After the news of the death of Debbie Purdy yesterday 29th who died on 23rd December, I imagine that it has alarmed people who have or just been diagnosed with MS, for most with MS there are (DMD’s) drugs that can and do help RRMS, but can come with side effects.
What about the people with SPMS or PPMS? Drug trials are ongoing.
Clinicians and people say MS doesn’t kill, No but it doesn’t help, on Vicki’s death certificate it states, cause of death 1 (a) Type 2 Respiratory Failure, (b) Pneumonia (c) Multiple Sclerosis, 11 Impaired Swallow so for me the word progressive says it all, your born you die, it’s what happens in between that matters, some call it fate.
So as Vicki would say take life with a pinch of salt, enjoy your life, even with MS anything is possible.
Early this year I met 2 women who were diagnosed with MS in1974 and 1975, both were using a wheeled walker to get about, both still fairly mobile.
For those who don’t know, my late wife Vicki was told on her 30th birthday she had MS June 1985, then we were not told much about it or how it would affect our lives, other than it was suggested not having any more children.
December 28th 07 Vicki was confined to bed with a grade 4 open pressure wound 6cm x 7cm x 3cm, we were told it would heal in about 6 months it took 22 months, Vicki could not sit up and by this time we were told her MS was now chronic progressive. Her neck muscles had become weak and couldn’t support her head, in 2010 another pressure wound on her spine, 2011 pressure wound on original site, with new treatments both healed in less than 12 months, with the help of the district nurses I became quite proficient in pressure wound care.
Unfortunately time in bed had taken its toll on Vicki’s health, with UTI’s chest infections, and losing use of both arms and hands, right arm fixed at 45 degrees and left leg at 40 degrees, Vicki had Botox injections in groin, thigh and calf muscles, also in hamstrings both legs, every 6 months, the nurses often asked is any Botox left over. Constant visits from GP, physio, social worker, speech therapist Dietician and others, Vicki’s weight 6 stone, caused concern September the nurse manager came to do a health check, the result when I read it to her was not what I expected, she broke down crying, saying that’s not me I’m not like the kids. The report stated that Vicki was severely malnourished. June 26th 2012 what a game we had, she spent 5 hours lying on a trolley in A&E as no bed was available, then put on a bed 1 hour later Vicki was admitted to a ward and spent our anniversary in hospital on a nasal food drip, July 4th had a peg feed tube inserted into her stomach, I received training on the maintenance of the system and how it worked, and Vicki was discharged 2 days later.
On the news a man with locked in syndrome was asking for the right to die with help and dignity, Vicki and I talked about it at length, Vicki said it was not for her, and subject was closed.
2013 January another chest infection, March 9th Vicki was rushed to A&E spent 6 hours in Resus, intubated and taken for a CT scan then to ITC, where she spent 24 hours, the next day in HDU I was told they couldn’t do anything more for her (as in the Registrars words the MS had done too much damage) clinically there is nothing they could do. Vicki contracted pneumonia while in hospital and despite the efforts of the nurse’s doctors and physio, Vicki passed away very peacefully March 25th.
I’ve read Professor Gavin Giovannoni’s blogger, I agree with most of it, except the bit, “it only clips about 8-10 years off the average life span”.
But each to their own. My daughter was told via a medium that Vicki felt she had done enough and it was her time.