New ALS fighter

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Tirona

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Hello everybody,

I was diagnosed with ALS three weeks ago. I’m a male 47 yrs old who has always been very healthy. The worst health problem I have encountered in my life has been season flu once in every 6-7 years.
My symptoms started in Nov 2019. Stiffness in both calves and heavy legs when I was walking especially the tibialis anterior. By January 2020 I started to have ankle dorsiflexion problems and my gait was changed. After infinite blood tests, MRIs, EMGs and several doctors opinion, I received the final diagnoses ALS.

After spending the last weeks only worrying I decided to start dealing with ALS with courage and try to do my best to coop with this situation.
Finding this Forum and reading through it has been truly a game changer for me.
I want to thank all of you that participate here sharing your experiences and offering your support.

As of now I can walk slowly without assistance. I do feel I have balance problems when I’m standing. I feel safer when I walk though. No muscles atrophy yet in my legs. My weight is normal as before. I started Riluzole already.

I read many posts where planning ahead strongly suggested and I intend to do so.
Could someone offer me some details on what to consider purchasing or adapting?
Where do I go for equipment like rollator, wheelchair and other things I may need. Will my doctor suggest what I need and address me to the right place or I have to figure out on my own. I am totally unprepared for this and don’t know where to start.

Once again thank you for sharing your stories and offering support. I am glad I found you.
 

Nikki J

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I am sorry to hear this.

where are you being seen? Have you had a second neuromuscular opinion to confirm the diagnosis ? We recommend it for everyone.
as far as what to do we are happy to support you but if you are not already at mgh that is where you should go. The clinic staff are all great and the pts will advise you on mobility aids.
 

Tirona

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Thank you Nikki J for your reply.

I was followed by two very good neurologist. The second one is among the best for ALS @ MGH. I am just confused on how to proceed regarding planning ahead. Will meet my Doc next month and eventually will have a better understanding.

Thanks again!
 

Nikki J

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I am glad you are at mgh. they can help you. I would also sign up with CCALS if you have not already.

you can read in the resource section above where we have topics that may be helpful.

however you were just diagnosed a few days ago. Proactive is great but give yourself time to process everything too. Even if you strongly suspected diagnosis is always a shock
 

lisa g

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Hello Tirona
Sorry to have to welcome you here but your in a great place. You'll find all kinds of knowledge and support from all that are here. Take one day at a time and don't try to overwhelm yourself.
 

swalker

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I am very sorry to welcome you here.

Many here, including me, experienced the initial stage just as you described it. A big shock, followed by some disbelief, and then the beginnings of acceptance that it is real and that we must deal with it. Everyone goes through this phase in their own way and in their own timeframe.

I had a wonderful doctor who recommended equipment when he saw the need emerging. I think a more reliable approach is to discuss with your doctor(s) and other medical professionals what your challenges are and what you are worried about happening over the next few months.

My doctor suggested a wheelchair before I even remotely considered it. I sat on that suggestion for a year before doing anything about it. When I finally started the process of getting the wheelchair I was very surprised to find out that it would take 4 months to get it. Starting early is a very good thing.

I have the same story with my hospital bed. Same story with my breathing equipment. I guess my message is don't be like me. Do as I say and not as I did:).

I found my first few months after diagnosis were filled will paperwork. We needed to make sure finances were sorted out, wills and advanced directives were in place, and other administrative things were taken care of

During that time, I made the decision (or, really, the disease made the decision for me) that I could no longer work and needed to go on disability. I applied for disability (though work) and social security. That was a non-trivial process, though I was surprised how quickly social security approved me for SSDI.

As time has progressed, my capacity to do those important administrative things has diminished greatly. I am glad we tackled them early.

Steve
 

lgelb

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A sad welcome to you. In answer to your questions, this sticky may help.

Best,
Laurie
 

TippiLeigh

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Welcome! You sound a lot like me. I‘m mid-40’s. Currently I’m diagnosed with PLS, but my neuromuscular neurologist said she still can’t rule out ALS, so I’m in bit of a limbo between the two. My symptoms started similar to you. I also have an ankle dorsiflexion problem, but majority of my symptoms are limited to my left side.

I spend a lot of time on here and ALS Facebook pages to find good recommendations and real life experiences with equipment and other aides. Hopefully when you have your follow up at MGH, they can set you up with a nurse navigator (also sometimes called a patient coordinator) They’re a great resource!
 

affected

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So sorry to welcome you here. You do need to plan ahead, but I agree that you don't have to do it all this week.
Maybe read through our stickies on doing that planning, think about where in your body it is affecting first, and be ready with questions for your doctor next month on how to proceed with the things you need to do first.
Before then it could be worth getting all your legal stuff in order so that is one thing neatly out the way.

Ask away here, we often suggest old threads or phrases to search, but will always discuss anything that needs a good talking through too.
 

Nikki J

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At MGH you will have a primary nurse who works with your doctor you can call or email if you have questions or problems. if you already know the person who ultimately need to contact ( pt for example) you can always email them directly. there is also a social worker. I think the one month follow up is to let you process everything - they won’t make you figure it out alone
 

patrick123

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Welcome,
I think one of the first Things I did was to contact my local ALS Association. They have a wealth of knowledge that you need. They should also have a loan closet for equipment you may need and, support groups. They can also pay a home visit to determine what your home may need.
patrick
 

Nikki J

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CCALS and ALSA have similar missions. No reason you can’t sign up with both but some people seem to find CCALS easier to work with ( CCALS is a local charitable organization)
 

Tirona

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I have already subscribed with CCALS and ALS Association. As I dig deeper I get to learn more things. Also I was assigned a nurse from MGH as my reference person who is very kind and answers my emails quick.

I understand that I need to process all this new and sad situation which affects my life and my family in every level. But I can still walk on my own (slowly) and drive. I want to use this time to get prepared as good as I can and make it easier for my family logistically speaking. That why I am eager to find answers and prepare ahead.
I can’t crush right now!

Thank you very much for welcoming me, for your words of comfort and advices. It gives me strength and courage.
 
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Firefighter58

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Sorry to welcome you here, but so be it, nothing we can do about that. My advice is just to try and slow down a little, your needs will slowly show up and you can deal with them as they arise. Try to enjoy life as much as you can and don't worry about the future, you cannot control that, enjoy the day and look for to tomorrow.
Al
 

Dee Dee 0617

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Welcome, I concur with everything that has been addressed in the other posts. The thing that jumped out at me, was your mentioning your walk. Please obtain a rollator, one of the major concerns is falling, it exacerbates the disease.
 
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