Pre-Blog ALS Updates

August 1, 2016

 Started recording my voice today.

August 2, 2016

I was fitted for custom leg braces today. Should help with foot drop. I was really tempted to get the Manhattan design on the braces, but I went conservative (yikes) and chose pink. Note to Duke: move the Center for Prosthetics & Orthotics out of that lousy location.

August 5, 2016

Slid out of bed this morning.  It’s not what you think. It’s a bad thing for me.  My feet slid on the carpet and I was unable to stop it.  Luckily, I did not land on my back like a turtle.  I fought for several minutes to get back on my feet.  My right hamstring is not happy today.

August 8, 2016

Just over 600 phrases have been recorded out of 1600.  Have to contend with a lot of other sounds in the morning to get it done right– locusts, lawnmowers, dogs barking, all the things we take for granted.

August 11, 2016

 Here are some facts about ALS:

  • ALS is not contagious
  • ALS can strike anyone and has no racial, ethnic or socioeconomic boundaries
  • Approximately 5,600 people in the U.S. are diagnosed with ALS each year
  • As many as 30,000 Americans may have ALS at any given time
  • The life expectancy of an ALS patient averages about two to five years
  • More than half of all patients live more than three years after diagnosis, but many people live with quality for five years and more

 August 12, 2016

“Rant of the day.”  Why do you think we have handicap parking spaces?  They are for people who are present in the car and handicap.  They are not for your brother, sister, child, or spouse to use simply because they are lazy and don’t want to walk a few more feet.  The hash marks also belong to the parking spot; they are not for you to park on.  If you are driving and do not know these rules, perhaps you should go back and read the driver’s manual.  This is one law that is definitely under enforced.  I am on my bandwagon promoting enforcement. Let the ticketing begin!!

August 13, 2016

Hubby was up at 5:30 AM to beat the heat and clear a path in the garage for my vertical lift.  Platform and lift should be installed next week.  Just in time ’cause those front steps are becoming like Everest.

August 16, 2016

Today’s visit to the ALS Clinic was 5 hours long (1:45 – 7:00 pm).  Saw many specialists.  My condition seems to be stabilized for now.  PT and OT visits at home to follow.  Got some instructions on how to get in and out of bed (sliding out of bed is not recommended!).  Learning how to work with the insurance company.  Many caring people work at the Duke ALS Clinic.  Support ALS Research!!

August 17, 2016

The lift platform is almost complete.  The lift will be installed tomorrow.  I will soon be able to get out of the house without a struggle.

August 19, 2016

Today I had to call the paramedics.  I violated my one rule of ALWAYS using my walker.  I felt like I was in a TV commercial — I fell and I couldn’t get up.  The right leg (The weaker side) would not cooperate.  I just could not stand up.  Luckily my fat butt protected me from injury.  Spent a lot of time trying to lose weight but guess it has its benefits.  I was told that ALS patients with higher BMI do better.  Who knew?

August 31, 2016

My perfectly good garden tub and tiled walls were ripped out on Monday to install a roll in shower for me.  Today my awesome coworkers at Alston & Bird are having a “Casual day for a Cause ” where they get to wear jeans when donating to a cause.  They are supporting me in my battle against ALS.  This is just one of the reasons why they have been on the Forbes 100 Best Places to Work in America list for 17 years in a row.  Thank you to everyone for your support.  Let’s beat ALS!

 September 6, 2016

Yesterday was a very emotional, shitty ALS day.  Part of the problem is trying to reprogram myself to my new handicapped lifestyle.  Handicapped accessibility is not the ideal that it should be.  ALS affects so much more than just mobility.  Did you know that ALS victims (that is my new term for ALS sufferers –> victims) can experience crying and laughing jags?  You can start laughing at the most inappropriate thing and be unable to stop; the same with crying.  It is terrible the way it affects the victim and the caregiver, both of us need support.

September 9, 2016

Alerting the manager of our local Wendy’s today of the poor location of the handicap ramp.

September 11, 2016 

I went to the ALS support meeting today and met some fascinating people.  All the PALS (persons with ALS) were in various stages of their disease.  Their CALS (caregivers of person with ALS) were, of course, also there.  I let them know that I was trying to be an advocate for all victims of ALS.  I told them I was also fighting for handicapped accessibility awareness.  Please help us PALS in our fight.  Support our CALS with your understanding. Keep our doctors and medical personnel in your prayers.  Watch for my blog which will be coming soon.

September 16, 2016

Slip sliding away… had another one of those mornings.  Lucky for me Joe was home to pick me up. Not very lucky for him though.  Also had my first in-home PT appointment today.  Learned some things about speech and hand therapy.  I get to say words like STOP and POO POO at the top of my lungs while playing with therapy putty (silly, right?).  I also have sit/stand exercises to do.  Next up is shopping for a thinner bed mattress so I don’t have to climb up into bed anymore.

September 22, 2016

Bed shopping ’cause mine is too high off the floor.

September 23, 2016

Had my second go round at getting leg braces today.  Didn’t have a choice between camouflage, New York skyline, or even pink ones this time.  I simply voted for the ones that would work the best.  And here’s my shout out to James at Bio-Tech Prosthetics & Orthotics who is going to do his best to get me Minnie Mouse braces even though the IP secretary in me doubts he will be able to accomplish that feat in view of the copyright laws

September 29, 2016

Having an exhausted kinda day.  Just hanging out napping on the sofa.  Everything feels stiff.

October 2, 2016

New mattress is in.  It’s a lot easier to get in and out of bed.  Had a great massage at Amazing Grace Spa in Hillsborough yesterday.  Was a challenge getting on the table/bed but worth it.  Having a great and loving caregiver helps.  Thanks Joseph Manginelli 

October 7, 2016

Trying out the new knee-high socks to see if they fit.  I will need to wear them under the braces that I am getting next week.  Also waiting on my scooter that will give me some independence when I go out.  (Can’t walk very far anymore.)  Joe and I just need to figure how to maneuver over the “curb sump” at the end of the driveway.  A power wheelchair won’t ride smoothly over it either.  On another note, I took Iron Man in the shower with me today.  OK ladies don’t get excited, it’s really my Life Alert that I use to call for help if I need help.  My husband kept mentioning that I didn’t wear it in the shower even though it is waterproof.  So, I tried it out today.  Ripped it off while I was washing. So, we’ll have to figure that one out too.

October 24, 2016

 Braces today.  Walking is wonky.

October 26, 2016

Doing okay.  Getting used to my braces.  They may need an adjustment (arghh) because I have a bad knee snap on my right leg.  Scooter is wonderful.  Learning how to maneuver tight corners in the house.  Have another month and a half until college classes are done.  Yes, that’s right, college classes.  I came this far and I am going to finish.  When I am done I will have a bachelor of science in criminal justice with a concentration in homeland security.  Then I will be bothering all of you to sign up for my team in the Walk to Defeat ALS in Raleigh next year.  Let’s get it done!!

November 4, 2016

Fell down today and called the paramedics.  No injuries.  Having good padding helps.  Then I go to my dental appointment using the transport chair.  Trying to be good and making it easier on everyone.  No problems until I get out of the office.  I’m in the ladies room when the building loses power.  There are no windows so it’s pitch black in the ladies room.  Thank goodness my sister was with me.  Only problem — the dental office is on the second floor and the elevator doesn’t work.  You can’t make this stuff up!

November 7, 2016

 At the ALS Caregivers Conference in Greensboro

November 29, 2016

It seems that an innocent chat with my brother and sister about the National ALS Registry turned into an interesting conversation about a farm in our hometown of Elmont (Long Island) NY that once took over the entire town.  My sister posted about an illness she has and inquired about other people who lived in the area.  Seems that a lot of people have cancers and other illnesses that they believe may be related to the water system or pesticides from the farm.  Our sister Barbara passed away from cancer in 1972.  This merits investigating/reporting.  Anyone have any ideas where to start?

December 11, 2016

Yesterday I beat down ALS and graduated from NCCU with a BS in Criminal Justice.  Today ALS is fighting back and kicking my butt.  I want to thank all of you who helped me on my journey especially my husband Joseph Manginelli who had to put up with being ignored and having plans changed so I could study.  Thanks to family members who were able to be here and to my son Matt Reis who was snowbound in Colorado. You will always be with me in my heart.  Thanks to friends who answered questions, helped with research, or kept me sane (I think). Thank you #NCCU for welcoming me and showing me how diversity and love of your neighbor work in this world.  I’m going forth to try and help with ALS Advocacy and I’m inviting all of you and all my FB friends to join me in this new venture.

December 28, 2016 

Had a very busy December.  Bathroom was renovated and graduated from NCCU.  Feeling good. No falls this month (hopefully I didn’t just jinx myself).  Moving on to figuring out a new daily schedule.  Looking for a handicap van next.  Things are constantly changing around here.  I need to set up my page for the Walk to Defeat ALS.  Hope you will join me.

December 30, 2016

Made it to the end of the month without a fall!  Meds are making me woozy at times.  Trying to figure out right time for taking them–before or after eating.  I think meds after carbs is best but scheduling is complicated.  An aide may be in my immediate future to help alleviate some of the burden on Joe.  Made my first crock pot meal which was a success.  I’m looking for recipes so send along any that you have that look good.  Looking to hear from you.  Email, phone, google chat, or visits will work.

January 1, 2017

I’ve been watching those TV commercials on Pseudo Bulbar Affect (PSA).  It’s part of ALS.  It is uncontrollable laughing and crying at inappropriate times and sometimes multiple times in a day but not necessarily every day.  I seem to be suffering from that. I need to address it with my doctor.  Don’t know how being in a clinical trial will play into getting medicated for PSA.  An update will follow.  Now, back to my New Year Golden Medal smoothie.  HAPPY NEW YEAR Y’all!

January 11, 2017

At my clinic visit yesterday I asked for medication to deal with extreme emotions.  This condition is known as pseudo bulbar affect.  The medicine may have the added benefit of improving my speech.  My walking was evaluated and it was determined that I have a lot of arm strength which is helping me to walk.  Seems my arms are doing double duty.  It was recommended that I get a power wheelchair to help save my energy.  I also saw the respiratory, occupational, and physical therapists.  It was a typically long (5+ hr) visit at the Duke multidisciplinary ALS clinic with a fabulous doctor and medical staff who are dedicated to helping PALS in their fight against the beast.

January 21, 2017 

Shopping for a handicap van and interviewing aides today.

January 27, 2017

Purchased my handicap van.  I am now the official back seat driver.

January 29, 2017

New flooring has been ordered to accommodate handicap accessibility.  Van was purchased Friday.  Now waiting on loaner power wheelchair while mine awaits insurance approval.  Hopefully the money pit will end soon. 

January 31, 2017

The loaner power wheelchair was delivered today.  I guess I should have been playing those video games all these years so I would be an expert with the joystick.  This morning was a headache trying to put on the braces.  All is good now.  Just waiting for my sis to show up so I can practice in the chair.  Don’t want to get stuck without help onsite.

February 5, 2017

 Our handicapped van got blessed today after church!

February 9, 2017

 I have swim therapy today.  I will be using a wheelchair to get in the pool.  My team is fund-raising for ALS research.  Please check your events invitation and make a donation if you can, join my team to walk, and share my events Page so we can get donations to fund research to find the cure this beast of a disease.

Swim therapy:  The best part is the water was 98 degrees.

February 27, 2017

The “Pinkster” [power wheelchair] arrived today.  I’m ready for the ALS Walk.  All walkers for Team Kathryn please register online.  If you need help, let me know.

March 3, 2017

I had swim therapy today.  I use the chair lift to get in out of the pool.  I do 30 minutes of exercise and need to put weights on my ankles so my feet don’t float up.  I’ve been working on a narrative of my journey to an ALS diagnosis and a Team shirt for the Walk.  Many people have helped me.  Thanks to all.  You can read the narrative and buy a Team shirt at my Team link.

“May is ALS awareness month.  Would you put this as your status to honor all of us who have fought ALS, who are fighting ALS now, or whose fight is yet to come?  There is no treatment or cure for ALS (Lou Gehrig’s Disease).  Military veterans are twice as likely to develop ALS.  It costs an average of $200,000 a year to provide the care ALS patients need.  It only takes a minute to raise awareness, all it takes is copy and paste. 

March 18, 2017

Pool Therapy is finished and I can go on my own (with caregiver) to the pool.  Got some awesome equipment from another ALS caregiver including a hospital bed, electric Hoyer lift, Sara Stedy and personal hygiene items for the future.  Van has been equipped with a v-lock so my power wheelchair can be secured in the front passenger side of van.  Finishing up our wills and powers of attorney on Monday.  I’m almost ready for the future including a visit to Congress in May to push for ALS advocacy and researching local ADA laws.

April 1, 2017

It’s been a week since I have had my hospital bed.  I have slept in it two consecutive nights so far.  That’s not for lack of trying though.  We figured out that if we turned it around so that I could get my left leg in first, that it seemed to work better.  (The left side is the stronger side.)  I cannot actually lift my legs to get into bed: my husband lifts them and helps position me.  Proper positioning is the most difficult part of the problem and includes making sure my bed clothes feel comfortable.  I have been compared to a turtle stuck on its back once I’m in bed.  We have had many frustrating and tearful nights trying to figure out how to get me into bed so that I can sleep in the master bedroom with my husband.  NEVER GIVE UP!!  ALS May win in the end, but I am going to give it all I have before that happens.  #stillfighingthebeast 

April 8, 2017

I guess I didn’t get enough sleep last night because I was feeling grouchy and moody.  I took my medicine and felt more tired so I decided a nap was the best thing.  I woke up and my husband handed me an envelope with the most wonderful greeting from my niece’s first grade class.  Room 7 at Cherry Lane school is supporting me in my fight against ALS.  Thank you, Brittany and classmates, for learning about my disease and helping me and others who also have ALS feel better.  Auntie Kay loves you, too!

April 19, 2017

Last clinic visit was this past Tuesday. Seems I am still on a slow progression although many things are going on.  I am getting foot and ankle orthoses to wear at night while sleeping.  The right foot will have an ambulatory attachment PT’s lovingly call a “kick stand” to prevent my right foot from flopping over.  The flopping is actually my knee and leg muscles weakening.  Hopefully this will keep everything where it should be and allow me to stand and do the pivot necessary to get in bed, on the toilet, etc.  The left heel gets hot from laying at night and the orthotic should help with that as well.  I also saw the OT, respiratory therapist, phlebotomist, nutritionist, speech therapist, clinic social worker and ALS Association Facilitator.  My Pinkster a/k/a power wheelchair was also adjusted in time for Saturday’s Walk in Raleigh.  It was a 5 hr. Clinic visit.

A roll-in shower chair has been ordered to help me get in the shower.  Walking is a thing of the past along with most other personal hygiene chores.  My speech is slurred and cramps occur more often in my hands, arms, and legs but are not that terrible so far.

In other news, Team T-shirts are on the way and will arrive in Durham tomorrow.  I should be ready to walk (ride in the Pinkster) in style with pink hair and a Team shirt.

NCCU, my alma mater, and the criminal justice honor society are meeting tomorrow to learn more about ALS.  I plan to be there to meet the walkers and thank them.

Today I was interviewed by ABC11 about my ALS journey.  The segment should air tomorrow night.  I also hope to get a blog up once the Walk is behind me.

THANK YOU to all my supporters and walkers.  Those who worked behind the scenes and those who made donations.  Next year I plan on “hiring” a new volunteer Team Captain.  This is hard work!

June 2, 2017

Things are moving along.  I’ve been taking a “vacation” since my trip to D.C.  I guess it wore me out.  Today, however, we are on the road north.  We will spend tonight in VA.  Saturday, we finish up in NJ.  We are joining Team Kathryn North in the ALS Walk Sunday in Saddle brook, NJ.  I’ll be joined there by family and friends who are helping bring awareness to the fight against ALS, a fatal disease with no treatment or cure.  If you want to walk with us, put on a pink shirt and show up at 9 am to register.  Contact me for more info.

I’m back to taking my full dose of nuedexta which is the med that helps with my PBA (extreme bouts of laughing and crying).  It is my hubby who always suffers from my bouts of crying and it didn’t seem fair to him or our relationship so I went back on the full dose even tho’ it makes me loopy longer.

Still haven’t solved the bed situation.  TG for my lift chair!  No more walking.  I use the power wheelchair for mobility.  Even pivoting is a challenge.  Morning meds make me loopy and I usually recover by afternoon.  Slurred speech is also a regular occurrence.  If you have bad hearing you might have difficulty hearing/understanding me at times.  Please let me know! I want to communicate with you!

Thank you all for listening to my rants and updates.  Keep fighting for ALS awareness, other noncurable diseases and healthcare for all.

June 19, 2017

 I haven’t been posting updates for a while.  I’ve been feeling lazy.  Might be my meds, ALS, going to bed too late, or just me.  I’ve asked for OT and PT to come to my house to address some issues.  Getting in and out of bed is an ongoing issue so OT will address that along with learning about a new device called a transfer disc to help with pivoting and transferring.  PT is helping me with some new exercises and stretches.  If I’m going to fight ALS I better be prepared.

Had some bad news about two of my strong ALS supporters fighting their own health battles.  Sending love to S and J.  You know who you are.

I’m trying to finally get my blog started.  I’ve decided for now to go with the free WordPress blog.  I’m taking a tutorial so bear with me.  I’m sure it will take me some time to get the hang of it.  Well that’s it for now.  I’m back to educating myself on blogs.