Create A Joy List

In my mind February is the longest month despite it actually being only 28 days.  For most of February, or to be honest probably starting mid January, I struggled, I found it hard to experience any “joy.”  My self-diagnosis, seasonal affect disorder compounded with compassion fatigue.   I was emotionally drained.  I felt a reduced sense of personal accomplishment.  Mentally and physically I was exhausted.  What would improve my outlook? What would bring the “joy” back?

As I was chatting with a Huntington's disease caregiver, I suggested we both needed to “create a Joy List.”  We needed to remind ourselves of the things that bring us “joy.”  We agreed that the act of “creating our Joy List” or even just looking at our “Joy List” would perk us up and bring us “joy.”

Last week I took my own advice, and “created a Joy List.”  As a visual person, I decided my list would be images of things that bring me "joy" that I post on a new Pinterest Board that I call “My Joy List.”  Right from the beginning I found it working.   It was a “joy” to search for images for the first few items I pinned to my list: my husband, my children, and a cup of tea.  They bring me "joy."  I was excited and joyful in this simple little activity.  That first night it would have been easy to add more to my list but I wanted to spread the "joy" out.  Since then I have added a few more “joys” to my list.   Today I pinned Jeanne Robinson’s video “Don't Bungee Jump Naked!"  Watching Mrs. Robinson always brings me "joy."  I'm looking forward, with "joy", to the first time I see crocus this spring, I will pin a picture of crocus to my list that day.  It is going to be easy to add something new on a regular basis.  My new "Joy List" is bringing me "joy."

My “Joy List” is growing.   I am looking forward to adding more to my “Joy List” and I encourage you to do the same.  You may want to use Pinterest or even just a paper and pencil but “create your Joy List.”  I hope you will share with me the “joys” you find when you “create your Joy List.”

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Do Small Things With Great Love

I found the quote "do small things with great love" in an image on The Caregivers Space.  This phrase spoke to me.  I used this in Philly Cure HD's February E-Newsletter and on my Facebook cover photo.  Now I am using it again for the theme of this blog.  Daily our Huntington’s disease community is “doing small things with great love."  Each “small thing” is so big.

This past week someone bought and sent a sympathy card.  That is not big.  It was not a big that someone brought a pizza into a nursing home.  It took only a few seconds for a friend to share an interesting article "Our Amazingly Plastic Brains."  When a person fixes someone their breakfast and washes the dishes it is a small thing.  It is a small thing when someone walks away when a person with Huntington's disease is constantly complaining.  When a person takes medications to reduce his anxiety it is not so big.  I could write on for a long time about the "small" but important things I see happening in the Huntington's disease community.

It is a small thing but next Saturday Philly Cure HD is having a Hearts of Hope Social Gathering.  The chance to talk together is small yet big.  We are going to make Hearts of Hope to share with individuals in nursing homes.  We hope that you will join us in such a small things.

As you read this I encourage you to count the "small things" you are doing "with great love."

I CAN BE REACHED 

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 BY EMAIL AT JOANNEHDCARE@PHILLYCUREHD.ORG,  

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Live Well with Huntington's disease

The words live well with Huntington's disease will hold different meaning for each individual who hears them.  I ran across the phrase "live well, laugh often, and love much."  Does this phrase explain what I mean?  Yes but this and much more.  I guess when pushed to describe what I mean by live well with Huntington's disease I say that each person has to choose a life style that works the best for them.

So what can I do to help others live well with Huntington's disease?  Since eating well and getting a good night’s sleep are important, I share reminders like the recent HD Buzz's article "HD and sleep.”  I encourage them to find laughter in their life.  After I found myself chuckling when viewing a video "Head Stuck" I posted it on my Facebook page.  In our Caregivers Gatherings we often talk about how sticking to a routine is a great way to keep stress levels lower.  When a friend could no longer work due to his HD, I helped him explore volunteer opportunities.  Now his work, in a nursing home, gives meaning and purpose to his life.  I share tips with caregivers.  Tips like everyone is entitled to an occasional meltdown and the importance of accepting help.

What do you do to live well with Huntington's disease?

Living with HD in your life is hard so it is important that you live well with Huntington's disease.  

 I CAN BE REACHED 

BY PHONE AT 215-219-3521,

 BY EMAIL AT JOANNEHDCARE@PHILLYCUREHD.ORG,  

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Thoughtful Wishes

Anticipating the year ahead I have many wishes.  With each passing year; 2015 will be my twelfth supporting the Huntington's disease, HD, community; my list of wishes gets longer.  I found the following quote about wishes:

Stop the habit of wishful thinking and start the habit of thoughtful wishes.  Mary Martin

I have a deep faith in God and so I find many of my wishes for my Huntingon’s friends end up in my prayers.  One of my prayers is of thanks for all the dedicated people who work on treatments and a cure for HD.  I pray they continue to find the strength, the wisdom, and yes the resources they need to continue their efforts.  Another prayer is for each individual affected by HD to feel the care, the support, and the strength that he or she needs to live with the challenges of HD.  I pray that what I offer is helpful and makes a positive difference in each life I touch.

As I ready myself for 2015 and as I go about my work supporting the Huntington’s disease community I have one more prayer. I pray that I avoid wishful thinking and instead I am guided by thoughtful wishes.

Wishing the best for all for 2015

I CAN BE REACHED 

BY PHONE AT 215-219-3521,

 BY EMAIL AT JOANNEHDCARE@PHILLYCUREHD.ORG,  

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With Assistive Communication Their Voices Will Still Be Heard

WEDNSDAY, DECEMBER 10, 2014

With Assistive Communication Their Voices Will Still Be Heard

The loss of words hurts.  If you know of someone who is in danger of losing their words because of Huntington's disease, HD, I hope you will become a their advocate and look for the tools that will continue to give them a voice.  Please feel free to contact me or find helpful resources on the internet such as CommunicatePA. 

There are times I struggle to understand what someone with HD is telling me.  I often ask someone to repeat what they are saying.  There are many occasions I apologize as, despite their repeated efforts, I still cannot understand what they are saying.  I am glad when I find photos on the walls and window sills of a room in a nursing home.  Those pictures give me something to talk about during my visit to an individual with HD.  This is especially true when their advance Huntington’s symptoms includes their loss of understandable verbal communication.

These experiences heighten my sympathy and encourage me to advocate for support for anyone who is losing their ability to speak.

Within the last two months my advocacy has been successful.  For two individuals with HD, in two different nursing homes, the speech and communication therapists are preparing both of them for the time they will need assistive communication.  Both of them still talk.  For one, it is difficult to understand her on the phone and when she is upset almost impossible.  For the other, a young man in his late 20s, he admits that sometimes he cannot remember the word he wants to use.  I am thrilled that both individuals will continue to have words even when those words are not coming from their mouth. Work is underway to prepare both of them to use assistive communication.

It is important to use assistive communication early.  First, this specialized equipment is expensive and finding the funds for it can take time.  I expect that cost will become less of an issue as inexpensive assistive technology apps become available for downloading onto someone's cell phones and tablets.  My firsthand experience came from downloading free versions of the apps, Talking Tiles and Prologuo2Go.  The ability to learn is a second reason to start early.  The ability to learn new things becomes harder the more that someone's HD is advanced.  Last and the most important reason is that they both can still speak.  They can record their own voice.  They can decide what is important to them and record those words and phrases to prepare for the time when they cannot do so.

I am thrilled for these two individuals. Their words will not be lost.  With the help of assistive communication they will continue, despite their HD, to share their words.  Their voice will continue to be heard.

 I CAN BE REACHED 

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 BY EMAIL AT JOANNEHDCARE@PHILLYCUREHD.ORG,  

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 I ALSO MANAGE PHILLY CURE HD'S 

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Personalized Huntington's Disease Support

MONDAY, NOVEMBER 17, 2014

Personalized Huntington's Disease Support

In January of 2004 I had the privilege of training with a wonderful woman, Gloria Fritz, who shared her wealth of knowledge about supporting the Huntington's disease, HD, community.  Up until this time I had been working with non-profit organizations that supported individuals who were intellectually and developmentally disabled and with individuals with mental health issues.  From all my various employment and career mentors and from what Gloria shared, I learned that support for an individual has to be personalized.  This belief, the need for personalized support, has been and continues to guide me as I provide "Support for the Huntington's Disease Community"

As I continue to blog, I will be sharing my thoughts and ideas around support to our HD community.  Yet I encourage each of you to recognize that your needs are specific to you, that they are different than other reader’s, and that you need to adapt and personalize your own support.  I hope you will communicate with me about your personalized needs and supports and that you follow my blog "Support for the Huntington's Disease Community".

For other support I can be reached 

by phone at 215-219-3521,

 by email at joannehdcare@phillycurehd.org,  

I also regularly post on my 

facebook and Google+  pages. 

 I also manage Philly Cure HD's 

webpage, facebook , google+, pinterest, and Youtube pages.