Just diagnosed with ALS

[GaryLee53]

Want to know what things I can do to slow progression. I play drums and guitar, the ALS so far hasn't affected that. But I noticed slurred speech around Christmas 2017. Thought that it might of been a stroke, went to the doctor all they found Prolactenoma Tumor on my pituitary.

 

[GregK]

Riluzole and Radicut/Radicava/Edaravone.

And don't fall.

Sorry to welcome you here!

 

[GaryLee53]

Thanks for the info I will take that to University of Minnesota for my Appt.

 

[lgelb]

Very sorry to hear about your diagnosis, Gary.

Here are some things that can help you feel better for longer:

Self-stretching and later stretching by another person (range of motion) exercises while protecting weak joints
Massage to keep fluid from accumulating in hands and feet
Getting enough nutrients and liquids
Using respiratory support (BiPAP) as soon as needed and managing secretions
Using mobility support (walker to wheechair) as soon as standing/falls become an issue
Judicious supplement use
Attention to reducing stress, adapting hobbies/social interaction and ensuring deep sleep

Many of these may seem obvious, as is completing a will, power of attorney and advance directive, but a reminder never hurts.

PS -- if you haven't seen it, you might enjoy Jason Becker's web site/doc about music-making with ALS. He has lived longer than most, of course, but hey, still rocking out!

Best,
Laurie

 

[GaryLee53]

Thanks I'll check Jason Becker's web site, and thank you so much for the tips. I still take my dogs for a walk and swim at the gym, play my guitar and drums every day. Hopefully I can hit the golf course with my son this summer.

 

[KarenNWendyn]

Hi Gary, sorry to have to welcome you here. We have a lot in common. I play bassoon, walk my dog daily, and still go to the gym. I realize i will lose all these activities at some point, but I’m holding onto them as long as I can.

I think the secret is keep doing what you love as long as you can, don’t overdo, conserve energy where you can so you can save it for the things you love, and have less active interests lined up for the future.

Over time you’ll have to make modifications to the length of your music playing sessions, how far you walk the dog, and how vigorously you push at the gym.

Best of luck and good to meet you.

 

[GaryLee53]

Thanks Karen, I will do what I can as long as I can.
Best of luck and good to meet you.
Gary

 

[Romeosc]

Sorry to have among us!

Be prepared! Plan ahead! Remodel for future setbacks, if you can afford it. Roll in shower, ramps, etc!

Make sure to doing a living will, medical directives, etc... Get affairs in order to protect your loved ones... It hurts to know future, but bing proactive helps!

PS: Bank your voice https://www.modeltalker.org/getting-set-up-for-recording/

check local ALS.org to check out loan locker for equipment to save $ thousands!!!!

 

[GregK]

After thinking about your initial question, I realized that I skipped something important.
The below is cut from from a document I created.

Scams
A word of caution: As pALS we can and do easily fall victim to scammers.
A cure will be found, but we're not there yet.
In spite of this there is no end of people trying to sell a cure or treatment.

A few of the more common scams include:
• Chleation therapy
• Removing mercury-based fillings (removal can release more mercury than just leaving them alone)
• Alkaline water
• Stem cell clinics (NOT including FDA approved trials: these are a great source of hope!) Please read this: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3273527
• Lyme disease testing/treatment, past what your neurologist offers
• At this time, the newest scam is African Herbs

If someone approaches you with a cure or treatment, research it!
Check the ALSUntangled reviews mentioned above!
Ask in the forums and Facebook groups!
Ask fellow pALS!
And most important, use common sense! It’s an overused saying, but if it sounds too good to be true, it probably is.

When a real cure or treatment is found, it won't be a secret.
I and every pALS I know will be shouting the news as loudly as possible.​

 

[Clearwater AL]

Gary, just interested. What was the origin of your ALS onset... limb onset and etc?

It's good you are still able to do so much of life as you live it.

Maybe you might share some of your journey to diagnosis. It helps others knowing how this develops.

You mentioned that the doctor found a Prolactenoma Tumor on your pituitary gland. Was that related to your diagnosis of ALS?

 

[swalker]

Sorry to welcome you here, but welcome nonetheless.

We are all different and progression varies widely. Can we do anything to slow it down? I don't know.

But, I think we can do things to accelerate progression. Those things include pushing your body too hard, not getting enough rest, failing to use assistive devices, and not being careful about nutrition and respiratory function.

One of the greatest ways to seemingly accelerate progression is to fall. Fall's probably don't really cause progression to accelerate, but we can be very, very slow to recover from damage to our bodies. So falling may set us back in ways that make it seem like we have progressed.

One of the hardest things for me was to stop working. I loved my job and thought I would never retire. But, as it became obvious I could no longer work, I decided to go on disability. I had been progressing pretty steadily up until that point. Once I stopped working, my progression seemed to slow down. Was that because I stopped working? I don't know, but I would guess those two things are correlated.

Steve

 

[KimT]

Welcome to the forum nobody wants to join. I am glad you found us.

Things that I believe have helped me (every PALS is different)
1. medical cannabis (helped with sleep, pain, and anxiety)
2. correcting any vitamin and mineral deficiencies - I had blood tests to find out my deficiencies
3. Developing a supplement and eating plan very high in anti-inflammatory food/supplements and very high in antioxidants
4. Keeping my mind active by learning new card games, writing, and socializing with new people
5. Taking care of my general health whenever something came up.

 

[GregK]

Hi again Gary Lee!

You've told us part of the path that brought you here, to this sad lot . ;-)

But, going out on a limb here, I have to say: I'm pretty sure that "Prolactenoma Tumor" has little to do with ALS.

What's the rest of the story ? ​

 

[Chincoteaguer]

Hi Gary Lee;

Dittos on all the good information given so far on this post.

You are in a good place on this forum.

My experience is that if you ask questions here no matter how trivial you will get good answers from very knowledgeable folks.

One bit of advice. Don't take for granted that your doctor's, nurses, and care givers are ALS aware. Your ALS clinic, if you have one, should be your primary source for ALS information and advice.

 

[GaryLee53]

A little about my progression. Around Christmas 2017 people started noticing my speech had slowed. So on Feb. 1st I went to the Doc to see if I might have had a stroke. (I had a mild heart attack at 49, two stents) now I'm 65. Back to the story, that's when they found the Tumor on my pituitary, turned out to be prolactinoma, my prolactin levels were very high. Sent me to a neurologist to find out about the speech and swallowing issues. EMG shock test was done the news was bad so they are sending me to the University of Minnesota to see Dr. Walk for a second opinion. Though they are still trying to shrink the Tumor with Cabergoline. I'm grateful for the 16 yrs that I got after the heart attack. I got to see all four of my grandchildren Amber 14, Sarah 12, Calvin 5, Oliver 1. Oliver was born with PKU.