OMS Diet Motivation & Support

Hi all,

I hope everyone is well

My mother has SPMS and has been on the diet (me driving it) for a few years, This has helped slow down her rapid decline but not really made her any better. Also as a result she has lost quite a bit of weight.

At the start of her time on diet she was all for it, but sadly her cognitive function has wavered a bit since then so over time it's become mine and my dads responsibility to make sure her food is OMS friendly.

Her "dietitian" and MS nurse have said repeatedly that "diet doesn't affect MS so she should eat what she wants", I have obviously pushed back on this as she is much better than she was before the diet and has stopped declining. This has sadly fallen on deaf ears.

Because mum isn't fully "with it" at the moment (actually due to my grandmother sneaking her very bad food), she has alarmed the MS nurse by saying that the diet isn't of benefit to her and we as her carers don't allow her to eat what she wants. She also added that if she eats food not on the diet, I get "angry" (frustrated yes, but angry is definitely not the right word).

As a result we believe they have made a POVA (protection of vulnerable adults) referral saying we aren't feeding her the right food and she has lost too much weight.

I should point out that we pay £500 a month for a private chef to prepare mum 3 OMS meals a day + treats, so mum is anything from "malnourished".

I wonder whether anyone else has suffered anything similar and how they went about explaining the diet to the MS nurse/social workers etc. I'm very scared our only option is to stop the diet and i'm very worried about what will happen to mum if we do. To add to this I am getting married abroad in June 2018 and if mum declines anymore she may not be able to come

Any advice would be greatly appreciated.

Lucy xx

Hello Lucy,

What a horrible situation to be in. Your mum is very fortunate to have you doing so much to improve her situation and it must be incredibly discouraging to have to fight your corner like this.

First of all, weight loss (or gain) is quite a common MS symptom so your mum's weight loss may not have anything to do with the diet. (Weight loss was certainly one of my symptoms. I had become quite underweight by the time I learnt I had MS. Two years after starting OMS I am back to a healthy weight.)

Your mention of a POVA suggests you are in the UK. Is moving to a different consultant / healthcare team an option for you? We do have that right within the NHS. My partner was so appalled by the iill-informed, dictatorial treatment meted out to him at the local hospital that he switched consultants and now drives 60 miles to another hospital for appointments (and receives first class treatment).

Incidentally, it might be an idea for you and your father to consider a medical power of attorney. Many of us think a spouse or relative has an automatic right to be consulted when a patient cannot make decisions for themselves anymore but - without a medical power of attorney - even a spouse can be completely overruled. It might be worth looking into?

Although I have only known about my MS for just over 2 years, I was actually officially diagnosed 15 years ago and - with the wisdom of hindsight - had my first symptoms 25+ years ago. So although my neurologist has me down as RRMS, the time that has elapsed since the first symptoms along with mobility problems makes me suspect I am probably SPMS like your mum. In addition to being on the diet for just under two years I have taken quite a few other steps that appear to have made a major positive improvement in my cognitive function (additional dietary measures, supplements etc). I'd be happy to let you have more information if it might be of interest to you.

As regards your mum sticking with the diet, would it be possible for everyone in the household to eat an OMS diet? If there was no other food in the house, perhaps she would not feel she was being deprived by having a 'special' diet?

And then you have your doubtless well-meaning grandmother sneakily passing her daughter unsuitable treats. Easier said than done, I am sure, but is there any way you could somehow expose your grandmother to OMS success stories and let her 'discover ' the programme for herself? Most of us hate being told what to do, but if we can be led to think that X, Y, Z was our own idea all along it becomes a very different story. Would she look at the book if you gave her a copy, or at print-outs of success stories from the website?

Or talk to someone who has benefitted from the programme? The 'Location' part of the forum might help you find people in your area who'd be happy to meet up.

If there are particular foods or dishes your mum is missing, you could mention them here and forum members might be able to help with suggestions for OMS friendly alternatives?

I hope you are looking after yourself too - keeping up good levels of Vitamin D3 and Omega 3?

I wish you and your family all the best,

Jette

Hello again Lucy,

I have been thinking more about your situation. The most pressing issue for you is obviously the protection order you fear may have bern instigated. It strikes me that this issue is something the OMS office might be able to advise you on? Quite apart from the fact that earlier forum posts testify that the office is staffed by lovely, helpful people the OMS charity would have a vested interest in combatting a POVA n the grounds of someone being 'malnourished' by the OMS diet.

Just a thought.

All best wishes,
Jette

Hi Lucy

I have said this before on other issues, medical people have to prove they have ticked the boxes. If your mother has said she is not being fed properly they would have to look into this.

That being said it does not help with the stress you are feeling at the moment! The first thing I would say is be sure there is a referral. You said you thought there was one. These people will be used to dealing with people who are wandering a bit, and as a result hitting out at those closest to them.

The other thing I would say is you employ a chef to cook meals for your mother. This points to a family really taking an interest in her wellbeing. Have proof of this ready, in case you need it.

I hope this helps and try to stay positive.

Valley

Hi Lucy

Sorry to hear about your situation. Jette and Valley have offered some great advice.

I just wondered if you have spoken to your mother's medical team in detail about OMS? Have you shown them the book or website and pointed out all the scientifically based evidence behind what we are doing? I sympathise as my neurologists really don't believe in the diet, but at least I am a position to make decisions for myself.

You say that your mother is in a bad way at the moment and blame 'bad food' given to her by your grandmother. I think it is important to recognise that OMS is not a quick fix solution and your mother's condition may have worsened even if she hadn't been fed 'bad food'. I myself blamed 'bad food' for a recent relapse I experienced, but Prof Jelinek was quick to point out that OMS is not a guarantee against relapse.

I hope you manage to work through this difficult situation. You know you have a large number of people fighting your corner from the OMS community.

Rachel

Thank you all SO SO MUCH for your kind replies. I am very busy at work just now but will get back to you as soon as I can.

xx

Hello again, Lucy

Just in case you revisit this thread, I thought I would post a link to an ongoing 12 day US-based 'webinar' on reversing / halting / avoiding Alzheimer's & dementia. There might conceivably be something of relevance to your mother's situation?

Each day's talk is only available for 24 hours so an investment of time would be necessary if you were interested.

I was quite interested in the mention in the introductory talk of what is now being referred to as Type 3 Diabetes - essentially linking spikes in insulin levels to the onset of dementia. I imagine this would translate into advice to avoid sugar and simple carbohydrates

http://event.awakeningfromalzheimers.com/fb-a/

Jette

Hi again,

I just opened this feed to give you an update and I can't see the long message I wrote back in September?

i'm so sorry you must have thought I was so rude not replying Not sure where it went!

Unfortunately abruptly stopping the OMS diet correlated with mum being hospitalised twice as she was choking. We then returned to strict OMS diet as the whole family agreed it was the best plan, to see what the impact would be. She's not choked since Xmas day now. Yet her awful MS nurse saw her this week and has now flagged her again and said she should come off the die due to weight loss and us "depriving" her of what she wants to eat.

I'm at my whits end, I'll have to have a meeting with her to discuss it properly. But to be honest I am worried that I will get infuriated and come off as "controlling", only further fueling her opinion that we are neglecting mum.

I'll take on board your comments and try and see if I can put her in touch with someone in the OMS team

Thanks for all of your support last year and I hope you are all doing well in yourselves.

Lucy x

I have a thought that the OMS team in the UK did a presentation to MS nurses I think, I wonder if there was an information pack they may still have, perhaps if when you contact them they may be able to offer help specifically.
Sorry to read your update on your MS nurse situation but was glad to read of your family uniting together on approach and your Mum's improvement on choking reduction since.
Look after you too.

Great idea!! I've already dropped them a note with a brief overview asking who I can put the MS nurse in touch with, but I'll be sure to mention that! That would be a great help

Thanks so much for taking the time to give me advice, I'm so grateful x