chris fish
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  • I am doing fine. Miss my brother, we always talked aleast once a week. I am 325 miles from where he lived.
    What is (bulbar) part of this disease? Hope I,m not being too forward. Ijust want to learn more. David new this disease right to the min.. Is that your little one? Glad you are doing fine. God is with you at all times.
    Oh Chris, I am sorry about your brother. Hope you are taking care of yourself. ALS is a nightmare. My mother and aunt died of it 20 years ago. I was dxed on Aug 24 2012. I think I am no the bulbar fast track! But hanging in there. Great to have you as a friend.
    David worked right up to the last 3yrs useing only right foot AFO. Worked running heavey equipment and drove truck, until he could not put any weight on right leg for climbing in or on equipment. He had to give up work then. At that time still didnt know he had ALS. Dr gave him a cane to help walking. But David had too much pride. Refused to use a cane. He would used his left side and swing his right leg inorder to walk. This took so much effort he tired fast and got very angry at times. Dr's treated for drop foot, hernia and disc operations. Each operation, he healed but got symtoms got worse. Finally our dad convinced him to goto Dartmouth Hitchcock Med Center in New Hamshire. Thats where he was told to get his affairs in order. Sad sad day for all of us. It was just about 2yrs from then that he passed. more later ...Chris
    Hi Chris Fish,
    Thanks for your message....I'm sorry to hear that you recently lost your brother to ALS. Unfortunately I am no stranger to ALS, my grandfather had it for approx. 12-13 years. What are the odds that my husband would get the same disease? I was a kid when my grandfather came down with the disease and my mother does not really remember all the details as to when things happened/changed for him. Thank god my husband is still walking with AFO's and he's still working, but I don't know for how much longer since getting up stairs is really becoming a problem. Keep in touch and thanks again for your message.
    Jennifer
    New at this, but somewhat seasoned from dealing with my brother's ALS. He was freed from this harsh disease on 8/11/12. Picture was taken on 6/7/12 at his daughters graduation. That was his hope and dream to live long enough to see his daughter Eileen graduate from High School. Well David you got your wish, you are free now, have fun up there!
    The last couple of days have been awful..it's like my husband is losing or has lost his mind...I know it must be the opiates that are causing this, not the ALS..has barely eaten anything..what he says when he talks makes little sense..There are two nurses coming thursday and I will be anxious to see what they say...I am going to email you..would like to hear what your brother was feeling and thinking...A
    Well dont give up, dont be afraid to get on the phone to be sure thsy sure comeing. Sometimes you have to push alot to get what is needed. My brother did this and was successful in getting needed help. Although he waited too long before asking. But he was very strong willed about asking for help. Also was very modist. It got real difficult for our dad to move him, bathroom was very hard because David was failing almost daily. Not being able to do what he was used to doing on his own, along with all the pain caused ALOT of anger/hate ETC. Its hard to understand unless we go through what they are. David new ALS disease right down to the minunite, of what to expect. Well if you ever need to talk email me I'll send my phone #. I have alot to share about what I saw in David, and what he told me about it all. Anyway take care. Rember God is with you both. [email protected]
    thank you chris..it is now almost noon...my husband got up again at 5am for more pain pills and he is out of it again....which means when i try and feed him he will fall asleep with food in his mouth..i weighed him yesterday and he is 137..and he is over 6 ft tall...i just don't understand why he can't see that the narcotics are robbing him of any life at all....one of our home health care nurses has recommended hospice, so i am waiting to see if a hospice nurse will come out this week to visit with us.
    Hi. My brother David was dianosed 3yrs ago, after better than 3 yrs tring to find out what was going on. Started with his right foot would drop while walking, and or would twist his ankle. This would cause him to trip, and fall. Took him some time to figure out why he would trip and fall for no reason. Sorry to say he left us on 8/11/12. I miss him dearly.
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