[Dagmar]

Wishing both you and your mother health and longevity – – 🙂

[Dagmar]

Welcome back Diana! Sounds like your trip was a success and you were able 😉 to see, do and experience just about everything!

So good of you to share “lessons learned.” Yes, it seems all comments from special needs travellers include: plan, prepare and double-triple check ahead.

I am amazed and proud of your resilience and energy during the trip! You rationed out energy very well. Don’t worry about feeling wiped-out once getting home. For me, ALS amplifies everything, and the now-I’m-home let down is included. A day-long car trip can do me in: I feel like a frozen-in-time paper clip and have to undo hours of sitting. Give yourself the couple days of taking it easy (your ALS won’t progress) and ease back into your pre-trip self.

I also empathize with your restroom rationing! Too bad we have to risk dehydration to avoid restrooms that are less than “accessible.” 🙂 Again, welcome back!

 

[Dagmar]

I hope that, “germinated grains…and fresh quail eggs,” is an idiom or local saying in Belarus and not a special diet! 😉 😉 ha ha.

Seriously though, it sounds like you and your mother are following a good medical plan and that she is remaining active (yet safe).

We all share your hope to slow progression of symptoms. They are so different from person to person. However, there are actions you can do to “help.” These are:

– Proper medication (Riluzole is taken by most patients), eat nutritious foods, stay active or do specific physical therapy, sleep well and avoid becoming isolated from friends and family.

Massage helps, stretching, staying involved in projects (gardening in her case) and not dwelling on the past all are good to follow as well. Avoid crazy diets, too many supplements and expensive “miracle cures.”

We are here to support you and share our thoughts.

 

[Dagmar]

Galina, I have been living with ALS for the past 9 years, and fortunately have found a way to maintain my mobility, speech, swallowing and attitude.

For assistance, support and resources offered to international patients, I suggest you connect ALS Worldwide. They offer free information and referral advice, plus can connect you with ALS specialists (hopefully in your country).

Going forward, advice all depends on your mother’s current health status, her current strength & weakness areas and – – her attitude.

Everyone begins differently, so it is best to focus on what is needed “now” while still planning ahead. For example, where is the muscle weakness? Hands or feet? Neck or back? If feet… then do range of motion exercises for the feet, have her walk with a walker and do a daily mild exercise routine to keep the rest of her body strong. There are a lot of options and ways to “keep going.”

You both need to learn as much as you can about the nature of ALS. Not heresay, but the “why” and what is happening in the body.

Our forum members are a wealth of resource and can share their experiences with you. What are the 3 most important questions that you have right now?

[Dagmar]

About 4-5 years ago I began to notice my tongue felt thick, it was moving slow when I spoke and I was slurring words. My upper palate (back roof of mouth) seemed to be dropping, which gave me a nasal sound.

Initially I thought that tongue exercises, speaking more, then changed to speaking less – – would all help. They didn’t. At the doctor’s I was sent to a speech-language department where they educated me on all the tech items (eye-gaze, phone apps, scribble board) that I could use instead of talking. But…I didn’t want to give up speaking – – no matter what I sounded like.

Two things helped me: 1) Learning to speak with a lower pitch, move consonants “g, k” forward in my mouth and speaking slower but carefully, 2) use my diaphragm (like an opera singer) to produce sound.

I am still speaking! Yes, slowly…and with a lower pitch and a nasal twang. But who cares? I am speaking. I take my time, breathe and avoid feeling rushed by others around me. That involves body awareness.

So, here is how I learned better speech: https://alsandwellness.blogspot.com/2018/03/als-dysarthria-use-these-innovative.html

and how to support it all through better breathing: https://alsnewstoday.com/2018/05/29/als-breathe-well-balloons-bubbles/

Please feel free to ask me questions if you need more information in this area. 🙂

[Dagmar]

I agree that the Ice-Bucket Challenge brought much needed visibility to what at the time was dismal funding and awareness of ALS. But there were mixed results and many lessons to be learned from this marketing phenomena.

– Social media was an excellent platform to use. The visual of ice water and opportunity for individuals to showcase themselves fed into the viral results.

– Some individuals/groups donated to ALS organizations other than ALS Assoc. In fact, the ALS Assoc. was late to the game in claiming ownership of the activity and how to use the donated funds.

– A missed opportunity the following year: ALS Assoc. tried to replicate the Ice-Bucket “thrill” but failed to catch the public’s attention. Other “knock-off” campaigns tried to go viral, but didn’t. (Hot peppers, A Day of Silence, etc.) No one since has created the same fever and interest as the buckets did…. a sorely missed opportunity as ALS faded from public view.

– Jean-Pierre is correct that although ALS Assoc. and other organizations point to increased research activities and published papers, the question is: what are they researching? I have to add my own disappointment that good money was spent to produce: “Does having ALS cause depression?” and “Newly diagnosed ALS patients have trouble sleeping.”

– And yes, we need to move beyond animal models. Human cells react differently to drugs/treatments than those of fish and mice. Not to mention creating an industry of ALS-mice breeders!

In my opinion the ALS Assoc. should stick to what they do best and have created: a vast network of care clinics, support groups, equipment loan closets and care coordinators that directly serve and support patients & families.

And maybe ALS patients need to become more aggressive and assertive about demanding (yes, demanding) attention. This recent article about a group staging a protest caught my eye:

https://www.statnews.com/2019/06/07/als-advocates-protest-fda/

I’d be interested to learn the thoughts of other forum members on this issue.

[Dagmar]

This checklist from the MDA is a good resource: Preparing for Emergencies: A Checklist for People with Neuromuscular Disease.

[Dagmar]

This is very helpful information. Thank you for sharing it Jean-Pierre!

So many believe that just having the Right to Try law in place – – makes it so. But as the article points out, patients and physicians need to know what is available and who to contact. Someone should step up and create a networking software to fill the void.

 

[Dagmar]

Thanks for the comments John 🙂

Good that you are sitting “well” – – I too catch myself slumping by late afternoon. At least we are attuned enough to our bodies to “feel” the problem happening and quickly (OK, slowly 🙂 ) move into a more correct position.

I’ve found that taking the time to sit properly, put the pillow near my low/mid-back and roll shoulders back has helped my breathing, speaking and thinking clearly 😉 abilities!

 

[Dagmar]

I think everyone will agree with me that you should continue your quest to have a definite diagnosis. Only then, will you know what and how best to treat the condition.

[Dagmar]

Amanda, thank you for continuing to participate in the study at the U of Miami! Your involvement is very much appreciated – – together, we are slowly making advances towards having a treatment and cure for ALS.

 

[Dagmar]

Wow! What a wonderful explanation. Thank you for taking the time to write that – – I hope our forum members take the time as well to read what you shared.

This not only relates to the studies in your initial post; but provides a good “big picture” explanation of the difference between familial and non-familial ALS, causes of each and the uphill battle (and time) from discovery to treatment – – and then, gaining physician confidence!

Thank you!

[Dagmar]

Thank you for posting this Jean-Pierre, at least there is progress (albeit, slow) in identifying how to manipulate errant genes and thus control the toxicity they create.

Could you please go one step further, and explain how this will impact ALS patients? Will this open the door to a new understanding of cause? How long will it take to go from discovery to actual human trials and a successful treatment? Thank you.

[Dagmar]

Thank you for sharing this news Jean-Pierre!

The SMA article link is very helpful in explaining the “what/why/how” of this breakthrough treatment for SMA.

ALS treatments are so focused on symptom management. Gene therapy will get to the pre-ALS and post-ALS corrective phase.

Yes, we hope a scientist out there has interest in the applications for ALS – – and a low cost one as well.

[Dagmar]

Jean-Pierre, You are correct that Dr. Bedlack and his team at Duke University is looking into the phenomena of als-reversals. His ALS Untangled website tracks the various treatments they have researched and scrutinized.

Curcumin does not “cure” ALS – – but according to Dr. Bedlack it is worth looking into for its actions: antioxidant, anti-inflammatory and balancing gut geome. These actions at least address a few ALS symptoms.

I found his recent webinar on the topic helpful to my understanding of the issues involved. He is planning to organize a trial to study of curcumin (Theracurmin) using ALS patients.

Webinar: https://vimeo.com/284788558

[Dagmar]

Thank you Jean-Pierre! Your comment is very helpful towards understanding this complicated process.

[Dagmar]

Ed Rapp’s story is certainly inspirational! I didn’t realize he was the one who started “I Am ALS” – – a great, great awareness campaign!

[Dagmar]

Riluzole and Radicava have different mechanisms in the body.

Riluzole helps eliminate glutamate (metabolic waste) from the brain. Build-up of glutamate has been linked with ALS and loss of motor neurons. Riluzole is said to “stop working” when it can’t keep up with the amount of glutamate produced by the brain – – that is usually about the time the patient needs a tracheotomy in order to continue breathing. Riluzole is then no longer recommended.

Radicava helps eliminate free radical toxins due to oxidative stress. It could be called an antioxidant. Other forms of antioxidants are being examined for possible use for ALS – – turmeric (curcurmin) in the form of Theracurmin (by Integrative Technologies) is of recent interest by Dr. Bedlack, of Duke University.

I recommend taking the time to watch this very informative webinar from ALS TDI that gives a great explanation of ALS, drug mechanisms and future goals. https://youtu.be/UHnhiPQNmKg

 

[Dagmar]

Clinical trials for Nurown are still open and accepting participants: https://www.als.net/als-research/clinical-trials/321/

Nurown is a process of taking adult stem cells from the bone marrow of your spine, then over 3 months they grow neuron cells and re-inject them into your spine. These are not new motor neurons nor are they to replace motor neurons – – but to provide support for your existing (working) motor neurons. Every several months you receive another injection.

I have a friend who is in this trial (Massachusetts site) and I will be keeping tabs on his progress.

[Dagmar]

I’ll have to read more about it. So far, all I know is that it is an off-label/not-yet-approved drug that is injected directly into the muscle. hmmm…will add more later after a little research.

Seems that there is a lot of controversy about the drug; and no published research – – only self reported results or company provided research. Since the makers do not state the exact mechanism of the drug (how it works in the body), it’s hard to tell what the efficacy is.

[Dagmar]

Good for you Ray, for holding on to those great numbers! But I agree (and am glad you agree with me) that the scale is kind of “squishy.”

It is helpful as a “guide” to direct conversations with our doctor and medical team – – but still scary to think that drug results and other serious endeavors are totally based on a “squishy” self-reporting mechanism.

Teach patients to roll over, I say, rather than medicate and accommodate. Here’s my favorite go-to for fundamental movement, Tim from Original Strength, teaching us how to roll: https://youtu.be/C7Vxcb1yOro

 

 

[Dagmar]

Leslie – – safe travels to you both! Hope this visit will be productive and give you the answers you need. 🙂

 

[Dagmar]

Yes, Leslie … both the caregiver and patient need time out.

If your friends are not able to provide support, is there an ALS Assoc. caregiver support group in your area? Or even a generic caregiver support group? They will be the ones who can understand and offer helpful suggestions.

Also, it sounds like your husband need something to do 😉 other than micro-manage you 😉 As a patient myself, I found it a big challenge to redirect myself (no longer able to teach, talk well, move with ease – – my life had been teaching fitness & wellness). Little did I know I could reframe it all into writing! (I never thought I could write well!) But here I am, 9 years later – – perhaps your husband can be convinced to try other things that will occupy his mind for several hours each day? My husband (caregiver) and I have found that my several hours on the computer give him time to do things around the house or even meet buddies for a friendly game of poker.

Let me know if you need ideas – – I’ve written several articles about this both on my blog site https://alsandwellness.blogspot.com/ and Living Well with ALS columns. Hope this helps you.

[Dagmar]

Bill,

Your email to friends and family was great. And yes, we pALS all experience different responses. Some are in denial themselves, or don’t know how to respond and then there will be a few who show up “no matter what.”

I envy you – – being able to be seen at the Duke Medical Clinic (Dr. Bedlack is my hero!). It sounds like you are doing all the “right things” – – good doctors, 3 month visits, etc. Good nutrition, regular exercise, finding a new purpose, reducing stress and sleeping well… are all beneficial to living well with ALS. I am in my 9th year and feeling good and maintaining my ALSFRS-R scores.

This forum site is full of positive thinking, like-minded folks. You are in the right place and we are all helping and supporting each other.