Progressing and very worried.

[Geo]

Al you have echoed what all of us are going through ,i also was a golfer ,live in a gated Golf and Boating 55+ Community where i watch my friends go golfing everyday and see them on the course when driving around and remmember the moments . when i first got this i could not even come close to this or i would break down ,i was also an accomplished water skier . Have to be helped into my friends boats when going with them ,but they dont mind . We now appreciate every minute we get on this Earth . Its just a Damn shame our Medical Community cant get their acts together . Makes one wander if they have a cure for only the very wealthy somewhere ? God Bless ,Geo

 

[Gracie]

Big Hug for Al.

You touch my heart Al and I will keep you in my prayers, thank you for the message as it clearly shows we are not alone in this.

God Bless,
Gracie

 

[olly]

gracie

i loved your poem, you and your husband have something special to treasure.
i was 31yrs and in my prime in tip top health being a athletic person. i loved running and was a competative runner in 800/1500 metres. i also competed in cross country running.
i did weight training also. i miss my old life and like capt al and geo have had to give up alot of things. it is very hard and you have to adjust every now and then.
i have started with bulbar problems, just when i was getting in a comfortable place with my pls.....wham, the bulbar symptoms started and knocked me for six.
we all totally understand,we have been there and sometimes still are.
i would not say your husband can ever get back to how he was but eventually god willing his progression will slow down a bit and you can both learn to adjust and live life more. i hope that is real soon.
god bless you both
caroline

 

[CindyM]

Gracie- your poem is very touching. thank you for sharing it.

And AL- it is OK to be down. I'm still in a bit of a snit myself over something that happened two days ago. I should probably move on and enjoy what is left of the weekend before the rains set in for the rest of the week, the weatherman says. But sometimes we feel discouraged and for very good reason and I think it is OK to wait for that emotion to pass.

 

[sral]

Caroline,

If you don't mind me asking, you mentioned you started with bulbar symptoms, is it just slower speech or slurred? My mom's symptoms started with bulbar which is awful because speech is so important.

By the way, sorry to hear you were hit with this disease so young ... just 31. It's interesting how often being very athletic and fit has been mentioned by people with motor neuron disease.

 

[olly]

hi sral

i did not start with bulbar symptoms it was my legs in the begining.
but about 18mths ago i noticed swollowing problems and this year have developed jaw problems,twitchings and spasms in the face/mouth. my speach is slurred when i am really tired and if my jaw is real bad i have problems articulating words.
geo started with bulbar symptoms.
yes i think its true that any neuro illness tends to strike people who are athletic,hyperactive or workaholics,i was all 3 lol:-D, maybe i should have been a couch potato/lazy sod lol:-D
take care
caroline:-D

 

[Geo]

Well i have now read that emotions as well as alcohol ,caffeine,nicotine etc can open the BBB Blood Brain Barrier for something to get through . I read an article a while back about Traumatic events and ALZ onset
so people who get excited easily or energy levels high could become vulnerable to this . That Link we all share .Lou Gehrig was an Athlete and very energetic . I would bet the Adrenal Glands have alot to do with it ? as Adrenaline gets the Neurons going ,(fight or flight theory ) Geo

 

[Gracie]

Geo I think you are so right on. The common denominator does appear to be good health and a very active person. My husband would work from morning to evening continously moving from going to work all day and then coming home and cutting the grass, fishing, or just projects around the house. I guess that is what makes this disease so hard to wrap yourself around and understand where it is coming from. My husbands mother was a very active person and she had severe dementia the last years of her life, she passed at the age of 85 but her last years were devastating in the decline. Makes you wonder doesn't it? Another sad part of this disease (pls/als) is the fact that physicians are so (undirectional) is the only word I come up with. Wait and see is a rediculous unresolved answer. I feel we have an excellant neuro, however, like everyone else we want answers and for heavens sake lets be able too if not cure the problem at least maybe stop or slow down the side effects. Our pain management doctor mentioned that our neuro would find this case (my husband) very interesting and would be a challange for the neuro, okay well then lets find a cure and research, research, research. My husband would be open to any research that would help find an answer and cure, waiting for the autopsy is not exceptable! Well........I feel some better, lol, sorry for the speech but sometimes the frustration and listening to the ticking clock is just hard to take. WE ALL WANT A CURE YESTERDAY!

Gracie

 

[sral]

I tend to agree too. My mom was a ball of fire all her life until this disease struck ... from talking a thousand miles a minute to walking like a speed walker

Hope they find a cure fast because I'm just like her

 

[MtPockets]

I use to be a on the track team and Pole Vaulted and high jumped. I had a full scholarship to college doing the same. I think I fell on my head from 13 feet in the air, way too many times.

The in 1989 I was knocked out when my head hit the ceiling in a small corporate jet that fell 1000 feet after the pilot took off in the prop wash of a 747 in Alaska.

Too many hits to the head makes AL a dull boy. :-D

Maybe that is why I am aby-normal.

 

[olly]

capt al

you may be aby-normal but we love you and would not want you any other way:-D
god bless
caroline