About trying to live with ms and discovering that suddenly most places are inaccessible and that life as a handicapped person is very different.
Wednesday, May 06, 2009
Another grey day today, Marleen, the brown and white Jack Russell terrier is not happy with the weather so much so she will not look out of the window.
Perhaps she will now as the sun has started to come out and the clouds are getting thinner.
Definitely a promise of a pleasant day waiting to happen, hope it does as yesterday was very gloomy looking.
Been told about people having stem cells removed to create new ones and the person being given chemotherapy for 7 to 1 days to kill their immune system.
Then given the stem cells back which depending on which type of MS it is they have remarkable improvements.
Read the information with horror at the idea of no immune system for 7 to 11 days too much could happen that could be life threatening in that time.
Abit too scary for me mind you what is happening now is scary too yet not as scary as making the decision to take this gamble.
All I can do is my bit in keeping myself as fit as I can so that means 30 mins of arm and back exercises in the morning and 30 minutes of leg exercises with the motomed after my shower at the end of the afternoon.
Richie gives me about 20 minutes leg exercises and leg massage after the arm exercises in the morning.
The exercises are real important for blood circulation as well as maintaining, and a small amount of muscle building,
It is good for raising my heartbeat as if I were having a good cardio vascular workout.
After the exercises this morning I took the morning dose of three Baclofen pills followed by thc and food supplement drink.
Breakfast was a currant roll with cheese and a kwiwi, orange, pear and banana smoothie.
Was yummy as was the cup of lentil soup Richie made for me for 13 pm which also was very tasty.
Abit tense right now as the doctor is coming by with the nurse, they will be here in a few minutes.
Eek!
They came had a look and were satisfied progress was being made, Ton took a photo for his file.
It took about 15 minutes and was done and dusted before I could think too much about it all.
Big relief for us both that progress is still being made.
Can finally really relax today.
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13 comments:
Hi Herrad! I'm glad you can relax now! That's great that you're making progress, although I'm not sure what that really means? I feel so ignorant about MS.
I love the photos of the ducks!
Hi Rain,
I am in bed since August 21 because of a large pressue sore ie large open wound on my bum.
The wheelchair was not the right size so had no support.
And tilted to the right which created too much pressure and caused a deep open sore.
It is healing slowly.
Love,
Herrad
Oh geez, I'm sorry to hear that. Did they give you some kind of timeframe for when you'll be able to use a wheelchair again?
Hi Herrad,
I know that the HiCy protocol sounds scary. HiCy is high doses of cyclophosphamide which does wipe out the immune system. They are doing this at Johns Hopkins in Baltimore. Here is a feature article about it - http://www.hopkinsmedicine.org/hmn/W08/feature1.cfm
I'd almost be tempted to do this myself, especially since they hypothesize that it can reverse many different autoimmune diseases. But I'm certainly not doing it right now.
Hope you are doing well and that the weather brightens up for you.
I'm glad you're having a better day.
You have time to think of any procedure.
Don't worry.
The photos are amazing.
Love
Ana
herrad, the flowers are gogeous! and marleen looks quite happy & relaxed! come to my blog, i have a picture of tif's dog on there!
glad tings improving herrad,even if just a bit take care,love mort xx
I am impressed with your progress and state of mind as well. You are doing the best thing you can do right now for your MS....eating right, getting exercise when you can, and of course TLC from Ritchie plays a big part I'm sure.
S.
Greeting Herrad - just stopping by to say hello. Glad that your pressure sore is improving. Will you have a new wheelchair for better support when you are able to be out of bed?
- Cranky
Hi Rain,
We hope end of May I can start sitting again.
Hi Lisa,
It dos sound scary but if they have had good results it is worth considering.
The weather slightly improved.
Hi Ana,
Glad you like the photos.
Love,
Herrad
Hi Libby,
Thanks for coming by.
Lily is a lovely dog looks real fun.
Hi Mort,
Thanks for coming by really appreciate seeing a comment from you.
Hi Shauna,
Thanks for your encouraging words.
All the support has really helped me so very much.
Hi Cranky,
My wheelchair will be adapted, a new back rest will be made and I hope to get an air pressure cushion one that runs off a battery where the pressure changes all the time like my mattress.
Love,
Herrad
Marleen looks like she's pouting, they way she's laying in the picture!
I did the chemotherapy with Novantrone, that was enough for me. Glad your news was good.
Andy
We've had many days of rain, but our sunny pleasant day did come this afternoon.
Smoothies & lentil soup are two things I enjoy also. A friend of mine always serves kiwi with whipped cream cheese & it is quite good.
It is wonderful that you get the exercise you do, and that R is so good in the massage department ;-).
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