Multiple Sclerosis is a Form of Dementia
Professor Giavannoni has put the cat amongst the pigeons by saying that MS is a form of dementia.
The definition of dementia is
Dementia is a loss of mental ability severe enough to interfere with normal activities of daily living, lasting more than six months, not present since birth, and not associated with a loss or alteration of consciousness.
Or to put it more simply – the brain cells are being irrepairably damaged and as a result the cognitive functions such as memory, reasoning, planning, and behaviour are becoming impaired – doesn’t this this sound like progressive multiple sclerosis? I know there is loss of short term and that is not just because I’m getting older.
He goes on to say that a huge number of MS sufferers with aggressive MS are young people.
The current figures show
- 50% of MS sufferers are unemployed within 10 years of disease onset
- 50% of MS sufferers are unemployed at an EDSS of 3.5; a level of disability that is not associated with physically disability
Those figures are frightening. I stopped work, more to the point, no one would hire me. My level of disability on the EDSS scale was between 5.0 and 5.5. Was I lucky, well who knows?
MS is measured on the EDSS scale. 0 is normal and 10 is dead. Assume we have 8 functional systems as listed below
- Pyramidal (ability to walk)
- Cerebellar (coordination)
- Brain stem (speech and swallowing)
- Sensory (touch and pain)
- Bowel and bladder functions
- Other (includes any other neurological findings due to MS)
The definition of 3.5 in EDSS is ‘The person is fully ambulatory, but has moderate disability in one FS and mild disability in one or two FS; or moderate disability in two FS; or mild disability in five FS.’
- Branding MS as dementia will make people more aware of the irreversible damage that MS causes. If there is treatment available that can allow patients to retain their quality of life then it should be made available. We can see the damage that Alzheimer’s disease causes.
- The counter argument. Is this not making a complicated issue even more complicated? Also by branding MS as dementia there is the possibility that employers will take quiet pre-emptive action to prevent problems later.
- I agree with ‘branding MS as dementia’ argument. Only too frequently MS will develop into a serious neurological condition. By not treating it now in the hope of saving money is a false economy. Treating the condition reduces frequency of relapses. My belief is that the country will earn more in tax by keeping that person working and paying for their treatment costs than paying benefits later on.
I hope this will now spur you on to read the article and comments in the blog that is for people with MS and their families OK some of the articles and comments are both academic and dry but none the less much of it is very readable and quite easy to understand.
In case you are wondering my EDSS score now is just above 6.0 and definitely less than 6.5. I thought long and hard before putting this information up on my website. OK it has not originated from me, in fact very little does, but I can see dementia creeping up on me, I fail on 5 elements listed on the FS scale but I am not ga-ga.
This is very thought provoking, what do you think? Please write and let me know.
EDSS Scale This is a comprehensive description
THe EDSS scale has many faults but it is considered the acceptable way to measure progression of MS. Personally my EDSS score does not bother me but it is used by medical companies to determine if you are suitable for a drug trial.
What would happen if you didn’t concern yourself with EDSS score or any MS facts? And you just lived life?
Be well my friend!