Let’s stay on top of the latest health news — in case you missed it, check out this round up of some of the stories making headlines in May.
- May is ALS awareness month: Later this month, advocates from across the U.S. will head to Capitol Hill to meet with their legislators. Check out how you can get involved and join the fight against ALS.
- Congress passes $3 billion increase in NIH funding: $140 million of the increase will go to the BRAIN Initiative research projects that contribute to the knowledge and understanding of ALS. More info.
- May is Lupus Awareness Month: Nearly two-thirds of people know little or nothing about lupus beyond the name, according to the Lupus Foundation of America, which is promoting the “Go Purple” campaign. Get ideas for boosting awareness.
- A link between the “mono” virus and lupus? A new study published in Nature Genetics shows that the Epstein-Barr virus (EBV) — known for causing mononucleosis — may increase the risk of lupus and six other autoimmune diseases by changing how some genes are expressed. Check it out.
- “Suspect” Parkinson’s drug faces scrutiny: Following reports of hundreds of deaths and adverse events, the FDA is re-examining the safety of Nuplazid (pimavanserin), which was approved in 2016 for treating hallucinations and delusions associated with PD. Read more.
- Emerging treatments for small-cell lung cancer (SCLC): Immunotherapy and other emerging drugs called PARP inhibitors and Rova-T(Rovalpituzumab tesirine) are among a group of new therapies showing “early promise” in clinical trials for the treatment of patients with SCLC. Hear from one patient.
- Life after a stem cell transplant: The BBC’s Caroline Wyatt had a stem cell transplant in Mexico to reboot her immune system. A year later, she shares how she’s doing. Read Caroline’s story.
- New drug for secondary progressive MS: Phase 3 clinical trial results show that a new drug could slow down the progression of symptoms for people living with secondary progressive MS. Get the scoop.
- Ever heard of forest bathing? Research from the Nippon Medical School in Tokyo found that just standing in the woods could reduce depression scores and improve immune function. They also found some surprising benefits of dirt… Get the full story.
- Looking closer at medical marijuana strains and doses: A new study draws from user-reported data on marijuana smoking habits to understand the effect of weed on depression and anxiety. From different strains to number of “puffs,” see what was uncovered.
- Combining treatments for better results: Researchers at the University of Texas found they could boost the positive effects of cognitive processing therapy (CPT) by adding transcranial magnetic stimulation. More info.
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- Filed Under: ALS, Bipolar disorder, Cancer, Conditions, Depression, lupus, Mood Conditions, Multiple Sclerosis, Openness, Parkinson's Disease
- Tags: ALS news, community newsletters, lung cancer, lupus news, mental health news, MS news, news roundup
Last week, we posted highlights from our December community newsletter interviews. As we close out 2010, we want to spotlight another question asked this month – one that is relative to all members, all patients (no matter the condition). What obstacles have you faced and overcome this year?
To review all of our newsletters, you can visit our archives page here.
* * *
||(Amy) What obstacles have you overcome this year?
|(ellieGADsufferer – Mood Conditions Community)
First of all, I became well enough to leave my local psychiatric hospital after having been an inpatient for six months. My anxiety means that all new things – even getting on a bus to go somewhere new – make me have severe panic symptoms.
I now make sure I am out of bed by 0700hrs during the week and make myself go out at least three times per week, whether it is meeting friends for coffee or attending appointments. Otherwise I will return to “avoidance,” whereby I cut off all contact with friends and family, including calls and text messages.
||(kidneygirl1198and0505 – Transplants Community)
I have had to deal with and overcome the struggles that come with tardive dyskinesia. Reglan has been black-boxed [with a FDA-mandated warning about the risk of tardive dyskinesia] over the past two years, but I took it for three or four years before that. [Read kidneygirl1198and0505’s Reglan treatment evaluation for more details.]
Signs of tardive dyskinesia may include: continuous and repetitive movements of the mouth, tongue, and jaw; facial grimacing; lip smacking, puffing of the cheeks; uncontrollable movements of the arms, legs, fingers, and toes; and swaying motions of the trunk or hips.
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.
||(mountain lady – Parkinson’s Disease Community)
One of the biggest obstacles in my life this year was getting over the death of a very close friend. This person became ill and died within a few months. Her death made me more aware of how precious life is.
Another obstacle was in the adjustment of my medicine for Parkinson’s. My doctor wanted me to try a new medicine with fewer long-term side effects. I tried it for several months but did not do very well. I am currently back on my original medicine, taking a little more than before, but I have readjusted well.
||(andrewn78 – HIV Community)
This year I overcame a hard breakup. It was difficult because I thought we were going to be together for a longer term relationship than we were (only nine months).
It was also difficult to start dating again. I forgot how many people don’t know much about how HIV is contracted and that there are many people who would never date someone who is living with HIV or will date someone living with HIV but the fear of contracting HIV puts too much of a damper on the relationship. It’s a difficult process.
||(Tommy Maker – ALS Community)
I’ve spent a lot of time this year getting used to the fact that I have become dependent on others.
Prior to diagnosis, I sat on the local council, was involved in the organization of all types of public elections and I was a trade union official. These were voluntary roles which involved helping others. Yet, initially, after diagnosis, I had an enormous difficulty accepting help from others. However, I’ve come to realize that I have a loving family, fantastic friends and very supportive colleagues. I have found that many of them don’t know what to do and are very glad when I am specific as to what they can do for me.
I’ve also learned that no question is too personal. I struggled a lot with questions about personal hygiene and when I found the courage to ask these most intimate questions, I found that the professionals were so familiar with the questions asked that, beyond the initial embarrassment, we quickly went on to find solutions. I have also found that when people ask questions about my condition, they are entitled to an answer, an honest answer.
||(Nates-Sweetpea – Fibromyalgia/CFS Community)
Oh my, 2010 has been a huge year! I didn’t know how I was going to get through it whole, but here I am knocking on 2011, one step at a time. I had to rejoin the workforce on a part-time basis this year, after years of not working (not being able to work), but I had to as my husband had lost his job about 18 months previously, and we were facing bankruptcy!
So I’ve been working part-time since last February, about 17 to 32 hours a week. We did go through bankruptcy, lost our home, vehicles and our high 700’s credit score with it. But you know what, I survived. Actually, no, I overcame, with the help of a very supportive Sunday School class, great friends, and a wonderful husband and daughter.
|(kg10043 – Epilepsy Community)
I work for the US Forest Service and, as of July, made it to retirement age still working. Two times they tried to force me to take a disability retirement. To keep working I have had to move around to several jobs in four different states because of my health. Not only have I made it to retirement age, but I am still working even though they are trying to get rid of me once again. (What a joke when you consider that the federal government has a quota for disabled employees).
It has meant I have not only had to work in a variety of locations, but doing different kinds of work. Just in the time on this forest I have worked as the Oracle DBA in the computer shop, in GIS, later in Forest Planning, with a crew of five Soil Scientists, a Botanist and myself mapping the soils and ecological types and writing recommendations for management. And now for the last two years I have been “unfunded” and doing all kinds of random jobs for projects in the office. Just this year that has included supporting the USFS in legal challenges as well as jobs so simple as filing paperwork and addressing envelopes.
||(cobebu8 – MS Community)
For me, with multiple sclerosis and ADHD, my main problems have been the concentration to do what I need and want to do and fighting the progression of MS. I have RRMS [relapsing remitting MS] but since I have had it for 25 years, ever so slowly, it is progressing at the same time I get exacerbations. I have a new neurologist too, and he is part of a big group and getting through when I am having problems, is a problem.
Plus, with only SSDI [social security disability insurance] and not being able to find a part-time job, I have had to stop taking some needed meds and not going to necessary doctor’s appointments (e.g. my eye surgeon/doctor to see if the optic nerve is still swollen and I can’t do a necessary MRI because the insurance company won’t pay.) So to get help for my asthma, I am doing a research study to get free care. I haven’t found one for MS or depression yet.
- Filed Under: ALS, Chronic Fatigue Syndrome/ME, Epilepsy, Fibromyalgia, HIV/AIDS, Mood Conditions, Multiple Sclerosis, Openness, Organ Transplants, Parkinson's Disease, Rare Diseases
- Tags: ADHD, ALS, community newsletters, grand mal seizure, HIV/AIDS, inpatient, Mood conditions, multiple sclerosis, newsletter, panic attacks, parkinson's, Parkinson's Disease, psychiatric hospital, reglan, relapsing-remitting, RRMS, share and compare, SSDI, tardive dyskinesia, Transplants