Old 08-08-2013, 02:43 PM #1 (permalink)
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Default all things are difficult before they are easy

Good day, everyone! My father, 73 and living in South Florida, was diagnosed last month with ALS. He started slurring speech last December. He can still be understood, but it has slightly worsened. He has not experienced symptoms anywhere else, nor has his EMG indicated a spread. It is my understanding, however ,that it is a matter of time, although an unpredictable one. In fact, itís incredible that something so important can be still, in 2013, so unpredictable.

The diagnosis has inspired a tumbling cacophony of emotions. My father is incredibly positive and centered. He has expressed appreciation for having enjoyed a long life full of love. We are trying to focus on the elusive but real gifts of this terrible disease: the fact he can say goodbye to people he loves, the fact that he can ease into this, the fact that things are painless. We are trying to come up with a team-based approach: my brother, who lives with my parents, can be primary caregiver; my mother will continue working and leading her life as my father wants, and I can do research and interface with insurers from Washington DC, where I live. We are trying to educate ourselves about what to expect, and I canít help but feel like this uneasy period is the calm before the storm, where we know what is coming but donít know when and how. It is unsettling, and the strength of the people in this group has been a comfort and, quite frankly, an inspiration.

In the last few weeks, we met with a speech pathologist to look at devices and schedule voicebanking, and are going next week to the St Catherine Multidisciplinary Clinic for ALS in Miami to meet everyone. We are not sure what else to do, except spend a lot of time with my Dad.

So, a few questions.

1) We looked at the Toby I-Series, Dynavox Maestro, and Mobi 2 devices. The speech pathologist recommended these because she has had great luck with their local customer service reps. Because my Dad appears to be bulbar onset, he will likely need the device before it is used as an eye gaze device. Any advice or recommendations? Toby is slickest and best interface, but may be a bit heavy.

2) For those of you out there using assistive technology for communication, does it take a long time to learn? Any recommendations on when my Dad should start using it?

3) What do you wish you knew at diagnosis? What things do you wish you might have done that you have not done? Anything, besides work through his bucket list, my Dad should be doing now that he is mobile?

4) Has anyone seen a checklist of things to do upon diagnosis? I am thinking of insurance, or other things that may take a while.

5) Has anyone seen a list of best equipment to use? For example , best bed, best furniture, best telephone, etc. I

6) Finally, book recommendations. Any book recommendations for either my Dad or the family that will be working to make his remaining time as comfortable and peaceful as possible?

Thank you for this forum. We are feeling many things, but alone is not one of them. If it is possible to love complete strangers, I love all of you.
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Old 08-08-2013, 06:26 PM #2 (permalink)
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Default Re: all things are difficult before they are easy

Hi and welcome.

I can give you some ideas--I am sure there will be many that will chime in with other things.

If your dad is mobile, he NEEDS to do the things on his "bucket list". not everyone has one, or has the money to do them all. if there is a special place he wants to see--do not put it off because things can change quickly and travel only gets harder.

I am assuming at 73 he is already on medicare and SS so he doesn't have to worry about that. Getting a power of attorney is very important, so his wife can sign for him. make sure that all insurance, funeral plans , wills and trusts are in place and correct. talk with family account ant or attorney about what will happen to all the assets when he passes. Oh and also a Living will, and write down how he feels about invasive live extending vents. Know his wishes and commit to carrying them out for him.

look at the living situation--is the house accessible or can it be made accessible? if it is a multilevel house they might need to move now while it is easier on him. the bathroom is the big problem for 90% of all pals as the progress. it must be big enough for a wheelchair and the shower needs to be made accessible. you will have to be creative--everyone has to look at what they have and what they can afford and figure out how to make it work. there is no set plan for this.

with equipment, you need to stay one step ahead of the disease. it depends on how he progresses on what you will need and when. the ALS clinic will help a great deal with that. the big items are wheelchair, lift and van. that is what most people stress about I think. you said his voice is going, what about his walking or hands? If your dad is a smart guy and open to learning things he will be able to use the communication technology easily. accepting a walker is harder...but falls are very dangerous and happen quickly.

As far as books, I haven't read it but I heard that there is a new book out by a UF alumni who has ALS I think it is called my Year of living with joy or something like that. I don't want to read it because it would make me cry too much.

speaking of crying--anti depressants for mom and dad--they have a lot to deal with. they can take the edge off and help a great deal. no shame in them at all.

good luck~!
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Old 08-08-2013, 06:57 PM #3 (permalink)
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Default Re: all things are difficult before they are easy

As usual, Barbie has great advice. It is very important to know what his wishes are regarding advanced directives. I have also found that Xanax has been very helpful in keeping my anxiety level about this disease at a minimum. We will give you any help we can. Every patient is different and every progression is different. Good luck and your parents are lucky to have you.
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Old 08-08-2013, 07:20 PM #4 (permalink)
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Default Re: all things are difficult before they are easy

Hi
I am so sorry for your dad's diagnosis. Barbie gave great advice. To address your question on technology. If his hands are good the text to speech apps on IPad etc are much easier than eyegaze to use. Eyegaze may be in his future of course but I would not go there yet when you can get a usable option relatively cheaply.

Regarding picking a system if you are buying one he should try them out at his clinic to see what works best. Eyegaze takes some practice and concentration. My sister has it and finds it tiring. It is helpful to sit next to the person using it and watch as you can often guess a word after one or two letters saving effort. I have used the eyegaze too and it does take a lot of focus. We have dynavox by the way

The book Barbie mentions is Until I say goodbye it is a memoir of the woman's first year after diagnosis

Take care
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