how old

[iluvmysoldier502]

how old are most people who have MND and at what age did they find out they have MND?:confused:

[mlb]

My brother was dx in September 2003 he was 46 years old. My belief is that ALS is indiscriminate. Anyone can be affected no matter how old you are.

Take care
Anna

[quadbliss]

I was diagnosed at age 34 in 1998.

Mike

[Rhonda]

I was diagnosed at age 45 in June 2006.
Rhonda

[Mike27]

I'm 43 now and dxed at 30.

Iluvmysoldier502, you have an interesting username. Was your spouse in the military in Canada or the US? Did he/she serve in the Gulf war?

[liz]

Diagnosed at 43 . First symptoms at 41.

Liz

[Mark]

Hi:

I first had symptoms had about a 61 which were somewhat obscure. I was not diagnosed with motor neuron disease until age 63. Mine is lower motor neuron. At least that is the diagnosis at this point.

Mark

[anne]

My mom is soon to be 76 and first started having symptoms at 73. Anne

[Al]

I'm 57 and was dx at 54. Statistically speaking the average age for diagnosis is around the mid 50's. There are people with it in their teens but it is a rarity. In the last few years there have been more people diagnosed in their 30's and 40's but predominantly in the 50's and later. AL.

[dana]

My dad was diagnosed with the bulbar form in March of 2005 at the age of 51. His symptoms started the summer before though. He received his vent in Feb of 2006.
Dana

[hboyajian]

My dad was diagnosed at age 84. He had been having symptoms of muscular weakness for several years, but nobody looked for ALS until he could no longer swallow. When I look back, I realize this probably began when he was 78 or 79, maybe even sooner.

[Beebe]

Hi there , My son-in-law Jackwas dx at age 41 in April of 2006. Symptoms started in January of 2006 in his fingers more so on left side. Should be an interesting thread. My Best to all, Beebe

[edna may]

Hello & Welcome I was dx May 2006 A week before My 80th Birthday. symptoms two years before. All the best to you. EM

[ChrissyWho]

My husband was diagnosed in April of 06 at the age of 55 but started having symptoms when he was 50. He lost the fight last month.

Chris

[Beebe]

Hi there, Do you have ALS? How old are you and where are you from? This could be a very interesting post if we could keep it going. We as a family wonder about what our pals did for a living , trauma, other diseases maybe in their lifetime. Where they live and their age etc. Hope we get more responses . My Best to all, Beebe

[Barbie4]

Hello

My friend Gail was diagnosed at the age of 41 in March 06, symptoms started in Jan 06.

Barbie

[Kathryn]

My mom was diagnosed last year at the age of 81. She is now 82, but first started with symptoms at 79.

[Teej]

My husband was diagnosed in January of '06, but we believe he was having symptoms for about a year before that. He's at about 35% lung capacity and in a wheelchair full time. He has some speech difficulties, but can still eat normally, He had a feeding tube put in for liquids. God Bless you all, and never give up...God Bless, Teej

[Paty]

My husband was 56 when he started having symptoms, around June 2005, was Dx on October same yr.

He was a duster pilot applying pesticides for 23 yrs.

Paty
Husband's caregiver
Baja California, Mexico

[Boots]

Yes, I too hope we will continue to get responses to this thread. My husband was diagnosed with limb onset May 2006 at the age of 50. We think his symptoms could have started as far back as 4-5 years with severe muscle cramping occuring throughout his body, but most noticabley, limb symptoms (left ankle) occurring later part of 2005. At this time he is walking w/cane.....experiencing same losses on right side and progressively growing weaker in hips on down. My sincere best to all and may we continue to help and encourage each other. Love Boots.

[saska]

My friend was diagnosed about three years ago, and knew something was wrong when he started tripping over the carpet. He's now 55 years old, and prior to becoming ill with ALS was very active and an outdoor enthusiast. I met him almost a year ago through volunteering with hospice, and at the time he could no longer walk but still had some strength in his legs. He could not move his arms, but had a little mobility yet in his fingers. He was still able to speak and swallow without any problems. He was pain-free up until a few months ago. Around September his diaphragm started becoming paralyzed, and over the past couple months, he has deteriorated quickly. It's very difficult to understand what he is trying to say, and it is becoming increasingly difficult for him to swallow. He's now in a very nice in-patient hospice facility and is getting excellent care. I thought I had an idea of how this disease progressed, until I started reading all the stories here and came to learn that there isn't a lot typical about how ALS progresses. So, now I don't know how much longer he has to live, but I can't imagine it could be very much longer. His name is Mike; I'd really appreciate it if you would keep him in your prayers. Thank you. Sharon.

[gifogif]

My symtoms began in early 2003 and was finally diagnosed in Jan. of 2005. I was 56 at time of diagnoses. I had leg onset and am now using a wheelchair for most everything. My arms and hands are becoming increasingly weaker. I thankfully have no respritory issues. Best wishes to all.

[jarobco]

Hi. I live in NZ and was dx 15/12/2005. I was 63. I turn 65 in March.
http://robertmnd.blogspot.com

See how I am dealing with it..
Robert

[terri]

LB was diagnosed in May 2005 at age 54.

[donnah]

Bens symptoms started in October 2005 He was told he needed spinal surgery, he had the surgery January 2006 He was miss diagnosed
June 2006 1st diagnosed
September 2006 official diagnoses from Dr. Lange( ALS center New York)
Died December 6, 2006.
You dont always have the 3-5 years spend your time wisely.


Donna
Barnegat, New Jersey

[JMH]

My Dad is 77 years old. He started having falls about 6 - 8 months prior to this. (He was still farming full time at this point.) He had other symptoms earlier such as weight loss, etc. but everyone thought it was the stress due to my mother being ill. Mom passed away in November of 2005. Dad was then treated for depression and doctors assumed the other symptoms were stress related. On June 6, 2006 Dad had his first neurologist appointment. He was examined and the neurologist diagnosed him without any further testing. I took Dad to see a specialist on August 2, 2006. He had the EMG, etc. and this neurologist confirmed the diagnosis. At present Dad is unable to use his legs and his left arm. He has difficulty with phlegm and excess saliva. These past few weeks its hard to understand his speech and he is very thin.

[davis07]

I was 59 when dig. had sytoms about a year some systoms
2 years are more. I have bulbar als which is speach and breathing
at this time ,dig in April-06,had the emontional part for years.

Davis07

[shannonme]

My mom was diagnosed with ALS in Sept 06, one month shy of 61. She started having symptoms in May 06.

[Poco]

MY husband got diagnosed at 64 years. He was a high energy Type A personality Had many professions but primarily a college professor turned realtor. We just finished a scrap book for his kids & it took two months just to organize it. He marched in Selma during the civil rights, he was an activist protesting Vietnam, worked in a mental hospital full time whille attending college full time, volunter fireman, taught criminology and social sciences, became a policeman so he could better teach and understand the criminal system, co-founded a community college etc. He has so many awards and recommendations and it breaks my heart how this disease is ravishing him. The scrap book brought back so many memories and that was good but also depressed him because he never thought he would be in this situation. He has such an energy and drive and I am counting on that drive to get us thru this. We live in Bend, Oregon. So that is a summary of our story. It's been five months now.
Thanks,
Phyllis

[saska]

Phyllis, I just wanted to say that your husband sounds like a most incredible man. He has given so very much throughout his life; God bless him. ALS is the cruelest disease I have ever witnessed, and it just makes me so angry that so many amazing and wonderful people are afflicted. Sharon

[emjoi]

My dad was 62 when his symptoms started.
Diagnosed at 63.
And died at the age of 65.

Yes, the disease, to put it bluntly, sucks.

[jhviv]

my partner was 39 when diagnosed. he's 41 now.

[Earth Mama]

I developed symptoms five months after I had my baby, I was 35. I was diagnosed with bulbar onset ALS last fall, at 36. I am 37 now, have hoarse or slurred speech, and muscle wasting in my hands and arms, my legs are beginning to be affected. I am still able to do all the care for my baby.

[zac111]

can anyone help the doc done my test and said to of my nerves were slol i think on his papper it had a 37 and a 36 does anyone know what this means? he said it wasnt suggestive of als,but still have twithing of muscles and sway a little when standing with a lump in throat when i swallow along with pain in legs any help would be great.

[zac111]

also he said he thinks its a mild nerapothy

[misscasey]

My mom had all the beginning symptons of ALS when she was 44, and was diagnosed just shy of her 47th birthday. It started with trouble walking, and in May of 2005 she moved to those double cane devices, and then later that year she switched to an electric wheelchair. ALS was thrown out onto the table in January of 2006, but we were all determined that that wasn't it. I had suspected for a little while that ALS was the disease, but it really upset my little brother when our father told us a couple nights ago that it was, in fact, ALS.

I'm just hoping for a cure so we can all go back to leading a relatively normal life. :neutral:

[Al]

Hi Misscasey. Sorry about your mom's diagnosis. It would appear from what you have told us that it is not moving fast but I am sure it seems to be to the family. If you need a place for questions ,advice or just a place to vent you have found the right place.
AL.

[scuba114]

This is my first post. My wife of 16 years was diagnosed with ALS on December 11, 2006. She is 36 years old and up till now very healthy. We have 2 children ages 10 and 3.

[scuba114]

I made a mistake in the years married. I fixed it though.

[sharonm25]

Hi Everyone,
My Mom began having problems in March 2006. She was stumbling and having problems keeping her balance. She was 72 years old at the time. After extensive testing done by her local GP and neurologist she was referred to the Mayo Clinic in July 06 and diagnosed with early onset of ALS. She passed away on Dec 10 2006 at the age of 73.

Sharon

[Al]

Hello Sharon. I looked back through your posts and didn't see any other mention of your mom's passing before today. I am sorry for your loss but thank you for coming back to let us know.
AL.

[JACKIEMAX]

3/6/07
my husband just turned 71, and was the essence of good health... played racquet ball 35 years and in great shape. was misdiagnosed last august and had back surgery for spinal stenosis, which of course did nothing to help his problem with walking.

after two emg's, seeing a pulmonary specialist, an ent specialist, and finally an als specialist, he was dx two months ago with als.

he first noticed weakness in his right hand, then his left leg started dragging some, then he began walking awkwardly, stilted backwards a little.

now he is on a bipap at night and gets fatigued just walking from room to room. they ahave ordered a wheelchair, motorized, for him, but it has not come yet.

he can drive a car, but can't walk when he gets there. he can still talk, swallow, does not drool, but his breathing is not good at all.

this is a monster disease.

please everyone, keep posting and keep sharing.

jackie

[midwestgirl]

My mother was 75 when diagnosed, probably had symptoms for at least 2 years previously. I, too, have to wonder why a person comes down with ALS. I know the researchers have not, and can not, say what triggers ALS - seems like many different factors. My mother was in a car accident 6 years ago, and hurt her left knee, which is where the first symptoms (left leg) reared its ugly head. Makes me wonder if somehow that didn't trigger something.

[patricia1]

It makes you wonder if the doctors really know much and what is really the causes and if they really know if it is als or is there something else out there and they are blaming als on every neuro they dont know I have bulbar onset and I am here 8 years with only speech and arms involved Which goes agains what the outcome of bulbar onset means So I really am losing faith in the doctors out ther They need to sharpen their pencils Pat

[patricia1]

What happened I know I was told I repeat myself but this is rediculous Ha Pat

[Countrycouple]

Mom was diagnosed with ALS when she was 67.. and figure she's had it now for four years.. In her 5th year.. Last year it was not noticable.. 1 year later....ALS has got a good hold on her now..

[Cissy]

Mom was just dx last week, but has had symptoms for about 18 mos. She is 68.

[bdyle]

I started having symptons in Feb. 05 and was dx. in Dec. 05 at the age of 45.

[terri]

LB was 54 years old.

[duplinwino]

My husband was dx last year, Nov. 06, he was 30 (now 31).

[jimercat]

my husband was diagnosed at 48, last year 09/06. we believe symptoms were present two yrs before because of falling and tripping and breaking two feet and a leg on seperate occasions. then the next year hospitalized for not being able to swallow his own saliva.
cj

[tabney]

how old are most people who have MND and at what age did they find out they have MND?:confused:

Dx at age 42. Onset of first symptoms at age 39.

[buf68]

My father was DX at 42, he will be 45 this month. It's almost 3 years exactly from DX actually. He had bulbar onset. We can barely understand him (anyone that doesn't live in the house basically can't). He got a PEG tube last fall. He's in a wheelchair exclusively, and can barely move his arms on his own. He is having troubles keeping his head up and his breathing has taken a turn for the worse. Not sure if this is just an episode or if it's going to end soon...still praying for our miracle.

[donnah]

Ben was first Dx June 2006 at the age of 65 second official Dx October 2006 died December 6, 2006. Now that was fast and cruel.... You never Know,

[d.shaw]

my dad's 74 ,the onset probably was about a year ago,stumbled,fell several times but like most we thought it was age creeping up.now i find out it's bulbar ALS.dad's gone from a portly 270lbs to 140ish in just under 18 months. my mother died april 05 very suddenly of an brain anurisim, they were married 50yrs, dad misses her very much and i think that grief sped up the issue, i think hes given up he does not want to follow the doctors orders. they and i want a feeding tube for him. this is all to quick for me!

[Frizzel]

Keep talking with your dad. You'll come to the best decision that will hopefully support what your dad sees as best for himself and that you can accept for him. My family and I have had to make some compromises on both sides for my future. I'd encourage you to be open as your dad shares his personal hopes and dreams for his future with you. Wow, what a difficult place...we know.... and it can be done.

[d.shaw]

Keep talking with your dad. You'll come to the best decision that will hopefully support what your dad sees as best for himself and that you can accept for him. My family and I have had to make some compromises on both sides for my future. I'd encourage you to be open as your dad shares his personal hopes and dreams for his future with you. Wow, what a difficult place...we know.... and it can be done.
i know im in the right place for support,i have a feeling i'll need it....thanks again

[midwestgirl]

I am so sorry to hear about your father, ALS is such a horrible disease. Does your father have his speech? My mother was dx Dec 2006 at age 75, but was having symptoms much earlier - mainly leg cramps. She started with foot drop dx Dec 05, which progressed to bulbar symptoms March 06. She did not want a feeding tube originially, but after swallowing issues and choking became a daily occurance she decided to have one placed. Her feeding tube was just placed April 2nd, which was a good decision for her.

It must be so hard for you - do you have other family nearby? It was harder for me emotionally when mom did not want the feeding tube. But I had made the decision to support her with whatever decision she made. Mom had "only" lost about 15-20 lbs, we had been supplementing her diet with protein shakes.

Just love your father - he has had a lot to deal with the last couple years. This forum is a great place for support.

[beaner1]

Hello all.
My husband was diagnosed last Jan. and he was 45 - now 46 turning 47. I believe - looking back - that his symptoms started at least 2, if not 3, years prior, and it took 1 1/2 years to get a diagnosis. He was very fit, active - in great shape. Originally it started with his left foot - just didn't feel right when he ran and played hockey then started to drag, then he had dropped foot. Then it progressed to his left leg, right leg, and is now affecting his hands, arms, his ability to clear his throat (saliva), can't cough, etc. He has been using a bipap machine at night for a year and a half, but he gets extremely fatigued, can still walk a little (very little!) with a walker - mostly just to the bathroom. Thank goodness he can still talk and eat!

This disease is so horrible! To watch a man who was so alive slowly fade away is awful! My husband has also been suffering from depression about the disease for quite some time. I believe he has thoughts of suicide very often, but cares so much for our kids that I don't think he'd do it ( at least I pray he won't!).

Lately, he's been experiencing pain in his back. We have a special easy chair for him - has heat, vibrater/massage, and raises and lowers. Does anyone have any suggestions about wht we could do about his pain?

This thread is great and I hope it continues.
Beaner

[MtPockets]

Dear Beaner,
I'm very familiar with back pain since I was in an accident over 20 years ago and have suffered with constant chronic low back pain due to nerve damage since that time.

My Docs have tried everything to help me be comfortable, especially since I was Dx with ALS may 11, 2006 and spend all day in a wheelchair or lounge chair.

Other than pain medications the only other ideas I might suggest are getting a air cushion seat and back rest for him to sit on to help relieve the pressure points. I tried memory foam and it is just not enough for me. I know it helps a lot of others, that might help some.

The longer I sit the greater the pain gets until I have to go lay down to just relieve the pressure on the nerves in my lower back.

You can find many different types and styles on the internet. Just one site I was looking at now is at : http://www.spinlife.com/critpath/match.cfm?categoryID=91&adv=googleads&tar=air%20cushion

I hope this can help.

God Bless
Capt AL

[sufernan]

Daniel was dx Feb. 2003 and died Dec. 2005 at age 44.

I do not think age is a factor for ALS, we can see what a different range of people here is affected by it regardless of age or gender.

I wish you all a good day! :lol:
Sunny

[beaner1]

Thanks Capt Al. I will go right after work tonight and look for a cushion and see if it helps him. He never complains, but I can tell by the look on his face that he's hurting. He doesn't like to take medicine of any kind, has always been that way so we'll see if the cushion helps - hope so, and anything is worth trying!
Beaner

[AngieH]

My husband was dx 2 weeks ago weeks after his 39th b-day

[liz]

AngieH - That's a huge bummer. I see you've got a bunch of kids too. That's about where my hubby and I are at except for who got the dx. - Liz

[sunnydays]

My husband was diagnosed in March of 2007. Symptoms started around Thanksgiving 2006 (if he is being totally honest with me). He had his rotator cuff operated on in March of 2006 and there were no problems at that time.

He has no military history but has been in the oilfield and welding business all his life. He is 49.