Where’s the Blog?

It’s been a week since my last post and surprisingly it’s been brought to my attention.  That being said, I have had in-home physical and occupational therapy.  Physical therapy went over exercises that I should be doing in order to build my endurance.  One exercise I particularly like is standing and working on my core muscles.  It feels good to be on my feet again.  Basically, I need to engage my muscles while I still can so that I can keep things working as best they can for as long as possible.  Occupational therapy is helping me with multiple issues:  the bed (always an issue), transferring using a transfer disk and Hoyer lift, and stretches to help with flexibility along with many other little things that come up.  The therapy is provided by Duke HomeCare & Hospice.

Co-Captains Kathryn & Joe

Hospice is a word that scares a lot of people.  Dictionary.com defines hospice as a program of care and support for the terminally ill at home.  ALS is a terminal illness.  Every year approximately 6,000 people in the U.S. are diagnosed with ALS and they receive a diagnosis with a life expectancy of two to five years.  I have faced this diagnosis as my reality but I am fighting to break the odds.  Every day is a bit of a struggle.  Sometimes ALS wins in some small way and most times I fight for my independence.  I try to use whatever assistance is available (and affordable) to win my fight.  I am lucky to have a husband who values me more than his bank account.  Every day we fight to figure out our journey against ALS.  To all my PALS out there, don’t give up.  Do what you can to fight ALS when you are able.

Part of my fight means that I will be taking part in research to find a cure or at least a treatment for ALS.  Thursday, I am traveling to Boston, MA, for a research study that looks at blood biomarkers in both Parkinson’s Disease (PD) and ALS.  I will be flying on a plane and renting a power wheelchair.  These are inconveniences that I hope I can deal with.  Sure, I hope this research will benefit me, but I also hope it makes a contribution that helps others.  It is another part of advocacy and I hope I am up to the task.  Please think of me and wish me well in my endeavor to fly with a disability.

References

hospice. (n.d.).  Dictionary.com Unabridged.  Retrieved July 21, 2017 from Dictionary.com website http://www.dictionary.com/browse/hospice

 

 

Clinic Day and Awareness

Respiratory Testing

Tuesday was clinic day.  ALS clinic days are always Tuesdays.  It was probably the quickest visit I have had so far–just under 4.25 hours.  I planned on writing about all what goes on during clinic but changed my mind.  Too boring for me after a year of visits.  Instead, I’ll simply post a photo from my time with the respiratory therapist which is always lots of fun.  Now on to advocacy matters.  Advocacy is always exciting when you can make change happen.

I find it ironic that of the three advocacy emails I have written, one to local government and two to corporate entities, only the corporate entities have responded.  Governments must not be as concerned with their constituents as businesses are with their customers.  In fairness to the businesses involved, I will not be posting their names. They responded ASAP and promised to take action. The first involved a dumpster parked in a handicap-only spot.  Management had it moved.  The second was a companion restroom being used for storage.  That is a work in progress and I will be following up on it.

The excitement of actually getting things done makes me consider searching out a local official who wants to work with me on disability awareness.  Having you, my audience, assist me in raising awareness of disability needs is useful.  It seems that disability awareness needs more awareness.  As many caregivers, including one smart older sister, have told me, you never notice these things until they affect you personally.  So please speak up and speak out when you see something wrong.  It’s not embarrassing to make your voice heard, it’s considerate.  Your disabled friends appreciate your help.

 

Real life stuff

I’ve been thinking recently about how ALS is a lot more than just a physical change.  ALS takes over your life.  Many people offer help.  But I sometimes wonder, how much is too much to ask?  My needs are all encompassing.  Do people realize that?  Is their offer of help just touching the surface or do they want to get down to the nitty gritty?  I am typing this blog on my own, but what about when I need to get dressed?, scratch my nose?, use the toilet?  or floss my teeth?  Believe it or not, some people have chosen the toileting over flossing.  I honestly don’t know what I myself would consider off limits.  There are no secrets with ALS.  If you don’t have a REAL life partner ALS sucks even more, if you can believe that.

 

Here we go … First blog post

My initial thought was to direct the blog towards my progress with ALS. I ’m not sure what direction it will ultimately take but ALS and disability rights are two of the major topics I will probably focus on. You can help me by pointing out violations you see.  Alert the management and ask them to correct these types of violations.