@maggiebroeren
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Maggie Broeren posted an update 1 week ago
Dagmar,
Feel free to copy my reply and submit it.
Thank you for your help.
Maggie -
Maggie Broeren replied to the topic Write a short answer to “Why does rare disease awareness matter to you” and join our Rare Disease Day initiative in the forum ALS Awareness and Advocacy 1 week, 4 days ago
A rare disease matters to me as a person with ALS. I want there to be a cure sooner than later so fewer people will have to endure this horrible disease. Living in a constant state of grief is obviously hard for me but also for families, friends and caregivers. My prayer is for more research and caring professionals to help alleviate the sorrow…[Read more]
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Maggie Broeren replied to the topic Feeding Tube and Syringe in the forum Living With ALS 2 months ago
My Dr. always sends us home with a complete set of supplies each time we get a replacement tube.
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Maggie Broeren replied to the topic Thanksgiving 2022 in the forum Living With ALS 2 months, 2 weeks ago
Thankful for family friends and all the support which helps me live. This disease. Would be unbearable without all the love in my life.
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Maggie Broeren replied to the topic Preventative Care After Being Diagnosed With ALS in the forum Living With ALS 2 months, 3 weeks ago
Hi,
Annual physical, dentist visits, daily stretches/exercises- yes
mammograms, colonoscopy – no
positive outlook, stay engaged, pray/count your blessings- YES
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Maggie Broeren replied to the topic Is anyone getting the 4th shot/booster? in the forum Coronavirus (COVID-19) and ALS 3 months, 1 week ago
Hi,
I am 64 years old, diagnosed 2yrs and 4mo ago. My spouse, main caregiver and I have both received the latest booster. I’m happy to report, neither of us have had COVID at all.
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Maggie Broeren replied to the topic What kind of power lift chairs are recommended by ALS people like me in the forum Mobility Aides, Assistive Technology and Medical Equipment 3 months, 2 weeks ago
I have a Permobil w elevator function. It’s awesome, especnw Roho cushion.
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Maggie Broeren replied to the topic Looking for PALS for ALS News Today News Story in the forum Research Topics 3 months, 2 weeks ago
Yes, happy to help.
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Maggie Broeren replied to the topic ALS Support Groups: Pros and Cons in the forum Living With ALS 3 months, 4 weeks ago
I was diagnosed 3 years ago and am currently in Hospice at home. I am so fortunate to be surrounded by loving family , friends and neighbors!
My faith gives me a tremendous amount of support!My ALS life is so much better because of all the support and practical tips I have learned in support groups. My spouse and I live in an urban area with…[Read more]
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Maggie Broeren replied to the topic Recommendations for tilting shower chairs in the forum Mobility Aides, Assistive Technology and Medical Equipment 4 months, 1 week ago
Hi Robert,
have u checked Craigslist or local loan closets?
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Maggie Broeren replied to the topic Social Death in the forum Living With ALS 4 months, 3 weeks ago
Hi all!
I try to raise my wheelchair as far as the elevator component will take me. This helps me hear people better, and likewise they can hear me better. (My voice is getting quieter and softer as the disease progresses.)
Dialogues or 2-way conversations beyond 10 minutes are becoming more difficult. Two shortcuts I have been using lately
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Maggie Broeren replied to the topic Dressing up for hospitals or appointments in the forum Diagnosis Information and General Questions 4 months, 3 weeks ago
Hi All,
I like to dress up a little to show up like I want to be remembered I never think I am being judged by anyone from the ALS clinic
Since I wear my mask-respirator 100% of the time I do get funny looks sometimes. If it is a stare from a young child I often ask the parent if I can talk to their child. I simply explain that it is hard for…[Read more]
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Maggie Broeren replied to the topic EXCESS MUCUS in the forum Living With ALS 5 months, 3 weeks ago
I emphasize. I use glypopyrollate, nasal antihistamine and daily suction w nose Frieda ( $16 at drugstore.) Good luck.
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Maggie Broeren replied to the topic "How Do You Navigate Difficult Topics Like Mortality?" in the forum Living With ALS 6 months ago
Hi!
I’m Maggie, a pALS, diagnosed 3 years ago. I just started hospice.
As a married couple, we now see a deeper message being presented to us in all things and in new ways. I/we take time to reflect. We spend more time Listening to others and to one another. I’m never afraid to have a real conversation about death, but more importantly about…[Read more]
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Maggie Broeren replied to the topic Summer COVID Updates – – How are YOU doing? in the forum Coronavirus (COVID-19) and ALS 6 months, 2 weeks ago
Fortunately. my spouse, Michael and faithful caregiver have avoided Covid. We are all Vaccinated and boosted! Prayers for all pALS w Covid – such a scary time.
maggie B -
Maggie Broeren replied to the topic How to handle visitor requests when daily activities get difficult in the forum Living With ALS 6 months, 3 weeks ago
Hi,
I’m a social person; limiting visits to one hour works for me. I often excuse myself, say that I need to rest or need to use the bathroom. True friends will understand.
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Maggie Broeren replied to the topic What is, or has been the biggest adjustment for you in living with ALS? in the forum Living With ALS 8 months ago
Letting go of my independence has been ver hard.
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Maggie Broeren replied to the topic Do You Think You Match the Results of this ALS Survey? in the forum Living With ALS 9 months ago
I match the results of the study. It’s been 3 years since diagnosis. I’m happy with our insurance coverage. We are blessed by the local, awesome ALS clinic. We feel fortunate to have invaluable support for our local ALS Assoc., family and friends.
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Maggie Broeren replied to the topic Modifying your Home in the forum Living With ALS 10 months, 1 week ago
We have three overhead tracks for my sling- one in bedroom, one in bathroom, and one above a recliner in living room. They were professionally installed although my spouse measured and marked the ideal places on the ceiling where tracks would be installed. They are great and super functional – providing safe transfers and reducing stress on c…[Read more]
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Maggie Broeren replied to the topic A brand-new sub-forum: Let's discuss mobility, technology and medical equipment in the forum Mobility Aides, Assistive Technology and Medical Equipment 11 months, 2 weeks ago
Hi Steve,
it took me three mattresses until I slept comfortably. I’m using an alternating air flow mattress, provided by our hospital bed vendor. It cost approx $1000… worth it now that I’m sleeping better with only 1-2 turns p/nigh5.
Maggie B
Milwaukee WI
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