handinhand

gooday to you handinhanfd, i hope it quit snowing there for you so you can make it to denver.when i hear that so many of us have problems with speaking i come up with some weird thoughts.i have a sence of humer and make fun of my speech at times.but what i thought was could you imagine a bunch of us together say trying to order something say for lunch .the waiter would probably for sure think we were at the bar ,i dont know it would be different wouldnt it hang in thetre you and your family jeffp

hi handin hand i have the same problems at times with swallowing my food if i sit uo right it seems to not be so bad .i understand the speech part very much the als seems to effected that area worse i walk aroung talking like im hammered or buzzed or something.when i see someone i knoe i tell them right when i see them i have als thats why i talk this way i live in sort of a small town and taught relapse prevention for alcholics and drug addicts so i deffinately dont want them to think all i was telling them was a bunch of garbage look at him hes a drunk lol hang in there jeffp

i feel stupid i sent your message to myself lol
anyway i was wondering how your als has been progressing .also do you take herbs or vitamins that seem to help. i see your into native american stuff so am i my grandparents were cora tribe out of tennessee. do you use sage for cleansing or do you have any recomdations you could share with me thanks jeffp

hi Kelly, thank you for your response..You are right he is very young to be going through this. You are so sweet when talking about him.This is so hard on all of us.He is blessed to have you by his side. Knowing that you love him and care so much for what he is going through is the very best thing anyone could ask for. I worry more about Richard[husband] and my children than i ever do about myself.I have told him that I would rather be in my shoes than his. I really mean that ..I could not bear it and I would never be as strong as he is. I just hope and pray that I can make this as easy on him as possible.Take care... Hugs, linda

Please know..I am not ignoring your question. Just trying to put an accurate time line together. Remember everyones progression is different... my hubby is 42...so young! He has been diagnosed with ALS for 3 years. He is total care at this point. He can still weight bear for transfers, uses an eyegaze for communication with friends. I can still understand about 30 percent of what he is saying. Mostly one word answers at this point. What I do know...is I am thankful for every moment I have with Andrew. Darn..this is a crazy journey. I am not sure if I even answered your question...it is late..will write back more another time. Sweet Dreams. Stay Strong. Kelly

Hi Linda, thank you for checking in... my dad had a very rough weekend and is now pretty knocked out on pain medication but at least he is resting comfortably. How are things for you? I hope you are enjoying your day... xoxoxo

hello handinhand i hope today is better for you then getting hammered with snow just thought of saying hi and have a good day

good day handinhand thank you for replying i have them same moments just sitting and wondering what is next and what life am i going to have.i am 47 years old about 3 years ago a was getting atwitch in my left shoulder i thiught it was just from working out .it stayed slow as a twitch for about two years then i noticed it working its way down my arm and within a month or two it moved to my other harm .then i started noticing my speech was getting bad like slurring all the time .my wife had me go to a nuerologist they ran blood test and a emg and dx me with sporadic als. sthat was aug 09 so i dont really know how long i may have had it .i try to stay positive and be greatful each day im walking and able to speek some and use my arms stay positive handinhand

hi handinhand ti me it sounds like you have such a good outlook on life and als i was dx aug09 with als and try to focus on what i still have not what i have lost im greatful each day the lord wakes me up to see what today is going to bring so far als has effected my speech worse in the mornings other than that i can still walk move my upperbody ok and my legs feel just a little weaker keep up the positivness you carry it may just brighten up someone elses day jeffp

very insightful, aren't I? or i guess they are just both really talented. i checked out the website...amazing work! those pictures make me want to live--insert a tiny bit of self pity here--ok, enough of that...on with the day

linda, everytime i see your avatar picture, i think it is an ad from a catalog.....she looks like she is modeling that outfit...too cute

thanx, i have taken my dx as a chance to do what i have always wanted to do and thats get published, i was always to busy with work and life to really get my writings in order but now im going full swing with it cuz its all i got. check out my poems in my blogs and let me know what you think

Linda- your granddaughter is adorable; love it as your avatar!

Hi Linda, how are things your direction?

Hi Linda, i am limb onset, left hand..started in march this year, first neuro appointment may, als suspected right away, official dx july 28...right hand is getting slower and my voice is sometimes slurred and gets hoarse, but is pretty good most of the time. at my first als clinic visit in sept. my fvc was great 115%, but my mip(max inspiratory pressure) sucked and qualified me for bipap...i didn't jump at that i don't go back until January, but my rt said to call if i notice changes doing activities...we'll see. take care, jen