Learning from Others: Newsletter Highlights 2011

In the spirit of the New Year, here are some highlights from our recent newsletter.  Read what patients like you have to say about what they’re most interested in learning from other patients this year.

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2166 (Amy) What are you most interested in learning from other patients this year?
user_45436-full (bradley25 – Mood Conditions Community)I find I offer advice to patients more often than I listen. Offering advice helps me; it makes me think about what I am suggesting. More often than not, I find I offer good advice that I do not necessarily follow myself. Hearing the words come out of my mouth can cause me to think about why I may not be doing what I am suggesting and to make changes in my own life.
kidney (mrskidneysurvivor – Transplants Community)There is not any one thing that I can say I am most interested in learning from other patients like me because I gain knowledge and insight from all patients who have had a transplant or who are waiting for one.  We all have experienced or are still experiencing similar situations and take similar medications and cope with our day-to-day health, and I learn from that.

Mine has gotten so bad that I have regular grand mal seizures from time to time, and sometimes it’s hard to carry on a conversation without looking weird.

user_9703-full (prelado – Parkinson’s Disease Community)Of course, how they’re doing with their medicine, mainly if it is the same as mine.

irish (irishtxn – HIV Community)How to keep unwanted stress out of my life! It’s hard enough being one of six siblings living in the same town, much less [being the one living] with our mother. I’m not getting any real support from them as I’d like.
My siblings do take care of my mother’s prescription costs, but they rarely offer to come in and get my mother out for while. I might rephrase that [it would be nice] to ask her to their homes.  She rarely ventures away from the house unless it has something to do with the church.  Never gets to see the other children unless it is a holiday such as Christmas.
slicky (slicky – ALS Community)I am like any other patient.  I have not experienced everything.  There is always something new to learn, and I think the best way to learn is to ask other patients on this site.  The doctors can tell you what they know from reading books or other doctors, but getting knowledge from patients firsthand is the best way to learn how to cope or [determine] the best equipment to use, or the best treatments.
I am not saying every comment on PatientsLikeMe is right, but most of the information you get on this site really is valuable to all patients and their caregivers.  The best thing is you can choose to try it for yourself or ignore it.  It really is amazing to see all these patients come together to help one another.  There is no stupid question.  If you want to know, just ask and you will get a response.
And the best thing is it is from people all over the world, so some countries may have different studies or trials or meds we do not have here in the U.S.  I have talked to people all over the world who have asked me how I have had ALS so long and what do I do to keep going.  I tell them my regimen.  I also tell them I can only tell them what seems to work for me, as most everyone knows ALS affects each of us differently, so what works for one person may not work for another.
picture_5-full (sunnyt – Fibromyalgia/CFS Community)When I discovered PatientsLikeMe it was a God-send! It was so good to know I was not alone in this. Most people do not believe what we go through. It is so hard to explain the pain and tiredness of this. I know, I was once one of the doubters.
This year I would very much like to learn how other deal with this, for one. And what treatments others use also, more alternative treatments. The list goes on…like how to cope everyday with not knowing how you are going to feel, where you will hurt or how tired you will be.
I am sure of one thing, I will probably find other answers to questions I did not even know I had! I can not thank PatientsLikeMe enough for the support and information I have gotten in the past year.
suevand1 (suevand72 – Epilepsy Community)

I don’t really know what I plan on learning this year. I really haven’t given it a lot of thought since I am so busy at home with family and work, and now I am going back to school part-time. I know everyone is just trying to get back to normal after the holidays. But I live in a family where nothing ever slows down. Believe me, you want it to, but it won’t. I do learn more about seizures (epilepsy) each year.

sapphyr (Sapphyr – MS Community)As usual, tips for living with a disability that have actually worked.
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