88 year old Mom recently diagnosed...please help!

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jmr1956

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My Mom will be 89 in November. She was always very busy, doing her own cooking, cleaning, etc. She got out with friends a couple of times each week. She was just diagnosed in July with Bulbar ALS and is having trouble speaking clearly. Is there anyone out there who was diagnosed at this later stage in life and can tell me what to expect?

She is getting frustrated with her inability to speak as well as she once used to. She is often tired, and takes many naps during the day. We already have a stairlift in my parents' home and she's finally beginning to use that.

We're taking her to the ALS Clinic sometime in the next couple of weeks, and hopefully they can give us some suggestions on what to do to help her cope with this. I'm afraid that she is just going to give up.

Any help or support you can offer would be greatly appreciated. I am so afraid for my Mom, and also my Dad who is 88 and also not in the best of health.
 

KimT

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I'm so sorry for both your parents.

The clinic will do various measurements but they will probably be most concerned about her ability to continue eating and her breathing. If she is willing, they may suggest a feeding tube and, most likely, a BiPAP (which most people with ALS eventually get) to help her get more restful sleep and some energy.

Make a list of questions for the clinic. Clinic days can be long so make sure you bring water and some food that she can eat. Maybe some Ensure Plus in a flavor she likes.

In the meantime, encourage her to eat and drink and to visit friends or have them visit her.

After her clinic visit you'll be able to sit down, as a family, and make some decisions on how best to care for both your mother and father.

If you have any questions, please feel free to post them. I do know of two people in my hometown who got ALS when they were around 80. One progressed fast and one slow.
 

Idaho2790

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01/2018
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I am 72 and was diagnosed with Pogressive Bulbar Palsy in January. I was very active, terribly healthy and no indication of a problem until I started slurring my words last summer. Ironically, today I just finished my third visit to UCSF and the ALS clinic. I hope your mom has a similar outcome.

After a second EMG today, it was decided that there has been no progression since January.

This is not to say that the journey has been easy. In April I had a feeding tube put in because I couldn’t swallow enough o sustain my weight. Thankfully we didn’t wait on this. I’m fed three times a day but things are not that difficult. I’m still able to drive, cook, do laundry and drive.

I hope your mom is lucky enough to not have it travel to her limbs soon. I feel very fortunate with that. The first month after diagnosis is really difficult because it is not a well known illness and nobody seems to progress alike.

I’ve been told that this illness in elderly women like your mom and I is not common, but that many don’t advance as quickly as normal. Let’s hope that your mom has the good fortune I have had. This forum is the best thing I have found for answers. They respond quickly and honestly but with upmost compassion. Keep in touch here!
 
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jmr1956

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Aug 1, 2018
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07/2018
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Thank you both for your quick responses! I hadn't thought of Ensure for Mom. That's a wonderful idea! I do hope that her disease progresses slowly. I've been trying to talk her into conserving her energy and muscle strength by letting my siblings and I help as much as we can (with laundry and other things).

We've been getting her out to do things that she likes to do on days that she is able. As her doctor told us, she has her good days and her bad days.

I'm sure I'll have a lot more questions as we travel this journey with Mom. Thanks for your support!
 

Larrytbm

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May 13, 2017
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05/2017
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Also consider text to speech using a tablet, app and wifi speaker. Even voice banking before her speech gets worse.

My wife is 68, diagnosed last year. Speech and coughing were the first symptoms. Now using a wheelchair, BiPap 24/7, feeding tube four times per day, nebulizer 3 times per day. Stopped driving last October. With this disease you have to prepare for the worst and pray for the best.
 
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