Daddy was always so healthy. I don't remember him ever missing work or being sick, except for his allergies (which I inherited). As he got older and finally got onto Medicare/Medicaid, things started going a bit downhill for him. He had to have a pacemaker put in for a slow heartbeat (brachycardia), rotater cuff repair, hernia repair and then something went terribly wrong with him. Mum and I thought he had, had a stroke. It took over a year to find out what was wrong with him. Diagnosis was Progressive bulbar palsy. PBP is a rare form of ALS. It affects the tongue, speech, neck muscles, lung muscles, eyes etc, first and then the limbs lastly (unlike regular ALS that effects the limbs first). Mum and I were heartbroken. Daddy, the usual strong man he was, didn't flinch. I don't know if he thought it would pass or he could take a pill but he never complained or said 'Why me?'. At first when his speech was diminishing mum and I would have to play the 'guessing game' with what he wanted to say. We got pretty good at it. He was given a machine to type on (kind of like a mini computer) but that didn't last long as it was frustrating for him to type out what he wanted. I ended up making cards for him ... bathroom, hungry, pray, sleep, nap, thirsty, shower, Dr etc. Those worked very well. He also got a feeding tube. Because he could not swallow well, the saliva would come out his mouth = drool. It was pretty bad. Insurance would not pay for him to have Botox injections, so mum was hooked up with a very nice man who actually paid for daddy to have the injections. The man sent the money to his ALS Dr who in-turn gave daddy the shots. His drool got a bit better, but then bad again. Because daddy missed 'eating' I would make his food in a blender. I would do 2 cans of his 'food' plus what ever was cooked for breakfast, lunch or din-din. I would make 7 cards for breakfast and lunch and he would pick out what he wanted. Din-din was easy since I always cooked it anyway. It was a mess making his food because their was a lot of trial and error. It had to be way thin to go in his tube. Had I thought about it, I should have bought a baby food maker. The Spring before he died, he seemed to plateau. Then he quickly went downhill. By that time his limbs started to fail. I don't want to talk much about his death. I called our Rabbi to meet us at the hospital. I grabbed everything I would need to stay the night (it was almost midnight). When we got to the hospital, they put mum and I in a room, I knew he had passed. I was so numb that when the Dr came in and said he had passed, I just stared blankly into the wall. I couldn't look at mum. Some guy from the hospital came in to talk to us but both mum and I told him he could leave, as our Rabbi was on his way. Our Rabbi got daddy prepared to spend the evening in a room. I decided to stay with his body since the funeral home was closed.
One thing I would like to say is that NOBODY can prepare you for what you will go through, no pamphlets, no books no talks with the Dr ... NOTHING. Family is a must. Mum and I kept daddy at home and never had hospice come in. Mum and I became a good team taking care of him. Mum gave up so much (WILLINGLY) to take care of him. She is an amazing woman.
I had worked for the MDA many years ago and they do so much good. If you are looking to support a very good cause please support MDA and please support ALSA.
Funding is very needed because their is no cure. When someone is diagnosed with ALS, they will die from it.
ALS is called an ‘orphan disease’ and it affects fewer than 200,000 people in the U.S. An orphan disease does not get adopted by the pharmaceutical industry because it provides little financial incentive for the private sector to make and market new medications to treat or prevent it. Their is NO cure for ALS. No medication can stop it, no operation can stop it and no life style change can stop it. ALS will kill the person who suffers from it. Many research facilities receive no federal or state funding and depend solely on philanthropy.
Local fire departments will be doing the MDA Boot Drive this month. You may see these hunky men standing at popular street corners/medians. If you have any spare change please throw it in the boot. You are helping to save lives.
Thank you.
I'm so happy to know that LMDB is teaming up with ALSA and spreading the word. Plus they are generously giving to the cause.
Lids for Lou Gehrig’s Disease:
In honor of ALS Awareness Month, Le Métier de Beauté is teaming with Lids for Lou Gehrig’s Disease. This drive will go towards raising money, awareness and finding a cure for ALS (Lou Gehrig’s).
Starting Sunday night, May 5th through Sunday, May 10th, the Eye Kaleidoscopes and goodies will be placed on www.lemetierdebeaute.com for bidding. 100% of the proceeds earned from “Lid’s for Lou Gehrig’s Disease” kaleidoscope campaign will go directly to the ALS Association. LMDB will be donating 10% to the ALS Association for EVERY sale made on their E-commerce site May 5th through May 12th.
Donate $100 or more on the tribute fund page that has been set up at ALSA.org, Le Métier de Beauté will send a thank you package of beauty goodies.
What is ALS? The Facts:
Amyotrophic Lateral Sclerosis is a progressive neurodegenerative disease that attacks nerve cells in the brain and spinal cord resulting in muscle weakness and atrophy.
Upon diagnosis, the life expectancy of an ALS patient ranges from 2 to 5 years.
Only 10% will survive more than 10 years
For the vast majority, their mind and thoughts are not impaired and remain sharp despite the progressive degenerating condition of the body.
ALS can strike anyone. There is currently no cure.
What We Can Do. “Lids for Lou Gehrig’s” Mission:
Give a voice. The goal behind Le Métier de Beauté ‘s “Lids for Lou Gehrig’s” campaign is to open more eyes to this devastating disease. Knowledge is power and can bring us one step closer to finding a cure. Your participation, voice and donations can directly impact thousands of people and their family members whose lives have been affected by ALS.
To learn more about ALS and the ALS Association, visit www.ALSA.org.
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