Is there any evidence of diet slowing PSP progression?

[cmorris975]

Hi there,

I have a neighbor who was just diagnosed with PSP. She’s 85 years-old but in great shape physically and mentally. I am 45 with MS and a host of other autoimmune issues.

I’ve found that eating a paleo diet, along with stress reduction and light exercise, has really helped me out. Before I go proselytizing to her about the evils of sugar and gluten, I’d like to know if there have been any studies in this area with PSP? My assumption is that eating well will help anyone to feel their best, sick or not, but I also try to be mindful of others’ habits. I realize that for some the sacrifice of giving up foods they love may not be worth the trade-off in health. Especially if it is not proven to help.

Some quick google searches seemed to give conflicting information, although there does seem to be an inflammatory component to PSP.

Funnily enough, the reason I know this lady is because her son has a farm and we source our grass-fed meats and liver through her. She’s already got ready access to some healthier meats at least!

Thanks for your thoughts,

Chris

[dollydott]

Hello Chris

I am so sorry to hear you have MS at 45 you sound like your doing the best you can with your diet and I wish you well

How kind of you to look out for your elderly neighbour and i am sure you will get some good responses here.

My mum has just had her 82nd birthday and I don't worry too much about her diet she has CBD which like PSP is progressive and takes away so much. I let her have what she likes and that I know she will eat. Exercise is very beneficial though.

Take care and look after yourself

Lynda 😊

[NannaB]

During the years I nursed my husband, I read how certain foods may help PSP i.e. coconut oil (they didn’t help) but no special diets. As I knew my husband would go from normal food to chopped, to mashed, to puréed and to PEG, I gave him whatever he liked making the 6 years he had left the best I could for him. He was 69 when he died. It’s good you have your neighbours best interests at heart and I hope your diet continues to help you but after seeing what my husband went through, I would tell her to do whatever she likes now, before it’s too late including enjoying her favourite foods. Before PSP we both ate very healthily. Once I realised it made no difference to him I let him have as much of whatever he wanted until it became unsafe for him to eat certain foods. Even with a PEG he could still eat by mouth ice cream with a dash of Bailey’s poured over. Oh how he loved that almost until the end.

XxxX

[Pagesofwords]

I don't know about research studies but I tried to change the diet of my sister who had PSP (she died in July of 2018). The diet I was using was actually for people with MS, the Wahl's Protocol. Have you heard of this or tried it? The founder of it cured herself of MS with the diet changes. She is a University of Iowa physician and research scientist who used to be unable to walk several years ago because of MS and was in a lay-flat wheelchair. She is amazing and today bikes to work and travels the world describing her diet. I listened to her talk in our town's bookstore a couple years ago. Desperately, I asked her if the Wahl's protocol would help PSP patients. She did not know. I tried it. My sister couldn't tolerate it, however. Lots of vegetables at every meal. They made her feel sick to her stomach and affected her bowels. It was too hard on her. She stopped accepting the changes though continued to eat gluten-free for several months, even in the nursing home. Maybe if we had started the paleo diet earlier, before she became so sick, maybe it would have made a difference. I don't know. I have read that many diseases start from our gut. We have to repair the gut to prevent various brain diseases. I wish you and your neighbor well. Your neighbor may need your presence and other people's presence and emotional support and care more than a diet change. PSP is a terrible disease.

[HilsandR]

Hi Chris, I have to agree with the other responses in that PSP/CBD etc are progressive illnesses and the irreversible damage to brain cells has already occurred long before diagnosis, so I don't think a change in diet would have much of an effect other than make the sufferers lives even more miserable. As it is, most end up on a puréed diet, which lets face it, can't be the most appetising on a day in and day out basis and some eventually end up being peg fed. I think your concern for your neighbour is admirable but I think if she is still able to enjoy her food then she should eat what she wants, when she wants. I read about the miracle of coconut oil in the early stages of R's progression with PSP and persuaded him to try it. A waste of time and money and took away the enjoyment of his food as he couldn't stand the taste. In his final year he wanted chocolate just before going to bed, he'd never ever done that but if that's what he wanted then that's what he had. The day will come, I am sure, when the culprits that cause these hideous diseases will be found and given the rarity of PSP I suspect that diet won't have played a part but who knows? Exercise, to keep the muscles strong was definitely beneficial for my husband.

I know that great strides have been made in the treatment of MS as the daughter of a friend has it and she has made great strides using a new treatment, so I do wish you well for the future and it's always interesting to hear the views of others. HilsandR

[Hidden]

Good Morning Chris, all the answers above are excellent.

My mom had PSP. She was in her 80's & keeping weight on her was difficult. Personally, l think eating healthy is wonderful for those who choose to do so. Exercise is great for everyone but mom's balance issues made it difficult.

I am 70 and since I have lost loved ones, well l have decided to enjoy my nutritional supplements: cookies cake, pie, donuts, ice cream and ChocolateCovered Strawberries. In fact many times l eat my desert first (before my meal... because if l choke & die during diner... l will die happy because l had my desert first). Choking is a horrible part of PSP so l did not make this decision lightly.

If l were you l would ask your friend if there is anything you can do to make her life easier & share life stories over a cup of herbal tea. I like Ginger & Tumeric Tea both are good for inflamation. Sending hugs... Granni B

[Dadshelper]

Dad's diet never changed during the course of his CBD, how it was prepared for texture did. I know the last 18 or so months the dietitian was pushing as much extra protein as possible to slow down muscle mass loss. In the end that didn't matter either as he was less then 120 pounds.