Old 06-12-2018, 08:38 AM #1 (permalink)
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Default Fiance' diagnosed last week

My fiance' was diagnosed one week ago today! UGH! I am reading like crazy and realize I will have a medical degree soon! I sure need one to understand everything! Its difficult when what works for one doesn't work for another. How do we know what is right? When pALS are losing muscle how is one supposed to help build muscle when glutamates are not good for pALS?! I look at what pALS can eat and see that they have low nutrition and weight issues!
Clean organic foods and home! Reduce the toxins in our lives even more than we already had!
Get the fillings out- I have heard this for years! There are safe ways to do it!
Chelation but no way on the IV!
DETOX all the time!
Live life, be positive and hope for the best!
No idea what lies ahead but we are taking this on with the the thoughts of living healthy and happy as long as possible.
What has worked for you! What hasn't? What do you recommend? books, tests, foods, drs.
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Old 06-12-2018, 12:49 PM #2 (permalink)
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Default Re: Fiance' diagnosed last week

I am sorry your fiance has been diagnosed.


From what i know, see, and have dealt with my personal recommendations are:

EAT in so far as possible, go for high fat, carb, protein, and calories and maintain weight as much as possible, assuming weight is somewhere around normal. Weight loss (unless obese) is not your friend.

Chelation, detox, filling removals are big money sucking wastes of precious time forget them now, please. I would also not get to head up on "reducing toxins" in general. Not likely to have an impact on your fiance's lifespan or progression.

Avoid fall, avoid falls, oh and please avoid falls! They hasten progression.

Agree 100% with living life and getting what you can out of each day. Meanwhile, please think on preparing for dealing with changes/progression as it comes.
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Old 06-12-2018, 01:24 PM #3 (permalink)
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Default Re: Fiance' diagnosed last week

Welcome to the forum, please ask questions or throw your 2 cents worth in to a conversation. Don't believe everything you read on Dr. Google, this group has real information from people living with this disease and care givers, past and present.

I was almost the opposite of what you are saying about going healthy when it comes to food. I chose to eat what I wanted when I wanted. By no means was I a junk food person, but if that was what sounded good, I would eat. I know a few pals who went gluten free or tried to eat as healthy as possible and while they may have felt better, who's not to say the same may have happened without a diagnosis. Which ever way you chose, just be happy, life is to short to eat unhappy. Now I get my "nutrition" from a box through a tube.


You also mention about building muscle. ALS is not a disease where you can build muscle. First the motor neurons die off and then the nerves. Keep the motor neurons alive and hopefully the rest will follow.
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Old 06-12-2018, 02:03 PM #4 (permalink)
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Default Re: Fiance' diagnosed last week

So sorry to welcome you smiles.

You are in a lot of shock at the moment, and your fiance will be too. The shock also often produces a real adrenaline rush and a feeling that you have to find the way to fix this and fast.

Try to be kind to yourself and your fiance and take in only what you need to know for now and be there for each other.

Lenore gave a brilliant sum up - eating calories is important, but how your PALS gets them really is a personal thing. I do agree that more healthy the foods the better, unless the PALS is not enjoying the food. Enjoyably getting lots of calories in is a quality of life thing too.

All those other things like chelation and fillings etc are really a knee jerk reaction.

Find out what living well means to your PALS (which may be different to what it means to you), and see how you can incorporate that into your life.

You don't need to figure everything out just now. We will help. This site is a huge resource, you can use the search bar above to track down lots and lots of topics.

Lastly, you haven't said anything about your fiance's onset areas or progression but I will say avoiding falls is paramount and getting finances and legals in place now will make things easier as progression happens.

I'm very sorry for this diagnosis.
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Old 06-12-2018, 03:22 PM #5 (permalink)
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Default Re: Fiance' diagnosed last week

Sorry about the very bad news. It's good you found this place and it's good you're getting into medicine and want to be there for your fiance. Welcome!

My first recommendation is to learn to accept the diagnosis and to keep all of your friends and family close. Keep them involved. People really want to help. Some need a specific tasks given to them or they will stand by helplessly. Give out tasks, don't be shy to ask for anything. Save energy to be emotionally available. Let others bring out the trash after their visit.

In many ways ALS is completely the opposite of what is preached to healty people. Losing to much weight is dangerous (some hear that as GAIN WEIGHT, I don't know about that). So anything you PALS enjoys, as the fine ladys before me already stated.

Yes, please tell us a little more about the current situations so folks know what information is paramount now.
Come here whenever you feel like it, ask questions, rant and vent, read some good jokes and absorb the knowledge. There are many solutions to many problems. Every patient is different. I read here for example a lot about the horror of cramps and spasms some PALS have to deal with. Yet my boyfriend never had anything like that. Everything can happen but it's no promise. Try not to worry too much about while preparing for the inevitable.
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Old 06-12-2018, 05:47 PM #6 (permalink)
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Default Re: Fiance' diagnosed last week

After I put my affairs in order and gained weight per Mayo Clinic, I did tons of looking around and talking to PALS/CALS. First, I tested all my minerals and vitamins as well as a comprehensive stool analysis to see if anything needed correcting. I found several deficiencies and started taking the vitamins to correct the deficiencies. After that I developed a supplement protocol that addressed my specific needs and added several antioxidants and anti-inflammatories. I also cut out most processed food and I eat mostly organic.

One thing that I would mention is to take care of routine things such as dental crowns, cleanings, eye exams, etc. while he is able. Don't neglect his general health because other issues can only make what he has worse. I still have one crown to replace because it's cracked and I'm scheduling it for this Summer. Don't let anybody talk you into having his fillings removed. I did heavy metal testing and my mercury was very low. It's a scam. I do think it's better for health, in general, to be as fragrance free as possible and it certainly won't hurt to use green cleaning products, but make sure you are diligent at keeping germs out.

I had allergy tests as well and don't have any food allergies BUT I had already gone gluten free and I also found that I do much better breathing and with energy without dairy in my life. That was very hard and I do let myself indulge once a week. I also found that grains, in general, make me sleepy so I learned how to make great paleo pancakes.

One thing I know helped with cramps and sleeping was CBD oil. I added THC about a year ago and that helps with pain.

If he has access to a warm swimming pool, it will help preserve range of motion and can even be done with a feeding tube.

I do my stretches after a hot shower. That way, my muscles are already warmed up. I try to get some exercise each day and as much sunshine as possible.

As this disease progresses, you can have enjoyable things lined up that will take the place of things lost. I had to trade running and sports for the pool and playing cards.

I think it's very important to monitor mental health as this disease can cause anxiety and depression. If he needs meds, so be it.

I lived alone when I was diagnosed. My place was not suitable for a caregiver or even a roommate so I sold it and moved to the beach. A friend and I bought a large condo and I did the remodel before I needed it. I'm still doing all my self care but, when the time comes, I only need to put in a ceiling lift (everything has been prepped for it) and I should be good.

If he has lots of family and friends, that is great. I had no family so I will need to rely on paid help once I can no longer take care of myself. My housemate will take care of my dog and be here, but he isn't my CALS.

I think one of the most important thing is to take care of YOU. If you are going to be there for him, you need to plan it so you can have time away, rest, and whatever else you need to keep going.
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Old 06-12-2018, 05:50 PM #7 (permalink)
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Default Re: Fiance' diagnosed last week

Hi, Falls Church, sorry to welcome you. I'm glad to hear that you are in it for the long haul with your fiancée -- s/he is very lucky.

As others have said, most of what you mentioned is fake science that is an ATM for the people involved. The idea is a healthy weight with enough fat and protein, 'cause ALS burns those faster. The glutamate thing is not an issue except eating less processed food to a point is good for anyone.

We have listed out some other ideas on other threads, that have helped PALS live better and longer, including diet and hydration, getting enough sleep, staying active/social/inquiring until you can't, using mobility devices as soon as needed to avoid falls, getting a BiPAP as soon as breathing requires it, using a hospital-type bed as mobility declines to improve breathing and stay comfortable, using an electronic lift when transfers become unsafe, etc.

We will support you however we can. And I can assure you very few CALS have a medical degree, and do fine.

Best,
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Old 06-12-2018, 10:23 PM #8 (permalink)
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Default Re: Fiance' diagnosed last week

Hey Smiles, sorry to meet you under these circumstances! I am just down the road from you in Springfield. I want to let you know about the ALS Association's support groups that meet once a month. There is a traditional group of PALS and CALS and a support group of just CALS. I go to the CALS meetings once a month and haven't missed since my husband's diagnosis a year ago. The one this month on the 23rd at the King's Park Library, in Burke, in the Supervisor's Office around back. It is from 10:30-12:30. It is an amazing, supportive, caring group of people and the information I've received over the last year has been invaluable.

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Old 06-13-2018, 01:17 AM #9 (permalink)
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Default Re: Fiance' diagnosed last week

Thanks for the comments.
He started with foot drop which caused falls then a fractured hip. Only symptom we see but dr saw a few other things. Dr recommended the filling removal and a clean diet. Organic and clean diet is always best for all of us! We have no toxins or have reduced as many as possible in the home.
We will see how things go.
We were already prepared for estate planning. I can’t remember if we have aDNR.
Will try to get to the local meeting.
Learning as much as I can to be a step ahead.
So much info out there. T-cells play a big roll as well as the mitochondria.
When were others diagnosed? What were your symptoms and what are they today?!
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Old 06-13-2018, 03:35 AM #10 (permalink)
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Default Re: Fiance' diagnosed last week

Smiles, it may help to browse back through recent threads to get some idea of where people are up to the posts are organised by date.

I'm just saying this in case you don't get too many replies.

Many of our PALS are fully paralysed and typing with their eyes.
Many of our CALS are barely keeping up.

The more you click around in here too, the more you will see how this forum works, and find out what an amazing resource it is. I know there is nothing else on the net like this place.

My husband was bulbar onset ALS with FTD thrown in (Fronto-temporal dementia which often goes along with bulbar onset). So he lost speech and swallowing and all ability to reason or be empathetic to start with. He was rapid progression and passed away 11 months after diagnosis. That was a bit over 4 years back.

I've hung around to help out - always figured that all the things I had to learn should be used for more than just one round.

There are some great posts at the top of the General Discussion section too that are standard information posts we made a few years back.

This one on anticipatory planning may be a good starting place for you at this point.
Anticipatory planning - trying to stay a step ahead

Just ask any specific questions you come up with and we will try to help.
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Old 06-13-2018, 05:32 AM #11 (permalink)
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Default Re: Fiance' diagnosed last week

I am sorry to welcome you.

I hope you have had 2 neurologists concur on the diagnosis? At least one of these should be from an ALS specialist. As you likely have experienced the diagnosis of ALS requires a number of tests to rule out other causes of symptoms and findings on exam and EMG

A healthy diet with enough calories to maintain weight and maintaining safety are paramount. Keeping engaged with life is important too

I have tried a lot of supplements. I honestly am not sure they have made any difference. The only thing I have taken consistently is riluzole which I got early and both I and my doctor believe it has contributed to my very slow progression. The other part is I am just lucky

No one has ever suggested removing my fillings and I have seen several of the leading ALS specialists

Did the diagnosing doctor recommend chelation as well? And what did the second opinion recommend? I have not encountered people in my various groups who found any benefit from doing those things. Stressing the body physically can have a negative effect. It has for me

Good luck

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Old 06-13-2018, 08:20 AM #12 (permalink)
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Default

Thanks for all the in put!
We are getting into lots of doctors.


What tests do you suggest we get? he has had tons of blood tests, emg, mri. We see a specialist at Johns Hopkins soon!

Perhaps Charlottesville as well.

Truly an awful disease!

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Old 06-13-2018, 08:56 AM #13 (permalink)
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Default Re: Fiance' diagnosed last week

Those are the main tests. Hopkins will review and see if anything was missed.

Are you seeing Maragakis or Rothstein? They are both brilliant. Maragakis was my sister’s second opinion ask them about their thoughts on fillings etc

Please don’t quote whole posts. It lengthens the thread which is a problem for PALS who scroll with their eyes. Preferably don’t quote at all just preface a specific reply with a name. Thanks

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Old 06-13-2018, 10:04 AM #14 (permalink)
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I’m sorry to have to welcome you. This is a great place to come for support and information. Wishing you the best,
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Old 06-15-2018, 06:10 AM #15 (permalink)
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Welcome,
Books that helped me?

Spy of the first person. By. Sam Shepard

Tuesday's with Morrie. By Morrie Schwartz
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