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  • What I’ve learned from ALS

    Posted by Amanda on May 28, 2020 at 9:57 pm

    Each week I search the internet for interesting ALS related information or stories. Tonight I came across this post from a nurse who has cared for pALS. It list 8 things she has learned from her ALS patients. Her list is interesting and impressive, and good food for thought.

    I’ve learned a tremendous amount from our community members and from helping to care for several pALS in my family. My experiences and this community keep me grounded and focused. I’ve learned that ALS is different for each pALS. I’ve learned that living well can make living with ALS a easier. I’ve learned that mindfulness is for me (and I need to work on it). I’ve learned that even the smallest contribution, whether it be a post, a question, a $5 donation, participating in a clinical trial, a kind word, or sharing your story about ALS, makes a difference. I’ve learned that when someone has a rare disease we should not assume we know or understand what is like for them or thier loved ones  just because we have had a similar experiences. I’ve learned that strength looks different on each of us. I’ve learned that each day is a blessing, even the tough ones! I’ve learned that regardless of what is going on in my life I will always do what I can to help find a cure, lift up a pALS, and to make a positive contribution to our community!

    What have you learned from ALS? What have you learned from other forum members?

    Amanda replied 4 years, 1 month ago 1 Member · 0 Replies
  • 0 Replies
  • Romy H

    September 6, 2020 at 3:32 pm

    Hi Amanda!

    I have learned a great deal after my twin was diagnosed with ALS. Prior to this, it was something no one in my family ever had. A distant but very misunderstood terminal nerve disease that was not diagnosed in my twin due to her choices and takes many time to get diagnosed to begin with. Her daughter set an appt with a leading neurologist 1.5 years prior to her death. She and her homeopathic nurse practitioner cancelled it. Then began a spiral of her ups and downs…but no medicine to help her or slow it down. She kept telling all of us that she had her own medical team to cure the candida and mold in her blood refusing to find out what was really wrong with her. She was told this was her issue by the homeopathic nurse practitioner and she used the longevity clinic who had her taking hormones and a chiropractor for her care. Then came the hyperbaric chamber treatments and the infra red sauna. I have to say the sauna didn’t bother me but the hyperbaric did…she bought one and used it for 1.5 to 2 hours every day! No amount of pleading or begging worked with her until things got extreme! Her hands were curling and she had been bedridden for 6 months. 6 weeks prior to her death, she received a formal diagnosis from the ALS clinic at UW. It was the third neurologist she saw over a months time once we had finally convinced her to go. She refused the medication offered that would have provided from 3 to 6 more months of life according to the neurologist which she said no to…”What is 3 months?” She said to me…. How I wanted to break down and sob but didn’t. There was no working things out with her using my practical and reasonable nature. However the damage had been done with the quack she had been listening to. Told her she could not take medicine as she was Cy450 but had her on 90 pills a day…all homeopathic…clay, colloidal silver, gabba treatments….so much more. Her blood was tested at the last hospital and she did not have Cy450 and neither do I of course which I told her all along. Her fiancee was with her night and day…quitting his job to take care of her.

    This was her last 6 weeks. Her fiancee left one day taking an overnight bag at the end of his rope…her daughter moved her to her home at my twins request to give him some time. This began a two week day and night exhausting amount of care needed as she lost most of the ability of her second hand. In the middle of Covid, I have an immune compromised husband so I could not go there every day.  So my two other sisters drove out to help…staying a week. She had a bad episode and wound up in a hospital. She was losing her ability to see reason…I know ALS affects your brain as I watched it affect hers. She was transferred to a private care facility but that was a nightmare for one day only. She was up all night with screaming patients and no doors. Her roommate kept falling out of bed. She was moved to the last hospital with her insisting she would be dead in two days…it took two weeks with assisted care. During my visits which was 17 hours one day and 16 hours another day watching over her up all night…..much was said to me. She addressed me in 3s…Romy, Romy, Romy, save me, hurt me, kill me, get me out of here etc…every demand came with my name repeated 3 times. At one point she said to me “I thought I would get better.”As I began to cry at one point across the room…she suddenly said…”What do we do when someone cries? We sing!” She began making cute little cooing noises… For every time I told her how much I loved her and would do anything to save her, not a single time did she say she loved me back. We were so very close and I learned this changed her in that way as well.

    I learned it can take someone in athletic condition…that signs were there three years ago..she was losing her balance a little and wasn’t as strong when hiking..handing off her pack. I believe there is a link between mold exposure. She lived in a house with serious mold that had to be treated and the landlord didn’t finish treating the house. She ate organic food and was in excellent health when this hit her. I learned it has no favorites..that anyone can get this. I saw her in so much pain while reading that it is unusual. It made her blood pressure go very high, she had the twitches for a year total. She suffered cramps, trouble sleeping…heart arrhythmia, her one leg had a calf muscle and the other leg had a thigh muscle. She was able to ride an recumbent bike which is made for disable people but is now quite popular for able bodied ones as well. During the last month her voice changed completely. I learned you can speed up ALS if you are not treated and take things that challenge the body. I think the hyperbaric chamber treatments made things worse. I also think taking so much homeopathic meds were damaging to her body and made it progress faster. These are things I believe to be true but can’t prove to be conclusive. ALS will affect every person differently but they share one thing in common, the conclusion I would to anything to spare them from. I don’t know if I will develop this yet as we were fraternal twins.

    I have spread alot more awareness with thousands of people by posting about my twin on websites she had built and on my personal facebook page. I will be contacting UW to find out if they want her hair sample and my hair sample to compare for researching markers.

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