MS awareness: Worthing group says more needs to be done

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WITH the news that celebrity Jack Osbourne has been diagnosed with multiple sclerosis, the profile of the neurological disorder has been raised.

But according to a group for the husbands and partners of women with MS, more needs to be done to raise awareness of the condition.

We Are Not Carers (WANC) meets bi-monthly at the Windsor Hotel in Windsor Road, Worthing, allowing the men to share information and their problems, as well as socialise.

I was invited to attend last week’s meeting, and what was repeated by several members was that even the simplest of tasks or outings are often made more difficult by people not knowing about or understanding the condition.

The symptoms of MS manifest themselves differently in each person, but some of the most common are sight problems, fatigue, bladder problems and stiffness or spasms. In some cases, sufferers end up in a wheelchair.

Chris Manners, whose wife Lisa uses a wheelchair, said a trip to a wedding proved to be quite difficult.

Chris, 43, of Goring Way, said: “We had rung the hotel before going to tell them Lisa had MS and to check it was wheelchair-accessible, and they assured us it was, but when we got there, there were two steps up to the entrance.

“Luckily, the bridegroom is a Paratrooper, so he and some of his friends were able to lift her in, but it isn’t nice when something like that happens.”

Others reported having problems at their own doctor’s surgery, where specialist weighing scales for people in wheelchairs are not available, and even at the hospital, when a hoist was not available despite assurances in a phone call ahead of the appointment that there would be one.

The group is run by neuropsychologist Jo Johnson and MS nurse specialist Lisa Black, and has been going for more than four years.

Hard for whole family

Jo said these experiences are not unique, adding: “Things that we all take hugely for granted can be a big deal for somebody with MS.

“You have to go through the routine of seeing if things are wheelchair-accessible, you get hit in the face with people’s bags and you can’t always do the things other people your age are doing.

“But it’s hard for the whole family, because this is not the life the person envisaged for themselves, or the family members thought they would have themselves.

“That was the idea behind starting this group, because it’s the principle of universality, meaning people feel that they are in it together.”

Members of the group are people Jo and Lisa have got to know through therapy sessions, or the treatment of their wives.

Lisa said: “We decided to do it, because Jo used to work in the NHS, and sometimes by the time the husbands or partners got to her for therapy, it was kind of too late – it was reactive rather than proactive.

“By starting something up, we thought we could help people cope with dealing with a long-term condition like MS.”

Helping acceptance

Mike Hole, 62, from Durrington, said the group had gone a long way to helping his acceptance of the condition.

However, he added MS still presented a lot of challenges, such as the planning of a simple shopping trip. He said: “Most people who go out shopping just get up and go, but we have to plan where all the toilets are.

“Also, my wife can’t always get up and out at 9am, so before you leave it’s 10.30/11am and the day is half gone.”

But despite there being many challenges to face, Leslie Lemere-Goff, 87, said he and his wife Patricia, 76, had had many positive experiences.

Leslie, of Hill Farm Way, Southwick, said: “We recently went to the Chichester Flower Festival, and people were very helpful.

“I had been worried it might be difficult, but people gave us lots of room to get through.”

One of the original group members, Graham Bashford, of Cedar Close, Angmering, said he was reticent to join at first, but was very glad he had.

His wife Kim, 49, was diagnosed with MS six years ago, and now uses a wheelchair.

Anybody who would like to join the group should contact Lisa on 01903 846560 or email lisa.black1@nhs.net