weight and dietician appointment

[Zante]

Dear All,
I had my first dietician appointment recently ( telephone consultation) and my first slt appointment is early next month.
The dietician asked about my diet and typical food intake and current weight. There are a lot of background issues with food and weight which am not quite at the point of discussing openly on a public site, but can I ask some general advice? She said that I am underweight and so have a low muscle mass due to being low weight. She told me that the prognosis for people who are a low weight at diagnosis and subsequent follow up is poor and a far worse progression because already at a disadvantage and that the science has shown this. How is this? Why are thinner people at a worse starting point? and even after such an awful diagnosis of mnd has anyone else struggled with the thought of gaining significant weight? Even logically knowing that with mnd there is far more serious health worries, but I dont feel comfortable with piling on weight. For some reason this has taken me days to build up the courage to post and ask!! x

[denise]

Not that I'm an expert but I think if your are over weight and have muscles then your body has fat reserves it can use whereas if you are underweight theres nothing for it to work with. That's why everyone with mnd really does need to keep there calorific intake quite high because your body is running a marathon every day. Think of it as running your car and not putting enough fuel in.

So go and enjoy some nice food. It doesn't have to be rubbish just good wholesome meals.

Xxx

[Hope]

I am confused by this also. I had put on weight over last winter and was told not to attempt to lose it because I would be burning calories at a fast rate. Because of my poor appetite I have lost the excess weight over the summer but it was slow coming off so I am not convinced I am burning calories any faster. I have been told to eat snacks between my meals but the list of ‘100 calorie snacks’ I have been given do not seem very healthy to me. I am at the weight I would like to maintain but do not want to eat chocolate, sweets or ice cream all day. xx

[Heather R]

My dietitian has said that people who weigh more (for their size) have been found to have better outcomes MND wise those who take off a lot. I think the lead dietitian who left to do a PhD, is doing research on this. I was on a diet before my diagnosis because I knew I was overweight, and found it difficult to believe that I was doing myself a favour by eating fattening things. x

[Claireflo]

My dad took up boxing at 50 (now 70) and had no fat on him. He was horrified at the suggestion of full fat milk and cream to fortify food. He was happy to indulge in apple crumble (that he made with apples in the garden) and ice cream/magnums. We've been told he needs 3000 calories a day now. Whilst he's mobile he's only able to potter around with occasional dog walks, and despite the calories he's still skin and bones.

As denise has suggested it might help to think of it as fuel for the system and trying to increase intake of healthy foods or snacks as all extra will help xx

[Cinderella]

Hi Zante I understand where you are coming from, I lost so much weight - about 30kg going down to 50kg - in a short space of time. It was the 3 years of undiagnosed cancer making its presence known, approaching my 7th year of only recently diagnosed mnd of course, plus bereavement from losing my husband. I like being thin and like you thought better to be lighter as less to carry.

However, once the kidney was removed I got some of my appetite back - it is still easy for me to eat nothing though - and like you I read that being slightly obese is better for mnd. The thought of putting on 3 stones though!

A few weeks after diagnosis I got a letter from the dietitians saying to spread butter thickly (ok) and use condensed milk (no thanks), and other ways that were not for me as I don't 'do' sugar in things. More recently I have had a phonecall but nothing much said - 6 months had passed and I was now 59kg and had been eating all the things I would have limited before - so much high calorie food but also healthy fats like avocado, etc.

The most recent check was my leisure assessment 5 weeks ago and I was now 58 1/2 kg, so down a little. She said my BMI was just in range but I mustn't go any lower because my energy needed to come from my fat reserves and not from my muscles breaking down.

So from my experience, I would say it is hard to put on weight with mnd.

However, around a month before this I started taking the therapeutic level of Acetyl L Carnitine each day and have only now noticed that my clothes are fitting tighter - as always in the places I don't want (belly and boobs), but my calves look fuller which is good. This is an anticipated effect and so place it purely down to the ALCAR.

The dietitian was meant to call this week to finally meet me and also weigh me - it was cancelled at the last moment though and is meant to happen this week. I will update you as to how much I have put on! xx

[GillB]

MND puts your body into hypermetabolism so you lose weight. As others have said maintaining weight leads to a better prognosis. It is essential to up the calories with high calorie foods that the dietician will advise you on.

[Cinderella]

Hi Zante somehow my post to you got addressed to a different Zante? Oops!

[TinyLady]

I initially lost a lot of weight and had a really love chat with the palliative care consultant who admitted me to the hospice to stabilise my weight in February.

He explained that many neurological conditions burn more calories. So even doing nothing, we burn lots of extra calories (I confirm this must be true for me - I used to be very overweight and barely eat and put weight on. Not any more)

He also said fat has been shown to have a slightly protective effect on neurones in some studies.

So his advice was to really try to maintain a good weight. For me this is a slightly overweight BMI (I'm 150cm tall) to give me some contingency. I have a very narrow healthy weight range.

But I have at times wanted to try being slimmer while it would be so much easier to lose weight. I literally have to think of it like the reverse of a diet. I MUST eat enough calories including fat and protein each day.

[Zante]

Thanks everyone for the replies. I did notice weight wise its us ladies who have more opinions!!!
Cinderella same Zante... I added a labrador painting avatar!!

My bmi is apparently 16.7. I am muscular build from many years of athletics . The concept of eating full cream milk and high fat foods doesn't sit comfortably with me! I have issues with food to be honest and had hoped that would have eased after diagnosis but hasnt done. I also read that als increases metabolism but I don't know about pls. I have gained about 4lbs since this began thru a decrease in some activity and to be honest from " comfort" eating when having those down feeling sorry for myself days! The dietician is phoning again in 2 months time. I haven't been given a meal plan or anything but she wants to wait until the slt has seen me. She did say chocolate digestives are an mnd patients best friend!
thanks for the comments. It's nice knowing that even with the mnd that others still are also conscious about what they eat and weight gain etc. I thought i was the odd one who didn't like the thought of cramming calories and not caring about weight! Its a tough topic to be honest about. Xx

[TinyLady]

Zante - my daughter has a very low BMI, around 15.2 and is desperate to gain weight, so she makes sure she nags me to eat enough too. But, like you, she is athletic and trying to eat good quality nutritious foods. Not just calories. It certainly helps me keep perspective on how varied weight can be and that many of us have "history" with food.

I consider myself fortunate to love chocolate and ice cream. It does make it easier to top up!

[Ellie]

Zante Hiya honey, I applaud your courage - yes, there is a proven link between low BMI and reduced survival duration in ALS. I am not aware of any such link in people with PLS.

Even in people with ALS, such as me, it is only *one* factor in my survival, not the sole determinant - other factors playing into my survival include lung function, frequency of chest infections, general health, social and family interactions, the care I recieve, and self esteem, being happy and liking myself.

Factors such as depression, low self esteem and apathy towards life can have an equally negative impact on survival.

And lastly, you should never feel forced into agreeing to take medication, an intervention or a treatment, nor should you feel it is anyway 'wrong' to say No.

Love the avatar. xx

[Zante]

Ellie am gonna reply properly in a bit. I just need to pop my dog out for a soggy walk. .... better eat an extra digestive before departure xx

[Petey]

It's more to do with fat reserves than muscle mass at diagnosis. The body expends more energy to maintain function and mobility with reduced muscle mass as the disease progresses. Once eating becomes difficult, people often slip behind their usual calorie consumption and so fat reserves are used to continue to maintain energy levels.

There is also strong evidence to suggest that any patient regardless of illness is more likely to survive a hospitalisation if their body mass is in the overweight (BMI 26 - 30) but not obese category as illness often results in a decrease of food intake and higher energy requirement to fight the illness.

[Zante]

Ellie really well put thank you. explained everything very well. The dietician is very eager for me to do peg ahead of time and explained its not to replace physical eating but to top up nutrition as extra feed. The ironic thing is that the eating disorder I have doesn't mean I don't like eating, quite the opposite I love food and look forward to it. Its the mental side of it that prevents me from eating the lovely high calorie foods or a varied diet. I live off the exact same foods majority of the week and have a day sometimes 2 where I manage to vary it. Am going to be in a situation if I get to a point where I can't swallow the foods I let myself eat. So having mnd along side the food major issues is making things difficult. Also exercise, I eat better when have exercised. Worries me when mobility goes more how I will be.
I can't find many scientific articles about pls let alone pls and metabolism and weight etc. The consultant did advise me that the probability of this being umn dominant als is higher than it remaining pls, but either way its slow to progress so I hope I have time to try and change some of my sticking points.
thanks everyone for reading and understanding that an mnd diagnosis doesn't make all the other problems just go away. We are all different and cope with life in our own ways. Just want to say thanks for making this forum somewhere we can be honest. Xx