Rapid weight loss

[2vonnie]

I'm new here. My husband was diagnosed with PSP in February 2016. But like many others a long battle to get the diagnosis. He has recently suffered severe weight loss in the last few weeks. Has anyone else had this happen?

[Julieandrog]

Hi newbie😀

Severe weight loss even though he was eating well was the original thing that sent Rog to the docs, probably start involving someone either practice nurse or dn's to monitor his weight , the earlier you involve all the agencies i found you won't be crisis managing.

Practically Rog has double cream on his pureed porridge with sugar and a glug of olive oil on most savoury dishes to boost his calories.

Welcome again to this very special group of amazing folk.

Julie

[easterncedar]

Yes, the weight loss was pretty dramatic once it started. I gave him as much high-calorie food as I could; in fact, with help from his love of sweets, I worked to pack the pounds on him pretty much as soon as he was diagnosed. It may have bought him some time. When he couldn't feed himself and the swallowing became a problem, I ladled cream and butter over everything. I often wonder whether I should have gone the PEG route, although the palliative care team were not encouraging me to think about that.

[enjoysalud in reply to easterncedar]

Hi easterncedar, my son was about 124 pounds when released from a 7 day hospital stay for his 2nd bout of aspiration pneumonia.

March. 2014, when symptoms first appeared he weighed about 170. He was 5'10". I'm sure when he died he was under 120 pounds.

During that second 7 day hospital stay, late March, 2017, he kept failing the swallowing test and agreed to a PEG. I have written several times that I think it was ALL decline after. He was fed every two hours after the end of each feeding.

The PEG limits what can go down the tube. Five weeks later he died.......he actually gave up being fed 4 days, +hours prior. He had barely turned 55 Years of age.

The PEG caused him pain (a few days after his return home). I assume this since he said his STOMACH HURT. He cried for several hours in the night. During his PSP illness, It was the only time I heard or saw him cry. I have often wondered if he was crying over the terminal PSP, but did not want me to know. At that time he could talk. He said it was his stomach. I DID NOT QUESTION.

My preference would have been for him to have been continued with mouth feeding. Choking was a fear, but manageable.......the aspiration pneumonia, when it came again, could have continued to be dealt with antibiotics. It was not my choice. My daughter said the PEG gave him hope.

What I have concluded with the PEG is that when put in earlier, rather than later, It appears to help.......maybe giving 4 months or more of life. Near the end, not so much. I hope my son's experience with his PEG provides some comfort for you. Each situation is different. That was my son's experience.

In two weeks it will be 6 months since my son's death. For the past month or so, I have been doing well, but then yesterday took a nose dive. Tomorrow Kaiser Hospice will be giving a memorial for those who died during the first 6 months of this year. I think what triggered this GRIEF was a letter from Social Security informing him that he was eligible for a goodly amount. It was a lump sum, but not the monthly amount he would have received. Money would not have given him more life, but perhaps greater comfort with more hired help.

Would I have wanted more time with him at the expense of his suffering? No.

All that i am experiencing I know is part of the grief process, and as I learned in my Kaiser GRIEF THERE IS NO TIME LIMIT, but almost always visible signs of improvement after two-three years, if not before.

While writing this reply to you I was on HOLD with Social Security with my question, "What would have been the monthly amount?" After about 57 minutes, I woman, Phyllis, came on the phone, I gave her the info from the letter, asked my question, and she replied, "I can't answer that". When I asked, "who can?"...... she hung up on me. I was a Sociology major at UCLA.......bureaucracies, ugg!!!

[easterncedar in reply to enjoysalud]

oh, my dear, my heart aches for you.

[Hidden in reply to enjoysalud]

You might try getting your Congress person involved. Social Security pays attention to them when they call. Send your Congress person an email or call them.

Social Security isn’t allowed to give the sort of information you asked for out to anyone but the actual person unless the person gives his permission. I had to have Larry on the phone with me to do so to talk to them about him.

[enjoysalud in reply to Hidden]

Thank you Jeff166, I initiated the application at the SS office. My son was not able to leave the house. It was awarded following his death. The rep said I should follow thro as his estate was entitled to the sum up to his death. I said I was NOT interested in the money. She said I was entitled. Since i started the process I should follow thro............if I did not want the money to donate it to my favorite charity or a member of the family. That made sense. So, I followed thro. After a few months I get this letter addressed to ME on the acct of my son. I read her the heading, claim number, etc. I wanted to know how much he would have received monthly.

Maybe I am just into punishing myself for not having filed earlier for him. I thought since he received a state disability stipend he was not entitled to SS. I was wrong and now wanted to know what the monthly amount would have been.

I am just going to take the letter and go in person to the SS office. I have gotten good service when I go...after an hour wait or less. I also will inquire where to send a complaint letter. I will cc it to my two federal Senators.

Thank you for taking the time to respond to me. PSP and grief (I think) causes me to act irrationally, but now I am angry about the hour wait and the rep's 30 second response .

I know we need to hire more govt workers and perhaps it had been a rough morning for her (I waited from 11:12AM to 12:05pm), but ................still.

[Katiebow in reply to enjoysalud]

Such a dilemma for people, Ben has stipulated he doesn't want a PEG fitted. His weight has been pretty stable but in the last few days his appetite hasn't been too good. May have a UTI or effects of new drug, hope not as he enjoys his food, albeit puréed.

I'm not surprised you have bad days but sounds that things have moved on a little, sure you wouldn't want him to be still suffering.

Take care

Love Kate xxx

[enjoysalud in reply to Katiebow]

Thank you!

[Marie_14]

You know I am still learning about this and my husband is dead since February! Because he was diagnosed with Leukaemia first, then PSP with signs of MSA. When he lost weight I thought it was because of the Leukaemia. Now I am wondering if it was PSP. It was quite dramatic as you say. Nobody ever told us it was because of Leukaemia I just assumed it was. At that stage we were not aware there was anything else wrong with him. Now I wonder if that was a sign which everyone missed and put down to Leukaemia. I will never know. Whatever caused it it was very quick. It was very much as others have described too.

Marie x

[MaddyS]

Hi, yes weight loss is a problem. As mentioned already, cream does wonders. I used to give him shakes which contained extra thick double cream, ice cream and a flavour of something, mainly fruit or vanilla, diluting it with full fat milk to the right consistency. You need to try and see what he likes and adjust accordingly. No good giving him something he does not like, life is too short. Good luck, Maddy

[Zeberdee]

My hubby has lost a lot of weight over the last few weeks. Double cream in everything, chocolate mousse with extra thick cream, custard with cream. Now unfortunately my hubby is having great difficulty in swallowing and tends to hold anything in his mouth before attempting a swallow. When he was able to communicate his decision was NO PEG .... the future is now very worrying and food (such as it is) makes him start choking and coughing. For him this must be horrrendous and brings me to tears when coaxing him to eat. Sorry I cannot give you some comfort, it’s as it is. Jx

[Katiebow in reply to Zeberdee]

Feel for you trying to have to coax him to eat. I imagine there is no pleasure for them when eating due to the horrible effects of choking, bet they dread it!.

Sending my love

Kate xxx

[Zeberdee in reply to Katiebow]

Thankyou Katiebow. Not an easy journey for any of us especially the PSP sufferers. Love Jx

[Pentland]

Hi 2vonnie. Sorry to hear about your husband's weight loss. My husband also lost a bit of weight a while ago and, like others, I immediately fortified his diet which worked very well. As he is now on a Level D diet i.e. previoisly mashed, it is difficult to give him all the high calorie goodies I had previously given him and so his weight is going down again. I contacted our Dr about a supplement and he sent out the Dietician who recommended the addition of a supplementary diet drink. It may be worthwhile contacting your Dr to get his opinion. Good luck.

Margaret

[Ratcliffe]

My David suffered quick weight loss after being diagnosed, but he did have quite a few pounds spare. Once I worked out what was going on, I swapped all his low fat puddings for full fat ones, and added butter to mashed potato etc.

One thing which is really worth looking into is nutritionally enhanced desserts. They are fortified versions of normal mousse puddings and the like but with a lot more calories and the good things added.

If you are in theUK, your local healthcare will have a nutritionist that can let you have a sample pack.

David was just trying all the samples with a view to getting them on prescription,but we never got that far, but he seemed to find them quite tasty, and I wish we had found them two or three years before.