140-full
Rachael
Sex: F
Data Quality: 2 stars
ALS: 7 yrs
Bi-Pap Wheelchair
Bulbar: severe
Arms: severe
Chest: moderate
Legs: severe
Rachael
Female, 43 years
Whitworth, Up in the Pennines, Lancs side
Primary Condition
ALS and 2 more
First symptom
Diagnosis
See more
  1. 140-thumb
    Rachael
    Sex: F
    Data Quality: 2 stars
    Bulbar: severe
    Arms: severe
    Chest: moderate
    Legs: severe
    I am: n
    I have:
    ALS

    Neutral

    added an InstantMe for Apr 8, 2013 Apr 27, 2013 4:34PM

    Managed to arrange some interviews for potential PA's starting next week. Heart sinks at the thought of more training.

    1 comment from other members. Only showing public users' comments. Sign up to see all comments!
    • 21803-thumb

      Can't imagine how you do it. Sometimes I'm not sure my guys can even remember their own names, I don't know how they'd manage if I wasn't able to instruct them.

      about 3 weeks ago
  2. 140-thumb
    Rachael
    Sex: F
    Data Quality: 2 stars
    Bulbar: severe
    Arms: severe
    Chest: moderate
    Legs: severe
    I am: n
    I have:
    ALS

    Very bad

    added an InstantMe for Mar 31, 2013 Apr 27, 2013 3:59PM

    The tale of the car park catastrophe. It was the new PA's first day and we were going to a local festival. We set off early to see friends and listen to a mates band. Keen to grab a coffee three of us went into town. It wasn't the best coffee but it was warm. It was with a smug comment about its diuretic qualities that my PA and I took our leave and went down a lane to a nearby drain. It was while we were busy that a car reversed into the back of my chair. The driver was clearly shaken and upset and I was too.

    1 comment from other members. Only showing public users' comments. Sign up to see all comments!
    • 21803-thumb

      How do you do this? I'd be content if I had ten per cent of the courage you show on a regular basis.

      about 3 weeks ago
  3. 140-thumb
    Rachael
    Sex: F
    Data Quality: 2 stars
    Bulbar: severe
    Arms: severe
    Chest: moderate
    Legs: severe
    I am: n
    I have:
    ALS

    Neutral

    added an InstantMe for Apr 9, 2013 Apr 27, 2013 4:34PM

    Visited Springhill Hospice.

  4. 140-thumb
    Rachael
    Sex: F
    Data Quality: 2 stars
    Bulbar: severe
    Arms: severe
    Chest: moderate
    Legs: severe
    I am: n
    I have:
    ALS

    Bad

    added an InstantMe for Apr 7, 2013 Apr 27, 2013 4:32PM

    New PA quit! It wasn't me! I'm sure the baptism of fire last week didn't help. Mixed up day to say the least. Neck and back still sore.

  5. 140-thumb
    Rachael
    Sex: F
    Data Quality: 2 stars
    Bulbar: severe
    Arms: severe
    Chest: moderate
    Legs: severe
    I am: n
    I have:
    ALS

    Neutral

    added an InstantMe for Apr 6, 2013 Apr 27, 2013 4:30PM

    My brother paid us a visit to collect my daughter and whisk her off to the house of the plague. The rest of the day has been spent resting.

  6. 140-thumb
    Rachael
    Sex: F
    Data Quality: 2 stars
    Bulbar: severe
    Arms: severe
    Chest: moderate
    Legs: severe
    I am: n
    I have:
    ALS

    Neutral

    added an InstantMe for Apr 5, 2013 Apr 27, 2013 4:28PM

    My family descended from Scotland, Holland and the south of England. They got a cottage in Glossop and promptly caught a dose of the plague so I dare not see them. It is a particularly virulent strain of "Both-Endium". Disappointed.

  7. 140-thumb
    Rachael
    Sex: F
    Data Quality: 2 stars
    Bulbar: severe
    Arms: severe
    Chest: moderate
    Legs: severe
    I am: n
    I have:
    ALS

    Neutral

    added an InstantMe for Apr 27, 2013 Apr 27, 2013 4:24PM

    Dentist visit was expensive but no trauma. Daughter has gone to London to visit my sister.

  8. 140-thumb
    Rachael
    Sex: F
    Data Quality: 2 stars
    Bulbar: severe
    Arms: severe
    Chest: moderate
    Legs: severe
    I am: n
    I have:
    ALS

    Neutral

    added an InstantMe for Apr 3, 2013 Apr 27, 2013 4:23PM

    Mainly spent the day chasing prescriptions. I managed to go for a drive in the afternoon before falling asleep at six.

  9. 140-thumb
    Rachael
    Sex: F
    Data Quality: 2 stars
    Bulbar: severe
    Arms: severe
    Chest: moderate
    Legs: severe
    I am: n
    I have:
    ALS

    Neutral

    added an InstantMe for Apr 2, 2013 Apr 27, 2013 4:02PM

    The phlebotomists visit was almost a joy compared to my last few visits to her clinic.

  10. 140-thumb
    Rachael
    Sex: F
    Data Quality: 2 stars
    Bulbar: severe
    Arms: severe
    Chest: moderate
    Legs: severe
    I am: n
    I have:
    ALS

    Bad

    added an InstantMe for Apr 1, 2013 Apr 27, 2013 4:00PM

    Took it easy after the trauma of yesterday. Neck and back still very sore.

  11. 140-thumb
    Rachael
    Sex: F
    Data Quality: 2 stars
    Bulbar: severe
    Arms: severe
    Chest: moderate
    Legs: severe
    I am: n
    I have:
    ALS
    star earnedstar earnedstar  notearned 2 stars
    lost a star Apr 19, 2013
  12. 140-thumb
    Rachael
    Sex: F
    Data Quality: 2 stars
    Bulbar: severe
    Arms: severe
    Chest: moderate
    Legs: severe
    I am: n
    I have:
    ALS

    Neutral

    added an InstantMe for Mar 25, 2013 Apr 06, 2013 5:31PM

    It has been a busy day today. I had a visit from my lung clinic specialists who brought a new cough assist machine and a travel bipap. They showed my PA's how to use them. Hopefully they should allow me more freedom when travelling due to their portability. We also discussed my drug's and whether the doctor thinks I should continue using Riluzole. After they had left I took Basil cat to the vets for his overnight stay.

    1 comment from other members. Only showing public users' comments. Sign up to see all comments!
    • 140-thumb
      Rachael
      Sex: F
      Data Quality: 2 stars
      Bulbar: severe
      Arms: severe
      Chest: moderate
      Legs: severe
      I am: n
      I have:
      ALS

      Neutral

      added an InstantMe for Mar 23, 2013 Mar 30, 2013 4:12PM

      It's still thick with snow and so I haven't been able to get out. I have therefore had a relaxing day in front of the television.

    • 140-thumb
      Rachael
      Sex: F
      Data Quality: 2 stars
      Bulbar: severe
      Arms: severe
      Chest: moderate
      Legs: severe
      I am: n
      I have:
      ALS

      Neutral

      added an InstantMe for Mar 30, 2013 Mar 30, 2013 4:04PM

      Had a quiet day with only a quick trip out to pick up some train tickets with my daughter. I've been suffering with mucous again and have needed my cough assist regularly.

    • 140-thumb
      Rachael
      Sex: F
      Data Quality: 2 stars
      Bulbar: severe
      Arms: severe
      Chest: moderate
      Legs: severe
      I am: n
      I have:
      ALS

      Good

      added an InstantMe for Mar 29, 2013 Mar 30, 2013 4:02PM

      Lovely day with my daughter and PA. Relaxed atmosphere but I was sparked out before the "Great British Menu" (TV programme.)

    • 140-thumb
      Rachael
      Sex: F
      Data Quality: 2 stars
      Bulbar: severe
      Arms: severe
      Chest: moderate
      Legs: severe
      I am: n
      I have:
      ALS

      Good

      added an InstantMe for Mar 28, 2013 Mar 30, 2013 4:00PM

      Pampered and preened to within an inch of my life!

    • 140-thumb
      Rachael
      Sex: F
      Data Quality: 2 stars
      Bulbar: severe
      Arms: severe
      Chest: moderate
      Legs: severe
      I am: n
      I have:
      ALS

      Bad

      added an InstantMe for Mar 27, 2013 Mar 30, 2013 3:59PM

      Exhausted after training our new PA. I fell asleep whilst my friend was reading. That was pretty much it for the day.

    • 140-thumb
      Rachael
      Sex: F
      Data Quality: 2 stars
      Bulbar: severe
      Arms: severe
      Chest: moderate
      Legs: severe
      I am: n
      I have:
      ALS

      Neutral

      added an InstantMe for Mar 26, 2013 Mar 30, 2013 3:56PM

      Orthotics rang to say my insoles were the wrong size so they cancelled the fitting. We were able to use the time to do a weekly shop before collecting Basil (King of smells!)

    • 140-thumb
      Rachael
      Sex: F
      Data Quality: 2 stars
      Bulbar: severe
      Arms: severe
      Chest: moderate
      Legs: severe
      I am: n
      I have:
      ALS

      Good

      added an InstantMe for Mar 24, 2013 Mar 30, 2013 3:54PM

      Pleased to have Wednesday's PA to myself after so much training. weather allowed us to get out for a quick trip around Hollingworth Lake. Then a mad dash to get warm before the blizzard.

    • 140-thumb
      Rachael
      Sex: F
      Data Quality: 2 stars
      Bulbar: severe
      Arms: severe
      Chest: moderate
      Legs: severe
      I am: n
      I have:
      ALS

      Neutral

      added an InstantMe for Mar 20, 2013 Mar 23, 2013 4:48PM

      Disappointed that my friend couldn't make it for our reading session. I also got a cancellation from my brother for tea. With my new free time I tried to visit an art gallery but on arrival we found them changing exhibitions which involved gloss paint. the air was thick and I couldn't breathe. A lovely drive through the hills to Hebdon Bridge through the hills but too cold to get out.

      3 comments from other members. Only showing public users' comments. Sign up to see all comments!
      • 21803-thumb

        Thanks to you I put some Chekhov on my Kindle. Never read him before. It passed another late night hour very nicely indeed. Great to see you get out so much, sorry to hear you couldn't go into the art gallery.

        about 2 months ago
      • 21803-thumb

        Sometimes, I think, its best if you don't get in to the exhibition!

        "
        The art of sleeping: Oscar winner Tilda Swinton sleeps in a glass box at New York museum for SEVEN hours a day for an exhibit

        The Academy Award-winning actress is sleeping in a fitted glass box at New York's Museum of Modern Art this month, fully exposing herself to the public during perhaps one of the most intimate human moments.

        http://www.dailymail.co.uk/news/article-2298237/Star-gazing-Tilda-Swinton-display-sleeping-glass-box-MoMA.html
        "

        Roch

        about 2 months ago
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