just diagnosed a week ago

[anneo]

Hello,
My step dad was just diagnosed on March 31st at Hopkin's. We have shape yes ALS for about 8 months. Onset symptoms were slurred speech, difficulty swallowing, weakened muscles, and breathing troubles. I'm his stepdaughter but really want to step in and do as much care giving as possible. I love up the street and have the time to help. Right now I am focusing on nutrition for him and support for my mother. His wife. I'm seeking advice from fellow caregivers and their support system as well as PALS. I would love to know what you have found helpful and possibly any advice or ideas that you can share. I appreciate honesty and have been viewing some documentaries about ALS so I can prepare myself to help battle the beast. I really appreciate your time. Lots of love

 

[MaxEidswick]

Hi, Ann (Anne?) --

>My step dad was just diagnosed on March 31st at Hopkin's ... Onset symptoms were slurred speech, difficulty swallowing, weakened muscles, and breathing troubles.

Well, as you probably know, everyone's progression is different. If he can still choose and eat regular food, then good for him .

If he's at the point where he can't eat regular food any longer (which is where I am), we have a couple of of liquefied things it Sandy makes for me that add up to about 2 1/2 to 3000 cal a day. So I have been able to maintain my weight despite not eating since January.

Let me know I'll put together late ingredients and quantities that I consume. It's all really simple stuff and just a blender.


>I'm his stepdaughter but really want to step in and do as much care giving as possible. I love up the street and have the time to help.

I think that is wonderful that you want to step in and help. This is a really hard time for everyone, and the coming weeks will be a roller coaster.


>Right now I am focusing on nutrition for him and support for my mother. His wife. I'm seeking advice from fellow caregivers and their support system as well as PALS.

You will find a lot of useful information on these formus.

If you haven't yet had a chance to see the ABCs of ALS, they are YouTube videos that I have found very useful for friends and family.

The caregivers you will meet here have pretty much done it all. They are mutually supportive (and they need to be) .

Take your time and realized that the progression can vary drastically between people.


>I would love to know what you have found helpful and possibly any advice or ideas that you can share. I appreciate honesty and have been viewing some documentaries about ALS so I can prepare myself to help battle the beast. I really appreciate your time.

Sounds to me like you already have an idea – – battling the beast is a good way to describe it.

Kind regards,

Max

 

[dalvin]

Anneo,
First off, with swallowing issues and breathing problems he should at least consider a feeding tube ( peg). There is a cut off point determined by his lung function below which they won't be able to do the peg surgery so if he decides he wants one then the sooner the better. Ultimately it has to be his decision. I've never regretted mine although some on here have decided they don't want it. Again, it's a personal decision.
Secondly, learn about the care involved so you can give your mom a break, let her go out with her friends from time to time so she doesn't suffer burn out.
Third, go to the archives section of this forum and read some of the earlier posts. They helped me to understand what I could expect so I could make informed decisions for my own care.
Understand that no two people progress the same or at the same rate.
Encourage both your parents to come to this forum as they can receive both valuable info and comfort from knowing they are not alone.

 

[pearshoot]

bulbar als needs a lot of attention....diagnoseded 2/2010 and do not have any bulbar problems yet.... you will get several posts shortly that will advise you....please remember and practice the three rules....STRONG BELIEF SYSTEM....HOPE....POSITIVE MENTAL ATTITUDE...I believe you do not die from als but live with als....not a sickness but a handicap.....courage

 

[anneo]

Thank you Max. I would love to know your drink ingredients. And thank you for your input. It really helps. May you continue to be a source of positivity.

 

[anneo]

Thank you so much for the peg information. I did not know about the cut off point.

 

[anneo]

Dalvin, you mentioned a cut off point for respiration and peg surgery. My step dad said his was 52% at Hopkin's. Would you help explain the cut off point?. Would he not be able to tolerate the anesthesia? I asked if he wakes up at night and he said he sleeps well and he uses his rescue inhaler if necessary. So no BiPAP at this time.

 

[mmklaus]

A comment about the PEG tube: My husband was to have one surgically placed at the VA Hospital in Columbia, MO , but ended up not having it done there because the pulmonologist felt that he would have difficulty coming off the ventilator after surgery. We attend a MDA clinic at the University of Missouri Hospital and asked our neurologist there about having a PEG put in WITHOUT having to have anesthesia. Turned out that the U of MO Hospital does it with a local anesthetic in the Radiology department, so my husband had it put in there about 6 weeks ago. He did great during the procedure. He's gained some weight and feels better since he had the PEG put in.

 

[MaxEidswick]

>Thank you Max. I would love to know your drink ingredients

the important one is:

- 16 oz whole chocolate milk
- one banana
- two tbls. peanut panut butter or nutella

good for 700 cals/day each, so mornung/noon/night >= 2,100 cals per day

 

[dalvin]

I don't know exactly what the cut off point is. I do know that once it goes below a certain point on the respiratory function they either won't or can't do it. Something to do with not being able to lay flat while they do it. If he wants one done he should ask his ALS team to refer him to a gastro doc that works with ALS patients. They will know more about it. From what I understand, he can still get one at 52 percent. If he wants one he should do it as soon as possible

 

[poppies]

I am so sorry that your step dad has received this diagnosis. It is wonderful that you are there to support him (and your Mom). My husband has Bulbar Palsy, so is still walking, driving etc, but has difficulty swallowing and speaking. As it gets more difficult to swallow eating becomes a chore. His sense of taste is still fine though, so I still give him normal food, but aim for textures that are easier to swallow. This can differ from person to person. Ask him to guide you and also observe him discretely while he is eating. You will see which foods go down easier and what he battles with. Your Mom can then adjust her cooking accordingly with a minimum of fuss. One thing that I find is working really well for him right now are smoothies. I give him one in the morning: 250ml milk; 1 scoop of pure protein powder (vanilla); 1tsp of cinnamon and 1 frozen banana. He loves it. Mid afternoon he has 200ml milk with Ensure powder, which is a dietary supplement. These shakes are in addition to his usual meals.
As said in a previous post, spend some time looking at old posts on the forum. You will learn so much. I wish you and your family all the best.

 

[poppies]

Forgot to mention a tip about bananas - buy a bunch of ripe bananas, peel them and wrap them individually in cling wrap/film and put them in the freezer. This way they are always available and also help thicken the consistency of smoothies which make them easier to swallow.

 

[anneo]

Thank you everyone. For a few months I have been doing smoothies: coconut milk, 1 scoop of super greens amazing grass, I banana and chocolate. He loves chocolate and it helps cover up the taste of the powdered greens. I'll have to double check with him but he likes the smootbies thin but maybe that will change as he progresses so I include a lot of ice. So I am very happy to hear my intuition about nutrition has been spot on. I so my best not to always ask or discuss ALS related issues when I see him be cause I know he is more than this disease. But I also do not want to tread so softly that we do not get the interventions done before he desparelty needs them. In regards to the PEG tube, is there another option if he waits too long to get the procedure done? Or chooses to not have it done? I still do not know all of his wishes in regards to interventions. I really appreciate you guys and your responses. Thank you so much.

 

[Nikki J]

Hi
It sounds like he is lucky to have you. About the PEG of course it is personal choice and people do decide against it. The option is to go without one and adapt the best you can to increasing swallowing issues. It can get VERY hard my mom opted out of one. There are more and more choking no matter what we tried, meals lasted over an hour and still she became emaciated. It was exhausting for her and caregivers. My sister chose a feeding tube but waited so long it was almost too late and almost died of postop pneumonia. If he choses a tube please,after the neuro says it is time,just do it. It does not have to be used right awat but it will there. I am a proponent of feeding tubes as you can tell but if his choice is never you must honor that as hard as it is.

 

[anneo]

I know he has an appointment at Hopkins in June and that is when he and my mom were going to the lawyer to write up the advance directives. I think he wanted to wait form the appointment to go over interventions and those questions prior to meeting the lawyer. I feel I will just have to ask if the feeding tube is something he would consider because I can tell he is definitely not getting appropriate nutrition. My mom does not cook so most of his meals are takeout food but not fast food from McDonalds burger king etc. I do cook and he has been eating meatloaf, meatballs, potatoes but I am 100% certain he hardly eats fruits. If opts out of a feeding tube what can I expect? Hospitalization of dehyradtion and pneumonia and then a cycle of hospital stay, bring him home, new infection hospital stay and bring him home until hospice I know its different for everyone but maybe a general idea of what to expect if he doesn't want the feeding tube.