Newly diagnosed family member

[Roxanne]

My 29 year old Nephew was officially Dx'd with ALS last week. We are all devastated. I am trying to guide him, as to when he should apply for disability, etc. I do not want to overwhelm him, but I want to be proactive. He has only been married a few months and has a young Son. I want to help them get whatever they can in order. Any advice would be greatly appreciated.

 

[Nikki J]

I am very sorry. Do you mean apply for ssdi or some private policy or VA benefits.
There is a sticky post for ssdi in the general forum and one for VA in the military one. For ssdi he should apply asap when he stops working. The diagnosis qualifies him medically but they will not give disability to someone who is working ( you are allowed to earn a very tiny amount only). There is then a 5 month waiting period after which he get ssdi and medicare assuming he has work credits. If they have no assets no income he might get ssi in the meantime. There should be a social worker either with the clinic or ALSA who can help figure out if they qualify for other assistance programs which vary by state

 

[Roxanne]

Thank you, Nikki. He wants to work as long as he can, but he does home repair, and I'm worried he will be injured. He currently has Medicaid, but his Wife was planning to put him on her insurance this January. Should he stay on Medicaid? I would think company insurance, would be too expensive with copay. I don't even know if having a pre-existing condition, would exclude him from being added. Thank you for listening....I feel shattered.

 

[soonerwife]

So sorry to hear about your nephew. Nice that you want to help them. You have come to the right place for good information.

 

[Roxanne]

Thank you so much. I told my Nephew's Wife about this site, and she is interested. She is so very supportive, and will mention it to him, when appropriate. I am thankful he has a loving, educated partner. She is strong, beyond belief, but needs support.

 

[Derek1014]

Hi my name is Derek im 29 years old im 6'-0" and weighed 155 pounds now down to 145 (but holding steady now) my aunt is Roxanne which she wrote previously in this post. I have been recently diagnosed for als pending a spinal I'm getting in January through Johns Hopkins by Dr. Maragakis and his team. I couldn't make it to the clinic because of time and they were to busy. I have to schedule PT, ST ect. My lung capacity is 60% which he said was OK (I'm currently a smoker, ugh) so hopefully that doesn't get worse. First symptoms are lose of speech ( I talk better and clearer in the morning, throughout day it gets more difficult to talk without sounding blah) also it's gotten hard to swallow. I had and barium swallow test done and I'm not aspirating just takes longer to get things down. I have also lost muscles in hands. Grip is weaker and hands are loosing strength. Still have arm, leg, back and stomach muscles. Also have muscle twitching all upper body from what I notice and sometimes are worse than other. I was trying to find out how has my disease has progressed but the doctor said " every patient is different and this is my first time seeing you so I'm not sure " I have my Emg and Nerve Conductor Results and was wondering if someone can read them and explain what they mean. This is still all so new to me so I am unsure of the do's and dont's. I have also been taking a lot of vitamins which the doctor said to continue to take as well as riluzole. I also asked about lunasin and he said it's worth a shot.

 

[Nikki J]

Hi Derek
Sorry you have to be here but glad you introduced yourself. Dr Maragakis is a great doctor so you are in good hands. Progression rates are unpredictable so even after seeing you for a while it will be an educated guess. My doctor did make a comment after 6 months that has so far proved accurate but really we have to prepare for the worst, hope for the best.

If you want to post your emg results it is fine to do so. Did Dr M not explain things to you? Or was it not clear or just too much to take in which is understandable? we are not neuromuscular doctors but we will try to help you

Please ask any questions that occur. Also browse here a bit and if you search some things you will find we twlk about lots of things. There are several lunasin threads you might want to read.

 

[Derek1014]

Thank you Nikki, I did find Dr. M very informative it was a lot to take in all at once I was there for 5-6 hours. I have read a lot about lunasin and read the forums on it and found all that to be informative also. I have also heard about grape seed extract but I haven't researched it yet. Crazy 1 day your healthy as a ox and bam you get hit with this. Thank you for responding

 

[Derek1014]

Here are the Results

 

[soonerwife]

So sorry to hear about your dx Derek. You have found a great forum for support.

 

[Nikki J]

Hi again Derek. You have a little nerve irritation in your wrist and elbow nothing to do with the ALS but they saw it so they mentioned it. Maybe due to overuse as I think you work with your hands?

The ALS part is in the needle test and does seem to have the changes we see with ALS. If you look at the columns and see numbers for fibs and psws and then look to the left and see the muscle they were testing it will give you some idea. ( there is more to it of course but maybe that would get you started.

There are a ton of supplements people try. The problem is we can't take everything- not just the cost but there is a limit to how much we can swallow. You can read here some discussions. Besides lunasin things often discussed are medical marijuana, l serine, acetyl l carnitine, methylcobalamin injections, tudca, turmeric, vit d, vit e, and many more. I would look at those and others. Make a list and ask Dr M. My doctor reviewed my list and made comments and suggestions. If you are having cramps I would suggest magnesium

 

[Roxanne]

I am so proud of you for reaching out, Derek! This is a wonderfully supportive group!!

 

[lgelb]

Welcome, Derek, though sorry you have to be here. You have a great aunt in Roxanne and I am sure much family support and strong friends.

It is a lot to take in, so don't feel you need to rush into taking anything. ALS is about taking care of yourself long-term in terms of nutrition, hydration, active/passive exercise, mobility devices, recreation, social interaction and breathing support. You can mix and match along the way as you find what works best for you at any point in time.

Best,
Laurie

 

[Derek1014]

Thank you all for the help. I greatly appreciate it. I'm currently taking a list of vitamins and medicines which Doctor M reviewed and said was fine. I'd like to know if my doses are high enough to be effective. Also started drinking weight gainer which has 1250 calories which I'll do twice a day

 

[Derek1014]

Oh I also did the scratch and sniff test. They are trying to to see if als patients like alzheimer patients lose their sense of smell prior to being diagnosed. My wife was the control and I was the subject and out of 40 she got 35 and I got 36 right. I bragged that I beathink her. Its good to be able to laugh at times