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Family suggests, Family asks...
Me&Sis
Posted: Monday, November 25, 2019 11:19 AM
Joined: 8/18/2017
Posts: 21


So, my very lucky Mom has a wonderful family who love her very much.


Her brother in particular, keeps posting facebook links to articles and stuff about research trials.
 
The latest...
 
Hyperbaric Treatment and Ultrasound Therapy

My uncle wants me to get her onto these trials...

When I responded to him with "There's a lot of good research going on right now, these phase 2  ultrasound results sound promising. We will have to follow the trials to see what comes next."

His response was, "It's better to be part of a study than wait until it's too late."

He also says "I love my sister and will do anything I can to get her what she needs as soon as possible."

We all love her. But, I need to figure out what is truly in her best interest, and advise her well. Because she will do whatever I suggest. So, I am not sure how to proceed with my uncle.

My questions...

What's real? What's not? Where do we go to find legitimate trials that might benefit Mom? 

Thank you!

 

 

 


Lane Simonian
Posted: Tuesday, November 26, 2019 10:46 AM
Joined: 12/12/2011
Posts: 4755


What is real and what is not is a very difficult question to answer.

I try to evaluate each trial based on mechanism.  Most of the damage to the brain in Alzheimer's disease is likely caused by oxidants--hydrogen peroxide early on and peroxynitrite for the duration of the disease.

https://www.ncbi.nlm.nih.gov/pubmed/16141213

https://www.ncbi.nlm.nih.gov/pubmed/9092586

I don't trust hyperbaric oxygen treatment because at least in some cases it increases the formation of peroxynitrite.

http://archive.rubicon-foundation.org/xmlui/handle/123456789/6687

Ultrasound and electromagnetic treatments are more difficult to assess because they increase calcium entry which can either stimulate the regrowth of neurons and synapses or lead to the formation of peroxynitrite.  The effects may be variable, helping some and not others.

A good antioxidant treatment for Alzheimer's disease is the combination of direct inhalation aromatherapy (sniffing a few stimulating essential oils such as clove, bay laurel, and rosemary in the morning and a few relaxing essential oils such as orange and lavender in the evenings) with panax ginseng.  A potential problem, though, is that aromatherapy with certain essential oils and panax ginseng can potentially increase anxiety and blood pressure in some people.

https://onlinelibrary.wiley.com/doi/full/10.1111/j.1479-8301.2009.00299.x

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3659550/


HowDoYouDeal
Posted: Tuesday, November 26, 2019 11:46 AM
Joined: 2/17/2019
Posts: 316


I don't think there is such a thing as a place for real trials vs. not real.  If its posted on www.clinicaltrials.gov  its a real trial.

 I know the Official Alzheimer Disease website won't list a trial until its past the first stage, and it must have more than 10 participants.  Some sites are conservative and don't want to get people's hopes up.

 

Whether a trial will be helpful, is harder to say.

To what extent will it work, is something that you take get an idea of from the earlier trials.

(though do check to make sure its fundamentally similar.  That's something that the trial administrator can tell you.)

The Degree of risk? 

Whether its being done independent researchers -or by the company that owns the drug/product patent?

If the data is being independently reviewed?

The likelihood of benefit?

The extent of benefit expected if the trial is successful? What have previous trial participants experienced?

The amount of time and effort the trial will take?

The amount of time and attention your mother will get from being in the study?

These are all things to take into consideration.

 

If your uncle wants to be involved in the decision making process, you could tell him he can be, but you will make the final decision. Maybe he can help research, maybe he can contact the trial administrator for more info.

Could you invite him to chat with you about the options over coffee. Would you feel comfortable bringing him into a conversations with your mother's doctor?

full disclosure: I tried really hard to get any of my aunt's and uncles who died of, and are dying of  Early Onset to try.... anything... a trial.... a commercial product from a trial. 

Nothing doing. My uncle just passed away last month, he was dealing with a lot of aggression. I just saw that there is a noninvasive trial for TMS for Aggression in Alzheimer's that started in recruiting in September.

In Vienna, Austria, a company called Neurolith is recruiting for a trial to treat (not cure) alzheimers.

I strongly believe in being part of a clinical trial, I started the process while I waited for my blood test and the thing about trials is that they will ask you if you want to take part and you can quit at any time, for any reason.

I think of it like, if a friend of a friend is throwing a house party, you are invited, do you make the effort to go? 

It might be lame, it might be awesome. If you get there and its lame, you can always leave.

 Plus, now that you're all dressed up and ready for a party, what if you meet up with some friends who are going to a better party. (Since you're ready to be in a trial, if that one doesn't work, you'll be more ready to try something else)

If you DON'T go to that first party, you'll never know.  

And if it does work, your automatically on that Enrolling by Invitation Only list that keeps giving access to the device or drug, if the trial gets extended/special access / compassionate use, (for FREE) while the treatment goes through the regulatory approval process.

I also just really strongly believe in the potential from all the non drug, non-invasive clinical trials I've read.

If your not comfortable including your uncle in the decision making, Maybe offer to listen to what he has to say... while he does the laundry or visits often or ... whatever you could use help with.


Me&Sis
Posted: Tuesday, November 26, 2019 2:44 PM
Joined: 8/18/2017
Posts: 21


Thank you both so very much!!

I am at work now, on lunch break, and will read all the links later. I really appreciate the advise. And the government website is a great place to begin. I sent that link to my uncle.

 


Donr
Posted: Wednesday, November 27, 2019 5:38 AM
Joined: 4/6/2014
Posts: 437


My wife had bariatric oxygen treatment for a severe wound 3 times a week for 5 weeks in 2013. The lady who ran the department mentioned that the treatments can help her memory but that after a few weeks it usually returned to the previous state. 

My wife had a very small improvement but it did not last long.


HowDoYouDeal
Posted: Wednesday, November 27, 2019 11:37 AM
Joined: 2/17/2019
Posts: 316


If it were a cure, just one dose would solve the whole thing. Because we're not there yet, and its JUST A TREAMENT, not a cure, I think that typically means repetition is necessary to maintain the results.

Results like the  4-6 points regained by participants in one trial lasted for  2 weeks, I think it was,  before fading, for most people in the trial.  One man lost his improvements almost immediately, another maintained his or hers for much longer than the others.

.........................

The Neurolith in Vienna is claiming that the results from its treatment last 3 months. Its a big machine!

Focused Ultrasound treatment with MRI Guidance, that happens in a hospital too.  The machines that are offering the biggest results, well they are big in size..................

There IS  a helmet from a trial ( yes, for Alzheimers) that you can buy and wear at home, and all sorts of Neuromodulation devices are on the market. 

A few are doing clinical trials for say migraine, or another Neuro-Degenerative condition like Parkinsons, MS, PSP... or even...... Traumatic Brain Injury

*                 *                       *

Unless you can afford to take a 2 week vacation in Vienna every 3 months ( I hear the skiing there is lovely), there's definitely a need for a lower power, lighter and more portable device  for at home maintenance, 

kind of like having ...  a $3000 "Ult" (ultrasound) facial at a spa, but using a smaller device to touch up between treatments.


PattieR
Posted: Wednesday, November 27, 2019 5:56 PM
Joined: 8/13/2019
Posts: 12


Any thoughts on this one?

 Study: Minimum dose of hydromethylthionine could slow cognitive decline in mild-to-moderate Alzheimer's

 

https://medicalxpress.com/news/2019-11-minimum-dose-hydromethylthionine-cognitive-decline.html