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Hi all, by the way I really feel for you mikael as I am going on 18 months nó diagnóis it’s like a living nitemare not knowing what is happening its madness in this day and age u should have to go through all this, I have muscle wastage on right hand and bad pain have been prescribed pregabalin for pain heavy feeling in my legs have had 3 emg a…[Read more]

It’s fantastic advice from Dagmar. The  article on ‘the one thing to bring’ should be read by every newly diagnosed pALS.

My experience in Australia was similar in that I felt like I was being prepared for death rather than maintaining where I’m at. That said, I think a positive change in mindset is fundamental in how we approach this journey…[Read more]

Hello, just a update on my mother she is doing quite well with no side effects what so ever!! The RCH4 charity has been supportive and extremely caring for my mother. Here is her latest monthly score.

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Those are excellent suggestions Venu – – we can learn much from the breathwork techniques taught in Yoga.

You are correct Walter – – maybe the word I’m looking for is somewhere between Hospice and Palliative….leaning more towards a hospice mindset.

I only attended one ALS clinic group.  It was fine, but I don’t care to follow disease progression in participants.  Palliative care is different than hospice care.  Many people confuse the two.  Mayo describes it as:

Palliative care is specialized medical care that focuses on providing patients relief from pain and other symptoms of a ser…[Read more]

I was diagnosed with Bulbar onset one year back. Since few weeks, I used to wake up with difficulty in breathing. Thereafter I started doing these two Yoga techniques which are helpful in controlling inhale/exhale:

1. PRANAYAMA : inhaling through one nostril (closing the other with thumb/little finger) filling the lungs and slowly exhaling through…

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I have been going to my ALS Clinics ever since first diagnosed in 2010. I began with every 3 months and am now at 6 months apart (I’ve had no changes in the past few years).

Initially, I was surprised by the “palliative care” model the team was following: lots of empathy and suggestions for ways to make my life “easier.” Which I felt was leading…[Read more]

Hi, I too was prescribed with ‘the only treatment authorised in the UK’ Riluzole & told it might give me 3 more months. Today I have written a paper for my consultant asking him to prescribe:

Metformin SR – trials targeting the C9fALS I have beginning in Florida. The drug has been used for decades to treat Type 2 diabetes and infertility (neither…[Read more]

Hi Susie,

Thank you for responding! It sounds like you are a very strong woman and really hanging in there! My husband’s symptoms do sound similar to yours. Neck muscles are weak. He has a very good neck support he bought on Amazon…brand name is VIVE. I am curious as to what kind of speech problems you have. Do you slur your words or is y…[Read more]

Greetings,

I was diagnosed August 2017 with Bulbar onset.  Had sought a diagnosis for both breathing and speaking issues.  Was immediately given a bipap, which I used faithfully at night for the first year.  It was a great help in sleeping through the night.  Year two brought a gradual decline in breathing, and by year three I was issued a tri…[Read more]

Hi, Rick,

In response to your comment about having “normal levels of glutamate in your blood”: around 40% of PALS have elevated glutamate in their CSF – cerebrospinal fluid – not in their blood. Laboratory blood tests can’t measure CSF levels. To check your CSF glutamate level you would need to have a MRS study done, (magnetic resonance…[Read more]

Here’s an ALS Untangled article you might want to read: https://www.tandfonline.com/doi/full/10.3109/21678421.2015.1088707

It’s in regard to this supplement (https://www.lifevantage.com/us-en/shop/protandim-nrf2), which also contains Ashwagandha. It sounds pretty similar to your Dad’s supplement. It got a promising (and rare!) “A” rating on…[Read more]