NIH research participation

Janutt

Hi

has anyone done any participation in NIH (nationtional Institute health) for research? I have seen some about this and was curious if anyone has. I have done some at my hospital. I am hoping that if I can help with the research study that some day they will be able to find some cure in the future.

Iris L.

Janutt, you can check www.clinicaltrials.gov .

Iris

Janutt

Hi Iris,

Thank you for this. I have checked this out and it is what I have seen from the NIH.gov as well. i am taking part with some studies that doesn't include medications or scans due to my other health issues. I live in MA. area so I am part of the research in Boston and saw a research from National Institute on Aging: nia.nih.gov. "Could 'musical medicine' influence healthy aging? I wasn't sure if anyone has partaken any research study before with their hospital or any other facility? I had just completed the Branch study from Harvard. It was a 7 day online study. It was done using your phone or laptop. I didn't do as well as I had wished, but i'm not going to worry because it's just a study research. I won't get prize or a big lollipop ;-). My cousin has mentioned to me that my uncle has been part of the research as well. My aunt has mentioned this about my grandparents as well as my aunt too.

Have you done any trials before or research?

Jaunt

Iris L.

I signed up for a clinical trial that included an Amyvid PET scan, which told me that I do not have Alzheimer's Disease. I still do online cognitive tests every six months or so. I was called for many other clinical trials but could not participate because I don't have a caregiver.

Iris

Janutt

Hi Iris,

yes I had that pet scan done as well. Wow! That’s quite interesting to know that. No other clinical trials that are geared towards people who don’t have a caregiver that you know of? That would be very interesting to learn more about since you are independent right?

Iris L.

Frankly, Janutt, I am no longer interested in clinical trials. I was called for one that involved intravenous medication. I am not interested in taking any more medication, especially intravenous medication.

Right now, my focus is on helping the newly diagnosed person with dementia to understand and to develop a perspective and to try to help make plans. There is little constructive help in the outside world. I have learned a lot from the members here and I want to share what I know.

Iris

Janutt

well Iris,

I can say that I have been learning a lot from you so thank you ♥️. It’s hard for people who don’t have this disease and understand or get it. I still don’t and I struggle with living with it

Amy Joy

I took part in their survey after being in sleep lab and found out I have moderate sleep apnea

Janutt

Amy Joy,

well I’m glad that you found out that you have moderate sleep apnea. Scary, I would imagine.

I have a question. I have done 2 studies one in May and one last month. I was supposed to be compensated but I have not heard anything. I reached out to the one I had participated in in May, and they said that they have mailed it. I explained to them that I have not received anything from them. I don’t know what else to do. I receive no money from anyone, except from my DH who receives money for disability.