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Ilana Schatz replied to the topic Feeling alone and forgotten in the forum Living With ALS 1 year, 7 months ago
Kathy,
Through your ALS clinic or your primary care physician, ask to be referred to their palliative care team. They have social workers and chaplains available for emotional and spiritual support. Palliative care is available to anyone with a serious illness, and not just in hospice or at end of life
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Ilana Schatz replied to the topic Feeling alone and forgotten in the forum Living With ALS 1 year, 7 months ago
hi Kathy –
What I’m learning three years in is that people are afraid of saying the wrong thing so they don’t say anything at all, or they don’t want to be intrusive. I started writing a monthly update and send it to people I wanted to stay in touch with; I also invited people to ask questions – people have been more responsive.
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Ilana Schatz replied to the topic Clinic Visit Routine in the forum Living With ALS 1 year, 8 months ago
One thing I do is send an update 5 das before clinic (send it to whomever coordinates with the staff. The clinic visits are very productive and the ALS team comes prepared. I divide it into categories (eg speech, PT, neurologist, etc) with 3-5 bullet points (e.g. can’t eat lettuce anymore, having trouble doing transfers, etc). The clinic staff…[Read more]
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Ilana Schatz replied to the topic Clinic Visit Routine in the forum Living With ALS 1 year, 8 months ago
One thing I do is send an update 5 das before clinic (send it to whomever coordinates with the staff. The clinic visits are very productive and the ALS team comes prepared. I divide it into categories (eg speech, PT, neurologist, etc) with 3-5 bullet points (e.g. can’t eat lettuce anymore, having trouble doing transfers, etc). The clinic staff…[Read more]
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Ilana Schatz replied to the topic Understanding PFT in the forum Diagnosis Information and General Questions 1 year, 8 months ago
Hi –
Are you working with an ALS clInic? tHE RESPIRATORY THERAPISTS ARE THE MOST KNOWLEDGABLE. WHEN MY PULMONOLOGIST SAW MY FVC SCORE, HE TOLD ME TO GET A TRACH IMMEDIATELY; i HAD THE RESPIRATORY THERAPIST EDUCATE HIM ABOUT ALS AND RESPIRATORY FUNCTION -
Ilana Schatz replied to the topic Tips for adjusting to living with a PEG (feeding tube) in the forum Living With ALS 1 year, 11 months ago
Hi everyone,
I’m scheduled to get my PEG tube surgery on 7/14 through Interventional Radiology with a one night hospital stay. Wondering what recovery looks like and how long?
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Ilana Schatz replied to the topic Advice needed on Medicare covering radicava home infusions in the forum Living With ALS 1 year, 11 months ago
Medicare coverage does not cover home infusions; some Medcare advantage programs do. We’re covered under Humana Medicare Advantage. We;ve asked ALSA to work on this issue.
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Ilana Schatz replied to the topic Book recommendations in the forum Living With ALS 2 years, 5 months ago
A friend recommended “Navigating Life with ALS” by Mark Bromberg, MD and Diane Banks Bromberg. It’s a good synthesis of a medical perspective (he’s a neurologist) and helpful everyday life tips (she was the caregiver for her mother who had ALS). I found it very helpful and wished I’d known about it closer to my diagnosis.
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Ilana Schatz replied to the topic Radicava – Home Infusion vs Infusion Center? in the forum Living With ALS 2 years, 6 months ago
hi Robert,
I’ve been doing home infusions for over 2 years and it’s been perfect for me, especially during covid. You need someone else to do it for you. My partner and I use that time for spiritual reading and non-distracting time together.
At this point, Medicare does not cover home infusions. We’ve spoken with ALSA and they’re working on…[Read more]
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Ilana Schatz replied to the topic Using Ritual to Navigate ALS Transitions in the forum Living With ALS 2 years, 7 months ago
Hi Debra –
Happy to share some of my Odes with you; they brought back wonderful memories I hadn’t thought about in a long time:
- Jump roping
- Tending my garden
- Getting into and out of hot springs
- Tide pooling
- Dancing
- Camping and sleeping on the ground
- Hiking up Mt. Sinai
Blessings,
Ilana
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Ilana Schatz replied to the topic Using Ritual to Navigate ALS Transitions in the forum Living With ALS 2 years, 7 months ago
Marianne –
I was initially feeling like I was drowning in sadness; I’m really learning and appreciating how powerful a gratitude practice is even as I live with this disease. What I hadn’t expected were the wonderful memories over my life that washed over me! I hadn’t thought about how much I loved roller skating when I was y…[Read more]
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Ilana Schatz replied to the topic Using Ritual to Navigate ALS Transitions in the forum Living With ALS 2 years, 7 months ago
hi Mary,
Glad you found it helpful; it’s definitely a journey.
Best,
Ilana
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Ilana Schatz started the topic Using Ritual to Navigate ALS Transitions in the forum Living With ALS 2 years, 7 months ago
THE POWER OF RITUAL — My Transition to Wheelchair Life
I was diagnosed with sporadic ALS on July 17, 2018, and I’m sure, like many of you, I was in shock for a few months. We quickly organized a trip to Italy in October, and though I was still able to walk and even hike slowly, I met my first challenge when I couldn’t cross a creek safely; I s…[Read more]
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Ilana Schatz posted a new activity comment 2 years, 7 months ago
hi Dagmar,
Thanks for all your work keeping this going. I have a piece I wrote about a ritual I created to help me thru the process of transitioning full time into a wheelchair. I’ve written it to inspire others about the power of rituals in general (it doesn’t reference any specific religion). Is this something I could offer thru ALS News…[Read more]-
Hi Ilana, your piece sounds like it would be very helpful to pALS facing a similar situation. Although I know ALS News Today doesn’t accept or publish unsolicited articles… I think it would be great if you shared your piece with our forum members. Why not start a new topic: “The Power of Rituals” or “Transitioning to a Wheelchair” – – then post…[Read more]
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Ilana Schatz became a registered member 2 years, 7 months ago
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Hello Ilana,
Welcome to the forum! I am one of the forum moderators, as well as a person who is also living with ALS: I was diagnosed in 2010.
If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or…[Read more]
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hi Dagmar,
Thanks for all your work keeping this going. I have a piece I wrote about a ritual I created to help me thru the process of transitioning full time into a wheelchair. I’ve written it to inspire others about the power of rituals in general (it doesn’t reference any specific religion). Is this something I could offer thru ALS News…[Read more]-
Hi Ilana, your piece sounds like it would be very helpful to pALS facing a similar situation. Although I know ALS News Today doesn’t accept or publish unsolicited articles… I think it would be great if you shared your piece with our forum members. Why not start a new topic: “The Power of Rituals” or “Transitioning to a Wheelchair” – – then post…[Read more]
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Hello LLana, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I lost m…[Read more]
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Ilana, that is a great suggestion and valuable for all community members to be aware of. I will see what I can find online and post some topics. Thanks!!!