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I Lost my twin June 18th 2020. She went from walking August 2019 to passing away in that short of amount of time. Her last months were filled with people just falling away! She was the social butterfly of us two. All the wonderful friends she used to talk about stopped calling her and almost no one stopped by. I was traveling a long distance by bus to spend weekends at their home to care for my twin. To visit her and show her the love that she needed to see! This went on for several months while other people just ignored her! All the people she would help, all the friends that needed her to do all these favors before? People online would say they would pray for her. They offered her no emotional or in person support? She said those are empty words unless you back it up by an action. I completely understand what you are saying with your post. But a true friend and a loving family member would not do this. I never shied away from being with my twin. It was the greatest and only gift I could give her was my time and love towards the end. I hope the people around you wake up in a hurry to how important you are to them! I recently had foot surgery which put me in bed for the past 6 weeks. As I’m struggling to walk now, I think about all of you with ALS! I am blessed at this point not having symptoms but I’m not out of the woods for that risk. I have to do foot surgery to the other foot in November. So for a full 6 months I will be spending most of my time in bed and my husband has had to care for me. It is definitely not like having ALS but it gives me an experience of being bedridden for the first time in my life. The friends that said they’d stop by or help never did! Anytime my husband has to leave the island where I live on the boat or the ferry? I am alone all day and no one came over like they said they would. So I understand the failing of people around you even on a very small scale. My love and hugs to you during this tough road you are on. What people around you that fail you don’t realize? We all get to the same place just different ways. Kindness and love is what makes it better during that travel we all take in getting there.
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I was so careful to tell my twin who had ALS only kind things directly about her care. I told her it was about love and never to feel bad when she thought it was too much. I didn’t refer to myself as a care provider or anything. He fiancee was her full time care provider as it was stated by her. I was simply a loving twin that helped her all I could. Working a job cleaning homes and apts 10 jobs a week…then bussing two weekends a month both ways taking weekends to help give her fiancee time. Her eyes would sparkle and she would say my Romy is here! I got at most 4 days off a month on bad feet. I told her she was beautiful, doing her hair, nails and bringing little gifts. When she was moved over to her daughters, it was too much for them with full time jobs. She was in bad shape and my older sister came with our younger sister and her own son. My older sister took over her care. She gave her great care for 6 days and said something so cruel I can’t believe my twin sister did not say anything when she heard it. I only know how it must have made her feel. She was told that she looked like our mother. Understanding that everyone with ALS is a beloved family member! Treating them with kindness and love with all of your ability is the most important thing you could possibly do. Their time is limited and they are going in front of you. Our mother was disabled in a wheelchair for over 30 years since she was 24 years old and died at 55. To be compared to a woman who was unable to talk properly and was in a wheelchair for three decades? That was so unkind. Regardless of how you term yourself as a caregiver, it is important to remember that everything you say is heard by a person with ALS. They have nowhere to go with their hurt. I was able to contain myself properly around my twin and have no regrets. I can’t say the same for many people that got around her. No one is perfect but please everyone understand, a person with ALS has in mind that needs your love more than anything else.
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My twin who passed away had a definite affect to her stamina. She was an avid hiker. It first was noticeable that something was amiss when she could not get her own home to stay clean…she needed my help 3 years before she died for cleaning work. I ran a cleaning business so I would bring my gear, we would have fun for a few days and I would clean her home. She got winded sooner on hikes so I feel like I can say yes, it was her first symptom but we didn’t recognize it as such. She was very high functioning until her last 10 months. She never sought a Drs help til her last 3 months and got her formal diagnosis. Fear in this case resulted in denial and homeopathic care that was not beneficial in helping her. I am her fraternal twin and have no symptoms at this time. I have not had genetic testing but my daughter and niece both have with no markers present. I just have to be vigilant in my own health and watch for symptoms at this point. I am hoping my insurance will approve a genetic test.
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Hi Lisa,
First please go get tested!!! You will not want to wait to begin physical therapy and any medication that is available to help slow this down for you if you have it. Trust the advice here as it is golden from people who know. My twin sister lost her fight June 2020 and this site was my support in addition to life line. I was so devastated, I actually understood how one twin can find it impossible to go on. I am strong enough to but realized just how much it tore me apart. She was very athletic and her first signs were diminished strength, then came the balance issue, after that it was her ability to walk. Her hands began curling next and then she was bedridden. In between these developments was a diagnosis once we convinced her to see a Dr. However she waited far too long for help that is available for ALS sufferers. There were many things offered to her free, a Van for her wheelchair, and a lot of help. I encourage you to relax and wait for your Dr appt which you need to set before you add stress to your life with this possibility. There are other conditions that can cause your symptoms and trust a professional to diagnose you. I have been concerned myself as being a twin and losing my twin to it. However, my tendon issues are from overworking my hands and I don’t have other signs. It did not stop me from worrying though and I even called her fiancée to find out exactly how her hands felt which he said had no pain. Mine sting and swell when I do anything strenuous and forget lifting weight..my arms and muscles look fine tho. I have seen a Dr and they have told me there are no signs at this time of me having it. I am not in the clear being a twin but will be attentive to any signs and go TEST immediately if they develop. My daughter moved to Hawaii last summer and loves it. When I joined this site, it was to educate myself and get support for my loss. My family just can’t understand how this has impacted me. Only a twin would completely get it and I accept this. I sought out my own support which this site has afforded me. I read the posts and information which helps me learn even more. If I get ALS, this will be a blessing to continue coming to this wonderful site. People here are so supportive and helpful with no judgment.
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My twin sister who succumbed to ALS in June 2020, has an ex brother in law who is a Dr. He has forwarded information to her daughter that he feels they are very close to a cure. I will find out more but it has to do with this exact study. I realize Drs are privy to more info then we are so I will try to find out what I can to post here.
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When my twin sister relented and actually got a diagnosis, she refused to have genetic testing. She was self treating with a homeopath. Our Dad did die of something neurological but it was so different and he was not diagnosed. Then my twin misplaced her medical power of attorney so his tissues were not tested as the DR had wanted. I tried very hard to get this done but there was not time to get a new copy and the nursing home lost their copy. I have not had symptoms yet but have confirmed that we are Fraternal twins, this said it doesn’t mean I don’t have some risk. We have not seen it in our family before but it was a huge wake up call. I have four adult kids and 3 grandkids and feel I owe it to them. I am also offering to get tested for research of twins having ALS. Its a personal decision but I want to do it for our kids. She had 2 kids of her own and they wanted to know. Hair was saved from a hair brush of hers so that is all we have to work with and I am pursuing this now. She did get tested for ALS at the leading center for it at UW. I think with genetic testing, it feel it will help eventually with the cure along with faster diagnosis with treatment. I read about the research needed to get as many genetic tests done as possible to identify the markers. My twin and I looked identical for the most part so we shared alot of gene matches. This said. testing both of our samples could pull up a marker she had that I don’t perhaps and so our hair samples will be sent in if they want them. Its worth doing for me to help others and reassure my own family. I am 56 and in perfect health right now but there are no guarantees in this life. My twin was walking just fine in Sept 2019 and passed away June 18th, 2020.
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Although I do not have ALS at this time, my risk has not been ruled out. There is no way to know so I am getting prepared now as we were genetically so close. Being a twin which I have now figured out for sure we are fraternal and losing my twin 4 months ago means I check daily for any changes in my body. Due to overworking my hands with my cleaning business, I developed tendon issues.
We are staying in our home on an island with no stores or businesses with 100 people here. There are roughly 250 houses mainly vacation homes not being used now. We have seen an increase in wild life by leaps and bounds here! The Audubon society says we have the highest bird population per area in the state of WA! I am staying entertained at my island home, picking up preordered groceries across the water but only hubby gets on the ferry. We don’t go anywhere else, no restaurants, no group settings. I take walks alone with my two dogs. I am doing some knitting but have to be careful with my hands. I have not left this house for one month off the island! I keep the hummingbird feeders full and watch youtube for fun and how tos.
My home already has wide door ways and a downstairs bedroom. Our lay out is a living room/dining and big kitchen. Our doors all accommodate wheelchair access. If I get ALS, we are prepared with our home. My twin sister had an outdoor recumbent bike. I do have one knee that gives me issues sometimes so I am bringing out the recumbent bike soon. With Covid increasing, I will stay home as much as I can. Hubby goes off once a week to pick up mail and groceries. We are doing all we can to stay safe and wearing our masks when we see people here. I am doing more with embracing nature, home improvements and being ready for the future whatever it may hold. A storm the other day in our view from our modest small home.
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Thank you for your kind words. When we finally got her to the first, second and then third Dr who was the head of the ALS dept at University of Washington medical center it was truly too late! He got a van and lift approved for her immediately and other helps but she was put in a hospital before he could finalize this. When she was moved to Sequim it was to a private care facility for only one night. There were no doors on the bedrooms and her room mate kept falling out of bed. People wailed all night. So she got her daughter to move her to the hospital as she was suddenly in very bad shape. Then after a day there, she was offered Comfort Care. She called us barely able to talk and told us she was going to die in 2 days. I was out at my home on an island we were fixing up to move back into. I jumped onto our boat, took it to the mainland, got into a car and drove that all the way to see her 6 hours away. She was in such bad shape when I got there. Eating very little, talking only when she felt she needed to say something, didn’t answer my questions much and never returned the I love You’s that we always did. I tried to get her out of there with home care but no one could take her in that bad of condition. She needed around the clock care and medication. She stopped eating after two days completely. We fought the doctors daily to keep her there instead of a nursing home where she could not see family. It was just too late to get her help with the ALS foundation. They even had sent her a BI Pap machine that didn’t get opened as she was in the hospital when it arrived.
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I was helping to care for my twin sister on weekends as we lived a distance apart. Hers was so progressive that we didn’t have full time care for long with her. 8 months prior to her death she hiked 4 miles! So her symptoms at first we mild. Our biggest challenge was her refusal to see a Dr and get proper care. I could easily lift her in and out of a wheelchair, wash her entire body/hair myself while holding her up, taking her on and off the toilet etc. She had no use of her hands as they curled up, first one and then the other she and couldn’t walk for 6 months at all. My biggest challenge was being her twin and watching her body change so quickly from a healthy woman to being completely helpless. She kept a good sense of humor, was kind and very positive about getting better. She made epic plans for her future up til the end. This was so hard on me since I knew absolutely in Dec that was dying. She lived til June 18, 2020. The hardest part of all was being with her at the last hospital and attempting to comfort her. The things she said to me were so very painful. Her mind did a replay of my name prior to making requests. They made no sense so I know it wasn’t her intention to say what she did. Romy, Romy, Romy kill me, hurt me, save me, help me…so many things but always my name in 3s. One of the things she said out of the blue was, “I thought I was going to get better.” She never accepted her diagnosis of ALS that she got 6 weeks prior to her death. As I face each day without her, she is on my mind day and night. I did all I could to help my twin when others doubted she was sick at all! I did my best to inform all our relatives and got a several out to see her in time. Its so hard to go on without her but I have to. She would not want me to give in and I now understand the struggle to go on after this type of loss. The Covid 19 outbreak affected greatly people seeing her and that was also very hard on me. I did all I could to be there for her and have no regrets. This is my twin just 2 years ago!
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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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Thank you Shane! It was truly the most devastating loss of my life. We are fraternal twins, I do hike on occasion but live now where they are mainly just walks around the island. She was 56 when she chose Comfort Care. From my research, she had a fair amount of time left! We believe we saw signs of her slowing down 3 years prior to her passing. Her onset was at 53 from our agreed on perceptions. This said, she didn’t do alot of high altitude hiking but her favorite hike went on for miles and had a very steep tall climb back up, either paved or on an adjacent trail. Her choice in homeopathic care was encouraged by a local quack. Sorry I realize there are plenty of verified professionals within this field but this lady was not one of them! She took advantage of my twin and her fiance’ for tens of thousands of dollars. Lori was put on over 100 pills a day, something she called Gabba Treatment (some strange thing she drank in the middle of the night), colloidal silver water she finally stopped drinking, she would be put on an elliptical to keep legs limber as she could still pedal it, she was in a hyperbaric chamber for 1.5 hours a day and infra red for acceptable time frames. I disagreed with all the pills and the hyperbaric chamber due to it pushing such pure oxygen into her but not expelling the carbon dioxide which is an issue for ALS patients. The colloidal silver I will never back up claims on and other hokey pills included in that mess she took daily. Her daily food intake was about 1/3 of what it should have been. Her 3 meals equal one of mine! We both weighed 125 when she started to really show signs of progression….I weigh 120 now and she weighed 115 a week prior to passing. I was told she didn’t lose much more but don’t know exactly what she weighed….I would imagine it was around 110. My brother was there at the time she passed. She had gone to a Dr finally just 3 months before she chose to pass away. I say chose as it was not her time. The Dr offered her a medication that he said would provide her with 3 to 6 more months and stop the progression just two months prior…but she had said “what is that?” with a scoff. She refused to accept the diagnosis till the end. Then she just decided it was over for her. Her body did have alot of issues due to the care of the last hospital. She wasn’t getting her physical therapy, she was not doing well and not getting the best treatment. They had moved her to a private care home and she was placed in a room with a screaming lady all night with no door on it! She called her daughter, had her moved to the hospital in Port Angeles, WA and that is where she made her decision…it was such a shock!! I realize people have the right to choose…but that was not what she was like! She was a fighter and a tremendously talented woman with high intellect. This affected her brain 100%. I am 58 now and show no signs. Her daughter got the genetic testing and has no markers…my daughter got tested and shows no markers. I have not been tested but will be soon. I just didn’t see the urgency based on the others testing so quickly and the fact that I know the signs very well now… I have done so much reading after what happened to my beloved twin. I wish all the best to you and your family.
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With my late Twins case of ALS, these are things I know to be true that may be factors:
Lori hiked a few times a week up to 10 mile hikes, beaches, high altitude etc.
She would dance and do other exercises but was not over exercising.
Her home had mold and bird dander, I could see stuff floating in the air, I warned her!
The landlord treated the home for mold but he stopped the process without her knowing.
She ate organic foods and drank spring water that was tested to be pure.
Lori did not eat sugar hardly at all, had a great balanced diet and was very healthy.
She refused to see a Dr and chose only homeopathic care.
When she chose Comfort Care, she was 115 lbs which was only 10 pounds less then usual.
Lori was not near death when she chose Comfort Care but this affected her mind.
Her Medical power of attorney was her daughter and she backed up her Mom.
I tried to get my niece to stop it gently but there was no having it!
When choosing Comfort Care, my twin was still talking, swallowing but no mobility.I need to post that part due to the nature of ALS, a Medical Power of Attorney must be chosen with great care. This can affect a persons mind and there fore their ability to make proper decisions.
There is no family that has had this before. We know our Father died from something that was felt to be neurological but he was exposed to chemicals alot. We never got a straight answer on him but he lost half his weight before he passed away.
Our Grandparents lived under huge High Voltage Power lines and they didn’t get ALS. I have family still there on that property and no ALS has emerged. I tend to feel that electricity was not a factor in my twins case anyway.
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Dear Amanda,
My heartfelt sadness you have lost your cousin Bruce. Although we know our loved ones are at peace and suffer no more, we are left with the pain of their absence. Big hugs and love to you in this latest path of loss. Know that you are not alone and we are all here. I will pray for you and your heart to heal. I reflect on my twin every day and treasure my memories. I hope you can get there too someday and I know its a tough road to travel and one you have been on before. My very best to you at this most difficult time. -
My twin had used edibles to curb her pain and improve her mood. This said, it is legal here in Washington State. I am assuming it is where you live as well. She was able to keep herself in her last year in much better spirits and thanked me alot for suggesting it. Nothing else helped her though. Vaping is hard on the lungs and I know ALS affects them so maybe edibles are a possible idea to avoid this wear on them?
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Thank you Lorri, I do indeed embrace my memories of her…
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Thank you Rhonda! Your words mean so much to me. I will always treasure my time on earth with Lori. She was my best friend, closest ally and always stood by me thru thick and thin as I did her. I am still in disbelief about her passing…there are days I wake up and still have to accept this all over again. My life feels like a kind of ground hogs day where I relive my loss over and over but its not as painful now.
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Thank you Nina! I appreciate greatly your kind words. She meant the world to me and walking alone is still a very difficult task…I always felt such a deep connection to her. No matter what we went thru, we did it together even from afar. She lived a lifetime in 56 years.
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Thank you Amanda! I miss her terribly every day and life although it must go on has left a place that time can’t fill. I have to accept that which I never envisioned this happening to such a healthy vibrant twin. She truly embrace life and lived a lifetime in her 56 years.