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FTD and the Holidays

The winter holiday season offers time for families to be together. Sometimes caring for someone with FTD means time together is difficult rather than joyful. The following are some tips compiled from caregivers to help families enjoy the season in light of their current situation.  

Consider your loved one's current abilities and limitations, and adjust expectations accordingly. For example, invite your family member to assist in the holiday preparations but break large tasks into small manageable steps that he/she can accomplish. It might take a little longer, but it will enable him/her to participate and take part in the family traditions. Likewise, spend time with family and friends but set limits as needed on the number of people at one time or the duration of visits and according to what your family member can enjoy or tolerate.  

Search for a balance between maintaining your regular daily routine, including your loved one in seasonal traditions and celebrations as much as is possible and observing traditions that are important to you even if your loved one cannot participate. It may be painful to celebrate traditions without him/her, but creating a festive and positive environment can benefit everyone; so play your favorite holiday music and dance or sing along even if your family member can't join you. You can still build precious memories of this holiday season even if they are tinged with sadness.  

For many, the winter holidays are a celebration of love for family and friends. Caring for a loved one with FTD is year-round act of exactly what the holidays are all about, so grant yourself permission to be on the receiving end of the season's gift giving traditions -- you deserve it, and there is no better gift you can give to your family than caring for yourself. 

Research Focuses on Basic Mechanisms and Drug Development 

The month of November was a busy one for FTD research, with major meetings on conducting clinical trials, accelerating therapy development, and on the basic science of FTD.  Things kicked off November 5th in San Diego with the "Clinical Trials in Frontotemporal Dementia and Related Disorders" session at the annual Clinical Trials in Alzheimer's disease (AD) meeting.  The goal of this session was to convince both AD investigators and representatives of biotech and pharmaceutical companies in the audience that FTD is a good prospect for drug development.  The argument was made that much of the research done in FTD could be applicable to Alzheimer's but that the studies would be easier to conduct in FTD.  AFTD Medical Advisory Council members Ian Mackenzie, M.D., Howard Rosen, M.D., and David Knopman, M.D. were speakers along with Drug Discovery grantees Adam Boxer, M.D., Ph.D., and  William Hu, M.D., Ph.D. 

Following the session on clinical trials in FTD, the FTD Treatment Study Group (FTSG) held its fifth official meeting.  Composed of academic researchers, clinical investigators, industry representatives and funding organizations, this group meets regularly to share ideas and advance joint projects to accelerate the development of new treatments for FTD.

On November  10th and 11th, the 6th Brain Research Conference in Washington, DC focused on "RNA Binding Proteins in Neurological Disease," a topic that is very relevant to FTD.  Several of the proteins that have been found to be mutated or misformed in FTD (TDP-43, FUS and possibly the newly discovered C9ORF72 protein) have the ability to bind RNA, the intermediate step between genes and proteins.  TDP-43, FUS and C9ORF72 have also been linked to Lou Gehrig's disease or amyotrophic lateral sclerosis (ALS) and there were many ALS investigators at the sold-out conference.  As ALS and FTD investigators join force to study these common mechanisms behind two very different diseases the potential for developing new treatment approaches for both disorders also increases.

Yeah...We're here to Fight This Disease.

One of the exciting additions to AFTD's fundraising tools is called Givezooks!, an online peer-to-peer fundraising platform.  Anyone who wishes to host a grassroots fundraiser can now create their own fundraising webpage, email their family and friends from the webpage, and collect donations online for their event.  It's a great, easy way to raise money for AFTD.  Creating a webpage takes about 15 minutes and AFTD staff is available to help.  Click here to access AFTD's Givezooks! page.

Help us celebrate Valentine's Day!  AFTD will host an online campaign called "AFTD's With Love Campaign 2012," where supporters can create a "With Love" fundraising page to tell their own FTD story and engage their circle of family and friends in supporting AFTD.  It will be a great way to celebrate Valentine's Day and honor loved ones.  The campaign will be introduced in mid-January, but in the meantime, be thinking about what your "With Love" letter would say.  

Upcoming issues of The Gateway will feature fundraising events happening around the country, thanks to members of The AFTD-Team.  More information on grassroots fundraising can be found on our website...simply click here.

From Valli Haines

I lost my husband, Tom, near the end of summer this year. As I reflect back now, I was thankful that I remembered to just be a wife to my husband now and again.  I had become a full-time caregiver, and sometimes I forgot to be a wife.

The week before Tom died, I took a day off and spent it with him. I had to plan ahead, but I was able to take him to a mall and go to his favorite place to eat. We had a nice afternoon together.

I had gotten so caught up in changing him, feeding him, cleaning up after him, etc. When I had a minute, I would try to get some sleep or do something for myself.  I needed that, but we needed to be a couple once in a while, too.  I'm so grateful that I took a day out of my schedule to just be with him.

So don't forget to be a couple...even if it's just going out to eat. Tom couldn't talk to me, but I could see that he enjoyed himself, and he had that look in his eyes that he loved me.

If you have Words of enCOURAGEment that you would like to share in upcoming issues of The Gateway, please email them to [email protected] with "words of encouragement" in the subject line.