Maggie Broeren
Forum Replies Created
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Voicebanking earlier and learning how. To use The EyeGaze computer.
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I am most surprised by the large number of friends and family who have been so supportive. Not just with time, but with practical tips, good food being dropped off. I have been richly blessed with kindness and generosity.
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We use a Frieda, found at a common drugstore . We attach the Frieda to a suction machine.It may seem gross but the relief is super beneficial . You can put the Frieda up your nostril very gently and turn on the suction machine. We do both nostrils and it takes less than five minutes. Our hospice nurse and doctor are quite impressed with this method.
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I would suggest looking on u-tube for helpful videos. Search for ALS411. There are many practical tips on the ALS411 site.
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Please accept my condolences. Your advice regarding the trilogy is right on. The two times I was hospitalized we had to sign a waiver to use it.
All my best to you as your grieve your loved one.
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I am glad you have a faith perspective. My prayer for you is that the happiest memories of your time together replace all the horror of memories of ALS.
Maggie B
Milwaukee, WI
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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 which accompanies ALS.
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My Dr. always sends us home with a complete set of supplies each time we get a replacement tube.
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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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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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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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I have a Permobil w elevator function. It’s awesome, especnw Roho cushion.
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Yes, happy to help.
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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 an ALS clinic nearby. The wisdom and compassion we have gained has been invaluable.
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Hi Robert,
have u checked Craigslist or local loan closets?
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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
- I will ask my conversational partner to ask “yes/no” questions
- Sometimes I defer to my spouse, Michael and he can relay the story in more interesting detail than I would. Mind you, this is not easy for me to have Michael speak for me!
Maggie B
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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 me to breathe and that there is air coming through my mask. It feels like an educational opportunity to teach in the moment. It may also reduce any fears which the child may have
Maggie B
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I emphasize. I use glypopyrollate, nasal antihistamine and daily suction w nose Frieda ( $16 at drugstore.) Good luck.
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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 life. Death is inevitable, so I’m OK embracing it rather than denying it’s reality.
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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.
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Letting go of my independence has been ver hard.
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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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I don’t mind the synthesized voice. The EyeGaze computer gave me many choices of voices to use.