Recent content by Jennifer51

  1. J

    Hello all. I was just coming on to tell everyone that I wont be on any more. I am on oxygen now...

    Hello all. I was just coming on to tell everyone that I wont be on any more. I am on oxygen now and everything is such an effort now.I dont think I have long left. I dont want to carry on like this now. Thanks for all the friends I have made. jennifer
  2. J

    Don't Focus on Dying!

    Whilst the sentment is very good and I agreed with it during my first year of living with MND, as has been said before, everybody is different. I mean that, as far as symptoms is concerned. I had a positive attitude for my first year, then suddenly things went downhill. Now my days and nights...
  3. J

    Drinking through a straw

    In the UK you can get a one way straw, supplied by SLP Once you suck up, it will not drain back again. I did try one, but found it too hard to suck anyway....nil by mouth now
  4. J

    Hyper Salivation

    I take it you are referring to my pain Jennifer51. I had no pain for the first year, then my left arm started to go. The pain was dreadful, as if someoneone had stabbed my arm and was twiting the knife, if I moved my arm or anyone tried to move it. That has now stopped but I get pain in my hip...
  5. J

    Hyper Salivation

    welcome....I am in London. Have you found build-uk though I think this forum is best. Salivation..I have tried patches, eye drops..search that one...they taste disgusting, and I tried something else put in my peg...sorry dont know the name, husband is my nurse and knows all the names...
  6. J

    Brits on Rilutec WARNING

    just received notification from build-uk als/mnd uk forum...that all sorts of official bodies are getting involved with the shortages. they had a meeting on Aug 20th ..mnd assoc, dept of health, representative bodies of pharmacists. They are taking it very seriously.
  7. J

    als and diaphragmatic pacemakers

    like Al said, do a search, several people including myself have written about it. In the UK it is being trialed with very promising results.
  8. J

    Any new research

    I am similar to your sister, diagnosed 18 months ago and hoping for a cure. There is tons of research going on worldwide. Often we are unaware of it. The trouble is, it takes SO long to get anywhere. Oh how I wish they would hurry up.
  9. J

    No I am not on patientslikeme..and what is the KNS trial, I have missed that one. My neuro is...

    No I am not on patientslikeme..and what is the KNS trial, I have missed that one. My neuro is well up for me to try anything. He is doing research, slightly linked to Dr Turner in Oxford (biomarkers). but my neuro is trying to find a TEST for mnd. It only involves blood tests, me and my...
  10. J

    Using an EU Blue Badge in the USA

    That is really interesting. We have had 3 homes in Florida for 20 years now. Only had need to use the Blue Badge this past 18 months. We have our own vehicle there and have always used the UK badge. We have not had any problems. However, word of advice if you want to get a temporary florida...
  11. J

    PBP Diagnosis Yesterday

    Sorry you had to join this dreadfull club. I was also told the 6 months -3 years timeframe.. Dont accept the 6 months. My first year was not too bad, but the last 8 months have been bad, Do as much as you can NOW. Please voice bank now while you have the chance. Download, free, Etriloquist...
  12. J

    Was very interested to see your details..Orlando Fl.. Despite living in London, we have had 3...

    Was very interested to see your details..Orlando Fl.. Despite living in London, we have had 3 homes in Kissimmee 34746 for 20 years..across the road from the Lake Buena Vista Outlet Mall..in Indian Wells. Juat thought I would say Hi. Jennie
  13. J

    Air Travel Advice Needed

    Look at travel jon. It is a folding bottle (like a plastic bag, folds very very small) It has chystals in, so when you wet it, it turns to gel and wont spill. Pretty discreet for males, if you were wearing jogging bottoms. Look on drugstore, com they were the cheapest I found. Bought...
  14. J

    New breathing device from Mayo Clinic

    Thanks Chrity, I have heard about this before and researched it and have indeed asked for it in the UK, but I have not seen the video before. As far as the UK is concerned, I was told by my neuro, who is very open to new stuff, that it is in trial mode at the moment, with 3 or 4 people having...
  15. J

    Brits on Rilutec WARNING

    In the UK it is definately money related as the news report and my pharmacist confirmed it is across a range of drugs. My pharmacist was calling 5 people yesterday to apologise and explain. I am the only one he supplies with Rilutec.
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