Status
Not open for further replies.

Englishman

Member
Joined
Dec 4, 2014
Messages
15
Reason
Loved one DX
Diagnosis
11/2014
Country
UK
State
Staffordshire
City
Stoke on Trent
Hello to all,

My Father was diagnosed last Monday and it had been a very tough week for us all.

My Father is 54 and has always been a fit and healthy person and never smoked, eat well, drank socially and always went for a jog, played football and Golf so cannot understand how this has happened.

We think is symptoms began around July/August and is currently still walking and talking but his speech is slightly slurred and get tired quickly.

I am worried about the progression and I am keen to help him fight this. Unfortunately he was diagnosed with Hodgkins Lymphoma 3 years ago so I'm not sure what complications this may also add but as far as we know that is under control.

He is due to start on Riluzole next Thursday but I was hoping you kind people could advise me on your experiences with taking any other of the below and if it has helped you in any way:

Vitamin E
Magnesium Chloride
Fatty Acids
Coconut Oil
Protein Shakes
Any other tips you would have?

I have come across an video about a women which is interesting and would appreciate your thoughts on this also:

http://youtu.be/8tqpA5Xor8w

Thanks in advance and all the best to you all!
 
Many rub coconut oil into spasming or cramping muscles. They feel it helps. The magnesium is also supposed to help with cramping but too much for the persons body can act like a.laxative. get guidance from your neuro. Many here do and do not take the riluzole. It is a.personal preference. Some think it helps a.great deal, others not much. Sorry to sound so wishy washy but what you will find is als has some commonalities but many differences person to person.

Many pals indulge in high calorie smoothies with a protein boost since a main goal is to maintain weight. If you look thru various threads you will see many recipes. My pals favors a greek yogurt, a couple tsp of sugar, half and half and frozen fruit. You can make them with nutella or peanut butter, honey, virtually anything you like.

The other main thing early on is to prevent falls. Falls cause so much harm to our loved ones. They do not heal well and falls speed progression.

Lastly, I would start a notebook. I would divide it into a few sections. On efor when all the different meds are given. One for any new symptoms or weird things happen. And a section for questions for the doctors and their answers.


Sorry its so long, welcome! We will be here for you. Steph
 
Welcome
Right now I would only add the following items,
1. Use whatever aids needed to prevent falls, cane, walker, wheelchair. Falls seem to speed up progression.
2. Avoid sick people and don't let sick people come around. The slightest respiratory infection can have devastating results.
 
Welcome Englishman. On the recommendation of Dr Appel in Houston, I take Vitamin C, Folic Acid, Vitamin D, Beta Carotene. He also recommends Vitamin E. I have added B12 as its a good B vitamin for stress (mental & physical) and I take Magnesium for muscle cramps - that seems to help (along with Baclofen). I'm not taking a high does of Magnesium - probably about 125% of daily recommended.
Dianne
 
Before picking treatments, I'd start by defining what you mean by "fighting this." Are you hoping to cure him, make him live longer than average, or relieve his discomfort?

How are you going to measure success, so you know if it's working?
 
My booklet from the VA recommends 2400 Vit. E and 3000 Vit C.
 
Hi all,

Thank you all for your kind words and advice.

This is still fresh in our minds and we are all still letting it sink in.

I think a cure is more of wishing for a miracle but I am hopeful as I have read some very positive stories about the disease burning out etc.

I am seeking ways in which I can help prolong the symptoms and help with his discomfort. We have the Neuro Nurse visiting on Tuesday for the 2nd time since the diagnosis and he is going to start on the Riluzole so hoping that will work for him.

Any questions that you recommended that I ask her on Tuesday?

Thanks again for your support!
 
Englishman, you are in the right place for getting solid advice, support and understanding. It takes a while to come out of the shock mode and begin to live the reality of this disease. Think all of us initially longed for that "miracle" but came to accept that any stories of " the disease burning out" were just misdiagnosis to begin with. As far as questions, think you will quickly learn that most doctors, nurses won't have as much practical advice as the people here who are living this disease. These are your true experts!
Regarding his active, healthy lifestyle, you will find that most people with it have lived in such a way- and are often athletes. As my husband would say, "I am the healthiest dying man I know!" So make the most of each day with your dad, love him and be there to help with his care later. It will be honoring him by your presence. Good luck. Donna
 
Sorry to have you join the club. My dad was diagnosed in October and I'm in the same boat trying to get information and do as much to help as possible. If you have any questions or need someone to lend an ear feel free to reach out.
 
Hi Englishman and so sorry to be welcoming you here.

I think the first thing is to find out what your father wants - does he want his symptoms prolonged, what is most important to him and how can you support that? So many times as a CALS I had to let my husband make decisions that were different to my own view because it was his body and his disease and it was my job to support him. Very hard place sometimes but now he is gone I wouldn't do any of it differently if I had a second chance (except find some miracle cure, but that's obvious)

There is a sticky on anticipatory planning that you may want to read to help you start thinking about supporting him well.

Use the search function here when you have time to read about things that you feel you want to know now, or just ask here. We will support you as well as we can to support him the best way possible.
 
Welcome to the place you never wanted to be in. But you find great friendship. We are all brothers and sisters. I remember when I was diagnosed I felt so alone. And then I found this place. Knowing that I was not alone in my feelings and uncertainties made a huge difference in moving forward.

Patrick
 
As another child of a PALS, welcome to this great forum. You will find plenty of great support here.

One thing I will add to this thread of advice is to be aware of lots of bogus websites out there that offer false hope. There are websites and stories that offer some credible hope; however there are also the unfortunate cases of those trying to benefit from the hopelessness and desperation of those with a terminal illness. Many websites offer stories of finding a cure and reversing the symptoms using alternative medicine, etc. There is NO "cure" for ALS. There are some regimens out there that have shown benefits in some cases (such as the Deanna Protocol); but make sure you get these from a credible source. Never believe snake-oil claims.

Best,

Ken
 
Are there any clinical trials there that your dad could get into? It's worth a shot if there is. Kim
 
Thank you everyone for you support!

We have just had the Neuro Nurse come for the 2nd visit since the diagnosis.

She has brought the Riluzole with her but my Dad is unsure whether to start taking now or in a couple of weeks as he is due to go away for a couple of days with my Mum and with Xmas in 2 weeks time he doesn't want any side effects to make it harder for him to enjoy his break and Xmas. I feel it is important to start now though as if it works for him it will slow the progression down and we don't know how this may progress over the next to weeks if he doesn't have it.

Can anyone taking Riluzole advise of starting now or waiting til the new year?

Thanks in advance
 
Riluzole did make me a touch queasy for the first couple of weeks but no major issues. Everyone is different of course but that seems common. Is he bothered by twitches? A positive for some of us is a significant reduction. I noticed it after a week.
If he is going away for this weekend I would be tempted to wait until next week. If it bothers him then he could stop until after Christmas. But he might be fine with it. Another option is to start one a day for a week or two to get used to it.
 
Status
Not open for further replies.
Back
Top