affects the whole family

[rjmlsh]

I have a brother-in-law who was diagnosed 2 years ago with MND. It is extremely distressing and the whole family are finding it hard to deal with. He is fully aware what is happening and is now showing signs of deterioting e.g. dribbling, slurred speech and muscle wastage. I was a nurse and had never met anyone with this disease, sometimes the motivation is not there for him to carry on so he gets extremely depressed and wants to end his life. He has a lot of support from his brothers and sisters but it is very hard to see him suffer in this way. We all thought the doctors must have made a mistake as only now symptoms have shown after 2 years.
He is not on any medication but has a heathy diet with suppliments. This we got advice from a doctor who treated eric's book(Eric is winning).
I do feel all the advice has given false hopes, hundreds of dollars have been spent on advice and suppliments sold. This has made me feel all of it was a money making exercise.
I dont know what other peoples opinion is of this.
We are all either he will get better or have a peaceful and painless end to this terrible disease.

 

[brooksea]

Very sorry about your BIL. If you use the search above you will see other peoples experiences and or opinions about "Eric."

Personally I think it is a crime to profit off of other people's pain. This disease is so insidious that you would think anyone suffering from it would offer for free anything that may be thought to work to slow it down.

Glad your BIL has supportive family.

 

[Jennifer51]

I see you are in the uk...I am as well....Did your brother in law decide NOT to take medication? we have a friend with als DX 3 years ago..refused any medication.... he is totally immobile now but he is happy. I on the other hand was DX with bulbar onset in march of this year...I want all the help I can get to beat the beast so I started taking riluzole at the first opportunity...It works well for me...although I do seem to be in the minority with this drug. My speach is going fast, I can walk with a limp and slowly but stairs are now getting the better of me...can only do them with a huge amount of help.... Please feel free to private mail me if you want to chat. I am in the middle of a huge fundraising effort to raise funds for the mnd association for new trials soon.
jennifer51

 

[Marjorie R. Wilcox]

progression

Rick was diagnosed a year ago and we don't see drasticically different changes in him since that time. Oh yes, there is a little more congestion, a little more skipped breaths in the night (he uses a bipap), one finger he can't bend now, and his big toe on his left foot has now joined in the rhythm of the twitches the right was does.... but we see that most people don't even know anything is wrong with him, and it gives us a false sense of security. We have discussed how sometimes we even forget he has ALS. We wonder if that is a form of denial. When he staggers and has to hold on my hand, or like last week when he fell down on my sisters exit steps to her home.... well, it was dark, and he only misstepped. I could have done that myself. You see? But there are reminders..... really.
We don't want to be a part of a trial or study. Until a med is proven and approved, we don't want to throw our money away or deal with side effects. He is on a special diet with no supplements, that controls his diabetes into normal readings, alleviates his high blood pressure so that he doesn't even take meds for that anymore, and he "never" catches a cold, has great blood tests, and even healed his badly injured leg( all contributed to the diet.) We are counting these blessings, trying to be prepared for what we know is expected to come, and just loving life and each other while time goes by. That is the best anyone can do, and it sounds very wise.

 

[BethU]

Marjorie, how wise you and Rick are. ... and blessed to have this slow progression. I, too, am trying to keep a normal life going for myself and my husband (he has Parkinson's with dementia) as long as possible. To me, only one thing matters any more for both of us: Quality of Life.

Being alive, loving, coping with the physical difficulties as best we can, and not worrying about what is to come (although we have had to prepare) ... it feels like we have been given the gift of time to enjoy life to its fullest.

Thank you for sharing your experiences and philosophy.
BethU

 

[rjmlsh]

Yes did did take medication which was prescribed over here (he lives in trinidad, and was diagnosed while over here). However the med did not agree with him so he stopped taking it.
It may be because he was thought to have had a stroke in trinidad and was being treated for it for a year and then came over here for tests which diagnosed MND.
I'm so glad the med is working for you You sound so positive it is an inspiration. We all are taking each day at a time and managing each sympyom as it comes
How to I contact you as I put you as a contact.
By the way my name is Jennifer too..

 

[Flowerpot]

Hi Jennifer

My Mum was diagnosed in August but they think she has had MND since last September. She takes no meds and that is her choice. Interestingly her doctors said that they would prolong her life , but not in a way that would benefit her as she is progressing so quickly . Mixed and sad times.

kind regards

Flowerpot

 

[rjmlsh]

Yes I can understand your mum not taking medication , I feel the same way about my BIL what benefit is it prolonging life when the suffering is still there. Every day we live in hope that he's going to get better even though we can see the deterioration in him, I try to remain positive for his families sake and give support when needed.

My thoughts are with you and your mum Jennyxx