Welcome New Members – July 2023

[Prabhuraj Gaddikeri]

Iam Dr Prabhuraj Gaddikeri

dignosed als in Dec 22

weakness in both LL

on Riluzole and Edervon no improvement or halting the progress

Now I started Ayurvedic medication showing halt in progress and increase in muscle strength and bulk stability in gait in 25 days, 3 more people started medication who are in advanced stage showing singnificant improvement .

[Dagmar]

Again, welcome! Are you an ALS practitioner and are these 3 others your patients? I’m sure we want to keep updated of your condition with this medication.

Please tell us a little about yourself. You are a surgeon… for how many years? What got you interested in surgery? Do you have any hobbies?

 

[Gail Theile]

Hi Doctor…I have not heard of this medication, but after looking it up, I found that quite a few people take it.  I also found several types made by several different companies.  Is there a specific brand that you use?  My brother has ALS and he is growing weaker and losing strength.   I would like to know what you use so we can present it to his doctor.  If it works, at least it would give him more comfort and more strength during this ordeal.  Thank you for your post.

[Amanda]

Gail, I too was interested in learning more and trying to make sure this was legit.  I’m still trying to find some information and peer reviewed research articles.  This article from NIH was interesting to me. It follows on pALS but it also describes what Ayurvedic medication is and what is involved.   https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8891955/

On another website Ayurvedic medication was described as, “

Can Ayurveda cure ALS? So the line of treatment in Ayurveda mainly focuses on the pacification Vata and bringing back the equilibrium between all the three Doshas (Vata, Pitta & Kapha). ‘CHARAKA-THE SPECIALITY AYURVEDA’ Institute of Panchakarma & Research, a traditional health care center, started treating MND/ALS cases since the year 2003.”

Just a word of caution when researching this topic. I did find a number of websites not related to doctors, research facilities or reputable sources attempting to sell vitamins and supplements for this type of treatment. 

I’ll continue to research and post updates as I can.  If anyone else has experience, or is knowledgable about this please post information.  Also include reputable resources, websites and professionals that may be of interest.

 

[Gail Theile]

Thanks for your info, Amanda.  I was trying to find out about this as well. The description of it was hard to understand.  I also looked it up on Amazon and several types came up.  I would definitely like to find out more about it.

[Amanda]

Gail, if you do find any quality information please share.  I know that there is a big difference between health care philosophies in the east and west. I personally lean towards science, but I’ve also spent my entire life living in the West!  I did get the opportunity to visit China once and I learned so much. Not about ALS and treatments.  That wasn’t even on my radar at the time. Anyway, the more we learn, the more we share, the better for our entire community! Thanks Gail!

Amanda

[Bobbie Spring]

hello, I am Bobbie Spring, I currently live in Calera Oklahoma but have moved around quite a bit in my life. My father had ALS, I lost him February 2019. since then I started my own business, i threw myself into work because I felt helpless.  I like all genres of music, the Grateful Dead is my favorite band. If I could shout something from the rooftop it would be “love each other , and Please help find a cure for ALS” my summer plan is to take some time off. I will be here to hear about new medicines to try to cure this disease and to try to give helpful advice if I can. my father received his diagnosis in October 2018, and passed in February 2019. it was super fast and I was in complete shock, I tried to help him be strong and comfortable.  I wish I knew about this forum then.

[Dagmar]

Hello Bobbie… and welcome! I enjoyed reading your responses to our questions 🙂 I’m sorry to hear you lost your father to ALS. Do you have other family members who also share the gene?

What type of business are you in? And, are you being affected by the current hot temperatures?

[Amanda]

Hello Bobbie,

Thank you for sharing information about you and your father. I’m so sorry you lost him to ALS, and so quickly.  I’m glad you did find the forum, and I’m sure you will provide some great information to help others.

Amanda

[Janet Neckyfarow]

Janet Neckyfarow: Diagnosed October 2022.

Mine was a particularly cruel diagnosis. As a linguist and singer, to have Bulbar ALS and lose everything that defines me at the beginning of the disease was devastating. I was a French, Spanish and ESL Teacher most of my life, even starting a French Conversation group on Amelia Island after we moved here in April of 2022.

I am on Riluzole (now Timutik since I can’t swallow pills) and Radacava. I started Relyvrrio but stopped before I got to twice a day. It was taking me almost an hour to swallow the bitter 8-ounce dose and my stomach gave me an excuse to stop. I may go back to it now that it can go in the feeding tube. I tried nuedexta for a week (half dose) and wish I didn’t have to stop. It really helped the emotionality associated with the neurobulbar effect and also improved my speech (probably because it completely dried up my saliva). Unfortunately, I had every listed side effect and a few that were not listed. It took two and a half weeks from when I started it to begin feeling normal again.

I’m still able to drive, take a few classes at the Y, and function somewhat normally. Other than the speech, swallowing, etc., only my left hand and arm have been affected at this point and my motto continues to be “Use it or lose it!

[Cathy Shank]

Cathy Shank: Diagnosed with Isolated Bulbar Palsy October 2022. Diagnosed with ALS Bulbar Onset May 2023

I live in West Virginia, but grew up in Florida and lived in Chicago and Washington, DC, before moving  here.

I can really sympathize with Janet.  I too am a linguist and taught ESL and worked in adult education. The last few years I was doing online tutoring for children with dyslexia.  I noticed problems with my speech long before anyone else did.  I stumbled on the word “literacy” which defined most of my career. I could not call my cat with the usual “here kitty, kitty, kitty”.  In July 2022 I stopped tutoring because I saw and heard myself (on Zoom) struggling with pronunciation of certain words.

Like Janet, I too loved to sing, and now I cannot carry a tune. I had a teacher’s voice that could be heard across the room. I was a healthy 64 year old retiree when this began.

I started taking Riluzole in October 2022 and my symptoms seemed to stabilize for awhile. I was able to visit friends and family and travel.  My legs and arms are still not affected, but now I am losing strength and dexterity in my fingers and hands.  I am choking and struggling to swallow pills. I am panting walking up the hills. My doctor is recommending I consider a feeding tube. I just started taking Mexitil for cramps (and so far so good). I am hoping to start Relyvrio and Vitamin B shots soon. We’ll see how that goes.

My husband and I just returned from a trip to Yellowstone and Grand Teton National Parks.  I was able to walk and enjoy the vistas. I am fortunate to live in a beautiful state where I can hike in the woods at my slow pace. I’m grateful to be mobile and still making myself understood.  I fear the loss of both my voice and my ability to type.  If I could sing, I would sing the Don Henley song, “…for every breath, for every day of living, this is my thanksgiving”

[Dagmar]

Cathy and Janet, I am so sorry that your ALS has affected your voice – – the one thing you depended on professionally! It’s like me, a former dancer and fitness instructor – – who now can’t depend on my feet and legs.

I am curious if either of you has tried applying the techniques of ESL to help you improve pronunciation. I thought I would lose my speech altogether, but found that taking the approach that I was learning a foreign language (my own English!) helped so much. Daily drills with “R, S, P,” etc. have me mindful of my tongue placement.

Even though we don’t sound like we used to, we still can make sounds. What do you think of my approach? Have you tried it yourselves?

 

[Diane Reardon-Jorge]

Hello and thank you for welcoming me to your group. I do not have ALS but my older sister was diagnosed 4 months ago, and is really having a difficult time. I have found many helpful tips to help her with her speech and swallowing, which has progressed rapidly. I like to read the articles, and it has been helpful to me as a caregiver.
My best to all of you, and good luck. And thank you for the information you’ve all posted

Diane Jorge

[Alexi]

Hi Diane!

Your sister is very fortunate to have you. I hope you find the support you need as you go through this journey with your sister. It isn’t easy for anyone.

Best wishes,
Alexi

[Edward Townsend]

Ed Townsend.
My wife was diagnosed March 2023, limb onset for the past year or so. I’m learning how to be a caregiver for my sweet wife of 41 years. We currently live in Texas but are moving to Washington to be closer to our son.

[Alexi]

Welcome, Edward!

I am so sorry to hear about your wife. I think that it’s wonderful that you will be moving to Washington to be close to your son.

I hope you find some comfort in these forums.

Best wishes,

Alexi Holford

[Dagmar]

Hello Edward, and welcome!

The whole role reversal in ALS for couples is challenging, but it can be accomplished. Patience, not over-expecting, and going with the flow are what my caregiver husband and I have as our mottos – – for 13 years now. He does the household chores and I’m the tech person (and supervisor! haha)… oh, did I forget to add humor? Best to have lots of it!

[Reese]

Dr Gaddikeri – just swallowed my first Ayurvedic pill.  Thank you for tip.  I bought it from Elevate Recovery Supplements.   Quite a list of ingredients, all natural thankfully.