Archive for April, 2010

Living with FTD: Updates on FTD

2010-04-27

First I want to discuss the spring newsletter of the AFTD.  Go here to receive the spring newsletter online.

During the meeting in Miami  discussed in the AFTD newsletter, they mention two proposals, having a national patient registry and a national data base.  I think both of these are key projects that will spread information about FTD to those who need it.  The database hopefully will be ready for piloting in Fall 2010.

I agree with the steps for AFTD strategic planning.  I hope that they will have enough support staff and volunteers to educate the medical community on a widespread basis about  FTD. Perhaps there will be some doctors/nurse practitioners/physician’s assistants that are willing and eager to learn about FTD?  I went to a Woodstock Sim on Second Life that was up above the clouds.  Maybe that is where my head is right now.  Most neurologists do not know anything about FTD and even some FTD specialists do not understand that there is a wide variance of symptoms in FTD patients and patients often have other related neurodengenerative disorders in addition to FTD.

Dr. Boeve was involved in the Miami  meeting mentioned in the FTD newsletter.  My FTD doctor is Argye Hillis.  When I spoke to her earlier in the month,  she told me that she, Dr. Boeve and other FTD specialists met at  last  year’s May meeting in Ft. Worth, Texas for FTD caregivers.  They are making plans to form a group of FTD specialists who will meet together on a regular basis to exchange information and standardize practices of testing and treating people with FTD.  Dr. Boeve and some of these plans are mentioned in the newsletter.

There is another caregiver’s conference in May at Ft. Worth.  Several of us have been talking about the need for FTD sufferers who are still able to communicate and have insight into their disease to have a discussion or panel at these conferences for FTD.  We are very grateful for the support that these conferences provide our loved ones.  We as FTD patients would also like to be included into these activities not only for our own well-being but to provide information to caregivers from the aspect of a person with FTD.

Myself and others I know with FTD  are looking into being able to speak at the International conference.  I encourage as many people with FTD who are able to attend these conferences and let people in the medical community and caregivers know that some of us with FTD have much insight into our disease and are willing to share.  If anyone can help us in our endeavors to speak as FTD patients at seminars, conventions or web based activities please contact me.

Susan Grant will be having a get together in Colorado in May to celebrate the finish of her film Planning for Hope. I don’t have the details on hand but I will provide them later.

Going back to the FTD Newsletter, Dr. Mackenzie’s statement  that virtually all pathological forms of FTD can now be assigned to one of three major molecular categories is good progress towards unlocking the keys of the nature of the beast.

The genome study is exciting news for people who have FTD that runs in their families.  I know a few people who have heredity based FTD.   It is bad enough to have one member of a family have FTD but even worse when multiple members have FTD.  Instead of multiple family members bringing some clarity and connection with a family it often leads to even more denial and disharmony.  Siblings or parents of someone who have FTD that also have FTD are often in denial about their own illness ( a common symptom of FTD) and this makes it that much harder for the person with FTD who understands about the disease to make progress towards understanding and unity.

There has been exciting news about the drug Davunetide  owned by Allon Therapeutics.  Early clinical trials show promise in treating FTD.

Frontier Dementia Research Group is doing research in frontotemporal dementia.  See this website for information about their studies and publications. They also have caregiver centered studies, carer support and research study information.

That’s all for now.  I will continue to let you know more as I receive updates.

May there be peace that guides the planets and love that steers the stars ………..

Posted in FTD, Living with Illness | 2 Comments »

LIVING WITH FTD: People spreading the word about FTD.

2010-04-26

In this post, I want to talk about people and groups who are spreading the word about FTD.  FTD is still a relatively unknown disease and it is people on the front lines and in the trenches who are doing good work to spread the word about FTD.  Many people believe FTD patients have little insight into their disease.  I am here to tell you there are a growing number of people with FTD who are well aware of their disease and going to great efforts to spread the word about FTD.

For those of you who don’t know, there is a wonderful chat group at The FTD Support Forum. We meet on Tuesdays and Fridays at 2:00 p.m. central.  My user name on the support forum is Mermaid.  Any of you who have FTD and are able to communicate or have a loved one who can help you communicate, I encourage you to join the FTD Forum.  There is a lot of support and good information at the forum.  Our chat group has many friendly folks who are waiting to welcome you with “open arms.”

If you want more information about the chat group, join the FTD Forum and send a private message to Mermaid.

Also, many people who have FTD  are doing wonderful things to spread the word about FTD.  John who has FTD   is very involved with the Alzheimer’s Organization.  He has been working with his local chapter and has recently been to Washington to speak to Congress about pre- senile dementia and FTD.

Tracy Mobley  has written an article as a guest blogger this month on  AlzheimerSpouse.com about what it is like to live with FTD.

Susan Grant has finished her film Planning for Hope.  I really encourage everyone to go to her website, FTD-The Other Dementia.  She needs volunteers in all areas to help her with film distribution.

In addition, there are several people with FTD who have blogs and websites.   If anyone has an FTD/Neurodengerative Brain Diseases blog or website and I haven’t put you on my blogroll, please let me know.

In the next six months, I am planning to have a place on the virtual world, Second Life, for people with FTD, other Neurodegenerative diseases, chronic pain and those who are terminally ill.  More news on that later.

There is a Webinar on Thursday, April 29th.  It is Free Webinar Cognitive and Behavioral Issues in PSP. CBD and FTD with Dr. Brad Boeve. It is from 8 to 10 pm EDT and you can register at this link.  Some of the members of our chat group are patients of Dr. Boeve’s and I’m sure he has some valuable information to share.

Anyone who is doing projects to let people know what it is like to live with FTD or focusing on the lives of FTD patients please contact me.

I will keep you posted with updates about what is going on in the FTD world.

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Posted in FTD, Physicians, Second Life, Treatment | 3 Comments »

Updates on Pain

2010-04-26

Hi Everyone,

I have had a lot going on and I wasn’t able to post last month but I am back and hope to write three posts this week.  Most of you don’t know I like to visit second life now and again, lately it has been again and again lol.  Right now, I am in a virtual world at a writer’s camp out site. Nothing like writing in the woods.  Today they are having an all day writer’s marathon.  I don’t think I will be able to stay for eight hours but I hope to use the time to get out these posts.  Anyone who is on Second Life, my avatar’s name is Eppie Shoreman.  Any of you who are on SL or plan to be on SL, there is a support group for chronic pain at “The Centering Place” on Second Life.  Contact me for details.

Now I am going to give you some updates on pain.  I’ve been meeting many people in the last few months who have other illnesses and also have developed chronic pain disorders.  Many of them are suffering greatly because their doctors do not know how to treat their pain.  I encourage all of them to see a pain management specialist.  Unfortunately, as many of us know, even seeing a specialist is no guarantee that your pain will be controlled.

There is some new information in the American Pain Foundation’s Spring Newsletter.  For those of you who are interested in Occupational Therapy there is an article written by an Occupational Therapist.

In “Health Decision Putting Your Best Foot Forward,” the author talks about challenging the decision that the doctor knows best.  Most of us who have chronic pain disorders have found ourselves in the difficult position, should I listen to this doctor and go quietly out of his or her office without adequate support for pain control or should I speak up for ourselves and try to get the medication and therapies I deserve?

Getting adequate pain relief unfortunately often  means seeing several doctors until you find one that will really listen to you and agree to be part of your team in helping you achieve good pain control.

I have found that bringing Selch to my appointments has been a really big help.  Having someone go with you to your doctor’s appointment who is knowledgable about your condition and is willing to stand up for your rights goes along way in helping you to find  health care professionals that will help you with your pain.

If you don’t have a friend or a relative who can fill this role, I suggest that you check out local pain support groups in your area and see if you can find someone in the group who is willing to be a “patient advocate” for you.  If you can’t find someone locally search for support services available in pain foundations and also visit different pain support groups on the Internet.  Post that you are in need of someone in your are to act as a “pain advocate” for you.  You may not find someone right away but I’ve found that when I am looking for support, persistance matters.  If you are in too much pain, ask a relative or friend to do this for you.

I cannot stress how important it is for anyone with a chronic pain disorder to get the help they need to achieve good pain control.  Any of you that have other ideas and experience to share regarding finding help for pain control, feel free to reply to this blog post.

Karen Richards writes some interesting articles on pain.  See “Growing Pains, a Predictor of Fibromyalgia,” She refers to an article in Reuters and talks about misconceptions about growing pains and how growing pains may be an early indicator of fibromyalgia.

Another very interesting article by Karen is “War on Drugs Has Ended – What Does This Mean for Pain Patients?” If you have read my blog, you know that I have posted more than once about the “War on Drugs.” Karen writes, ” In May 2009, nearly four decades later, Gil Kerlikowske, the new director of the White House Office of National Drug Control Policy (ONDCP), declared the war on drugs to be over.”  This guy must not be living on the same planet as those of us with chronic pain disorders.

Health care providers and even pain management specialists in growing numbers are refusing to give people who have chronic pain the narcotics they need to function day-to-day in their lives because of past DEA actions, pending regulations and the constant media exposure of the continuing War on Drugs.  Totemism regarding narcotics is still prevalent.  There are still so many people saying that we need to get rid of these evil narcotics that are destroying so many lives.  Eliminating prescription narcotics will do nothing to stop people from recreationally using narcotics.  They will just go to another readily available source to get their drugs.  Pain patients are left without adequate pain control.  When will the media and the government start caring about the millions of people in the world who are suffering from chronic pain?

About the ONDCP’s educational efforts regarding the needs of chronic pain patients, I am afraid it is too little too late.

The Pain Monitor from the APF has some interesting info for people with chronic pain. It has news information about different pain topics as well as resources for chronic pain patients.

These are some pain updates for April.  As always, I hope to be your faithful correspondent.

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Posted in American Pain Foundation, Chronic Pain, consumer driven health care movemnet, FDA, Fibromyalgia, governmental regulations, Health care issues, Living with Illness, Medical System, Opioid therapy, Pain Management, pain management specialist, Physicians, Politics, Second Life, Treatment, WarOnDrugs | Leave a Comment »