ALS/MND Support Group Forums

My symptoms

holly1 — Fri, 20 Nov 2009 19:29:40 GMT

I have been ill for 8 months now and not knowing what I have. Had MRI of neck which shows a spur into throat, had endoscopy, all clean; had chest xray and cat scan - showing hiatial hernia and another hernia near belly button. This week I have had under the skin twitching on my left thigh and the day after weakness in that leg, with pain like sciatica under my left butt region. That twitching has stopped, so I am assuming the muscle is gone in that leg but no sign of smaller leg. Today I tried to wash a window inside the house and when on ladder was very wobbly in the legs. Also every joint when I move it has some pain. Pain in my right instep when I walk. I can still walk on my toes, but not very coordinated. I can walk on my heels, but my left heel hardly lifts the ground. When I walk barefooted, I feel like there are lumps under my feet. My hands and feet have started jerking when awake and I can make them start jerking when I keep clenching my hands; then when I stop, I see the twitches under the skin on the top of my hands near my fingers. I am 69 years old and have had bad arthritis and degenerative disc disease for several years.

I already had an appointment with a neuro surgeon in December because of the spur in my throat, which I can feel all the time and is painful sometimes. I am wondering if this could be a spine problem or ALS?

Thanks,

judy

Went to counselor yesterday!

chefdeborah — Fri, 20 Nov 2009 18:42:42 GMT

Well, I have been thinking about ending it all and my hubby told me I needed to go to a counselor. I knew I did, and I wanted to. His work has a free one so we made an appt and we went yesterday.

Fat lot of good that did. She practically gave me permission to kill myself! Just told me to call her before I did it! I wanted someone to help me through this. Talk me down, help me get through the depression, the helpless feelings! Not tell me it was okay to do what I was thinking! She said because of having ALS it was okay to kill myself because that was an illness for which there was no cure! DUH! I almost got up and left!:evil:

Hubby told me after we left that he didn't think it was a good thing to go back to her. I agreed wholeheartedly! Yall here have helped me much more than that yahoo did!

Thanks for being here when I need you! AS for her....:confused:

deborah

Tens/ems

Geo — Fri, 20 Nov 2009 13:15:08 GMT

For those who didnt catch my post on these I did go to Vital Stimulation Therapy and then bought my own machine online . And yes it does help ,no cure but it helps me .
When i went they said if you have ALS this will be at your own risk ,but i gambled . I did the 14 treatments and the head guy said no more . I was,nt showing enough improvements to suit him . THe stimulation in the muscles is not going to show alot of results ,but after doing it for a week i didnt choke anymore. I did have to buy some Tensive gel to help the pads stay on my neck . A little messy but comes right of with water. Keep in mind this is electrical shock pulses. If you skidish about getting shocked you may not like this . Geo

useless lung , muscles gone

maryam_rastkar — Fri, 20 Nov 2009 09:12:34 GMT

hi everybody
my father is gettin worse
his heart rate is always about 120 -BPM-
he cant breath properly because he has few muscles to do it
doctors say that he uses only 1/3 of his lungs-upper side of his chest- while breathing
is that the way it goes for everybody???
nothing can help him???
my prayers go nowhere

Need advice for a "Thinking of you" card

laurajh — Fri, 20 Nov 2009 00:23:30 GMT

My husband is down in Florida with his father who was just diagnosed. My mom & I want to send his father and wife a card, but we can't even begin to think of what to say. I could use some advice as to what would be appropriate. Any thoughts please?

to all the beautiful people on here

Bryant80 — Fri, 20 Nov 2009 00:13:20 GMT

Hey,I'm Bryant.I'm new here.First I would like to say, God bless you all!What strong wonderful people!I have some symptoms of ALS but I'm not here to dicuss that(get answers).It has opened my eyes in a whole new way.I had recently started turning some things in my life around but still my eyes were closed.Then a situation comes and changes it.When you think you have a disease or are diagnosed you really learn a lot about life.I have learned to love my wonderful girlfriend that I took for granite in a whole new way.I've asked her to marry me:grin:. I also picked up the Bible(Student Bible ,a lot easier to understand) ,which I havent done since I was a boy in Church and started reading it.I've been reminded were all here for a reason.It's not about what you have or who's got what.It's about helping those in need,loving one another,and serving the Lord.He has a plan.You may have been stricken with a disease but it will not compare to the the riches you will recieve in Heaven.For we all must die sometime and life is so fast anyway.Keep fighting and have faith in the Lord and he will provide you with all the riches you need.You people may not know it but your all Angels.You take in the sick or poss. sick and provide them with hope and knowledge and open up your heart.Believe me it's hard to find that in the world today.The Lord will not forget that.I know a some of you are down but at least you have hope.Over 4,000 of are soldiers are dead and most only in there 20's.Children getting kidnapped raped or killed or die in accidents everyday and they don't even get a chance to make it as long as us.So lets all be thankfull were here.The disease can take the body but not the mind and the soul.The soul lives forever.My mom also has problems.The neuro's still havent figured out what she has (possible MS).She has to take medicine to keep her balance or she'll stumble all around the house.She has brain fog ,slurs sometimes ,etc.She has her good and bad days put she still moves forward not knowing her dx.We have to remain strong.
God Bless you wonderful people!:grin:

ALS on Dr. Laura radio show

halfin — Thu, 19 Nov 2009 23:40:05 GMT

My wife has been listening to the Dr. Laura Schlessinger radio show this afternoon, and I just heard a guy call in who had ALS. It's funny how your attention can be grabbed when you hear something interesting - I was working in the other room and completely ignoring the radio, but when I heard her spelling out ALS I suddenly noticed what she was saying.

The caller was a guy who had been diagnosed recently, and was wondering how much to tell his younger son, who was 14. Dr. Laura basically said that was old enough to know the whole story, which sounds right to me. She suggested too that it is easier for kids to handle news like this if you give them things to do to help out the family. This way they can feel like everything is not out of their control, that they are making a contribution and sharing the burden.

My instinct, similar to the guy on the radio, has been to protect my kids (although they are in their 20s) and try to insulate them from worrying about what will happen. I see people here who react the same way, wanting to give their kids and their family as normal an upbringing as possible. But maybe that is wrong. Maybe it is better to ask them to help, even to make sacrifices. Psychologically it might make it easier to deal with the bad news.

Saying Thanks!!!

jonsjr40 — Thu, 19 Nov 2009 19:33:13 GMT

Hello friends
We need too say thanks too all the people and care keepers who help us everyday. I want to Thank some one who just helped me a very good person I cant say her name but she knows I am talking about her, Thank you friend you made my life better.
Now time to say Thanks too my Father who has taking care of me my whole life and my Mother if not for them I don't know where I'd be. I give Thanks for them caring enough to take care of me with this ALS for 19 years I Thank God everyday for having them.
ALS is tough just take it one day at a time and try too keep smiling.
God Bless you all.
John ;-)

First Tests Okay, But Worsening Symptoms

rhythman — Thu, 19 Nov 2009 16:36:46 GMT

Hi All

I only posted a few times on this wonderful forum, but I promised a few weeks ago that I would not post about my situation again until I saw neuro and had tests. Here's an update.

All bloodwork and mri were normal, but now my neuro will be off work for awhile (illness), so I have to get referred to another. All this could take a bit of time.

History: The neuro asked if there were any symptoms of any kind before late August (which is when I told him things started). I told him that I did have 2 bouts of swallowing and ear pain which was quite intense. In both cases (March and June), the doctors at the local clinic suggested eustachian tube dysfunction. I asked the neuro if those could have been early bulbar symptoms. He said "Possibly-especially since you are having speech/swallowing problems-but not really common."

The symptoms and their progression as of late has me confused. The only reason I even consider als at all is because of all the bulbar symptoms. I appreciate that they can come and go, so the coming and going of slurred speech, chewing problems, nasal voice, swallowing problems, excess saliva and choking episodes (dry foods) that I've had for 3 months suggests als based on all that I read.

I know that there seem to be an infinite number of onset patterns and progression rates and patterns, but I'm trying to convince myself that some of my symptoms might point away from als. Specifically:

1. Progression rate of limb issues. Seven weeks ago, I could run 40 min. and drum for a 90 min set with my band. Now, I can not run for even 5 min. without cramping, knees hurting, and so much leg fatigue that I literally stop...whether I want to our not. I can't drum for more than 5-10 min. and arms and legs simply won't work...they stop too.

2. Symmetry/Bilateral. All limbs are losing strength and coordination at the same rate. I went to the gym yesterday, and could only do one third the number of reps per set (4 instead of the 12) that I was doing just a few weeks ago. Same weight...fewer reps. Both hands are equally clumsy.

3. Numbness/Pins & needles/Limbs 'asleep'. I have read that, despite conventional wisdom, these issues can be present with als. I have awakened nearly every night for 4 weeks now with at least 2, and sometimes all 4, limbs 'asleep'. I wake up on my back and am immediately aware that my forearms, hands, calves and feet are 'asleep'. I have to move them to get feeling back. When I wake up in the morning, I repeat the process.

4. My tongue completely changed appearance in a few weeks. Today I am speaking really clearly, but my tongue doesn't even look like the same appendage it did a few weeks back. It was thick and always went 'pointy' when I stuck it out; now it looks like someone flattened it, made it really wide and it folds into a 'U' shape when I stick it out. I remember a post by BethU to another person where she suggested that speech problems should preceed obvious tongue changes. My speech issues come and go, but my tongue has changed big time.

5. Pain. Not severe, but calves, arms cramp, knees, elbows and wrists hurt. Knees are worst. Climbing and decending stairs hurts so much, it's ridiculous.

Thoughts??

Thanks for listening. I didn't want to bother everyone again, but with worsening symtoms and a neuro who'll be out, I might be in limbo for awhile and would appreciate even very brief feedback. Thank you. :-)

Steady progression

Just J — Thu, 19 Nov 2009 08:41:32 GMT

The rate of my husband's progression for past 5 yrs has always been steady. Meaning tomorrow is always worse than today, there's never been any remitting but has always been slow and steady. However, since early summer things are moving much more rapidly. I am getting more scared and the unknown (what's next) makes it even scarier. He has no formal dx but leaning to PLS.

In Aug 2008 Mike began using a cane, last month he got a walker (the kind with wheels and a little seat for resting). So 14 months from cane to walker seemed a bit quick to me.

In Sep 2009 he could force himself to walk (say from rear parking lot to front of office building to second floor doctor's office...with only use of cane). Just 2 months later he is no longer able to make that walk, not even with the walker, must use a wheelchair now.

We had to leave the house last Saturday and he had not been out since about 3 wks before that, we have 2 steps to get into house. I had to physically lift each of his legs so he could go up/down the steps. (I guess its time we had a ramp built)

Getting out of the house now has become a real challenge. Also, he needs a haircut and asked me if I could find someone to come to our home to do this b/c it so hard for him to be up and about. I bought him an electric razor to take care of shaving but what about when he needs more personal care (like clipping toenails or bathing).

It is just me taking care of him...and I have to work 5 days a week. Its all so overwhelming. I fix breakfast for him before I leave in a.m. and make sure he has something prepared for lunch that he can just grab out of frige and eat. I know I should be asking for help but I don't know who to ask, what if any organizations are out there? I don't really feel we are at that point but maybe you need to ask before you get to that point?

Also, go to regular neuro every 6 months. Sept visit had another emg done but was clean. We are going back to Johns Hopkins neuro next month. (we went to hopkins in Sept 08 just for another opinion).

Mike has always been very healthy and active, takes a holistic approach to healthcare, uses a lot of vitamins/herbal supplements. I often wonder if he would be worse had he not already been doing these things.

Anyway, sorry for long post. It's 3:35am here on the East Coast and I couldn't sleep for thinking of all of this.

Shoulder Muscles And PLS

Zaphoon — Thu, 19 Nov 2009 05:23:02 GMT

I've been perplexed regarding the frozen shoulders I have and have wondered if they are frozen as a result of having PLS or if it is indeed just an extraordinary case of bilateral frozen shoulder syndrome (17% of cases have been known to be such).

I found a book entitled, "Clinical Management of Sensorimotor Speech Disorders" authored by Malcolm Ray McNeil. In this book, chapter 50 is dedicated to PLS and is authored by Shannon N. Austermann Hula and Nayan P. Desai.

Regarding PLS, they write:

"Motor examination is notable for spasticity and weakness, mainly of the shoulder abductors, hip flexors, ankle dorsiflexors and elbow, wrist, finger and knee extensors."

The V.A. neuro thinks the PLS has been contributory in my case of frozen shoulders and I think he's probably got it right.

Kim

Chin Tuck Swallow

Geo — Wed, 18 Nov 2009 23:45:33 GMT

For those who have swallowing issues do not sit back and swallow .Sit up and swallow tucking your chin down ,this shuts your epiglotis and keeps food or liquids out of your lungs.or airway.Geo

Poem of rememberance

Uncle Jeff's girl — Wed, 18 Nov 2009 20:57:29 GMT

The following is a poem that I have written to express my experience with having a loved one with ALS. I hope that this helps those in the same situation stop and think about things with a different perspective.

Dear God, Why?!?

Why do loved ones get bad news?
I�m so sorry there is nothing we can do.
I fear life will be short for you.

A man, who thought a mid-life crisis, was his biggest trouble;
is now faced with life�s final struggle.

What a dramatic change in perspective!
Now, the fight is just to live.

It�s amazing how previously perceived mountains
Swiftly transform to beautiful fountains.

After the denial and the anger,
He turns to a little boy born in a manger.

Jesus, what do I do? My kids are still young.
For them, I will fight, until the last bell is rung.

His focus changes to making lasting memories.
From him, life is fleeting, like crisp autumn leaves.

His mind grows keener, but his body forsakes him.
Family and friends struggle with the loss of each limb.

Loved ones come to help him cope.
As they sit he fills them with wisdom and hope.

He now realizes, much of life is wasted preparing for the future.
We must start living, like tomorrow is not for sure.

�I didn�t start living till I found out I was dying.
The past year has been my best.� He said crying.

Now, I cherish each moment, each breath.
I�m thankful for each day I�ve eluded my death.

ALS progresses swiftly.
It pains my loved ones to see.

My body is becoming a cocoon.
My transformation will be complete soon.

I watch those closest grieve.
They sob a tremble as they leave.

Despite my inability to clearly speak,
The wisdom of my journey longs to leak.

I shoot them a comforting wink.
I hope they stop to think.

Out of cocoons, emerge beautiful creatures.
In front of your eyes, I�m budding my angel features.

Patience replaces intolerance.
Peace fills me, not by chance.

Listen closely, uncode my slurred speech.
To you, I am trying to teach.

Over the last year, God has been calling me home.
To think, all my life I thought I was alone.

The disease I once thought was a curse;
will definitely not end in a hearse.

Jesus paved the way.
So forever, with my Father, I can stay.

With this reassuring news,
Jeff shared some life altering views.

I lived my life at such a fast pace.
Only to learn, life isn�t even a race.

From sun up to down, I worked to make money;
when all they wanted was time, ain�t that funny.

After retirement, I imagined vacations with the family to see the result
Just one flaw, my travel agent and God forgot to consult.

Come to find out, in the next year;
I will get a one-way ticket out of here.

As my body starts to lurk,
In my soul, God began his final work.

Events in my life suddenly made sense.
Every time I�d stray, He�d build a new fence.

The more I know,
The more my body begins to show.

With God�s love, I�ve found the key.
From my cocoon, I shall soon be free.

Our mighty God lives within our heart.
Learning to listen is our part.

So the next time you ask God why,
Be sure to listen before you cry.

We are all soft balls of clay,
God is helping us form a little each day.

He will call us home when we are molded.
Until then, keep your hands folded.

-Sabrina McNally

ALS: Life lessons

Uncle Jeff's girl — Wed, 18 Nov 2009 20:51:41 GMT

The following is a poem that I have written to express my experience with having a loved one with ALS. I hope that this helps those in the same situation stop and think about things with a different perspective.

Dear God, Why?!?

Why do loved ones get bad news?
I�m so sorry, there is nothing we can do.
I fear life will be short for you.

A man, who thought a mid-life crisis, was his biggest trouble;
is now faced with life�s final struggle.

What a dramatic change in perspective!
Now, the fight is just to live.

It�s amazing how previously perceived mountains
Swiftly transform to beautiful fountains.

After the denial and the anger,
He turns to a little boy born in a manger.

Jesus, what do I do? My kids are still young.
For them, I will fight, until the last bell is rung.

His focus changes to making lasting memories.
From him, life is fleeting, like crisp autumn leaves.

His mind grows keener, but his body forsakes him.
Family and friends struggle with the loss of each limb.

Loved ones come to help him cope.
As they sit, he fills them with wisdom and hope.

He now realizes, much of life is wasted preparing for the future.
We must start living, like tomorrow is not for sure.

�I didn�t start living till I found out I was dying.
The past year has been my best.� He said crying.

Now, I cherish each moment, each breath.
I�m thankful for each day I�ve eluded my death.

ALS progresses swiftly.
It pains my loved ones to see.

My body is becoming a cocoon.
My transformation will be complete soon.

I watch those closest grieve.
They sob a tremble as they leave.

Despite my inability to clearly speak,
The wisdom of my journey longs to leak.

I shoot them a comforting wink.
I hope they stop to think.

Out of cocoons, emerge beautiful creatures.
In front of your eyes, I�m budding my angel features.

Patience replaces intolerance.
Peace fills me, not by chance.

Listen closely, uncode my slurred speech.
To you, I am trying to teach.

Over the last year, God has been calling me home.
To think, all my life I thought I was alone.

The disease I once thought was a curse;
will definitely not end in a hearse.

Jesus paved the way.
So forever, with my Father, I can stay.

With this reassuring news,
Jeff shared some life altering views.

I lived my life at such a fast pace.
Only to learn, life isn�t even a race.

From sun up to down, I worked to make money;
when all they wanted was time, isn�t that funny.

After retirement, I imagined vacations with the family to enjoy the result
Just one flaw, my travel agent and God forgot to consult.

Come to find out, in the next year;
I will get a one-way ticket out of here.

As my body starts to lurk,
In my soul, God began his final work.

Events in my life suddenly made sense.
Every time I�d stray, He�d build a new fence.

The more I know,
The more my body begins to slow.

With God�s love, I�ve found the key.
From my cocoon, I shall soon be free.

Our mighty God lives within our heart.
Learning to listen is our part.

So the next time you ask God why,
Be sure to listen before you cry.

We are all soft balls of clay,
God is helping us form a little each day.

He will call us home when we are molded.
Until then, keep your hands folded.

-Sabrina McNally

Music

indigosd — Wed, 18 Nov 2009 18:47:08 GMT

I am going to attempt to post this link for this music. I hope that it will lift your soul as it does mine!

KarmaTube: Prayer (Dion and Bocelli)
KarmaTube: Prayer (Dion and Bocelli)
Enjoy this beautiful song sung in both English and Italian by musical superstars Celine Dion and Andrea Bocelli. The inspiring lyrics set to breathtaking photography creates powerfully uplifting media. ...