Maggie Broeren

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]

My Dr. always sends us home with a complete set of supplies each time we get a replacement tube.

Thankful for family friends and all the support which helps me live. This disease. Would be unbearable without all the love in my life.

Hi,

Annual physical, dentist visits, daily stretches/exercises- yes

mammograms, colonoscopy – no

positive outlook, stay engaged, pray/count your blessings- YES

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.

I have a Permobil w elevator function. It’s awesome, especnw Roho cushion.

Yes, happy to help.

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]

Hi Robert,

have u checked Craigslist or local loan closets?

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

…

[Read more]

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]

I emphasize. I use glypopyrollate, nasal antihistamine and daily suction w nose Frieda ( $16 at drugstore.)  Good luck.

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]

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

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.

Letting go of my independence has been ver hard.

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.

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]

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