Wednesday, January 14, 2009

Happy New Year -love to Steve and BR

It has beeen a nice couple of weeks. I have had a cold for ages but it held off till the last few days to become a stinker so we have had a good couple of weeks. We had a lovely time for ourselves and a few nice visitors.
The January freeze ended yesterday and now we have a lovely mild sunny spring like day.
My misrable Xmass greeting is now superceded by a determindly optimistic happy new year to the whole world.

Steve asked about seizures in his comment- Herrad has not suffered anything we have not been able to help with marijhauna. The only other neuro drug she uses is Baclofen and we seem to have kept the worst symptoms under control. She can have spasms when stressed (being moved clumsily or sudden tempature changes) but never as severe as BR seems to be hit by. MS is very personal and no two people exhibit all the same symptoms so I can not say that the weed would help everyone but I do believe it helps so much with Herrad that I doubt if she would have much quality of life without it.
I repeat that the neurologist at the OLVG (Hospital) recomended it as the best drug to use as did Proffesor Polman at the VU (free universtiy hospital).
This is no help to those who live in prohibition areas. It is ironic that law abiding Americans are banned from recieving the best availble treatment.
This carer situation is crap. I feel for anyone forced into decieding for others. Herrad and I have the correct things in place and I know her wants but at some point I will have to help put them into action. Nothing in previouis experience has prepared me for this.
I can only think of plattitudes to say: I aint got no wisdom to share.


steve said...

Hi Richie -

Based on our California experience, we know that pot is the most effective medicine BR has tried. Pain, nausea, appetite, anxiety, depression. The THC pills alone don't have the same effect. Neither stopped the seizure, though.

I'm a firm believer in telling medical professionals everything they need to know. The EMTs and ER personnel didn't even blink. We are very lucky to live in a place where compassion trumps political will. You and Herrad are even more lucky to live in a place where both are aligned.

A week later and no further seizures. Thanks for the well wishes.

Jaya said...

Hey Richie - You have exhibited vast wisdom so don't sell yourself short! Funny that somebody said that to me this week, (oh I know, my coach whom I am working on a signature story with and which I started in great gusto but since then my enthusiasm has wained..I accept this as graciously as I can). Sooner or later we are all going to leave this place, together or not is irrelevant. Think of it like this: Herrad going ahead cos she is ready, she can go and start the car and put the ignition on and get it warm..waiting for you..while you feed Marlene and Spike and water the plants etc and if backdoor is locked or not and you then, when all is good to go, throw the lights out and you meet Herrad in the car. Off the two of you go..just cos she is out of the door doesn't mean she won't wait for you..keep the faith..all you need is is ridiculously simple to point of sounding is just very very simple. Just be and laugh and love and be content and at peace! Sweetness and life, I send you my laughter!

Richie said...

So glad no seizures and compassionate medical staff- I guess they have read the same scientific papers we have and understand them better than us- shame politicians are usualy scientificaly (and moraly) ignorant!
We are being cheerful-even when it hurts- Polly Anna rules!

steve said...

I know it is really difficult to sit by helplessly as the one you love suffers. Lately, I've been less than patient as I try to attend to the many and multiplying tasks that won't seem to complete themselves.

BR lost control of his trunk muscles in December 2007 after a botched foley catheter insertion that lead to sepsis. Definitely one to avoid if you can.

That was really the turning point for us. When BR became wheelchair bound, I purchased a book on caregiving. After he lost the ability to sit up:

* I arranged for a hospital bed and hoyer lift for the home

* I arranged for a paid caregiver to help out during the day so that I could continue to work

* I became incredibly depressed to the point that I had a hard time getting out of bed

The depression lead me to seek counseling (at BR's request). Best thing I ever did. It helped me realize that the relationship I had with BR was over, and we could either build a new relationship, or go our separate ways.

Nobody likes to see a long term relationship end, especially when you don't have a say in it. But there was something liberating about the clean slate. BR and I started dating again and communicating more.

And Pollyanna can kiss my ass. :-)