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  • Hi Jennifer I came across your post regarding your husband having a heart attack, moving and ALS that is exactly our story right now! My husband was diagnosed in January, we moved into a new home about 3 weeks ago and last Wednesday my husband (Jim) had a heart attack. They basically said the risk of unblocking the artery greatly outweighs the benefits given the ALS. They sent him home today. His BP is 80 over 56 he has lost 10 lbs since April. I am so scared .... He has been sleeping non stop and his breathing is very rough. Do you have any suggestions? Thank you Debbie
    Hi! Glad to see that hubby has been able to continue to work. Hope you are doing OK. Jackie has been traveling a lot for work so hasn't been to any support group meetings. She did participate in the Walk over the Hudson. We're looking forward to a visit from her this week.
    Deb
    I made Davids AFO's longer so to keep his toes from curling down. Was very uncomfortable for him cause he could not straighten his toes on his own. He was so happy it helped his feet feel less heavy. Even better when a sheet or blanket was over his feet. Those made his toes curl even more. If I can be of help let me know. God is with you all. chris
    Hi Jennifer, how are this going?? I sure miss David.. Wish we could be kids again and do all we did together and so much more.
    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
    Hope things are going well for you guys and that hubby is on board. We're looking forward to Jackie's arrival on Friday for a weekend visit. We're celebrating grad daughter's 4th birthday on Sat with a Princess Party. It will be so nice to have all 3 of my girls together for Mothers's Day. I hope you have a good one !
    Deb
    Good morning! Good to meet you last night! Our audio quality wasn't very good so I missed out on a lot of the conversations. I hope you had a good experience and made some local contacts. So sorry you're doing this alone right now. Let me know what I can do to help.
    Deb
    Lastly, I have been told that the longer it takes to get a diagnosis, the slower the progression. Praying that you will get a better diagnosis that gives you the most time.
    Hugs to you and your family, praying that you feel God's presence during all of this. ♥Glimmer
    Thank you for checking in and keeping us in your thoughts and prayers. I know how hard it is to get through day to day during this difficult time. I wanted to tell you some things that have helped me this far, not trying to preach but I have found comfort: live today in the moment, you have to plan for the future yes, but today and how you embrace it is what really matters most. Pay attention to the feelings you have, don't try to fight them, let them come...once they wash over you, you will feel better. I know these thoughts will come, but try not to focus too long on the end, you will have that time to deal with when it comes. Keep Hope, even if the darkest scariest fear becomes true, there is always hope that something good will come, a cure, slow progression, friends rallying around you, bringing you and your husband closer than you have ever been and knowing that is real, that is love.
    Jennifer, thank you so much for all the kind words. Donna is going to Mayo Clinic at the end of the month for extensive evaluation 5-7 days they said she would be there. She is depressed ofcourse, but still gets out to work everyday. She is a PT and works with disabled school children. How ironic eh?? She is exhausted by the end of the day that is for sure. We know this will be her last school year because she is very unstable on her feet and is afraid of dropping or hurting a child. I know she is mentally a wreck! She puts up a good front, but when we are together, I try to focus on other things and get her laughing or busy doing stuff..like shopping and eating..our favorite activities. LOL.. I can't imagine how hard this is for you Jen, being the wife, mother and daily caregiver for your husband and family too. We will keep those prayers coming and know that God has plans that we can't understand but HE does. Mary
    Keeping you and your husband in my thoughts. Hoping your visit in March brings you better news. We go back on March 13th for the second EMG and Nerve testing.
    Hi there, my best friend was finally diagnosed and told today that she has ALS..we are all so sad. Her symptons are similar to your husbands, mostly lower extremity, but she does fall and trip often. Her AFO leg brace helps with the drop foot., Se did not have a muscle biopsy but sure went thru the gamut of other tests. Univ. of MI Neurology is where she finally went for diagonosis. Yes, the waiting has been anguishing and the DX devastating. We are all so sad. I hope and pray that your husband has better results.. Mary
    Hi All, I'm new to this group. My husband started complaining of muscles hurting in his legs last year, then he got "drop foot" on the right side......Long story short, the right drop foot is unexplained, he has had MRI's, EMG's, Spinal tap, blood work and more blood work, cat scans with dye and drinking gross stuff. His foot is NOT numb and he does NOT trip or fall, but, his balance is not so great. They also see something in his arms with the EMG, although he does not "feel" anything or any effect yet? His upper body strength is not affected nor is is head/throat or speech.

    To no avail, we still don't have a diagnosis after almost a year. The next test is a muscle/nerve biopsy. I am so terrified, words cannot even begin to explain.

    Has anyone had a muscle/nerve biopsy? Can this test define ALS or PLS?

    God bless!
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