December 4, 2020 at 11:16 am #17003AmandaKeymaster
When you heard you diagnoses you were probably in shock. When you shared the information with friends and family members, how did they react? I think it is often difficult for our loved ones to hear about an ALS diagnoses and know how to respond. Some people avoid pALS initially because they don’t know how to act or what to say. Have you been able to share your feelings and let your loved ones know how they can support you? What tips can you share to help other pALS communicate their needs to friends and family?
December 5, 2020 at 6:58 am #17010
My family and friends were shocked but I don’t know how much they know about this condition. Nobody has ever asked me what ALS is. People have asked me what can they do to help but I have not known how to respond. I think people wish they could make me better but that is not possible. It is a difficult situation for everyone involved.
December 5, 2020 at 11:02 am #17013Dagmar MunnKeymaster
We’ve all experienced the shock of being diagnosed with a condition that we knew nothing about. So, it is logical that family and friends don’t know about it either (unless of course, your ALS is familial).
It’s too bad we can’t ease into a pre-set list of guidelines and how-to’s. But since ALS is different in everyone who has it, even a pre-set list would be useless. So, we need to make our own path.
Rather than feeling sorry for ourselves and feeling embarrassed to tell folks about our ALS – – speak up. Why hesitate to talk about it? We didn’t cause it. And, talking about it helps others feel comfortable that they can talk too. Most people wait for us to open the door first.
I’ve had 10 years of experience educating others about my condition – – and am glad I made the effort. And, I know they are better from it as well. 🙂
December 5, 2020 at 11:26 am #17015
Thanks Dagmar. I guess I was just thinking people didn’t want to know if they didn’t ask about it. I guess people don’t know what to say or how to help so we need to educate others. I’m happy that you were successful in doing so.
December 15, 2020 at 6:49 am #17178Carolyn BarryParticipant
Kathy, I found the same thing for myself, when I told friends and family that I have ALS. What felt easier and more comfortable to do, was telling someone first I had ALS, then asking them if they knew much about the disease. I would say everyone said no, that they knew very little about it. As I then began to explain a bit, it was very obvious that they were quite grateful. At that point, most readily asked several questions, which I was more than happy to answer. Just being diagnosed in October, I’ve still had a few friends either ask me if I’m feeling better, or say they are praying for a miracle. While that is hard, as I certainly wish things were going to improve for me, I try to be appreciative of their caring and expression of thoughtfulness. Dagmar, it sounds like you’ve really gotten this all down pat, and what you explained was most helpful! For me, it’s definitely a work in progress!
December 15, 2020 at 1:05 pm #17180
Thank you for your message and support!
December 16, 2020 at 9:13 am #17193
At first, I didn’t tell anyone. Now a year later I usually tell people up front because of my speech. My husband insisted that it was better to just tell people rather than have them guessing. He was correct. I usually also admit that “It SUCKS” getting that out on the table too. I find most people are very understanding and caring once they know my situation.
December 16, 2020 at 11:05 am #17199Tom HehirParticipant
Most people I know and my family knew a good deal about ALS. Some had done the ice bucket challenge and others are medical professionals. The thing that was difficult for me was how difficult the diagnosis was for them. Some broke down as I told them, making it difficult for me. I started emailing and texting people so their initial reaction could be private following up with a phone call to reassure them that I was doing OK and that I had good support and medical care. I let them know that they could tell others as I was “out” about my condition. I also let people know what they could do to support me; cook meals, help me move to an accessible apartment, pray. My partner has been wonderful but he too needs support and I tell my friends that. Since my diagnosis in September, though my symptoms began over a year ago, I have moved, began to use an amplification system for my speech, started an effective PT program, and gained 4 pounds enjoying all fattening food I avoided for years.
I have yet to come out on Facebook as that seems a little too public for my taste. I also want to avoid seeming like I am some type of heroic disabled person. Yes, I am disabled but hardly heroic. This is a terrible disease that should not be minimized. However, as I learned during the AIDS epidemic in the 80s, it’s important that we all learn how to live with our diagnosis.
December 17, 2020 at 8:20 am #17203David CrellinParticipant
I am one of those Dagmar refers to with familial ALS. I knew what awaits me when I was diagnosed.
I have a tendency to look on the positive side of life, tested somewhat when I was diagnosed. But an amusing story from my youth after my mother died from ALS takes this potentially too far:
I, like others, found people avoided talking to me about what had been a harrowing few years (from age 13). So I swore to myself I would not avoid others who had been bereaved. A year later I heard that a rather attractive young lady had just lost her father. I had known her since childhood. I was unattached. So I called her and we met up. No-one had talked to her about her Dad, how she felt, the impact on her family. I turned out to be more than a shoulder to cry on. But, no, we didn’t stay together.
I’m married to an equally gorgeous woman who, like good red wine, has got better over the years.
January 3, 2021 at 11:28 am #17327Suzanne GalloParticipant
Hi. I don’t have ALS, but my dad, at age 79 passed from this disease 4 years ago. I was one of his caretakers. I was with him when he died.
Now, my husband, aged 67, has ( I just can’t say it, because he doesn’t have the spoken diagnosis…but he has had every test to rule out not……) a motor neuron disease. I’m pretty sure he has it. I know. We were just set to retire, be grandparents, and travel. That’s changed now. Not just Covid- this is …..motor neuron disease.
We are going for a second opinion at U. Of Pennsylvania Medicine. It’s taking a long time for a diagnosis, likely because of Covid, and the holidays. I’m sick that it is taking 9 months for a diagnosis. Are we losing valuable time to get into a trial?
I just can’t believe it. My dad? And now my husband? Within 4 years?
I’m so ashamed to say how bad I feel. I don’t have the disease! But I feel so bad, shut down, and lost. Like, how can this happen? What did I do to have my dad, and then my husband of 31 years get this? I feel so guilty. Why am I the strong one? Maybe that is my answer. Has anyone else had their father, and then, 4 years later m their husband experience motor neuron disease? This is not familiar. This is chance.
January 3, 2021 at 2:31 pm #17330
Tom- I feel like we are heroes. With a diagnosis like this it would be very easy to just give up. If you keep fighting then you are a hero. We don’t get enough credit for all that we are going through.
January 3, 2021 at 5:11 pm #17332LindaParticipant
My sister had developed an intense itch in the last few weeks. Is this a normal occurrence with ALS? She was diagnosed 1/3/2020. Her deterioration has been rapid.
January 4, 2021 at 12:57 pm #17343Susana RaveParticipant
I have been diagnosed since September 2019 and my symptoms have been slow progressive. Until recently I have never had issues sleeping. The last 6 months I toss and turn every 2 -3 hrs because staying in one position causes lower back pain if I am on my back, or pain to my hips if I ‘m on my side. All the tossing and turning results in an unrestful night. 6 months ago we bought a new (hybrid) mattress which turned out to be too firm so we replaced it with medium firm hybrid. This mattress also is not helping. Is anyone having similar issues? If so, any recommendations.
January 5, 2021 at 3:38 pm #17362
I too have had many wakeful nights since diagnosis Sept 2019. I also have hip pain and my legs cramp and have fasciculations keeping me awake. I take Melatonin and Magnesuim at bedtime, which seem to help. I also take Ibuprofen sometimes for the hip. (of course check with MD first). I also take a hot shower before bed and listen to music or stories on the “Calm app”. I hate to deal with insomnia with so much to worry about making it worse. Last resort, I just get up, go to the couch and watch Law and Order reruns. They put me to sleep!
January 5, 2021 at 4:52 pm #17364Susana RaveParticipant
Thank you for your post. I took melatonin last night and that helped me sleep through the night. I spoke with my MD and he recommended ibuprofen for the pain as needed. I hope for better night sleep in 2021.
Thanks again and have a good and restful 2021!
January 7, 2021 at 10:01 am #17385
I am SO GLAD the Melatonin helped! We need our nighttime sleep so we can “participate in life” during the day.
January 5, 2021 at 11:17 pm #17372Nancy deVillersParticipant
As to the question of how to let family and friends know about my diagnosis- I chose a different way. I do not want anyone to feel sorry or uncomfortable around me. Because of Covid I haven’t been able to see old work friends ( I’m retired) and relatives, On Halloween I posted on Facebook that I had some scary news. ” I’m not a man, never been remotely athletic, never in the military, and never lived on Guam”. So guess what creepy disease I have? I went on to tell jokes about not being able to walk anymore relating to my previous job running through airports and lifting heavy boxes of books. Most important to me was to let people know I’m still me and still have a sense of humor. They all know me as an avid reader. I told them I would not rest until I uncover the reason for me getting this disease and my new profession is Lab Rat. I have only told the neighbors I am friends with. I prefer to be the mysterious person with the ramp and wheelchair to the neighbors I have never liked. Should they inquire about my condition I will answer “What wheelchair?” I plan to remain my old snarky self as long as possible.
January 7, 2021 at 10:02 am #17386
Love the Snarky Self!
January 7, 2021 at 2:34 pm #17391Tom HehirParticipant
I’d like to respond to those with sleep issues. I too had them. I couldn’t sleep more than an hour at a time. I was exhausted all the time. I got a bi-pap when my vital capacity went into the 50s. After getting the bi-pap I got great sleep, felt much stronger and my vital capacity went up to the 70s. Though I still have weakness in my legs and arms, I feel much better.
February 9, 2021 at 6:54 pm #17706
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