Old 07-11-2018, 09:44 PM #1 (permalink)
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Default Father officially diagnosed today - help please!

Although we had a probable diagnosis a few weeks ago we were waiting to get into our ALS clinic for an official diagnosis from them. It still came as a big blow for my father and our family even though we were expecting it.

My question is his ALS functional scale rating was 46. Is that really positive for first appt?
Also he’s had symptoms now for just over a year. Mostly confined to weakness in right hand and twitching in arm as well as occasional twitching in every limb and stomach at times now. The neurologist says it’s slow progressing. Have others experienced a similar symptom onset? And if so how has your progression been?

As well what is everyone’s experience with how the progression stays. I know it can be different for everyone but generally does it stay pretty consistent or speed up at times?

Thank you for your help and time. I appreciate any info that I can tell my Father.
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Old 07-11-2018, 09:55 PM #2 (permalink)
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Default Re: Father officially diagnosed today - help please!

Trying to compare your father's progression with anyone else's is a fool's errand.

We pretty much all progress at different rates, and even one person's progression will vary. Mine has.

Better to concentrate on him doing the best he can.
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Old 07-11-2018, 10:01 PM #3 (permalink)
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Default Re: Father officially diagnosed today - help please!

Sorry to hear, Cherise. The "perfect" ALSFRS score (a person with no problems) is 48, so 46 is faring pretty well, and a year in, that's pretty slow progression. As for the future, expect it to be slow until it speeds up, as it likely will at some point, after which it may well slow down again, and the cycle may repeat more than once. I wish I had a better crystal ball, but no one does.

Don't try to be an oracle for your dad. Just let him know that this is a condition where you hope for the best and prepare for the worst, and his progression is slow at this time. If he has a bucket list, this is the time (after getting paperwork such as a Will, power of attorney and advance directives in order).

As he processes this news, he may want to do some of his own research, or do it without discussing it with you. Let him come to you when he wants advice, information, a second opinion, but he is the patient and doubtless will have his own way and speed of information-collecting as well.

Best,
Laurie
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Old 07-11-2018, 11:27 PM #4 (permalink)
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Default Re: Father officially diagnosed today - help please!

Thanks for both of your responses. I appreciate your advice and knowledge with this disease. It’s so new to us and still very hard to navigate through everything.

My Dad and Mom are planning a couple trips this year and he just bought his dream car yesterday. He’s trying to stay positive for the future but also now living in the present and taking each day as it comes, being grateful for what he has and can do at this moment.
A good way for everyone to live life, ALS or not.
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