Search results for query: *

  1. S

    A good laugh from my Respiratory Therapist

    It is often amusing to be asked some questions by the templates that have been created to judge progression. When you are sitting in your wheelchair and asked about walking and climbing stairs. LOL I understand the scientific aspect but perhaps at some point the scientific and patient side will...
  2. S

    Exhaustion

    Being somewhat really familiar with this disease - having 3 direct family members die in 3 years - I don’t remember if they had the extreme exhaustion after doing fairly light things like putting away clothes - in a wheelchair but can still stand for small amounts of time with support but seems...
  3. S

    Now it’s real

    I am seeing Dr Benetar in Miami in about a week and they are working to get me into the Biogen Toferson or the new trial of Dr Browns in Worcester - dependent on progression of symptoms as to if it will be of significant help still hopeful but guarded on the quality of life issues - if just...
  4. S

    Now it’s real

    After being a member of this forum for some time as a family member of SOD1 family with the loss of my dad, brother and sister all within 4 years about 12 years ago - as well as being tested positive for the SOD1 - A4V gene 10 years ago and a patient in the Miami trials for about 8 years - my...
  5. S

    Losses

    My heart aches for you all - my dad, brother and sister all had their journey within a 3 year period and as each suffered the losses you speak of it was so rapid that we weren’t even able to keep up. I am sure we all feel the same but there is a time coming you can look back and be at peace due...
  6. S

    My husband has fallen again

    Falling is one of the worst things -- a small wheelchair is helpful and really does make the transition to a wheelchair all the time is the best route. But as for trying to get them up-- use a sheet folded lengthwise in 4-- it should be placed under their bum and will be alot of help. Also most...
  7. S

    Looking for people with Experience in End Stage ALS

    In answer to Jim's question, yes have lost my Dad, my younger brother and my little sister all within 3 years, my baby sister died in Feb. Leaving a 12 yr old daughter who lives with my Mom. Also have been tested and I am a positive for SOD1--A4V-- no symptoms ! All of them died within 10 months...
  8. S

    Looking for people with Experience in End Stage ALS

    As nature takes it's natural course the need to eat and drink become almost non existant and also while the doctors and so called specialists so that the gastrointestinal tract is not affected by the ALS I tend to disbelieve that as it was present in my dad and to a lesser extent my sister. The...
  9. S

    Can somebody tell me?

    Thanks for the welcome, I have often wondered if a comment from me would be helpful to some but have also wondered if the truth (in my experiences) would be too much to handle for some. Often the comments of the doctors and nurses and other professionals were the same as yours as in knowing too...
  10. S

    Can somebody tell me?

    I have to agree with all of the above that mostly everyone except family and a very few friends just disappear. My Dad who had many friends and had 10 months of life after being diagnosed who was taken care of at home after a peg and a vent had very few visitors, they were perhaps shocked at...
Back
Top