Maggie Broeren

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

Hi

Although I haven’t lost my speech yet, I’m using an IPad/iPhone app called Speech Assist AAC. It has been very easy to use and allows you to customize words, phrases and sentences.  Cost- $18 US.

Maggie B

Milwaukee, WI

I sure appreciate all the shared info on this site. As a PALS, diagnosed in July 2019, I continually learn from many of your insights, tips and experiences. Thank you.
Maggie B.

Milwaukee, WI