Introducing Myself

[CrewsCT]

Hello everyone. My name is Curtis. I am a 45 year old husband and father. I was diagnosed just before Christmas with ALS, though I had strongly suspected that I had it for a few months prior.

I am on active duty in the Navy and am now going through a medical board which will medically retire me at some point. I have 19+ years of service and am aiming to remain on active duty until I reach 20 years.

My legs are the most affected right now, though I am still able to hobble around pretty well and can climb stairs, etc. I'm having a lot of problems with muscle cramping. Arms are doing well so far, as are my speech and swallowing.

Not looking forward to the progression of the disease, obviously. Researching ways (within reason) to potentially slow the ALS down through diet, supplements, etc. Any advice appreciated.

Although it REALLY sucks to receive this diagnosis, I do still consider myself relatively lucky to have strong family support and good medical/disability benefits.

Thanks for any help you can provide me, and I hope I can help some of you along the way too.

 

[Atsugi]

Welcome, JAG. Sorry to see you here. I'll get straight to business. Go look at the top of our "General Discussion" subforum and print out the sticky post stuck to the top called "For Veterans" It's a 10-page PDF.

I recommend getting a rep from the Paralyzed Veterans of America. They understand paralysis very well and can communicate via phone and computer directly with the raters at VA.

Wishing you luck reaching 20. You might want to boost your SGLI to the max. (The pre-existing diagnosis won't stop you, because it's group insurance, not personal insurance.) --Mike

 

[swalker]

Sorry to welcome you here. Thank you for your service.

As you have probably already found out, this forum is populated with a great group of folks that are extremely helpful. I really don't know what I would do without it.

Please be sure to ask any questions here. Everyone will jump in and try to help answer them.

Steve

 

[affected]

Sorry to be welcoming you Curtis. You will receive lots of support and good advice and tips here.

Riluzole is used to help slow progression and it works to some degree for many PALS, no guarantees, but getting it started early is the key. Probably your neurologist has already started you on this.

There are research trials you might consider becoming part of, there are some good threads about this to help get you started when you are ready to think about them.

The first best advice is to eat heaps of calories, totally change your thinking on eating. It has been shown that PALS who take in lots of calories and avoid big weight losses live longer and better. Do not underestimate the importance of this one.

Next is conserving energy. PALS, even from early on use far more energy for nearly everything they do. As muscles, in your case in your legs, are wasting, the surrounding good muscles are working even harder to compensate. If you push your legs too much, thinking 'use it or lose it' you may cause the progression to go faster as dying muscles don't do well with extra strain and may die back faster.

Any amazing treatments you read of out there are probably someone despicable making loads of money off desperate people. There is no cure, so if that is even hinted at, don't give them your money.
Some PALS do swear however that some supplements help them feel better, and maybe have a bit more energy. But beware of anything that says it will give you energy as you may then just hasten progression.

Lastly, but very importantly DO NOT FALL. If your legs are dodgy, don't think you are tougher by proving you can still do things. Falls can cause serious injury and hasten progression. I just lost a friend this week to head injury from a fall. It happens too often.

OK that's more than enough to digest ...


Tillie

 

[CrewsCT]

Thanks all. Mike, I checked out that PDF. Good to have the info consolidated like that. I have been using DAV for help with the VA disability evaluation. I have maxed out my SGLI and plan to convert it to VGLI when the time comes. It's a great benefit. Tillie, thanks for the tips. I am on Riluzole. My wife has been force feeding me to maintain my weight, though my legs continue to get skinnier and the weight just gets transferred to my midsection. I am worried about falls and over exerting myself. It is hard to know the balance between "use it or lose it" and avoiding overuse of damaged muscles. Am I supposed to avoid any unnecessary activity? The exercises suggested by my physical therapist seemed like too much, so I haven't been doing them. Also, we love our house but it has a lot of stairs and a steep driveway. Will probably have to move.

 

[lost mother]

my prayers are with you as well...

 

[Nikki J]

Hi sorry to be late welcoming you. Many ( most) physical therapists are clueless about ALS If it seems like they are asking too much they almost certainly are! If anyone talks about building muscle they are showing their ignorance. The role of exercise in ALS is discussed often. The old rule was range of motion only. Now many think mild aerobic exercise is good. Many find pool workouts the best. The rule my clinic gave was if you are not completely recovered in one hour it was too much. Add to that any risk of fall which you want to avoid at all costs. Ask about getting an afo or 2 ( ankle foot orthotic). I got my afo very early and my orthotist said most ALS patients get them too late. It helps more than I can say. It conserves my energy remarkably and consequently I am less tired and allows me to do more.
Use it or lose it really does not have a place in ALS thinking. If you overstress your sick motor neurons essentially they burn out faster and once they are gone all the rest in the world won't bring them back. This disease works fast enough without our help.

Tillie is so right about calories. Here is a research nugget. They found patients with a BMI closest to 31! lived longer.
As you read you will find lots of claims of miraculous answers. It is sad that unscrupulous people want to take advantage of dying people. However, do look into clinical trials ( clinicaltrials.gov). We are all searching for supplements to try. Many of us have our own little regimen. Read and decide what looks good to you. Look on ALS untangled for some neurological opinions on various things. You might look at methylcobalamin for which you would need a prescription. A particular form of b12 it was shown in a Japanese study in its injectable form to extend survival in those treated early. My neurologist believes it is worth a try though it has not been studied in other populations. When you get a chance to look at everything and have browsed some of our thread feel free to ask. We always have opinions on everything!

 

[affected]

Curtis a good rule of thumb is - if it take you more than an hour to feel recovered you have overdone it.

Stairs are both dangerous and use up so much more energy.

Can I suggest you look at moving house now? My reason is that you want to do it together, both enjoy setting up a new home and everything that goes with doing something this big. ALS is so unpredictable. If your legs were to go very suddenly, moving house will be a much bigger job for your wife.

If you suspect the PT gave you too much, don't do it.

You have a ton of information at your fingertips here, and you can ask questions as well.

 

[Nuts]

I'm sorry to have to welcome you, Curtis. unless you have a downstairs bedroom with lots of room for a handicap bathroom you are right that you should start looking at a move. We have a steep driveway and it presents challenges. You will need a flat place to park a wheelchair van so that you can extend a ramp or lift to enter and leave the vehicle. The only flat place on our property is a rather oversized detached garage. It works well, but getting back and forth to the house in bad weather can be difficult.

As for exercise, it's good up to the point that you stress or overtire yourself. The general rule of thumb is that if it takes you more than 45 minutes to recover completely, you've done too much. Some PTs just don't understand that you cannot rebuild anything with ALS--you just want to preserve what you have as long as you can. You want to do what you can while you can, since exercise is so important to keeping your body functioning, but you have to balance good exercise with over doing it.

Check into VA grants for accessible housing before you do anything. There are a number of options (help buying an already accessible home or help modifying one you own). As soon as your claim is approved, and that should happen very quickly, you'll want to get started as there is no way to know how quickly things will progress and the grant process is slow.

As you probably already know, ALS is a presumptive disease with the VA, so you will be 100% service connected as soon as your claim is processed. If anyone tells you this won't happen quickly, contact the PVA. They know the ins and outs of ALS since they specialize in paralysis.

Keep us posted on your medical board.

Becky

 

[JimInVA]

Greetings, Curtis... and thank you for your service!

You've already received some very good advice. We, too, found that Physical Therapists that were not associated with an ALS group or clinic just didn't get it. Those who were associated and had experience with ALS and it effects, stressed range of motion (ROM) exercises. Every morning, upon awakening (and after our morning cuddles), I do ROM exercises. We started these early on in Darcey's progression and it has done wonders for minimizing the pain that is often associated with lack of movement. We were told that calcium likes to build up in joints that are unused... and that the ROM exercises do wonders to minimize such build-up and for keeping joints well lubricated. Muscles also respond well to stretching. Now, with Darcey having no ability to move arms or legs, she is also enjoying regular massages of hands and feet. As she says, "they feel like stumps until they're massaged... and then its almost like they come alive again for a short while."

Darcey's neurologist encouraged her to not be shy about eating. Early on, she was attempting to lose weight as I'd have to pick her up and move her around. She thought she was helping me by losing weight. But she was also rapidly losing function. In March of last year, her neuro suggested she only had 6 months left based on measured progression. She's been eating well since then... enjoying any and everything (except milk products which increase flem and coughing)... and her progression has slowed to a crawl. Is it the food or an outstanding mental attitude? I can't tell you... but we are pleased with the result. Her GP recently said to her, "A1C and all blood work is outstanding. If it wasn't for the fact that you're dying, you're as healthy as you could hope to be."

In regard to falling, we were lucky. No one wants to give in to this disease... so we tend to push it. But it only takes one unexpected bad fall to make this ride a thousand times more difficult than it has to be. On the 3rd fall, we did away with standing transfers. Please err on the side of safety.

Again, welcome. I hope you continue to find answers to questions. We have some outstanding PALS & CALS within these forums.

My best...

Jim

 

[CrewsCT]

Thanks everyone for posting this info. I appreciate it. I Know your time is precious, like mine is these days. I have my first appointment at an ALS clinic (Virginia Mason in Seattle) on the 20th of January. I plan to ask about ankle foot orthotic and methylcobalamin (thanks Nikki) I will also see about a physical therapist who is familiar with ALS. Moving immediately would not be practical for me, because I am already planning to move to Tennessee once I am out of the Navy later this year. Becky, my steep driveway will be terrible for wheelchair van. Hopefully I will not be to that point yet in 2016. Despite my inability to change houses, your comments have really got me thinking about ways to avoid the stairs as much as possible.

 

[CrewsCT]

Nikki I got my AFOs yesterday. Nice looking carbon fiber kind. First impression was that they were awesome. They helped me walk so much more normally. However, after wearing them only a couple of hours (walking or standing maybe 20 mins of that time) my toes were numb and I couldn't wait to get them off! Then ater that night I had severe cramping in my upper legs. Seems the AFOs must have transferred some of the work from walking from lower legs to upper legs, and upper legs objected to that arrangement. Didn't wear them at all today, but plan to try them out again tomorrow for a trip to hospital.

 

[Nikki J]

Sorry to hear about the afo issue. If it does not resolve fast call the orthotist and see if s/he has any ideas of adjustments that could be made. I had to have my afo adjusted twice to make it comfortable but that was a pressure/ rubbing issue. If the second adjustment had not worked he would have tried another kind of afo

 

[KimT]

Hi Curtis,
I just wanted to welcome you and thank you for your service to our Country.

 

[KatB]

Welcome, Curtis!
I have a grandson in Va. Who finished the last ride on The Geo Wasington. His first year will be complete in May. I'm so proud of him for his service and I thank you for your service!