Monthly Archives: December 2014

MS Life and Death

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.

Listeningto the Spirit World

I believe that anything is possible, and have an open mind, many people visit a spiritualist or medium and find comfort in doing so it’s not for everyone, but what my daughter told me made me cry mainly because Vicki is happy again.

I went to my daughter’s (Nikki) yesterday afternoon, not stopping for dinner just a cuppa and a chat, as I was going to my local council’s Scrutiny committee meeting later.

Over a cuppa she asked me if I had a problem with my arm, (this is the conversation) I said its my shoulder and asked why, she had been to see a medium that morning for a reading, and her mom told her, (Nikki asked why I hadn’t said anything), also that I was to do more and move on. Nikki said I’ve told him he does too much and to rest more, No he needs to get out more and enjoy his life because it’s precious, and she loves us all very much

Nikki is then asked why Christmas day special is for your mom and dad, because she is smiling, Nikki laughs and said it’s personal, I only told Nikki why a few days ago.

Your mom is stamping her feet and it’s as if she‘s kicking her leg, do you know why? Yes she had dreadful spasms due to MS. Your mom says she should have talked more about her MS when you were little, and she never wanted it to turn out the way it did, but she’d had enough and was tired of fighting, and felt it was her time.

Has your dad mentioned anything about dreams? Because your mom visits him often in his dreams, Nikki says yes quite a few. Your mom had difficulty speaking didn’t she, also she had  problems other than MS, she keeps pointing to her chest, she talks about our granddaughters and how proud she is, she has had her hair done and it’s her own natural colour (red).

A friend of your mom’s with initial G, is going through a bad patch at the moment, this worried my daughter and could only think of one person so she sent a txt explaining why, the reply was yes and she told Nikki.

That’s it apart from one of us will have a problem with a door on a tumble dryer.

I might pluck up the courage to visit a medium one day, till then I’m content  with my daughter telling me about her mom and knowing they’re both happy sharing this bond.

Sharing a life with MS

January 86 Vicki was offered a job working for her sister and brother-in-law, the following year after an accident I was declared unfit for work, and later became a taxi for my family. Drop the kids at school then take Vicki to work, back home and rest before the afternoon run.

After a couple of relapses in 1990 Vicki was now using a pair of elbow crutches for short walk and a manual wheelchair for distance, this helped both of us as I could use the chair for support, when out together.

Using crutches didn’t stop Vicki and her friend going to gigs to see bands, they went by train and I would pick them up, I always took a flask of hot water and slices of lemon for return journey. One time I took them to a village near Monmouth, where they stayed the weekend I returned home, next day I had a phone call Glyn Vicki’s friend had slipped and broke her ankle, unfortunately she was sober at the time.

Sunday I drove down and picked them up, they didn’t stop laughing on the way home, telling me all about it Glyn being taken to hospital in a stretch limo.

Everything changed January 1998, we had gone to Old Trafford to see Manchester United play Walsall in the FA cup, our son went by train with friends, and our daughter went on a supporters coach with friends. after the game for some reason I missed a turn and ended up on the M62, few minutes later we had a crash in the 3rd lane, while waiting for emergency services a St Johns nurse stopped and sat with Vicki.

I stood by the car as the Walsall coaches drove passed slowly, hoping Nikki wouldn’t recognise the car, police came and dragged our car onto the hard shoulder, AA arrived they had to carry and lift Vicki into the truck, then drove us to Warrington to wait for a driver back to Walsall. I phoned home and told our daughter what had happened and we were both ok, we arrived home after midnight.

Sunday morning I was in the kitchen when I heard a thump upstairs, Vicki had fallen and was crying, she couldn’t feel her legs, I picked her up but she could not stand, we tried many times result was the same. Next morning the doctor came, his knowledge of MS was very limited, he made an emergency appointment for her to see the neurologist.

Following week we were told it was unlikely Vicki would walk again, the day after Vicki’s sister phoned while I was out, Vicki explained that she couldn’t walk, the witch as she became known said it would be best if Vicki didn’t go back to work as she was always wobbling around the office and there was no room for a wheelchair. Sad to say Vicki and the witch never spoke, after Vicki had passed away I received a sympathy card from her, it simply said she thought that one day they would kiss and makeup, and would she be welcome at the funeral, short reply No.

So we became closer than ever, Vicki was quite independent and determined, she had a wonderful OT who filled in all the forms and in 2001 Vicki’s DFG was done, she could go up and down in her lift do whatever she wanted as Vicki often said because she could. We both became directors of a charity, Vicki company secretary, and we helped set up the first shopmobility service in Walsall.

January 2008 10 years after the accident Vicki was confined to bed, over the next 5 years Vicki had 3 really bad pressure wounds grade 4, lost use of her left arm, she learned to type with her right hand after 6 months lost use of right arm it became fixed at 45 degrees, and could only use her index finger and thumb. The rehab team were wonderful also the district nurses. 2012 due to her malnutrition, weight loss and difficulty swallowing she was admitted to hospital to have a peg tube inserted into her stomach, this was the turning point for Vicki as she was a strict vegetarian, and over the next 8 months she had numerous chest infections. Then 10.30 Saturday night 9th March she was rushed to A&E, on the Monday morning the Registrar told me they could do nothing for Vicki as her organs were failing.

I’m not sure if Vicki knew, I couldn’t tell her, it was hard enough telling the family and friends, Vicki passed away very peacefully 8.30pm March 25th with our children and elder sister around her bed.

Now every time Nikki drives past the hospital with her 4 year old daughter, Ellie-Mae says nanny was there but she lives in the sky now, don’t cry mommy.

Fate and Destiny

I have just watched a film called “Dear Santa”, it’s about a woman looking in a store window when a letter is blown in front of her, she grasps it and see’s it’s addressed to Santa and reads it.

To some this is called fate.

That is what happened to me December 1971, I had sent a Christmas card to Vicki early December and not had a reply, so arrangements were made for me to spend Christmas day with some friends.

A couple of days before Christmas I had a phone call from Vicki, she told me I had a missed word in the address, she explains that she was talking to a customer whose hair she was cutting, one thing led to another and by chance or fate the card was given to Vicki.

Vicki said she had asked her parents if I could stay, and they reluctantly agreed. I must admit I was over the moon, I booked a taxi for Christmas eve, after work.

Christmas eve I packed a few things in a bag and left the hotel where I worked at 1am Christmas morning and waited for the taxi in the office, it came and I arrived at Vicki’s home at 3am.

As I walked up the drive she stood in the doorway, I will always remember her red hair and with the light shining behind her I could see through her nightdress,  We had a truly wonderful time together, her parents were quite good about me being there, although I did hear her mother telling Vicki to stay out of my bedroom that night and many nights after.

Boxing day morning It was time to leave as I had to work, as they say in life nothing is easy, I had to walk from Lichfield to Burton on Trent about 13 miles was late back and in trouble, but it was worth it. After all it was fate and my destiny.

So the 25th is the most memorable date for me as it represents the start of our life 25/12/1971 and end 25/03/2013 of my life with Vicki.

I still have the Christmas card that started it all, as Vicki kept it safe.