Recently diagnosed

[dbach]

Hello All:

I'm married with two small girls ages 10 and 13 and was diagnosed with ALS May 2, 2012 (my Mom and Dad's anniversary). This was such a blow to us when the neurologist suggested ALS I walked out of that meeting with my wife and asked, "is he nuts"? I was in great health, runner, lost 50 lbs, vegetarian (blood pressure was 127/70 last time I had it checked, etc), so this didn't seem possible to me - not realizing at the time that all this has no connection or bearing on the disease.

I was FINALLY able to reach out to the ALS Society of NS last week. I trying to take baby steps to look for answers and support, this posting is another one of those small steps.

Do others find it's difficult to watch certain things on t.v. or watch as others indulge in some form of self abuse? I get angry and think, you have a choice and I don't what's wrong with you.

At this point the ring finger on my right hand is affected and my left hand seems to be a bit weaker than normal. I also have some discomfort from time to time in the legs, which comes and goes. I notice the twitches at night a lot more than I used to, is this a psychosomatic thing or could it be that the disease is starting to progress?

I used to be able to watch t.v. and sometimes fall asleep in the basement, but now am too afraid to do so and want to be by my wife's side - every night.

Thank you for taking the time to read my rant. I not very good at expressing feelings properly in a text based format, so I apologize if this didn't come across properly.

dbach

 

[marypat]

I'm very sorry for ur diagnosed. I m glad u found us. U will find a wealth of information, caring and even humor here. It's good u reached the als ass. look for other resorces. Are u going to a clinic, if so u can find out alot of things there as well. About the people who have a choice, yes most of us get t.off by it on occasion but in time our world is more importain. I'm sure ur wife is glad to have u by her side, she is having alot of changes as well and there is support for her here as well.

 

[HelenL]

Hi dbach, welcome to our forum family, we can all say been there, felt that, done that... for me, denial was in full force while I kept thinking that the virus that I had that probably triggered my ALS (no proof, just gut feeling) HAD to be Lyme... it all fit in perfectly, I had been exposed, the timeline was right, the symptoms in retrospect was right, etc. Unfortunately for me, I was wrong.

Expect the feelings of denial, anger, loss, it's all part of our mourning period. The good thing is that picked yourself up and logged in here, let your wife know that there are many CALS here as well who are wonderful, and have great tips.

I'm sorry for your diagnosis, mine was on my brother's birthday... we'll never forget those dates, will we?

You probably do notice the twitches more at night, but your EMG is your best guide to where it is headed next. For instance, my last emgs showed problems in my arms nearly 2 years ago, and now I'm having lots of problems there. If the problem is primarily in your arms right now, you're probably ok to stay up watching tv for now, but consider getting a lift chair for when you need it.

Good luck, and keep a positive attitude, it makes a difference in your quality of life.

Helen

 

[ottawa girl]

Hello Glace Bay-- I am in Ottawa, (have visited and loved your part of the world!)

Received my diagnoses in April - I understand your feelings and frankly you expressed yourself very well. Like you I ran (marathons) and also vegetarian for 25 years - although I started eating bacon lately ! (very strange for me - but oh so yummy!). My symptoms started about a year ago with very intermittent hand cramps (left) and which I put down to arthritis - my calfs hurt from time to time - vestiges of running, I thought. In March I finally went to the doctor's when buttoning was problematic. Within 2 weeks - and catscan, MRI, ultra sound, blood work and an EMG - we got the news. (Can't fault the Canadian medical system one iota - had great service and fantastic doctors.)

I experience the muscle tics primarily on my left side - and yes - it's mostly noticeable in bed - just as I try to get much needed sleep! The day of my diagnoses, I was prescribed some tranquilizers - and used them only for a couple of days to take the edge off. The anxiety and fear and panic abated somewhat. Then, I returned to church and the prayers of my youth. Initially, I prayed for faith and then calm and strength. I am by no means a bible thump-er, but for me, saying the rosary a couple of times a day, brings me calm. Maybe it's the meditative quality. Don't know - and don't care - it's working. For me.

I have not experienced the judgment of other people choices - maybe that will happen too. Hope not - but I totally see where you're coming from. Stick close to family - and don't be afraid to reach out to friends and strangers alike. I have - and I can tell you - it's been truly amazing that so many people are so loving and helpful. Also, I think, we humans develop coping skills in due time. We get through today by living in today. I also cling to my husband and thankfully he's a rock. So is my large extended family. It was hard to tell them - especially my elderly parents (they just celebrated 70 years of marriage - and this is not a typo).

I will be grateful for the opportunity to be your friend - when you need one. Anytime - we can go down this path together. Hope to hear from you again - think positive and have a happy Canada Day! Do something special and be kind to yourself. You deserve it!

Elaine

 

[notgivnup]

dbach,
Welcome to our family, knowing full well you would rather be other places, so woukd we all, so sorry about your DX. But we are here to support each other in the good and the bad times. These are a bunch of people Pals and Cals who really care and are there for you when you need them and have a wealth of imformation for you and your loved ones on this new journey together, together we can make it, {HUGS}

 

[CGARS]

dbach,
Ya, it's all so overwhelming. You will get affected with everything around you.
A t.v. show,
Someone in a wheelchair at the mall,
Hearing someone complain about a minor health issue...

Everything will consume you.
The good news is, with the help of great people on this forum and time, you will realize, it's not the end.
That there is not only life after diagnosis, but great stuff.

I know exacly what you're think, and it sucks.

I am married, two kids (boy 16, girl 9) just turned 41.
I was diagnosed almost a year ago, knew something was wrong for over a year.
It's been an interesting ride, but I'm not only still hear, I'm loving life more than ever.

Stay positive, keep youself busy, and ask whatever questions you may have here.

Hang in there,
Cheers,
Casey

 

[momap53]

Welcome to the forums. I hope you'll find a great deal of comfort sharing this journey with others.

Anger is one of the components of the grieving process. I find that it comes and goes. Some days those tyPes of things annoy me and other days I'm too busy counting my many blessings.

 

[dbach]

Thank you ALL for the excellent responses. I really enjoyed this short thread. I actually LOL when I read Casey's tagline "I'm not getting weaker, stuff is just getting heavier!" - that was AWESOME. Moving forward how is the rate of progression measured, is it the EMG's that are done periodically? I was lying on the couch watching t.v. one day wondering if I will see my girls graduate, will I see both of them get married and got VERY upset, and haven't had that thought again until writing this and am having a hard time typing because my eyes are perspiring. I think the best approach for me (at this point is to live for today and not try to worry or think about tomorrow). Does this work for others? On another note, started taking valerian root at night and sure helps with the sleeping. Maybe this should have been a new post, if so sorry.
Thanks again, I think I'm going to make some terrific friends on here.

 

[ottawa girl]

Thank you ALL for the excellent responses. I really enjoyed this short thread. I actually LOL when I read Casey's tagline "I'm not getting weaker, stuff is just getting heavier!" - that was AWESOME. Moving forward how is the rate of progression measured, is it the EMG's that are done periodically? I was lying on the couch watching t.v. one day wondering if I will see my girls graduate, will I see both of them get married and got VERY upset, and haven't had that thought again until writing this and am having a hard time typing because my eyes are perspiring. I think the best approach for me (at this point is to live for today and not try to worry or think about tomorrow). Does this work for others? On another note, started taking valerian root at night and sure helps with the sleeping. Maybe this should have been a new post, if so sorry.
Thanks again, I think I'm going to make some terrific friends on here.

Hello - Never heard of valerian - will look it up. Thanks. This is all new to me too. My first EMG was in April (diagnoses day as well) and the next one is in August - but I was told that it would not be as invasive as the first one. I kinda got over the "hump"of the shock of it all by the end of May - but this week - negative thoughts crept back into my head. It's hard and I know what you're saying. BUT - like you - I'm trying hard to stay in the moment and grateful for today. It ain't easy. I figured out that if I get over tired- my symptoms accelerate. Trying to eat healthy (I ate Cheetos for 3 weeks after diagnoses- seriously) and keep a regular sleep time. Have not slept through the night - but it's improving. (wake up often with spasms). My marathon medals are now hanging from my night table lamp - for inspiration - and I touch them when I'm blue and recall my perseverance which I know I can find again.

Elaine (OttawaGirl)

 

[momap53]

In the US I attend an ALS Clinic every three months. Additional EMGs are not usually done.(Thank Goodness!:-D)

Doc does a physical exam, checks reflexes, does some strength testing of the extremities. We are weighed. Weight loss is a BIG issue with bulbar involvement and is monitored closely. I answer questions on the ALSFRS. (funtional rating scale).

I also see the RT (respiratory therapist) who does some breathing tests. You'll hear a lot about FVC.(forced vital capacity)

The Speech language pathologist does a quick swallowing test, has me do some timed reading and monitors my voice with some small gadget.

PT and OT are on site as well to see if I need help making any modifications to my ADLs (activitiesof daily living). PT might check gait and balance and will recommend adaptive devices like a cane, AFOs, walker, transfer boards, PWC etc. They can also recommend exercises for ROM and stretching. OT can provide tips for adaptive equipment as well (modified eating utensils, splints for the hands, tools to aid in dressing, using the computer etc.)

The Dietician (also monitoring your weight) will ask questions about dietary habits and any difficulties you're having with eating and make suggestions accordingly

A social worker is usually available as well a representative from the ALSA or MDA.

I like the "one stop shopping" aspect that the Clinic provides over having to schedule individual appointments with each of the disciplines.
There's some evidence that being followed in a multidisciplinary Clinic setting adds to better quality of life and possibly longevity.

Many of us try to make the most of each day by staying in the moment, trying to maintain a positive outlook, and doing the things that are most important to us.

We try to be proactive in preparing for the next challenge that we may face by getting adaptive equipment on hand and learning to use it before it's critical. (many face delays in the arrival of equipment for one reason or another)

Good luck!

 

[hjlindley]

Deb..excellent clinic description! I go every 4 months since I am a distal slow progressor. But we are all in this together!