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You and your spouse or loved one is at your umpteenth doctor appointment over the past 10 months to find out what is wrong with you. You have been poked, prodded, jabbed, and stuff in MRI’s with no word of what you have, though some very scary conditions have been ruled out like MS, Parkinson’s, and a few other neurologic conditions. So the doctor performs two final tests by shooting an electric shock through your nerves, not fun, then jabs a needle into your muscles in different spots to read the muscle’s response waves, really really not fun. At the conclusion of the final test, the doctor in his most empathetic voice says the worst three letters, ALS (Lou Gehrig Disease)…he continues to inform you that unfortunately it is 100% fatal. There are two medications on the market that could, maybe, or possibly extend the average post diagnosis life span of 2 to 5 years by 6 to 9 months. There will be additional drugs prescribed to ease some of the effects.
Imagine is not what happened to me, I was/am the patient that was there at the appointment. What do you say? What do you think? What do you hit? Who do you scream at? My wife and I were numb and in shock. It took a short time for my wife to start sharing her emotions and all I thought was what will she do when I am gone. I did become angry and still am that this has happened to us.
For those, which is most, ALS is a vicious disease that kills motor neurons. As they die off you lose strength and use of muscles. You lose the ability to walk, move your legs and feet. You lose the ability to use your arms, hand, and hold up your own head. You lose the ability to talk, eat, and swallow. It even affects your ability to breathe on your own.
What does the motor neuron do?
Motor neurons of the spinal cord are part of the central nervous system (CNS) and connect to muscles, glands, and organs throughout the body. These neurons transmit impulses from the spinal cord to skeletal and smooth muscles (such as those in your stomach), and so directly control all of our muscle movements.
Of course, there are devices to help you day in and out, special eating utensils, power wheelchairs, bathing benches, speech assistance computers that use Eye-Gaze technology. And depending how and what you consider quality of life to look like there are feeding tubes and you can go all out by having a Tracheotomy to keep you breathing assisted.
The journey to my diagnosis seemed to have started in February of 2019 when I first started to fall down but now after learning more about how ALS affects our motor neurons, I believe the journey started much earlier, sometime in the middle of 2017 when I noticed I was walking with a heavier foot, which at the time I put off to the shoes I was wearing. After 3 to 4 months my new walking just became the norm and I didn’t give it a second thought. In the fall of 2018, I began having a small limp that over time increased and became more noticeable.
In late January of 2019 while in Fremont, CA for a work conference we took a tour of the Tesla Manufacturing Plant. A plant large enough to hold one hundred 747 airplanes. After the basic tour, we walked the building and grounds which was more difficult than I had expected. Trying to keep up with my group was not just difficult to maintain the speed but I had the overwhelming feeling that I may trip or fall. It was an amazing experience but exhausting. Then in February of 2019, my limp increased and now my right foot started to drag a little which caused some falls so I went to the doctor to see what could be the problem. After blood work and a head MRI which didn’t tell anything, I was referred to a neurologist who sent me for 3 MRI’s of my spine, more blood tests, and a bone scan to rule out what was not wrong with me.
It was like there was a hatful of ailments that I could have and the doctors were working to eliminate possible diseases I didn’t have. During this process, I did have a large fall at work. I tripped over a bolt in the concrete floor that stood up maybe ⅛ of an inch and down I came on a block of wood…BAMM, now I have a cantaloupe size injury of my right hip that took over three months to heal. Also during this time my walking and ability to step up curbs increased in difficulty so my wife purchased me a rollator walker to get around more safely and we were able to get a disability place card so I could park in handicap spaces getting closer to buildings to help eliminate any more possible falls. I am lucky that my employers worked with me for work accommodations for my walker, without it I would have had to change jobs to a more desk related job because I would have no stability on my own to walk around without falling.
For me, ALS started in my legs and is slowly moving to my arms which makes dressing and showering difficult and tiring so now I have help dressing, showering, and using the bathroom. I am becoming unable to talk so we are working to get a speech-generating device to communicate. There are so many different options to help continue life but to me it’s about what quality looks like. The doctors tell me it is up to me how far and what devices I want to add and use, which is a challenge in itself to decide on as part of me wants none of it and the other part wants to be able to enjoy life and my family as long as possible but all while having a quality of life.
We are in need of financial help well beyond a little borrowing from family to get by. We have chosen to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses
My wife and I thank you all for your generosity. Please keep in touch as we will continue to post health updates as well as information about the ALS community.
For more information, please contact Help Hope Live at 800.642.8399.
Thank you for your support!
Alan has spent the last 44 days in the hospital! Yes, that's a whopping 44 days! We went in through the emergency department on March 22nd due to respiratory failure. After having a trac placed, an ng tube (nose tube for feeding), then pneumonia, and finally a tube (tube placed for long-term feeding in his stomach. We thought we were in the home stretch to come home!
We were WRONG! Alan went into refeeding syndrome and developed an ileus! All bad things! Refeeding is when your body is unable to accept nutrition and had a reaction. The ileus happens to be a common symptom of ALS. A neurogenic disfunction.
Either way, we then had to figure out how to get his bowels to cooperate with and reduce the extended bowels that were developing due to the ileus not to mention, get Alan back on nutrition so he could get home.
Phew, this has not been an easy task, but we are looking at the home stretch and it's looking fabulous!
However, this brings us to a new need!
I am Alan's only caregiver. However, when Alan returns home from the hospital he is going to need 24-hour care. It's near impossible for me to do this alone. So we are asking if you would help us by donating so that we can bring aboard additional support for the both of us.
Caregivers with skilled nursing skills range anywhere from 15-35 an hour as I am told. This is well beyond what we're able to afford. The county has a program, but they are so behind they aren't even looking at assessing us until the middle of June! I may be insane by then.
And then there are the bills that are accumulating from our hospital stay and his new care needs. Which include equipment, daily medical sterile supplies, and so much more.
Please know that everyone who is able to help us is so greatly appreciate for your support!
Hello All,
it's been awhile since I've had an update so hear it goes . First a huge thank you to all my donors to date , you have made it possible for me to receive the needed equipment to keep me healthy as possible to extend my life .
My progression has made me non ambulatory, my arms and hands are not working, my lungs have weakened, my voice is gone, though I am still able to eat solid food.
We currently need to raise money to cover the costs of in home care to share the work load with my wife , my 24 hour caregiver,
Update time:
Had my second ALS Clinic visit of the year on June 4th and it was a little bit of a downer.
I lost another 9 pounds, so I'm at 207 now. Weight loss is not good as progression moves with the loss. If cannot maintain my weight my doctor is pushing for a feeding tube so I can have calories added when I am not hungry.
My sleep study results came back just in time for my visit. I do have sleep apnea so I will be getting bi-pap ventilator and also a cough assist to help strengthen my diaphragm.
Met with my speech therapist to modify the paperwork so my communication devise can be ordered.
Next visit in 3 months
Had first quarterly ALS Clinic appointment yesterday, 3.5 hours long, 2 doctors, 5 technician. Unfortunately my lung volume and strength decreased, strength is arms, legs, and hands also decreased. We talked with speech technician about Eye-Gaze talking device and started paperwork to get it as my speech is declining. I am needing to add an additional 350 plus calories because I lost 9 pounds over the last 3 months, weight lose for ALS patient is not good. My PM&R doctor is ordering a sleep study to determine if or when I will need a breathing assistance machine. Not the best of appointments but was very informative.
The generosity and support we having given means to world Nikki and I Thank you all so much for all your help.
Damm ALS...weakens your muscles making the simplest daily duties difficult. Yesterday I fell in the bathroom getting back on Daisy, she is my power wheelchair. Lucky enough to only sprang my ankle and bruise my shine
An amazing donation arrived last Friday, a beautiful used 2012 Honda Odyssey wheelchair accessible van. Huge thank you to Greg Heppler for coordinating the delivery and Brent Jones for locating the van.
So excited...my power wheelchair will be delivered October 23rd.
Take a moment to watch the attached videos.
Thank you to everyone who has donated. We are off to a great start. All your support is appreciated.
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With you in prayer
Mary Oliva
The love you have for each other, keeps you strong....
Remember, you are not alone....we love you both!
Bless you Alan, and your little family....
Anita Castillo
Alan, I don’t have a lot to give - but sending you tons of love & support, I wish I could do more for YOU after all you did for ME at Cardinale!
Best wishes,
Tricia
Tricia Rider
My life was gradually coming to an end, until I saw kykuyuhealthclinic. com on google during my research for alternative help for ALS/MND..
Muriel Jamieson
Prayers and love to you Alan
Carol Rodgers
We continue to keep you in our prayers, Alan.
Jenny Aburto
We’re praying for you Alan!
Jenny Aburto
We love you my friend. Sending prayers to you and your family . Xoxo
Mary Lou Gardner
Keeping you in our Prayers! God is a God of Miracles. We will be praying for your Miracle. In the past you Supported God’s ministry with the church Youth, and miraculously thereafter your wife’s pregnancy came to pass. God remembered your generosity and great heart you had for those kids, in His ministry. Those youth kids and I prayed and prayed for you, and your miracle. And God blessed you. May He remember you again Today. In Jesus’ name.
Jenny Aburto
Alan, love the pic. You look like you're in great spirits! Keep up the fight!
Todd Gall
Please give generously. Alan and Nicki need us all and it takes us all. Alan, thinking of you and sending you strength and courage.
Billie Moser
Hi Alan, sorry to hear about your health. Sending you positive vibes and wishing you the best.
ALEX ORNELAS
Stay strong Alan - and keep fighting!
Jeff Applebaum
Get well soon. Please let us know if you need anything.
Geoff Money
Wishing speedy recovery.
Henry Chedraoui
God bless you Alan as you go through this difficult journey.
Janet Stephenson
Janet Stephenson
Thank you for everything.
Always here to help any way I can.
Alberto Cortinas
We love you Alan! Thinking of you and praying for you always ❤️
Jodi & Mike Stephenson
Make checks payable to:
Help Hope Live
Note in memo:
In honor of Alan Rathbun
Mail to:
Help Hope Live
2 Radnor Corporate Center
Suite 100
100 Matsonford Road
Radnor, PA 19087
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