptoms have obviously been progressing before diagnosis-as you probably realise. In the early days I had some seemingly outrageous symptoms taking me completely by surprise. Once I’d come to accept there would be such occurences, things seemed to settle down and dteriorate more benignly. Understanding that you will have limitations is one thing while getting those around you to understand might be another! It can be difficult.

All the best.

Hey Al, It’s tough I know - I was dx’d about 16 months ago and since then my legs have deteriorated quite a lot. I have probably had MS for about six years though so it is progression over that length of time too. In theory, your MS may plateau and not progress for ages but I’m still waiting for my plateau - it hasn’t come yet! Your MS nurse is there to help and I’m sure she won’t mind you contacting her. A conversation with her may set your mind at rest. Keep us posted as to how things go - take care, Teresa xx

Hi Al & welcome…

Teresa and Steve have given you great advice.

Even though it is progressive, symptoms can still come and go… mine varies very much day to day (even hour to hour!). Sometimes my mobility isn’t too bad but other times it’s terrible!

Couple of things… one is that you might just be more aware of things now you are dx. Sometimes we are not aware that we have been putting off things like long walks… but when we get a dx we become more aware of limitations.

Secondy, the ‘all in the mind’ feeling is common… I still get it and was dx 5 years ago. I think it’s partly a denial thing… hard to accept what is happening to your body so you think you are making it up.

It’s a HUGE thing to learn to live with, so give yourself time, one day at a time, it does get easier. Remember, stress really does make symptoms worse… so you might be more stressed now that you are dealing with the dx, and that has affected your mobility.

Lots of rest and find ways to deal with stress if you can. Rest and relaxation can really help with MS. Are you talking to anyone about this Al? It really helps if you can open up to someone.

We are all here to support you… nobody knows more about PPMS than the wonderful gang on here… and it’s nice to have you in the gang.

Pat x

Thanks for all your replies. I am stressed. And I know the reason why. I’ve not yet told my father. I can’t bring myself to do it. I’m worried it will destroy him. He’s had to deal with the death of his son (my brother), 5 years ago and he was widowed about 2 years ago. We haven’t got a large family, he was an only child. I’m the only close family he’s got. I can’t bring myself to tell him. I know I’ve got to but I can’t bear to see him upset. He’s had enough to deal with. Every time I think about telling him I feel sick. My wife has offered to talk to him, but I must do it. Once he’s told, I may relax a bit, but it’s plucking up the courage. As soon as I sit him down I know I’ll break down. I feel like I’m going to explode.

It’s a tough call Ally. I know it’s by no means a bed of roses to the sufferer but try making light of it to your father.He loves you and he’ll understand if you tell him that you are limited with what you can do but it will never take away your father/son bond. Whatever your body prevents you from doing, your feelings will always be the same. MS is not fatal but it is a pain in the bum and you may find, selfishly, the support from your father to be helpful.

Stress is a big player in this MS “game” so the longer you leave it, the worse you will get and that’s not doing you or your father any favours.

Be as positive and strong as you can and post back on here if you have any concerns.

Good luck and take care. Remember we’re always here so come back to us if you want to before you tell your father.

I understand your reluctance to worry and upset your father. However, you will not be able to conceal your illness from him forever and he may well feel very hurt that you didn’t tell him. He would undoubtedly want to know what is happening to you. Screw up your courage in both hands and take the plunge! He will probably feel better and your father will probably be glad to support you in any way he can! Teresa xx

I mean, YOU will probably feel better. xx

Thanks for all your advice. This is the best place to come, where people know exactly how you are feeling. I’m going to fight my demons this weekend. Hopefully I’ll feel better for it. And watch the marathon, wishing it was still me!!! Al

I always find it especially hard when I see people run - not that I did much running myself but just knowing I couldn’t ever do it again even if I wanted to. You do grieve over the lost you - do remember that Al and give yourself time to deal with your diagnosis. It’s not easy. Take life a day at a time - it will get easier! Teresa xx

I know Teresa. I will accept it in time. It’s just that I’ve run the London Marathon twice and always wanted to do it one last time. Plus I want to beat my wife’s time. She holds the record in our house. By 8 minutes. I’ve told her I was slower because I had the beginnings of MS (!!!), but she’s having none of it!!! I still love watching it. I remember every painful step!!

Hi, just a mention which no-one else has mentioned.

I know walking outside can be terribly draining and frightening incase of trips or fallls.

So why not think about borrowing a wheelchair or scooter for days out?

A lot of places offer them now.

About your dad…hope you can find the right time to tell him. If he`s noticed a problem with you, he could be imagining worse!

luv Pollx

Hi Al,

All the above is great advice.

I had a similar problem. My father had died, leaving Mum alone. My brother in law was dying and was in a hospice. I was diagnosed. I did not feel I could tell my family. Eventually I screwed up the courage. First I told my sister. She told me in no uncertain way I should not tell Mum. Ever! I took her advice for a while. Eventually I felt I had to tell her. It was hard but I sat her down and asked her if she had noticed that my health was bad. She had. So I just told her I had been diagnosed with MS. She was bvery upset of course and there were tears. However she said that she had been afraid it was cancer. So actually she felt better that it was MS!!

I know it is difficult but I feel it would be better done straight away. Your Dad may be imagining things far worse. He will have seen that you are having difficulty, it cannot be hidden from those who care about us, however we try. He may also wonder why you hadn’t told him earlier.

Good luck with it. I am sure that it will be ok in the end. Your father may end up being a great help to you.

Lastly. I don’t know if this has been mentioned to you? Along with stress, the things you must try and avoid is becoming ill, even with a cold or flu. Any infection makes the MS symptoms worse, the infection in your body raises your core temperature. The infection can bring on another attack of deterioration. You must make sure that friends know they cannot be around you if they have infections. People just don’t realise how it affects us. A cold could take weeks to recede. I know, I have caught two from friends this year alone and it has really laid me low for ages.

May be worth talking to your doctor about having the flu jab? You are entitled to it as you have MS, along with the older people of society. It does not keep away all colds but it does stop the flu virus getting a hold of you. Anyway a chat may help you.

Sorry that you have had your diagnosis. Like others say, it takes a while to get your head around it.

However, this forum is great. I have made so many new friends, they always have an answer, if not practical then at least it makes me smile and cheers me up.

Keep in touch and let us know how you get on.

Life is not over, it is just different.

Anne

x

Al good luck with telling your dad hope all goes well I have had MS for over twenty years I was diagnosed 20 years ago and worked on and eventually have up about ten years ago my mobility is now rubbish but I have gone from one stick to two to crutches zimmer and now wheelchair & electric scooter. Keep laughing and tell your dad it is the start of a brand new adventure for all of you and he is going to be part of your adventure tell himm how lucky he is he never knew when you was a baby in a pushchair he would have the priviledge of pushing you round in a wheelchair as well. Not many dads get that pleasure.. Dont stress it is the worst thing and as everyone said stay healthy as for the marathon, the TV coverage is great and who care about eight minutes, I wouldnt dare beat my missus I know what side my bread is buttered on and would not want to take her title away. Good luck and welcome. XX Don

Hi Al, I can understand you worrying about telling your father.

I was very worried about telling my mum, then in her early 80’s. It was easier for me as I was already dx with ME 2 years before… but I thought the MS dx would kill her… esp as a close friend of hers had died from complications from MS in the 60’s.

When I did finally tell her she said “Oh thank God, I thought it might be Parkinson’s”.

So sometimes our parents know that something is wrong (well with my mum she knew it wasn’t ME).

When you do tell your father, remember to say how there is loads of research going on, new treatments on the way and a cure on the horizon (all of which is true)… and that modern medicine means that far fewer people die from ‘complications’ as they did in the past. In fact it is rare now.

Take care and good luck,

Pat x

The deed is done! Told him last night. Now I know why I love and admire him so much. Calmness in the face of adversity. I tried to tell him and broke down. He knew something serious was up. “Take a deep breath and try to talk” was his advice. I think when I blurted out the words MS, he was probably relieved! That 20 seconds when I was trying to talk must have seemed like an age. Probably thought I had something terminal. Still. It’s done now. Once I had done it, I immediately calmed down. Talking about our imminent holiday to the Loire Valley (he’s coming too. Got to keep the pensioners happy!!!). Warned him he’ll have to be the one chasing the kids!!! Onwards and upwards. My mate has just offered me 2 tickets to the cricket at Lord’s. Might treat my dad. Thanks for all your support. Al

Well done Al - I bet you feel so much better now. Your Dad sounds like he reacted exactly as you needed him to, good on him! You can just get on with the job of living your life now. I hope you have a lovely holiday in the Loire Valley. I am very envious of your tickets to Lord’s - I am a massive cricket fan, enjoy them! Teresa xx

Well done Al, that’s certainly as big weight off your shoulders.

Good that you’re keeping your sense of humour and by the way, can I borrow your dad!

You can. But he’ll drink all your best wine!!!

Deal. He seems like a damned good bloke so is worth it.

Are you feeling 100% better after telling him now?