Status
Not open for further replies.

Sunvista

Active member
Joined
Sep 28, 2014
Messages
55
Reason
PALS
Diagnosis
09/2014
Country
US
State
Virginia
City
Virginia Beach
I was just diagnosed with bulbar onset ALS at Johns Hopkins. So far I have mostly slurred speech but I can feel my swallowing starting to change. I'm 63, retired and with good health insurance. I had a job where I traveled the world, and have lived a great and adventurous life. I am not interested in a life where I can't sail, ski, white-water etc.

I am terrified of suffocation and have no desire to eat from a tube. My wife and daughter can't stop crying but I'm okay with it as I suspected six months ago something very bad was happening to me. Am I giving up too soon? When the time comes is there a good way to give up? I mean non-violently!
 
Welcome. Sorry you have to be here.
We say here there is life after diagnosis. It will be different. How it is different depends on you and your progression.
I have known of bulbar people who were walking significant distances the day before they died. Other bulbar people lose their limb function so an endstage bulbar onset person may look like an endstage limb onset person just having lost things in reverse order.
At the end a good hospice program can help. Make sure you talk to your family about what you want.

Are you giving up too soon? Maybe. I think you are, but I don't know you, can't see you and don't have a crystal ball! But neither do you. People with ALS ( PALS) do all kinds of activities sometimes with significant adaptation but not always.
Please think about the feeding tube. It is your right to choose but if you are already having swallowing issues there are tough times ahead for you and your family without one. My mother did not have one my sister waited way too long. The choking and struggle to get a few morsels down haunts me still.
Ask about nuedexta if it has not already been discussed. It is for emotional lability associated with this but might emphasis on might slow bulbar symptoms. Your insurance is unlikely to pay without symptoms of emotional lability so it might be good to have some symptoms!
 
Hi Sunvista,
So sorry for your need to be here. Please think very carefully before turning down the peg tube especially since you have bulbar issues. Many people still have a good quality of life still with them. It beats choking too death for sure. Don't ever give up until your last breath. Life is precious rather you have ALS or not. Vent on here as much as you want. We understand and will listen. Sometimes, we even share a laugh. There is life after diagnosis. Hugs, Kim
 
Eating and drinking are overrated. I am bulbar, and lost 60 pounds before diagnosis and getting the PEG. I lost another six pounds before starting to use it. I have now gained back nine pounds. The time on the teat, as I call it, is my time at the keyboard. I pour a can of Boost+ into the bag, hook up to it for about ten minutes, then follow it with 100-200 ml of water for flush.

There is life after diagnosis. My alleged mind is still doing pretty good.

GB
 
Hi Sunvista I'm so glad you have joined us, but I must say I am so sorry about your diagnosis. you have come to the best place, and I'm glad you have because you are going to need support.

The first month or 2 after diagnosis are so wild in what they do to your head, as well as your family's heads, and there is a lot of shock. This is such a huge thing to come to terms with, and yes so many fears to face.

But I know that so many here are great proof that, as Nikki says, there is life after diagnosis, it's not the same, but you will find a way through this initial time and into 'something'.

You have to let all the thoughts tumble around, everything is trying to find a place to settle in the new situation. I hope you can talk with your wife about how you are both feeling soon, and maybe your wife can join here with her own user name and get some support as well.

Keep talking here, we do all understand.
 
I know exactly what your going through, Sunvista. A year and a half ago I was a cruising sailor, avid tennis player, and woodworker. Not a day went by that I didn't measure in terms of exercise and productivity. Now I can do none of these things. This week I look forward to the installation of a stomach tube instead of working on the boat or meeting my buddies at a tennis match. My wife asks how my quality of life is. I say about 30%. That's still worth living. In any event what real choice, short of suicide, do we have? Life will never be as good, let's face it. This forum has been very supportive though. You're not alone. Alex
 
Sorry to welcome you here, Sunvista, but it is the best place to be. Give yourself and your family time to digest this, as each of us had to do. My husband has had bulbar for 2 years and is still walking and doing okay on a totally liquid diet. Wish he had chosen a peg tube but on this journey, you pals are in charge of your decisions about your life. Our lives are certainly VERY different but the new "normal" can still be quality- but won't try to fool you that each loss is difficult. Are you a veteran? If so, tons of benefits to help you and your family. Sounds like you love the water. Really no reason you can't continue to enjoy it by making some accommodations. For example, let someone else do the strenuous parts of sailing, and you can enjoy being out on the water. Don't give upon your life yet. No one can predict the speed of progression, and you may have lots of time yet to do some of what you enjoy. Please encourage your wife to join us. When things get tough, this is where I come for encouragement, support, humor and to be where people understand this journey. Good luck. Donna
 
Sorry you are now here.....as you I knew something was wrong with me about a year prior to diagnosis.
There is no reason to rush your decision on a peg, especially if you can still eat and are not losing weight.
In time your current assessments may change, most of us have changed our minds on various things.
For now....just take time for you and your family to get used to your new reality. Do not isolate yourself, and live your life to the fullest extent that your condition will allow.
 
Hi sunvista as everyone has said sorry you have to be here. When I was first diagnosed many things crossed my mind including giving up. My family did not want that so I try to make the best of a bad situation-not always very well. If you havent already done so, get your affairs in order (power of attorney, medical orders etc).
In order to prevent even faster progression there are several important things:

1) Do not fall and injure yourself-you will speed up progression
2) Do not lose weight-same thing for progression
3) stay away from sick people-especially kids. Any illness you get will be harder to recover from and may permanently affect your lungs and breathing capacity-which is what eventually kills us (unless you get aspiration pneumonia).
4) Think about the feeding tube-I just got one and had a harder time than most getting used to it-took me 2 weeks-but if you have bulbar than you will have trouble swallowing and if you swallow into your lungs, you will get pneumonia and can die from that.
As Nikki said try to get Nuedexta-it seems to help with swallowing problems. Before I took it I was on a liquid diet for over a month-now I can eat hamburgers and swallow pills again. Our AlS clinic is now giving free samples of Nuedexta to ALS patients with swallowing problems to see if it helps them.
If you havent hooked up with an ALS clinic do so the neuros there are more familiar with ALS.
 
Hi and welcome, sorry you are saddled with this illness.

My opinion is this: The older we are (I'm fifty-eight), the more aware we are that the end will come. I've had a great run, and if it's over tomorrow.... I'm okay with that.

Remember drugs are your friend.

Hang around with us for awhile. We're a good group. :)
 
Thanks for all the kind thoughts and replies. I can see I have a lot to learn. I'm not familiar with PEG, Nuedextra, Boost+ etc. Mostly these terms are just scaring me more. I am a Vietnam era AF veteran for what that is worth.

Are any of you guys taking anything for mood or depression? I feel like I need something.

I really don't want to be a burden on my wife. The only good thing I can see from all of this is that the love of my life probably won't die before me now - eliminating my greatest fear. My ever having to go on alone without her!
 
As a vet you will be eligible for lots of benefits.
PEG is feeding tube.
Boost plus is a nutritional liquid like ensure if you have heard of that. It can be drunk or used through a feeding tube
Nuedexta is a medicine that is given for emotional lability in bulbar ALS and other neurological illnesses. Emotional lability is when you laugh or cry inappropriately or out of proportion with what is happening. It MIGHT also help swallowing talking. It seems to for some people like Neil. Insurance might not pay unless you have the emotional lability.
Many take something for mood aside from that. Ask for it. I know someone whose neurologist handed her a prescription for an antidepressant along with a prescription for riluzole when she was diagnosed.
You are in shock right now of course but it will get a little easier. Access the VA but also an outside ALS clinic. Are you going to continue at Hopkins or go more local?
 
Zoloft made a big difference in my mood, I was diagnosed June 2013, I lost my voice, I have to be careful when eating but my life is not over, I just had to slow down.

Janie
 
My husband is on lexapro and clonazepam. It has worked wonders for him and he can sleep again.
 
Nikki J. - what can the VA do for me that my health insurance cannot? With all the bad press lately I'm not sure I want to go anywhere near the VA. Living here in a big military community I'm sure they're swamped. I had no plan to go back to Johns Hopkins mainly because it is a five hour drive, seven hours at Baltimore/DC rush hour. (Oddly, the ALS Association does not even list JH as a certified center or clinic). There are none listed in Virginia. Not sure what further good a clinic can do for me. Looking online it seems like the clinics are mostly for diagnosing ALS.

I guess the most convenient clinic to me now would be at Duke in Durham NC. I don't know that my health plan would continue to pay for diagnostic clinics. All of this brings up another question. How long am I going to be able to drive anyway? Does ALS eventually make one go blind?

I have a pretty good local neurologist. She advised me to contact her immediately as soon as I get any swallowing or breathing difficulties.
 
Status
Not open for further replies.
Back
Top