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Desperate for help with MS Diet/Exercise/General Advice

Hi all,

Hoping this forum can offer some help and advice as I’m not too sure where to turn and am at a bit of a loss.

I’ll try to break this down so it is easy to follow -

Background

My Mum is 66 years old and has been diagnosed with Secondary Progressive MS for around 10 years, though as is often the case it may have been underlying for much longer. At first it made little difference to her life, however over the past few years she has become increasingly disabled to the point she is now unable to leave the house unassisted and even at home often has falls, etc. Fortunately to date, she has not received any major injuries to date, and has things like a stair-lift and a wet room, however I am constantly concerned that it will only be a matter of time before she injures herself severely as a result of a fall.

I have attended various doctors/consultant appointments with her and the good news is that the consultant explained that her type of MS is the “least bad” kind, she is not prone to any major relapses (to date the only one of note was an episode of blurred vision which was treated with corticosteroids), and her prognosis is that with the right diet and exercise she will be able to lead a life similar to someone of her age without MS.

However, it is also of importance to note that she suffers from severe depression, compounded by her MS, which has led to a vicious circle. She was unable to attend the physiotherapy sessions offered to her due to being unable to interact with other people (it was group therapy) and took a dislike to the physio she was assigned. She also finds it very difficult, if not impossible to motivate herself to do any exercise at home, or eat adequately. Again, this is compounded by the fact her illness has robbed her of the ability to take part in activities she previously enjoyed, such as volunteering at a local stately home. She feels at a loss, like there is no point in making any improvements. She is receiving help for this, and has done for many years but is currently waiting to see someone specifically relating to her mental health problems and how they affect her MS, however as is often the case with this, there is a long waiting list.

To finish, and again compounding matters and creating a vicious circle, her total lack of exercise (while her stair-lift could obviously save her life, it means she doesn’t even walk up the stairs anymore, and her falls mean she is to scared to walk and only tends to shuffle) and poor diet has caused muscle wasting which means her falls have become worse. Whereas the initial loss of balance is of course caused by the MS and cannot be helped, she is unable to do anything about falling uncontrollably due to an extreme lack of strength and agility.

Solutions

Despite the above, she is desperate to make changes which will make her life better and improve her standard of living. I am willing to help her out as and when needed, but she is quite insistent that her illness should not become a “burden” on anyone else, especially if she can do something about it. However, despite being quite fit and strong myself, I am totally clueless as to what is required and what might help her. Both of us therefore have a few questions I hope people can help with -

  1. What sort of exercise plan would be recommended for someone in her condition? Again, I am willing to help her with this on a regular basis, but while I’m used to training and offering advice to friends who come to the gym with me, I have no idea where to begin here. She does have the MS Society exercise DVD which seems like it could help (the one presented by the guy who played Mr Motivator) and was wondering if people think this is a decent routine to follow, or if people have any other routines/advice/links they could offer?

  2. Does anyone have a diet plan that is ideal for someone with MS? Again, I am more than familiar with diet plans to help guys who want to put on muscle, so this is a totally new area for me. I have seen some basic advice online, but it all seems a bit scattered and “obvious” if that makes sense? Of course, I realise that healthy foods and plenty of fruit and veg are ideal, but was wondering if there’s any diet plans/recipes I could show to her?

  3. This is kind of a sticking point as most of them are required, but she on various medications for existing conditions, such as anti-depressants and clonazepam for temporal-lobe epilepsy which affected her briefly many decades ago and has been kept in check since. She is obviously very fearful of coming off these tablets in case it returns, despite a GP nonchalantly suggesting she’d “probably” be OK without them, but I note a few threads/articles which suggest clonazepam can have an affect on balance and muscle strength. Is there a list of medications that could affect MS negatively?

  4. Finally, and as I said above she will need some more help with her mental health issues first so this is more out of interest for now, but are there support groups in the local area (North West England) that might be able to offer some help? I’m not sure what help she might need/accept at the moment aside from the above, but it is always nice to know.

Sorry for the long post, but I do worry immensely about her, and have promised I will take some action to try to find some help. I am sure, given what doctors/consultants have said, that she can recover a great deal more mobility than she has at the moment, and in turn this will massively benefit her mental wellbeing. As I say though, it’s all a bit confusing and I’m not too sure where to start, so thank you for reading!

Sounds like she would be better off in sheltered accomodation. Still having her own space, but maybe bungalow (elimating the stairs) but with alarm pull cords (addressing the falls). Indeed social services should have referred her to the Trips and Falls person. But I guess - and I know from dealing with my own mom - you come up against her resistance to change her home.

there are seated exercise classes, and you can search them out but sounds like you have hard job convincing her to go to one. It may be she has got into the mindset of “whats the point?”

Morning John,

l can understand that it’s difficult for both your Mum and for yourself. As far as I can see everyone’s MS is different and everyone’s attitude towards it is different. You say that your Mum was diagnosed with secondary progressive about ten years ago but your consultant has also said “and her prognosis is that with the right diet and exercise she will be able to lead a life similar to someone of her age without MS”.

I’m only a bit older than your Mum and was diagnosed with MS about 5 years ago but admittedly, not with secondary progressive. My doctor at the time said that the good news is that MS is generally not life threatening and that is true so immediately there was a positive thing. My own attitude at the time and still is now that yes, the MS is there, but I can use it to my advantage. Fortunately I’m mobile and it doesn’t stop me getting out and about but I do need to sleep in the afternoons and I know the things that I cannot do so I don’t do them, not for long anyway. I lost my wife to cancer a couple of years ago and I wouldn’t let the MS stop me caring for her during her 8 year illness and perhaps that helped me because I was focused on someone else rather than me. Now I’m on my own I do try and eat well, I cook proper food and deliberately meet people by getting out and about, especially visiting National Trust places and talking to volunteers etc. I also go to many classical music concerts. Although I can drive perfectly well I use my pass pass and Senior rail card to the full. For exercise I walk as far as I can and do what I call 45 degree press up against the kitchen sink and then backward stretches.

The reason I’m telling you all this is that I’m sure your Mum would benefit from just being out and about. I do understand that she may find that difficult but as an ex volunteer at least she has or has had the social skills. I too wouldn’t want to go to a group therapy session but close to me the local MS Society people arrange a coffee morning every month at a garden centre. Just coffee and chat with others and nothing more. It’s a group of about ten people depending on who turns up. No doctors, therapists or anyone serious, just people with MS of all types. Would she also respond to chatting on this forum? When my wife was ill we used the MacMillan community forum and it helped just talking to other people in the same boat. How about the theatre, cinema or just visiting old haunts? Could she get interested in researching your family history? Anything to take her mind off the MS.

I hope that helps and sorry if it doesn’t. I do understand the problem.

Keith