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Understanding people’s reactions to your ALS diagnoses
When telling someone you have been diagnosed with ALS how do they usually respond? Are most people knowledgeable? Do you feel you should explain what ALS is and is not? Do you consider yourself as having a role in advocating for pALS and ALS Awareness? Would you prefer someone to ask you questions about your illness? What resources could you share with friends and family if they want to know more about ALS? (websites, books, people, research)
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11 Replies
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Just taking one step back…before you’re able to explain to others about ALS, you yourself first need to know about the disease. What to expect, medications, progression, research, clinical trials, self-help, etc. I place this responsibility of educating the patient on the doctor who makes the ALS diagnosis. Not just explaining to the patient in words, but rather in written form. You may be too overwhelmed to capture and retain all the information if the information is just spoken. From my own experience, minimal information was provided and I had to educate myself. A clear deficiency of the ALS Clinic and doctors involved.
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Richard and Kathy,
Have you looked into the Patients Bill of Rights in your state? Have you taken positive steps to encourage change so that it would benefit both the medical professionals and pALS? Often times pALS and caregivers are in a unique position to help improve areas that are deficient.
Doctor-patient communication: A shared responsibility – Harvard Health
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Richard,
It sounds like a terrible experience. Is that the only ALS Clinic close enough for you to get ALS assistance from? Is there a different doctor you could request? Have you reached out to the admin of that clinic/practice to share your experience and given them some suggestions on how to provide a better more comprehensive service? Have you looked into the Patients Bill of Rights and shared where they have gone astray?
There is also an ALS Patients Bill of Rights
FYI_patient bill_of_rights.pdf (als.org)
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Richard – – at the moment of diagnosis, I believe that the diagnosing doctor (and staff) feel that providing the patient with a complete, in-depth overview, explanation and, prediction of ALS, is just too overwhelming for the average person. Perhaps you are someone who can absorb it all in that first visit, but for me, even though my professional career was spent in healthcare, I had a hard time understanding exactly “what” ALS was.
Most ALS clinics are diligent in providing patient education materials to take home. The ALS Association (a rep. is always present at the clinic visit) website was created to help walk newly diagnosed patients through understanding ALS.
Every patient needs to take responsibility for themselves to find the best way to understand their disease and how to best work with their doctor to maximize what will be of help (medication, equipment, groups, etc.). In my years of healthcare, the passive patient who expected to have everything handed to them and done for them – – didn’t fare as well as the patient who was self-directed, willing to work with their doctor and, kept a positive mindset.
To begin learning more about ALS – – so you can speak about it with confidence to others, I recommend these websites: ALS Association, Your ALS Guide and, ALS Pathways.
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When I was diagnosed 3 years ago, I told my friends and family. With sons and wife , we had a family sit down about the future. With friends, I really didn’t do anything special just told them what I knew of disease and what doctor told me. In my case I so far look to be one of 10% or so who will survive longer. Since my onset was so slow, that’s what doctor expected. As far as strangers who see my wrist brace I get lots of questions about my wrist. I used to say ALS now I just say it is neurological and if they continue asking if it will get better I just tell them no it is progressive. Closer people to me I do try to educate a bit about ALS as predictably they ask how I’m doing , if I’m taking anything for it etc. I find people do care and most don’t know much about ALS . I don’t feel a compulsion or mission to educate.
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I agree with you Bill and believe you had the right approach. Answer their questions, don’t overwhelm folks and, appreciate them for caring and having an interest in your well-being.
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That is a good point made by Richard that first patients have to know about ALS themselves before they can educate others about it. I agree with Richard that the ALS clinics do a poor job in doing this. They do a poor job in a lot of ways but that is one way in which they do a poor job. When I told people I have ALS, they just said they were sorry to hear that and asked if there was anything they could do to help. Some people sent me cards saying they were thinking of me or praying for me. Some people brought food or presents like gift cards to my house. I’m assuming they don’t know anything about ALS but I don’t know that for sure. Nobody has ever asked me what ALS is. I think some people think we will get better but this is not the case. I just thought that if people didn’t ask me what ALS is, they didn’t want to know. I agree with Bill that people do care and have good intentions but probably do not know what to say so they don’t ask questions about it.
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Kathy – – I am curious, how many different ALS clinics have you been to?
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Of course the pALS has to accept and understand ALS before they can discuss it with others. It is often difficult for pALS and their families to adjust to. This Discussion topic was aimed at what we do When we are Ready to talk to others about ALS. It is may be helpful to newly diagnosed pALS and caregivers to hear from other people, how they approached the topics, how other’s reacted, etc.
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In answering the topic question – – I think my decision to create a blog and writing about my daily experiences living with ALS, has gone a long way to helping to educate my friends and family about the condition. It gives them a peek into my life with ALS without bogging them down with medical explanations. My blog posts were also a good way to let friends and family know how I was doing as the months and years progressed.
Now, with the added opportunity to write a weekly “patient column” for ALS News Today, I can extend my reach to patients, caregivers, and their friends who live around the world.
My blog: ALS and Wellness Blog
My weekly patient column: Living Well with ALS
I recommend our members consider starting their own blog. There are many, many benefits!
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I personally have been to 2 different ALS clinics but other people on these forums have also made comments that they are not pleased with the ALS clinics they go to.
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