Taking stock

It’s a new year and time for a bit of stocktaking.  Where am I?  From the top:

Speech – almost unintelligible. Learning how to use eye gaze equipment

Swallowing – poor… I’m now having scrambled eggs for breakfast and a daily treat like crème brûlée, otherwise, it’s liquid feeds only via my PEG

Saliva management – a big problem. Taking Glycopyrronium Bromide and Amitriptyline. Recently had Botox injections into salivary glands and waiting for this to kick in

Arms – shoulders and elbows no longer work

Hands – wrists are becoming stiff and fingers are beginning to curl.  Can only type using right thumb on phone.  Can’t hold a pen or use a computer keyboard

Breathing – very shallow and I get quite short of breath when lying flat and when trying to talk. Using BiPap ventilator to good effect all night, every night. CO2 level well managed 

Legs – wobbly and heavy, it’s impossible to negotiate steps unaided.  Using power wheelchair outside the house

Overall – constant feeling of heavy fatigue. I’m happy though that I’m dealing with MND in a pragmatic and positive way. I’m not letting it get me down  

Weight – now 73kg (was 88kg when diagnosed in November 2020, 97kg before pneumonia in March 2020) 

Looking for a more objective way of defining my symptoms, a while ago I found the ALS Functional Rating Scale (Revised) online.  Having had a professional career involving the use of psychometrics, I am interested in trying to measure the unmeasurable.  I don’t know if my neurologists use the ALSFRS routinely (I’ll ask them), but NICE refers to it on their website.

Here’s a link to information about the questionnaire: https://en.wikipedia.org/wiki/ALS_Functional_Rating_Scale_-_Revised

Here’s the questionnaire itself: https://www.outcomes-umassmed.org/als/alsscale.aspx

It rates factors such as Speech, Swallowing, Handwriting, Stairs, and so on.  Had I rated myself when I had initial symptoms, but before I had a diagnosis of MND (February 2020) I reckon my score would have been about 44.  In July 2021 my score was 27.  Now it’s 15.  That’s a dramatic reduction in my functional abilities; significantly, it’s a steeper decline than the typical prognosis line would suggest.  I think I knew this, but it’s good in a way to have it confirmed.

I’ve written before about the problem of over salivation.  I’m now taking Amitriptyline and Glycopyrronium Bromide.  The latter has been very difficult to obtain due to local CCG policy, but my GP has managed to find a way around this just before my prescription supplied by the Peace Hospice ran out.  Glycopyrronium is making a noticeable difference.  In fact, my mouth is now extremely dry at night and I’m being woken up for the opposite reason!  However, for every problem there’s a solution and I’ve found that Xylimelts slow-release Long-Lasting Adhering Discs work really well and keep my mouth tasting fresh and feeling comfortable.

My trial of a Tobii Dynavox Windows tablet based eye gaze system has continued. Technically I’m competent in using it. Just a bit slow. However, I’m at a delicate stage in discussions with CASEE, the NHS communication equipment supplier in Eastern England.  The Windows device doesn’t give me anything other than a means of talking, it stands alone, and I’m not allowed to install any software (such as Word and Excel) to use with eye gaze.  For now, I can still type with one finger on my iPhone, and I’ve learned how to use the Assistive Touch settings to control my iPad with a mouse – allowing me to access and use any number of apps. But I won’t be able to do that forever, and I really need to have an iPad with eye gaze capability. Discussions continue. Maybe we’ll have an answer by the end of February.

Interesting fact for January:

This website was visited by people in 18 countries in the last 28 days. Thanks for dropping in!

9 thoughts on “Taking stock

  1. Well there’s one thing, Peter, your sense of timing is un-rivalled ! It’s only the 2nd February (2/2/22) and you’ve updated January already. You put the rest of us to shame with our own administrative chores. Well done & take care, my friend, Mike.

  2. Sorry to read about the worsening symptoms, but glad that you are still winning wherever possible. (Crème brûlée huh?!) Hoping all goes to plan with the eye gaze equipment. It would certainly be invaluable l if you could use it for things other than speaking. xx

  3. Well done Peter, you have done more in January than a lot of people achieve!
    Hope to see you soon.

  4. Peter you never fail to amaze me.
    I think about you and say a prayer for you and Sue often.
    Your determination and positivity remain outstanding.
    Love the blog too.

  5. I am in total awe of you Peter – you will never understand how important your blog has been for me any many others / you come across as kind, caring, brave and articulate! I will include you in my prayers along with my brother-in-law going living with MND.

    1. I’m humbled by your comment, Janet. If it helps you then it definitely helps me. Best wishes to you and your family.

  6. Hi sorry to read about your struggles. My dad has just been diagnosed with MND hence how I came across your page. Just wondering if you have ever considered stem cell therapy ?


    1. Sadly there is no cure for MND. I’m From what I’ve read, stem cell therapy could be an answer in the future, but it’s not available now in the UK. There aren’t even clinical trials to join because it’s very early days. There’s no certainty anyway that it would reverse the effects of MND. I’m very sorry that your dad has been diagnosed. Have you found the UK MNDA Forum? A great place for support and practical advice. Best wishes to your family.

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