Rch4

[Kayleigh]

Get yourself a comfortable recliner in fron of the television, a tablet and make people do things for you.

Hi Tim,
Who are these 'people' who I am going to make do things for me? Good for you, if you are rich enough to employ people to 'do things for you', but many people aren't. Many of us have to manage doing as much as we can by ourselves. Often, it's a case of muddling through as well as we can, and what we can't do just doesn't get done.

Have a nice day!

Kayleigh x

[WeirdTim]

Hi Tim,
Who are these 'people' who I am going to make do things for me? Good for you, if you are rich enough to employ people to 'do things for you', but many people aren't. Many of us have to manage doing as much as we can by ourselves. Often, it's a case of muddling through as well as we can, and what we can't do just doesn't get done.

Have a nice day!

Kayleigh x

My wife and I are far from wealthy and cannot afford professional care either. However family, friends and neighbors help a ton. By no means was I suggesting that we have higher help.

My main point was PALS need to be concerned about doing anything physical.

[Kayleigh]

Fair enough Tim. It's good to hear that you have a lot of support from family and friends.

My family and friends work full time and so I have to manage to get things done with limited help, but I get what you mean about accepting help as much as possible. Thanks for clarifying things.

Best wishes to you and your family,
Kayleigh x

[Sportingmac]

From the www.als-new-drug.com , the RCH4 charities website:
"Many of our PALS friends went to the gym more than once per week, were fitness enthusiasts, were in the military or sold supplements. Therein surely rests a lesson. If you are a PALS, do not go to a gym."

I have found this to be extremely correct. Anytime I've put my body under stress, whether it be exercise or severe temperature change, I've experienced progression. Get yourself a comfortable recliner in fron of the television, a tablet and make people do things for you. Your job as a PALS is to keep your mind sharp and physically a sloth. Some very light stretching doesnt hurt but nothing that has you working or trying.

Someone also mentioned that MRI scans are objective tests not prone to human feelings. The ALSFRS-R score is the most objective of all - it records the monthly status of physical movement. That is what matters to a PALS - movement ability. EMG and MRI scans are academic.

Hi Tim,

I mentioned Objectivity versus Subjectivity. Sorry bud but ALFRS is 'subjective'.

Kind regards

Chas

[JennyinFrance]

Hi. I'm Jenny. i'm 66, I live in france and was diagnosed in june 2013 with bulbar onset ALS. In March 2016, I was on an ALS forum when a post caught my eye. It was a guy who had been taking a drug called RCH4 for over a year He said his progression had slowed considerably. I messaged him and he gave me the contact details for the RC Charity, a group of retired scientists who were supplying the drug free of charge on a compassionate basis.

I put in my application and was accepted. I started taking the drug in April of 2016 and one month into the treatment, I noticed my progression had stopped. I had six months of being stable then the progression slowly returned. By November 2017, I decided to go for a tracheostomy. I just couldn’t get on with the mask and my breathing was worse. At the time of the op, I had full use of my arms and legs but when I came round from the op, I had lost about 50% use in my arms. I was told it was because of the General anaesthetic . Today, almost six years on from diagnosis, i am doing well on the trache. i can still walk although having the trache and vent makes it impossible to walk anywhere so i use my electric wheelchair to get about. i am absolutely sure RCH4 has slowed my progression considerably.

[Sheila]

Hi,

just wondering is Riluzole a drug that the specialist will put you on straight away. ? I have heard there is alot of side effects from it. I have to see the specialist in may. First time for me at the hospital clinic.
Hope you are having a nice weekend.

Sheila

[Lynne K]

Sheila, people react to Rilozone differently. It makes some sick. But I don't have any side effects unless the fact that I've gone off sweet things is anything to do with it. Or that could be a coincidence. You have to avoid fat or dairy products when taking it. So, take it and eat one hour after. Or have your meal and wait until 2 hours after to take your Rilozone. As you can see meal timings are important and you have to take your Rilozone every 12 hours. Lynne

[mndmarlon]

Kayleigh,

You are correct, RCH4 is still a trial drug and needs to go to FDA trials. The 'RC Charity' who supply RCH4 to us, are trying to find sponsorship at the moment, to take it to further trials and eventually get out the the wide MND community. My wife has been on RCH4 since Feb 2016 and has halted her progress, and I know of others with the same results. This drug needs to get to trials asap, as it has no side affects unlike Riluzole and actually offers you longer term results, which is different to all the available MND drugs available at the moment, which may only give short term results.

Also this thread is for discussion on RCH4 for people enquiring about it and feedback from the users like my wife. There might be better threads targeting good advice for Riluzole and its use / benefits elsewhere on this forum.

[Sheila]

Thank you for your advice Lynne and Kayleigh alot to think about. I don't think I will rush into anything yet.

love,,
Sheila

[Kayleigh]

Hi Marlon

With reference to the final paragraph of your post, Riluzole was mentioned in a couple of my posts, but in no way was I trying to persuade people to use it. I was just pointing out the fact that RCH4 is not currently approved for use in the U.K. - but Riluzole is. In no way did I imply that people shouldn't be using RCH4 or that they should be using Riluzole (it is a matter of personal choice).

As you would rather that 'Riluzole' was not mentioned at all on this thread, I have deleted my posts that mentioned it.

I always try to do my best to offer helpful information and to be as supportive as I can on this forum. I hope that RCH4 continues to work well for your wife, and for everyone else who is using the drug.

Best wishes,
Kayleigh

[mndmarlon]

Kayleigh,

You did not need to delete, perhaps I worded it too harshly. What I want to say is that there may be some good advice on 'Riluzole' on other threads as most of the RCH4 users don't take 'Riluzole' and so would not be in a good position to offer advice.

[Kayleigh]

Thank you Marlon.

Very best wishes to you and your wife,
Kayleigh

[Sportingmac]

I go through step phases with my MND. For example - after diagnosis I went 2 years without much reduction in function. Then my right foot went quite quickly. Then another plateau for about 6 months before my left leg started giving signs of weakness. Then another plateau for about 9 months using crutches only. Then my arms went south and stayed roughly the same for 6 month for so. Then everything seemed to go downhill prior to Christmas - left hand is about it really.

My point: MND is variable rate degradation (the bit that makes us all 'different') so I might assign 'remission' to my variable 'variable' rate.

Since it is over 23 years now since Riluzole passed its efficacy 'tests' there is a very large gap in the market for hope of a cure.

Kind regards

Chas

[Lynne K]

Thanks for your info Chas. About the length of time since Rilozone came on the market: this shows that fingers ought to be pulled out to find a more effective treatment urgently. There seems to be some positive steps being taken. Fingers crossed. Lynne

[Jer788]

Hi Nick, how do you contact them ? They have shutdown the contact us section on the site.
Regards Jerry