Newly diagnosed? What do you want to know right now?

[eric-jensen]

What’s next? ????. I’ve had a myriad of possible disease/conditions. Many of them are, “life adaptable,” but ALS has been the king of them.
My wife and I thought there should be a database with, “how to go about opting for a peg tube or BiPap,” as examples.
A list of support groups, locally, for pALS and caregivers.

thanks

[john-hamilton]

PEG tubes…good point!  I’m deliberating about getting one, but hear a number of caveats, like, Oh, you’ll have to go back to the hospital often to get the tube unclogged; or, Gee, if you wait too long you won’t be qualified to get it; or, You need a special doc…can’t just go to the ER and expect to get a good procedure—that’s the worst option, they say! Oh, and, You’ll probably still lose weight, even if you get a PEG.

So I wait.

[Dagmar]

Eric and John, This website (Your ALS Guide) has excellent and helpful information for newly diagnosed ALS patients: https://www.youralsguide.com/newly-diagnosed.html

And this page covers how to make the medical decisions as to feeding tubes, etc. : https://www.youralsguide.com/als-medical-decisions-newly.html

[alan-larrivee]

I guess what I most want to know, no one can answer. How much time do I have?

Do you let people know what’s going on? How? Why I  speak like I’ve been drinking, why I move slowly. Or is it nobody’s business.

 

[len-jax]

Alan,

You are right, no one can tell you how much time you have left. The thing to remember is that no one does, even the healthiest people. I always try to live like today is the best day I will have. Sometimes I fail, but my positive attitude makes life more enjoyable than looking ahead in fear. That is a waste of the time I have left.

When I was diagnosed, I emailed most of the people in my address book. I explained what I went through from the beginning so people would understand. That is a personal choice you have to make. I have found it was good in my case – it is a way to educate people, and most individuals appreciated the honesty. It is also a way of building support for your journey with ALS. Some people did not respond; it was out of their comfort zone, which is just human nature and perfectly OK.

I have continued to update them on my condition and what I am learning along the way. The response has been very positive.

Len

 

 

[lisa-brown]

I feel and live your frustration.  I monitor my own decline and have been pretty good at diagnosing timelines – from walking sticks to power chair.  I speak drunkardly when tired.  I choke occasionally.   My hands are disappearing.  I feel I have a couple more years, hoping for 10 more as the research/trials are just gaining momentum for new meds.

Look after yourself.

[alan-larrivee]

Thanks Len

I appreciate your comments. I do try to remain positive. It’s more that I have a list of things I want to accomplish. It’s wondering how much I will do. Also 6 months seems like long term planning.

I’m a private person by nature. I did let close friends in on the news. One incident bothered me. In a recent interaction with a jerk, I was answering a question in my slow slurry speech. This person started making gestures and mimicking my speech.
Has anyone else experienced this kind of behavior?

[jerry-fabrizio]

Hi,

6 months is not long-term planning.  If you want to live longer take the drugs that will help.  I take Riluzole and Nuedexta.  The Riluzole slows down ALS.  The Nuedexta has reduced Mucas in my mouth and that has helped me speak better.  Now I don’t sound drunk and slur my words.  Now I can sing, I try to sing Do Re Mi from Sound of Music every day.  I try to do Tai Chi also every day, Ba Dison Jin Qi Gong

I want to start Radicava as soon as I can.

I am also in a Courage trial for Reldesemtiv.  There are people in this group that have lived more than 10 years and are still doing well.  Fight hard.

All these things have really helped me, I can do them in private on Youtube.

I have not heard from a jerk like that.  When I talk, I usually watch the person to see if they understand what I am saying.  I usually tell them I have ALS before they ask questions.

Being a private person does not mean you cannot tell them you have ALS.  I have been asked if I was drunk a couple of times.  At work, my boss’s boss (bad boss) came over to see if I was drunk so he could fire me.  I told him I was just having trouble speaking and he did not smell alcohol, so he just walked away, did not ask if Iwas OK.  He did look sad though…

If people do not know what is wrong with us it can confuse them.  Make it easier and tell them you have ALS. The jerks will still be jerks but you will know they have a lot of issues themselves.  No normal human would treat you like that.   I am sure they have trouble sleeping.

 

I hope this helps you,

Jerry

 

 

[john-hamilton]

Nicely said, Jerry!

[alan-larrivee]

Hey Jerry

you caught my eye with Nuedexta .

Are you saying you take it for Mucas? I can’t find much information.

i would love to know more

[jerry-fabrizio]

Hi,

 

Yes, it does help with the mucas.  It helped me speak for a while.  Now I cannot speak.

Jerry

[stephen-oneill]

Hi Dagmar, i hope you are well?

I was just wondering if anyone can point me to a pharmacy or supplier of the new drug Albrioza.

I am in Australia and am really struggling to find out where in Canada or the US i can actually buy the drug, as i am allowed to import it as an individual for my own therapy here to Australia.

Can anyone point me in the right direction please?

Stephen

[Deleted User]

I am new to this forum. I have read your feeds and applaud you all for bravery, courage and all that you carry with you in the fight with this disease. All of this makes me cry and wonder why. I am not telling a lie about that.  My interest is in the alternative methods people have been using. What has worked, what has not worked. What makes life happier for you? Is anyone using the PEMF device ( mat) on a low voltage? Ionized water or trace minerals? What kind of nutrition was recommended? Does massage help? I am an acupuncturist wanting to help my patients with love and truth. That trust and truth thing is very hard when looking and seeking for people that lovingly embrace the client for aided health. I am wanting to learn from others as best I can. Others are the best teachers. Please keep up your good vibes and good thoughts every day, move forward and never give up! I thank you all and appreciate all that you have shared.

[linhen]

What to do about horrible muscle spasms that start only at night??
ALSO, what about being so incontenant??? are both of these just what happens with this ALS thing????? Was just diagnosed 1/06/2023!!!!

[Dagmar]

Linda, I don’t think that incontinence is associated with ALS symptoms. This should be discussed with your doctor.

As for muscle spasms… your doctor could prescribe a muscle relaxant. But I found that intermittent stretching and range of motion movements throughout the day helped me. Also, gentle massage in the evening. If it persists even though you are moving, stretching, and massaging… definitely ask your PT or doctor.

[duane]

“laughter is the best medicine”.  Its true, at least for me it has been.  My symptoms started in 2006 and I was diagnosed in 2012.  I have only been taking Riluzole and a few common supplements.  My overall health is good and the main problem is spasticity from the knees down and very weak ankles.  My advice is to have a positive outlook, keep busy, and laugh a lot even if others disapprove.  Relax.

[evelyn]

We found out yesterday (April 25, 2023) that my husband has ALS. He is 65 years old. We are overwhelmed. We have had suspicions for a few months now, but no diagnosis. What should our first steps be regarding our home, our finances, our children and grandchildren. What are the things that we should have solidly in place? We have thought of the following:

Update wills.
Review power of attorney
Review executor of will
Update personal directive
Make sure all bank accounts are in both of our names
We already have grave spots paid for. Will look at pre-paying funeral expenses and head stone.

Our current home is pretty accessible from room to room. Regarding same, we have thought about the following:

Ramps for access to home.
Walk in bathtub installed.
? vehicle needs – currently have an SUV & truck
Easily accessible bed

This is a lot to digest. Still reeling from the diagnosis, still working out how to tell people, trying not to be a basket case every time. Of course our kids know as well as our immediate family. Our grandkids do not know as of yet, and we are leaving that up to the parents to tell them as they know them best. We have 6 grandkids…5 boys aged 5, 10, 12,13 & 15, and one granddaughter aged 10. They all live close and we are very involved in every aspect of their lives – sports, holidays, birthdays etc.

Any or all advice would be appreciated. Thank you so much and I am looking forward (if that is the right wording) to the support that I will receive from this group.

Evelyn McCrackin (my husbands name is Wayne and we celebrate 43 years of marriage on May 3rd)

[Dagmar]

Evelyn, I am so sorry your husband has ALS. But it sounds like you are embracing the changes that need to be in place. May I suggest a few of my recent columns on this topic:

https://alsnewstoday.com/columns/prepare-prevent-strategy-living-with-als/

and any of my blog posts: https://alsandwellness.blogspot.com/2017/09/als-and-wellness-blog-archives.html

An excellent resource is: YOUR ALS Guide https://www.youralsguide.com/newly-diagnosed.html

thinking of you both> dagmar

 

[IBREM]

Very interesting…wife currently on Riluzole…Newdexta sounds promising…wife getting equipment today…oxygen…bed…from Kaiser ALS  group…more later…

[karen-sutherland]

Just diagnosed at age 70, does this disease accelerate quickly the older you are diagnosed? In hindsight I have probably been having signs for awhile, but associated them with an rare inner ear disease Called Semicircular Canal Dehiscence Syndrome. People have been telling me of people they know at 10 years after diagnosis and are still working, with few limitations?

I began slight leg weakness and horrible fatigue last December. Had one episode of tremor in my left hand and arm…followed by overall body weakness, then it passed, quickly. Gradually I could not get into our truck! Doctor says I am probably 7 months in, but already, I cannot walk. I can stand for about 10 seconds before I go limp. Just seems to be moving quickly. Looking for thoughts and possibly any helpful or answers from someone who has had quick changes to occur on this journey? I was officially diagnosed June 8th. I have fallen 5 times now, first time I fractured the transverse process of my spine. Other times just big goose egg knots, on the back of my head. One requiring spending the night in the ER. I am frightened to be left alone. Is all of this normal?? I hope I haven’t bored you with my “note”. I am a writer and tend to go overboard with my words!
Sincerely,
Newly diagnosed and frustrated, Karen
Sutherland

[Amanda]

Hi Karen,

I’m not a doctor but I wanted to respond with what I’ve learned.  The speed of progression is not typically associated with age. Each case/person is very different and the disease progresses differently.  Recently they have been looking into neurofilament light chain in the spinal fluid and blood.

“Neurofilaments are cytoskeletal proteins that are highly specific for neurons. They comprise 85% of neuronal structural proteins and determine axonal diameter. Neurofilaments are present in both the central nervous system and peripheral nervous system neurons. There are several different types of neurofilaments, including heavy chain, medium chain, and light chain.” from mycleavelandclinic.com 

From what I’ve read and learned, the higher the levels the more likely the more rapid the progression.  However, these NFL are elevated for a variety of reasons including MS, spinal or brain trauma and other things.  From what I understand they also vary depending on age as they can be higher the older we get.  Researchers are still learning exactly what level at what age is indicative ALS, and how to differentiate between other ailments.

You may be able to ask your doctor about this and get some idea of what to expect. If you have questions or would like to know more I can add some links to videos where ALS researchers are discussing the topic.

I hope this is helpful.

Amanda