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Worried daughter

Hello everyone,

My mum’s diagnosis of RRMS was changed to PPMS on Thursday. I think everyone apart from mum had suspected PPMS due to age of onset and symptoms but it was still a shock. She is pleased that she does not have to worry about any new relapses, though.

The last year has been quite difficult for her and 12 month after initial diagnosis her neurologist said there was a clear decline in her neurological examination. I am TERRIFIED that this will progress quickly.

She experiences severe pain after walking for 30 mins or so, and the GP has been really unhelpful prescribing a painkiller that she can use when she experiences this pain.

I am taking her to Disneyland Paris at the end of next month with the rest of the family, to give her something to look forward to. I am really concerned as I think it’s going to be really hot / lots of walking involved. I have read that she should keep out of the sun as much as possible as it may make the MS worse? how true is that.

Have any of you got any tips to make this trip easier on her? It seemed less daunting with RRMS.

Thank you all so much, you’re all great here.

Lucy

Hi Lucy, First of all what a lovely daughter you are. Yes you are quite right about the sun. For me the sun and the heat effects my MS symptoms badly. All I do is limit being in the sun, keep well hydrated, use a battery operated fan and stay in the shade as much as possible. Sorry I can’t really suggest anything else, if you can keep her as cool as possible the better.

i hope everything goes well. Jane X

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Hi Lucy, would your mum be happy to use a wheelchair or even a mobility scooter I think many of these places would be able to provide one to hire for the day or you could take your own light weight fold up version. I hated the wheelchair at first but now it’s become a life line for me . I started with a manual one from the nhs , I must admit I felt embarrassed at first I was in my late forties and felt far too young. My older children used to push me and the youngest one aged only 10 would sometimes sit on my knee she was only light . Eventually I bought a second hand power one …and then I grew to love it. It gave me my freedom back. It takes a while to come to terms with changing abilities and what is right for one person isn’t for another. Jane gave good advice about keeping cool , I hope that you have a lovely time. Michelle and Frazer xx

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Hi Lucy

You are obviously a very caring daughter as you have your Mum’s best welfare at heart.

You are right about the sun and the heat making MS symptoms worse, so always have plenty of fluids around, a small fan if you can, and yes I agree with Michelle, either take one or hire a wheelchair for your Mum to use. Saving her energy by not walking will mean she has a much better holiday, and so will you.

I have had a power chair for many years now, and whilst in the beginning I felt very self conscious, believe me it was the best choice I made, not only for me but my husband and small children as well. I hasten to add they are fully grown now with children of their own.

Hope you all have a wonderful holiday.

Pam x

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Hello Lucy

It’s not so much the sun that’s bad for MS, it’s heat. Although some people actually find they can not only take the heat, but it actually makes their MS symptoms better.

It is more likely that heat will make your mum’s MS symptoms, especially fatigue, worse.

With regard to walking, she’s doing well if she can actually walk for up to 30 minutes, but the other replies are right, a wheelchair, or scooter would make Disneyland easier for her. Most big attractions like Disneyland, theme parks, zoos, etc have scooters or wheelchairs available for the disabled to use. Have a look at the website for what can be borrowed for the day. Or maybe consider buying a wheelchair to take with you. That would help with all the travel, not just while in the park. But see how your mother feels about using a chair first.

Obviously, she could be referred to Wheelchair Services in the long term to see if she can get one from the NHS, but not soon enough for your trip to France.

Many people find that their progressive MS is quite slow in terms of disability progression. And in some ways, it can be easier than Relapsing Remitting MS, because it doesn’t have the damage done by sudden relapses, so I can understand your mum being glad she’s not going to suffer relapses. Others do find their progressive MS gets worse quicker. So your fears may also be warranted. Hopefully she’ll be progressing very slowly.

Enjoy Disneyland.

Sue

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Hello Lucy,

It must be frightening to see the diagnosis change. I can understand the shock - I am in the process of being diagnosed with PPMS myself, and it’s not a club I want to be part of but we are where we are. They way that I am dealing with it is that the progression will hopefully be so slow as to be barely perceptible. If she can walk and only gets tired after 30 minutes, that is actually pretty damn good. Maybe having a mobility scooter would help on the trip as a backup?

As for heat, I have to say it makes absolutely no difference to me, and in fact it seems to be the cold that saps me. So maybe it’s different for everyone?

Keeping my fingers crossed for you all,

Anne x

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Sorry to hear your mum is struggling what age was she dianosed? All the Disney parks have scooters and wheelchairs you can hire. As for heat im the same as Anne im fine in the heat as long as im wearing a hat and sunscreen but l cant tolerate the cold. I hope you all have a lovely time. I have been to Disneyland and Disneyworld in America but not the one in France

Hi you can sort out ‘Special Assistance’, when travelling by air to Disney land for your mum.

You could buy a wheelchair before you go to be honest i bought one off ebay for 54.00 light weight brilliant have had it six years now.

If you take a wheelchair your mum can at least rest. I know she probably doesnt need one normally but being away will allow her to enjoy it more, and yes the heat can be bad.

A cooling vest might be an investment too.

What a great daughter to think of her mum like that. I hope you get it sorted, but do use Speical Assistance at the airport and take a wheelchair you have to do it prior to travel though ok.

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It’s probably a good idea to road test the heat issue before you go. A bad reaction to the heat is called Uthoff’s phenomena and it doesn’t bother everyone. Going back to times before MRI machines, a hot bath was a diagnosis tool.

I do suffer with the heal my legs turn to jelly but are so heavy. Like walking thru wet concrete, Hope it’s not a problem for her.

Sonia x

Hi Lucy, Firstly I am sorry about the change in your mums diagnosis. My son was diagnosed in Jan this year. The consultant said he thought it was RRMS but I am thinking its PPMS because I see a significant deterioration in him since his diagnosis. He struggles to walk after a while and can hardly lift his feet. How was your mum rediagnosed?