My wife died from ALS on Mothers day 2008

[Scott585]

My wife just passed away from ALS. She was Dx in July 2007. Her progression was rapid!! I want to offer my knowledge and experience to anyone who needs it. I was my wife's care giver. We have 3 young kids and I did it all myself. I went to Social Security, Department of social services, worked closely with the primary doctor and all the nurses, therapists and hospice. If anyone needs any info or advise from a 41 year old man who has walked in their shoes, please email me or leave a post. I would be happy to give you first hand information. It would help me to get through my grief to help others in the same boat. Scott585

[magnolia23]

I am 51 and have for about 6 months seen neuro symptoms change and get progressively worse.  It all started with full body jerking (left side-mainly waist-up); immense restlessness and fatigue; clonazepam is controlling the jerking; however, new synptoms have emerged.  My right arm especially wrist is very weak; have weakness in legs below knees; still some fatigue (although Provigil is helpful); but now.....random and very frequent muscle twitching under the skin everywhere.  Sometimes I feel as though I have to "concentrate" on swallowing saliva.  A 3rd dr. sent me immediately for a spinal tap and blood study--am waiting for the results.  The diagnosis is complicated by the fact that I have a pacemaker and therefore cannot have an MRI.  What do you think,. honestly?  I began worrying about MS (sister has it); Parkisnsons in family (that has been ruled out)---but since the twitching started and the weakness continues---I can't help but worry about ALS.  I would so appreciate your comment on how this looks to you compared to your situation. (for which I will pray).  Any other kind member's comment is also appreciated.

[pippylongstocking]

Sorry to hear of the loss of your dear wife Scott , you did all you possibly could for her and must love her so much .
I have been diagnosed 4 weeks ago with ALS, motor neurone disease , and I see my only way through this is to face it head on . I am 53 btw . I have lots of symptoms , the ones that urged me to see a doctor are speech difficulty and changes , and problems swallowing causing me to choke . I have lost weight , and get very tired and weak legged . I have been on Rizulose since my neurologist diagnosed a month ago .

Pippylongstocking x

[par36]

so sorry for your loss Scott.
My best friend's husband is 41 and Dx with als. He has now been having trouble swallowing, speaking and has lost a lot of weight. Things are coslty and some are not covered by ins. This is such a horrible thing for everyone and I feel helpless.
He is thinking about a feeding tube, is this a good idea?
He is on a breathing cpac(?) at night.  Can this disease slow done?..........
Bonnie

[lolly721]

hi scott,  U sound like a awesome man and it sounds like you did all you could for your wife. that alone should bring you some comfort.Mayb you can help me with my
mom. She is 84 and i have take her to 7 drs and she has had numerous blood test and emg and mri. the drs couldn't find anything for certain so we were told ALS.  Her symptoms are slurred speech and trouble swalling and loss of weight.Could this be the start of ALS or something else. Thanks and GOD Bless You     Lolly

[happyname]

I read your post about the loss of your wife and felt your grief though your words.  She must have been very lucky to have someone who loved her so deeply.  I am now afraid that I may get to walk in your footsteps and I am scared of even the thought of being without my husband.  For a couple of months we laughed because his thumb twitched.  It just wouldn't stop for an hour or so at a time.  Now it is his face, arms, legs and shoulders.  We had an EMG done that had results showing muscle disease in the arms and legs.  Last week we did the LP and we are waiting for results while his doctor is on vacation until monday. (His wife had a baby so I can't be mad)  The wait makes me crazy but I do love every day that I get to be with him where he is the man that I adore.  Was your wife ever frightened or did you face it head on ?  I can't figure out how to deal with this without freaking out our girls.  Some days I catch my self pulling back just a little so I can get used to being alone.  Then I run back praying that it can't happen, that I won't let it and I take every day from then on as a miracle.  I would love any advice that you could give on how you dealt with it for the kids.  We have 3 girls that are 14, 16 and 18.  

With this having been said I do hope that you may find happiness again and that life is going to provide that for all of us.  

[age40]

Hi Scott  

Sorry for your loss. I was wondering if I had early symptoms of ALS? A little over 2 years I had stabing pain in my right shoulder which caused me to become weak and later had muscle atrophy of the infra and supraspinatus muscles 3 months later. I went to a orthopedic surgeon and he ordered a MRI of the right shouler and if the C-spine( Normal). He put me in PT and my muscle strength come back in my shoulder. Do you think it's possible to have PT and regain muscle loss?

[ambaumis]

Hi Scott,

So very sorry for your loss.  I was hoping maybe you could help me.  I am a 44 yr old female with a history of Hypothyroidism.  In April 08 had a partial thyroid removal.  I have been taking synthroid since then.  In June 08,  I suddenly found myself unable to sleep at night.  In late June, my right lower eye began to twitch and is still doing so.  Last week, my right foot began to feel like it was on pins and needles.  I am in a panic and a bit of a hypochondriac.  I went to see an opthamologist, endocrinologist and a neurologist.  The endocrinologist does not seem to think it is the synthroid.  When I was at the neurologist he made a joke to say "Oh I hope you didn't think this is ALS. " Incidentally that was the furthest thing from my mind.  Now I am consumed by it.  I have looked it up online and feel very nervous about it. I am awaiting all the test results.  I was just wondering what were your wife's early symptoms?  Please reply.  Thanks, Ambaumis