I Want You

Living with ALS is tough sometimes.  I just completed a clean-up of Facebook friends.  I am so tired of voicing an opinion to the opinionated and being called a hater or terrible person.  This is a common occurrence among family members.  The typical spewers of sarcastic wit can’t take it being thrown back at them.  It seems they can’t even recognize when you are not being sarcastic and just trying to help.

The phrase I hate the most is “I’m sorry you have ALS and I wish you the best, but I just can’t stand you and don’t ever want to talk to you again.  Bye.”  Okay, that is not an exact quote, but you get the idea.

So here I am searching for understanding and living with a fatal disease.  Can you love someone who wants to be your friend but voted for the other guy?  I guess time will tell.

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Wash-out at 60

Friday is the day my wash-out from the Tirasemtiv clinical trial is over.  I really did enjoy those fog-free days.  I felt less woozy and tired, but on the downside, my muscles felt more fatigued.  I am very interested to get back on the drug and see if my muscles have a bit of a comeback.  I missed them.  I don’t enjoy the muscle weakness.  The other day I tried to lift a half-gallon of milk to make my oatmeal moister, and I could not do it.

There are so many annoying things brought on by ALS.  My speech is pretty bad.  I can’t lift my legs onto the wheelchair footrests without some sort of assistance.  I can’t reach behind to scratch my back or pull up my pants without my arm cramping.  I can, however, still type.  So you will still be annoyed by my rants.  Lucky you!

IMG_6376I had a date today with my aide.  We went to brunch to celebrate my 60th birthday on Monday.  I never imagined celebrating 60 in a wheelchair, but it is what it is.  If there were sidewalks here, I’d be out more.  It will be interesting to see what happens in the winter.  When I took the trip to Boston, I started shivering the second I got off the plane.  Seems that 60 degrees is too cold.  Heat does not bother me though, or at least it doesn’t bother me now.

ALS constantly requires you to adapt.  You may enjoy reading this article about technology’s effect on healthcare.  The author had the same idea I did regarding her Amazon Alexa.  I even changed the name just as she did.

Remember to support ALS research!

On Vacation with ALS

Here I am vacationing with ALS.  On the trip east our van was packed with a rolling shower chair, a Sara Stedy, and a Hoyer lift.  Damn you ALS!  You see, I learned a few things from the trip to Boston last month.  Being comfortable takes a lot of preparation, packing, and equipment.

I had a terrible time with a lot of things when I was in Boston.  At home I’ve been sleeping in a lift chair, but vacationing forces me to sleep in a conventional bed. Since the Boston trip I bought a sturdy inflatable bed wedge for traveling.  Regular pillows don’t work for me because they flatten as I sleep.  In the hotel bed I sleep flat on my back and raise my legs about 45 degrees.  My husband has finally accepted that this is a comfortable position for me even if he looks at me strangely.

Working with an occupational therapist (OT) also helped us devise a method to get me out of the bed comfortably.  I had a phenomenal OT from Duke HomeCare and Hospice.  I highly recommend that any PALS (Person living with ALS) take advantage of OT and find things that work for you.

There are many things on this vacation I would like to do, but the reality is that I cannot.  It took us 3 days to find the accessible ramp so I could see the ocean.  Here in the Outer Banks the dunes block my view.  I think it is ironic that an accessible ramp was built and everyone uses it.  I’m find that I am getting selfish with my handicap accommodations.  The non-disabled have everything else at their disposal, can’t I enjoy a ride to the beach without having to move out of the way for you?  Yes, believe it or not, some people expect a wheelchair to accommodate them.

Today my husband asked if I wanted to cut vacation short and go home early because there were so many things I cannot do.  I had to lecture him.  I told him I was the disabled person and I would find things that I can do and want to do.  I spend enough time in my house keeping busy.  Now is my time to explore and show the world that ALS is horrible disease, but PALS keep on going.  What else can we do?

Free Time and Beach Time

How do you spend your free time?  I spend my free time trying to improve my knowledge of blogging.  The writing is the easy part.  ALS is enabling me to learn things.  I’m trying to accomplish as much as I can while I can still do things.  Obviously, I don’t know how long that will be.  No one can tell me what course my disease will take.  It’s different for everyone.

So, audience are you out there?  I’d like to get some feedback.  Is there anything you want to know about this ALS journey?  I’m not an expert (and that may be a good thing) but I aim to educate.  Once you know more, perhaps it will interest you to volunteer or join an ALS Walk in the future.

Tuesday was another research opportunity.  I donated blood and urine to the National ALS Biorepository.  No travel involved this time.  A phlebotomist visited me at home to collect the samples.  I hope my donations help find a cure or at least devise a treatment for this disease.  Next, I am looking into making a post-mortem donation.  No, I’m not taking my last breath yet, but it’s always good to be prepared for whatever it is you want to accomplish.

Talk to you next time from the beach!

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Changes, Good and Bad

I am noticing some changes this week.  Monday I finished my clinical trial of Tirasemtiv, a drug designed to increase “skeletal muscle force and power while delaying the time to muscle fatigue” (Cytokinetix, 2017).  Read more about Tirasemtiv by clicking here.

Besides not being able to fall asleep the past two nights until after 3 a.m., I am not experiencing my usual woozy days since first starting the clinical trial.  This leads me to believe that I was actually receiving the real drug and not a placebo.

I am now in a four week “wash out” period before I receive the real drug.  After two weeks I can decide whether I want to continue on the drug free of charge for life.  (Life?  Who ever gets anything free for life?  Oh, people with fatal diseases.)  I will find out the results after the study closes sometime in October.

Last year at this time I had just left my job.  I was walking with a rollator (a walker with front wheels).  I had already stopped driving after receiving the diagnosis on April 29, 2016.  I still hear stories by people punching that time clock and wonder if they too are working to retire and enjoy life just as I was.  I enjoy it in a very different way now.  I have added some new friends to my repertoire who share the same disease.  It is easy to relate to people who are experiencing some of the same symptoms and heartache as I am.

So the keyboard is becoming my voice.  Some people have begun to ask me to repeat myself.  I already feel like the third wheel in conversations.  It takes too long to enter a conversation and get the words out.  A lot of people are impatient, myself included.  So often I want to add a comment or tell a joke but it’s too far into the conversation or too much effort.  It seems impolite to ask others to standstill while you’re trying to be conversational or clever.fullsizeoutput_c09

One magical technological advancement that is working to my advantage though is that I am able to use the text-to-speech app on my iPhone to talk directly into my husband’s hearing aids.

Alas!  I have so far successfully busted every husband’s dream of not hearing his wife.  Almost wish I had this app years ago.

@alsassociation #ALS @alsadvocacy #FindTheCure @alsncchapter

References

Cytokinetics.  (2017).  Putting our power behind a potential treatment for ALS:
Tirasemtiv.  Retrieved August 9, 2017, from https://cytokinetics.com/tirasemtiv/

Travel and study

Last week I traveled to Boston for an ALS Study.  The trip was partly an experiment to see if I could manage air travel and ALS.  It was a learning experience.

The flight to Boston was on Delta.  They offered me a comfort seat.  Sounds good, right?  Well, a comfort seat is the first row after first-class.  The first-class seats are wide and comfy and those passengers are seated first, even before those needing assistance.

When my turn came to be seated, I was rolled down the jetway in my transport chair.  From there I transferred to an aisle wheelchair.  A private company is contracted by the airlines to help get you into your seat.  I felt comfortable seeing two men, one well built, who could assist my husband.  I wore a gait belt to help with the transfer.  You are strapped onto a narrow seat; seatbelt around your waist and another around your legs. You are advised to keep your arms tucked in against your chest.  As I wrote in my Facebook post, if I weighed less it would help.

The transfer was a success, but the design of the aisle in the plane was comical.  The aisle was a straight run past the first-class seats.  Then it took a zig-zag to the left where my seat was.  Sort of a stupid design if you ask me and very difficult for transferring.  The comfort seat was not comfortable. It was a joke. The sides of the seat were rigid metal and I had to squeeze into it. I don’t think my bottom hit the seat the entire trip. (Remember my comment about weighing less?)  While the transfer went well, the seat was extremely uncomfortable.

The second transfer was not as wonderful and the lone gentleman contracted to assist was smaller than my first well-built hero.  Neither the size nor the look on the face of this lone ranger gave me the feeling that things would go well.  After a few acrobatics and a painful tug backwards and upwards by the lone ranger on the gait belt, I made it into the seat.  The lesson we learned is to instruct those assisting you so they know what you want them to do and how to do it.  It also helps to be cooperative and have an open mind because this transfer stuff can be hard work and is definitely not for the faint of heart.  I suggest practicing beforehand so no one gets hurt.

Even though the second leg of our return trip was delayed and we wound up arriving home at 2:30 A.M., we discovered that Southwest is the way to go.  Southwest is truly an airline that loves its passengers.  We were assisted into our seat by a wonderful steward named Dusty, who by the way, appreciated the gait belt and my husband’s instructions.  The midnight serenade by the Captain after a 2 ½ – 3 hour delay was an added bonus.

Although the trip was supposed to last from Thursday to Sunday and include a mini vacation, we cut it short.  My wise husband decided that there were too many uncomfortable factors to deal with this time around. We learned one important rule – secure an ADA room in a newly constructed hotel.  We hope to try again and have better luck.  Seafood and a cannoli did help wipe out some of the unpleasantness though.

Now onto the important part of our trip, the research study. The study was made available through PatientsLikeMe (PLM).  The folks at PLM are SUPER accommodating and truly understand the ALS struggle.  Their travel agent, Kathy Simonelli of FCM Travel Solutions in Boston, is also THE BEST!

The trip was to collect blood biomarkers from me for a study.  The study looks at biomarkers in blood to learn information about diseases.  In this study PLM partnered with Denali Therapeutics to conduct “a pilot study to evaluate the biological signature of ALS and to support the development of a potential new treatment for neurodegeneration.”  PLM “believe[s that] sharing your healthcare experiences and outcomes is good.  Why?  Because when patients share real-world data, collaboration on a global scale becomes possible.  New treatments become possible. Most importantly, change becomes possible.”  PLM believes that uniting people (patients and researchers) speeds “up the pace of research … [in the hope of] fixing a broken healthcare system.” And I think we all can attest to the brokenness of our healthcare system at present.  Collaboration.  Something our legislators need to put into action.

References

PatientsLikeMe.  Advancing discovery in ALS.  Retrieved August 4, 2017, from https://www.patientslikeme.com/advanceals?utm_source=denali&utm_medium=
partner&utm_campaign=denali_als_website_link

PatientsLikeMe, Openness Philosophy.  Our philosophy. Openness is a good thing. Retrieved August 4, 2017, from https://www.patientslikeme.com/about/openness

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.

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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

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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.