Diagnosed 12/20/2018

[Jamesgol]

Hi Mary,
I agree. It's nice to get answers to questions but its also helpful to read other person's stories.

Your moniker "Doglady" must mean you have dogs. I have four of my own.

James

Sorry to have to welcome you James, but, I'm very glad you found your way here and know you'll find a lot of help. So much good information and advice already. I've learned by reading everyone's messages to you tonight because our situations are somewhat similar. So thanks for being here and asking such good questions already. If you have a local ALS support group I'd recommend attending.
Mary

 

[Doglady]

Good catch, James. I'm a dog person, too, we have 3 small dogs - Papillons. So, now you can see my avatar is changed to show Lewis, my retired therapy dog. He and I used to visit a nursing home and were part of the Read program at our local public library where children read books to him. One of my biggest worries after diagnosis was figuring out a plan for each of them. What kind of dogs do you have?

 

[pittsburghgal]

Hi, James, and welcome. You will find tremendous support and great information here, so don't hesitate to ask any questions or just rant when you need to.

My husband also had a long period between first symptoms (left hand weakness) and diagnosis-- four years. He is now entering year eight after the first diagnosis of possible ALS. It looks like you also will progress slowly if you follow the advice given by others to do everything you can to avoid falls. My husband had many minor falls but he had a serious fall in the summer of 2016 with severe head trauma. He was hospitalized for 10 weeks and he did recover but the ALS progressed very rapidly at that time.

Sharon

 

[Firefighter58]

Hi James, hope your feeling good today I to use my scooter indoors but I also use it outside., it is not real good in the snow but I find that It can handle an inch or two but I must have someone with me to push if it spins out, (no snow tires you know). I go for miles in the summer, I really enjoy that. As for the feeding tube, it was installed about three years ago because I was having extreme difficulty eating and I could only drink very thick liquids, now three years later I don’t need the tube at all, I only use it for my meds and foul tasting vitamins. I do find though that I have to eat very slow, about 45 minutes for a sandwich and a drink or maybe over a hour for supper (chicken and potato’s and a glass of whatever). I am about the same age as you and I don’t worry about ALS killing me, we are all going to die it is just a matter of time, the cause we can’t control so don’t even worry about that, I spent 40 years in a dangerous occupation and if I worried about dying I could have not done it, So just carry on and don’t worry about things that you can not control, enjoy life and wake up every morning feeling good and ready to control and conquer another day, Be strong James and let’s converse more.
Al

 

[Jamesgol]

Hi Doglady,

I am very familiar with Papillions. They are very cute. We have quite a motley crew here: Smooth Fox Terrier, Belgian Malinois, Bull Mastiff, Neapolitan Mastiff.

Until recently, my wife bred show dogs. But, because of my health problems she has stopped going to shows and doesn't want to have to take care of puppies and me too. Personally, I encourage her to continue. I don't need that much help yet. Besides, I love puppies!

James

Good catch, James. I'm a dog person, too, we have 3 small dogs - Papillons. So, now you can see my avatar is changed to show Lewis, my retired therapy dog. He and I used to visit a nursing home and were part of the Read program at our local public library where children read books to him. One of my biggest worries after diagnosis was figuring out a plan for each of them. What kind of dogs do you have?

 

[Jamesgol]

Hi Al,I

I will use my scooter outdoors when it dries out a little. I don't want to bring that red Oklahoma mud into the house. I'm really looking forward to being able to walk my dogs again.

Thank you for the information about your feeding tube. I didn't realize that some lost abilities could return. Does the tube cause you any discomfort?

I quite agree. Being diagnosed when you are an older person is probably different. Being older we already expect to eventually develop life threatening illnesses and our life expectancy is already shorter. It could be I'll die of something else entirely, if the ALS progresses slowly enough.

James

Hi James, hope your feeling good today I to use my scooter indoors but I also use it outside., it is not real good in the snow but I find that It can handle an inch or two but I must have someone with me to push if it spins out, (no snow tires you know). I go for miles in the summer, I really enjoy that. As for the feeding tube, it was installed about three years ago because I was having extreme difficulty eating and I could only drink very thick liquids, now three years later I don’t need the tube at all, I only use it for my meds and foul tasting vitamins. I do find though that I have to eat very slow, about 45 minutes for a sandwich and a drink or maybe over a hour for supper (chicken and potato’s and a glass of whatever). I am about the same age as you and I don’t worry about ALS killing me, we are all going to die it is just a matter of time, the cause we can’t control so don’t even worry about that, I spent 40 years in a dangerous occupation and if I worried about dying I could have not done it, So just carry on and don’t worry about things that you can not control, enjoy life and wake up every morning feeling good and ready to control and conquer another day, Be strong James and let’s converse more.
Al

 

[Doglady]

Thanks for the kind words about Paps. You've got some serious dogs there, James! Your wife is probably right to put off the breeding and showing at least for now. Maybe when you see how things develop she can resume. Dogs are a great comfort.

 

[Firefighter58]

No James the tube doesn’t cause me any discomfort, I don’t know it is there until it is time for meds or vitamins.
Al

 

[Jamesgol]

Thanks Al, that is great news.�� I would imagine I'll be heading that way sooner or later, (hopefully later).

 

[Jamesgol]

Thank you for your great information, Laurie

Yes, it appears age is a factor that weighs against me. But, there are some other factors that are in my favor. There's no way to tell. As Doris Day sang, "Que Sera Sera".I

Right now I'm feel I'm looking at 18 months, not long term. Progression sped up this year and it's still moving.

I am getting an NIV device soon and my wife is picking up Riluzole today. I'm gaining a little weight too. I no longer walk anywhere, the scooter can go almost anywhere I need.

I plan to go as long as I can. My wife want me to go as far as I can too even though she is the one who does most of the work.

James

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[OutlanderALS]

As said already by several, so sorry to welcome you to the forum, but this site is the go-to source for information and encouragement, and empathy when needed. It is supportive and honest here, and no b.s.

I am about to face my one year diagnosis anniversary. Probably wondering (and yes, worrying) about rate of progression has occupied most of my thoughts. At every clinic assessment, I have been able to say that I am in so much better overall condition than many Pals, and that I am still very lucky indeed. But every day, I wonder, will I be facing another loss today?

And as already said by several, LIVE each day! Something will take each of us eventually. I am 71 and realize that so many things besides ALS could take me out, and this type of thinking does not lend itself to quality of life.

Regarding progression and doctors, my experience was one of seeking a diagnosis for symptoms that no one could explain. Used to walking five or six miles daily, I reached a point of extreme fatigue and not being able to finish my walks. My toes on the right foot simply stopped moving. My right leg became almost lame. I even went to be checked for varicose veins to see if that was the problem! It was actually the vein doctor who pointed out that my right leg had atrophied and I should see a neurologist.

At the beginning, I saw no point in taking riluzole (I mean, I'm 71!) but as the last neurologist said to me, What can it hurt and it might help. So I take it.

I am still somewhat in denial, but have been diagnosed by four neurologists, including the top doctor at a major ALS clinic. At each visit, I argue that I must have slow progression, but they tell me it is "moderate" progression. Whatever that means! I have moved from the rollator to a small wheelchair, and I had one bad fall resulting in a broken arm and crushed shoulder.

So enjoy that scooter and anything else that works for you! Come here often for whatever you need at the time! Remember that there is no Routine ALS; our journeys are all unique!

Your posting was a wake-up call that I needed at this point in time, and I appreciate your thinking. I'll be watching for your postings.

Good luck to all.

 

[Jlynn]

Sorry to welcome you here James. I'm sure there is a lot going on in your mind right now and hope that you have someone with you to help you get through all of it. That being said I would suggest that if you do have someone who is going to be your caregiver they should absolutely join this forum as there is a wealth of information for caregivers here. I learned as a caregiver that I trusted the advice here more than I did the doctors. Most docs in my area knew nothing about ALS and my brother was in no condition to travel several hours so it was such a blessing for me.

 

[Lkaibel]

Glad you found us James.

My husband’s first symptom was three years ago and he has progressed at least twice as fast as you so I’d say you look like a slow progressor. You sound very on top of things with falls, planning, etc. Sounds like you have a great attitude too!

I’d just add that it has helped us to remember that everything we feel is okay, and doing the will type legal stuff took a big load off our minds.