MS Case Study -Mary has had MS for about 44 years. She slowly progressed to the
state where she could not hold a mug in her one good hand.
At that stage we heard of LDN (Low Dose Naltrexone) from a friend, David Taylor,
whose wife had started using LDN and had improved remarkably.
Our health professional reluctantly gave us a prescription and Mary started on LDN
about 3 years ago. There was an immediate improvement and she could even stretch
her arm out. The big improvement was that the pain she had been in for nearly 40
years disappeared completely. One good thing was that our health professional acknowledged
this.
Mary has deteriorated a little since then but is still able to hold a mug in her
hand again. All LDN is supposed to do is to stop the progression of MS and that it
has certainly done for Mary. Like all these things it appears not to work for everybody
but we have been lucky.
We had heard of Aimspro but it was too expensive. However, a short while ago we came
into a little money and decided to try the drug.
Stopping the progression was one thing but we wanted Mary to get better so she started
the treatment about 5 months ago. Our health professional was very helpful and actively
helped us this time. Mary had one infection after the other so it was a start/stop
business at first. (as is known the drug looks after any other infections before
it starts on MS)
After 24 injections we were beginning to feel we were wasting our time, then we went
to a party and somebody who hadn't seen Mary for about 10 months remarked on how
well she was. I looked at her "Aimspro" diary and there probably is a slight improvement.
In fact we visited our daughter in Istanbul in May and my daughter said she noticed
Mary was quite alert for the first 3 days and then appeared to tire more quickly.
Taking all that into account we have decided we need to lead a quieter life and to
press on with the treatment. It will probably take longer than for most those as
Mary is very badly disabled - she can still only really use her right hand but is
more alert and tires less quickly.
Mary’s African Journey.
Multiple Sclerosis & Our Visit to South Africa - My wife, Mary, has had MS for over
40 years and is extremely disabled. She can effectively only use her right hand
(and talk – she loves talking!!). About 7 months ago we were lucky in that Mary
was able to start on aimspro which we hoped would improve her condition. We had
been invited to my sister’s 70th birthday party to be held in Durban in South Africa,
but had decided not to go as the treatment did not seem to be doing enough for Mary
to enjoy the trip, or for me to be able to cope with the extra work that it would
entail.
We normally use a hoist all the time at home and it would mean me physically lifting
Mary while we were in South Africa. The journey did not worry us as we had been
abroad before and always found the airline and airport staff extremely helpful. We
had had problems with all sorts of infections, which had stopped aimspro from working,
but finally it seemed to kick in!
I normally inject every 4 days, so I decided to do so every 2 days for a week and
see if it helped – It did in two ways, Mary became much more alert and her grip strengthened
(enabling me to turn her in bed without a draw sheet) – this was the first sign of
any physical improvement, during the 7 months.
Now we had a decision to make – Do we go or do we stay? Mary suggested she could
go into respite and I should go by myself, but after some consideration, and with
great trepidation we decided to both go. After all it would probably be the last
time we visited South Africa (the place of my birth). Now it was action stations.
I decided not to hire a car (that sort of lifting would be far too much for my back),
and my sister in South Africa found an organisation who could take Mary to the resort
hotel sitting in her wheelchair strapped in the back of a bus.
We booked our flights and decided to travel Economy Plus as there was 7 inches more
leg-room and Mary has long legs – once an advantage but not now she is in a wheelchair!
It would have been lovely to go business class but the cost was prohibitive.
The minimum quantity of dry ice we could buy was a 10Kg box which seemed a bit over
the top. I talked to ‘Harvey’ a fellow member, to see if there was a way round this.
She suggested two injections on the day we left. I then spoke to others, well versed
in all aspects of the treatment, who thought it was a good idea, and said that an
injection the day before would be a good idea too. We decided to give one on each
of the two days before we left and two on the day of our departure (belt and braces!)
– And it worked!!
The flight to Johannesburg was 11 hours with a change of planes there and another
1 hour flight to Durban. Mary did not sleep a wink! I suggested Mary had a rest when
we got to Durban but Mary was having none of it. If we were going for a walk so
was she – this was day 2 and we slept badly that night in spite of not having slept
the night before.
Day 3 was a Sunday and we spent the time relaxing and catching up on family news
and eating and drinking.
Day 4 Mary was still on the go and not flagging at all – we sat round the pool chatting
and drinking coffee and beer – she normally has a rest after lunch and decided to
have one, but was then on the go again – we went to bed late and had the best night’s
sleep we have had for months (thank goodness!)
Day 5 the ‘girls’ went to have their hair done – it involved a car journey so Mary
gave it a miss and we went to a hotel we had stayed at years beforehand and a restaurant
we had enjoyed then. Mary was starting to get a bit tired so we went back and Mary
had her after lunch rest, and that night we went to bed early.
Day 6 Mary was tired but still very chatty – I had to force her to rest as she still
wanted to keep going at the same pace that she had been doing. Another early night
as the next day was the first of 2 parties.
In the evening of day 7 there was a party as all the family was there from South
Africa, England and Australia. Mary had a good afternoon rest but was getting quite
distressed as the evening wore on. I told my sister we’d have to go early, so we
were put next to the front door. Somebody had the bright idea of holding the door
ajar so a lovely cool breeze kept Mary’s temperature down. This calmed Mary down
and we stayed the course – in fact Mary brightened up a lot and enjoyed the whole
evening.
Day 8 was the big day. Mary had a good rest again and was ready for partying at
lunch time. Each time more those we knew arrived and the conversation and renewal
of old acquaintances kept Mary awake and alert, but she finally had to give in to
tiredness – But that was not the end as we all got together again in the evening
for drinks and a snack, and a final goodbye – a final, final goodbye to some – Mary
survived exceedingly well, but the effectiveness of the aimspro was definitely wearing
off now – another dose was needed but was 6000 miles and 2 days away.
Last day (Day 9) was packing and leaving day. We all met for a last coffee in the
hotel ‘meeting place’, ‘Tony’s’, and ended up with a second lot of ‘last goodbyes’,
just catching my Australian cousin before she drove off with her brother, who she
hadn’t seen for 30 years. Then everybody departed as their transport arrived. It
was sad to be leaving but it had been a wonderful week. I am certain it wouldn’t
have been possible without her treatment.
We had our bus journey, then a 1 hour flight, to Johannesburg, a break of about 6
hours in Johannesburg, an 11 hour flight to Heathrow and finally home after a 3 hour
car journey. Mary had no sleep again but was happy even if she was dog-tired. She
had her injection, and after a good sleep that night, was ready to face the world
again.
