Weight loss

[mandg]

Morning, is anyone experiencing weight loss, I know my husband is not eating such hearty meals as he used to, due to the swollowing situation, and he has muscle loss due to inactivity, but just wondered if the weight thing is common? He has just seen a Doctor who is investigating something, but may not be related. Just a thought!

[ReverendBadger]

Weight loss appears to be a not uncommon problem from both what I have read and speaking to others. I was PD dx in Mar 21 then MSA 26 May this year. During the time from March 21 to now I have consistently lost weight at approx the same rate. Dropped from 10.5-10.75 stone to just under 9. I have managed to put a couple of pounds on recently due to extra effort to shove more calories in e.g. eating a full bar of chocolate in the evening.

On 26/5, when I first heard of MSA, my consultant said she was concerned about my weight loss so ordered a full blood test, which turned out 100% OK. The consensus seems to be a combination of;

1. Eating less (for whatever reason; depression, swallowing problems, excess saliva/drooling, tremor making it difficult to eat, food going cold as it takes longer to finish a meal)

2. Burning more calories maybe due to hours a day of tremor. The energy for all that muscle twitching has got to come from somewhere.

3. Autonomic dysfunction of the intestines..i.e. less efficient at extracting energy from food.

For me the experts are not doing anymore tests and the wife is preparing me bigger meals, if it gets cold we zap it in the microwave. Eating a bar of chocolate a night would not be what anyone calls "healthy" but my cholesterol has always been really low so it works for me. I am

also addding more eggs to my diet as long as they are properly marked "cadbuy's" and "creme".

Joking aside. weight loss should be discused with one of the medical team just to rule out any other possibilities. Anyone with MSA can of course have other things at the same time. Once that has been done via blood test or whatever just try upping calorie intake by at least a few hundred calories a day.

It may be worth trying to get a dietician on your MDT. I have it on my list of things to ask my consultant when I see her next (will be soon),

Hope that helps,

Ken

[mandg]

Thanks for that Ken good information. I also gave been increasing the egg intake , but think I'm getting the wrong ones😁

[Paul_and_Sue_Wood]

Hi

Weight loss can be attributed to many things with swallowing difficulty the main issue. Saliva production and loosing your taste can also come into play.

My Sue developed all these and we opted 4 years ago for a PEG which enable balanced food supplement to be taken and thus no weight loss.

Something to consider and chat about with consultant and dieticians.

Paul

[MF31 in reply to Paul_and_Sue_Wood]

Hi Paul-sue we are waiting for Pete to have a appointment for peg consultation as he has lost a lot of weight over time and dietitian thinks top ups with it will be good as his fluid intake is also poor have you found this has worked and do you incur many problems.

[Paul_and_Sue_Wood in reply to MF31]

Hi

To put it simply it has been a life saver..

It is intrusive, but after a while, you get used to it and it makes life so easy.

It doesn't stop eating or drinking, in fact, the dieticians insist that whilst you can you do still eat and drink what you want, thus it's still a pleasure. What it allows is a control of the diet, nutrients, meds and fluids so that the sufferer is getting all they need.

Keep the site clean all the time with clean water.

Flush the peg through all the time.

Sue is 5 years on hers and its still very good state of condition.

Good luck

Best thing we did.

Paul

[MF31 in reply to Paul_and_Sue_Wood]

Thank you so much for your reply still waiting to get consultation with gastro hopefully won’t be to long but as things stand who knows.

[Hidden]

In the UK your GP can refer you to a 'nutritional support dietician' who can advise how to pack calories into small amounts of food, and issue high calorie drinks (for when the MSA person can't eat much) on prescription. One of our faves was homemade marzipan smoothies! It's worth getting a decent blender. Loss of taste and smell was an issue for Dad so it was helpful to make food with good strong tastes. Kx

[mandg in reply to Hidden]

Thanks you, I`ll look onto that and hopefully get the calories without too much sweet stuff, but at this stage does it matter??

[Hidden in reply to mandg]

Yeah if you can get on top of it sooner, you can try to slow down the progression of the weight loss as much as might be possible. Obviously some of it will be due to muscle atrophy, which you can't always do much about. A healthy varied diet is important but our understanding was that calorie intake is even more important. The dietitian basically said fortify everything with butter, milk, cream etc - whatever is calorie dense, because the person will be burning up a lot of calories just keeping body and soul together, as it were. The idea is to delay the issues that come with advanced weight loss such as pressure issues with the skin etc. Kx

[writerinlimbo]

My husband lost a lot of weight following his MSA diagnosis and found the flavour of many foods (and alcohol) became quite unpleasant. The disease rampaged through him very quickly and he refused a PEG. So when it became difficult for him to move food around in his mouth and swallow, he became extremely thin. However, as the doctor said, a PEG will not slow down this disease, it just makes it easier to take in nutrition and medications.

[Honghua]

We saw a dietician about 3 years ago.My husband has always been a skinny wirey person .

He had weighed 60 kilos and it had gone down to around 52.

That's approximately 9 and al half stone to about 8.

Quite frankly I was horrified at their advice.

Cream butter fortified milk to be added to every meal . I was give a recipe to melt mars bars with cream and the fortified milk to make a snack.

We were given a list of snacks to have throughout the day.

Pork pies, sausage rolls mini trifles.

We are veggies good job we weren't muslim or Jewish!

No mention of healthy fats as in avocado.

He streams mucus so that amount of dairy would be a disaster. Never mind what the sugar hits would do for his blood sugar .

Msa plus diabetes 🤔

Appalling

[ReverendBadger]

Services/Dietetics/117582_Prevention_or_treatment_of_weight_loss_High_protein_high_calorie_information_(279)_[April_2018].pdf