ALS, new treatment

[Hank's mom]

Hey Jody -

Your spirit and love for your wife and life will get you thru this, of that I am sure. In the meanwhile any help you get from meds and treatments is a bonus - glad to here positive results about the whole darn mess of it all.

As always, be well,

Susie

[19Dragon52]

What's up lately, Jody?!    Do tell.  Always thinking about you.

Love & Support.....

[jody13]

Dragon, not much has changed, just plugging along. No real change, maybe a little better, but not any worse. We have one of our farms up for sale. The small one, 40 avcres, has a patch of woods and a live spring to boot. Mt wife doesn't want me farming any more any way. We are thinking ahead as to what we need to do if this takes a turn for the worse. We will probably move into our small little town on a one story home and have room for a wood shop?? The mind thing is the worse thing about any of these things including hep C. They don't know enough about ALS to even  give you the right meds.  But things are changing slowly. Some things I used to do for years are now not possible. I loved Leather work, but now I cant hold the tools in my left hand. So that is out. . Yopur ha

[jody13]

Dragon, I see the left hand got me again.   I'll try to finish it now.  We are thinking about buying a home that you move in on your foundation. , But where ? My son wants us to move down to Mo. We have too many friends around here for that  So we will probably move into or near town, to make it easier on Marta. We own a house in town and one at the edge of town , right on the highway into town. that would be my choice to start with in case we sold this place. This house was built in 1886, it has 2 stories, stairs , basment and lots of stairs. Which at this time are not a problem . My office has a bathroom  which could be turned into a bedroom . we also have a big den that could also be turned into a bedroom. There is over 2500 sq ft in this old house.  Jody

[jody13]

Well I go back Wedsday for another check up for the ALS. There is a new site that has ALS on it ant they are talking cure or recovery. It talks aboot any problem that ends in itis, That would include Hepititus? maybe. It seems there is a bacteria that is common with most of theses problems.  It is called the Marshall Protocal. Has any one heard of it? It is on the web. It has something to do with Vit D. I will look into it . The Meds they have me on feel like they are working on both the ALS and th"C". I have to see the hep doctor later this month. This bunch is out of California some place. A friend from Canada sent me the address on the web.  I'm not smart enough to get them moved here . Jody

[19Dragon52]

{{{{{Hi Jody}}}}}

I believe this is the website where folks can find all the info they want in regards to what you have posted.  They are doing so much that each individual  can easily find their topic of interest to click on.
http://www.marshalprotocal.com or it can be google, Marshal Protocal.  Each opens on the same page.

I am hopeful that your Wednesday appointment goes well for you and pleased to hear that the meds feel like they are working.  Blessings, Jody.

Love & Suppot.....

[Ella]

Jody - so happy to hear that things are going well, and the very best of luck for Wednesday.  The website sounds very interesting (thankyou Dragon Lady).

[jody13]

Wed. appointment. It was normal ,Not any change , other than a stiff neck I feel ok My doctor was in Germany so I didn't get to see him. ,in the next 4 weeks I will see him. I have to go back every 4 weeks. It is a double blind test. But any way it seems to be getting better. Of course they could have me on a placbo, who knows. I have it eaasy compared to what you get with that TX treatment, which I probably will never take, at least I hope not. Jody.

[jody13]

Dec 2, I went for my 12 week check up plus a Spinal tap which don't feel the best. I seem to be doing alright but did have some news that I didn't really expect. I thought I had 28 weeks to go, they told me today I have 72 weeks to go. I wasn't looking forward to that. So far there have been very few side effects. It is just time cosumimg. We have to drive to Lincoln every 4 weeks  which is 50 mikles spend most of the day getting tests. I cost me nothing but time and some gas. They pay all the doctor bills and the med expense. I guess we will stick it out as long as we can. I don't think I have any more spinal taps.  Jody

[19Dragon52]

(((Hi Jody!)))

Thanks for the update!  A Spinal Tap?!...OUCH!  That type of procedure and anything to do with using needles to go into Bone Marrow just give me the "heebie-jeebie's!"    I can usually handle most anything else.  You don't sound to worse for wear.    It's surly a blessing this isn't costing you but yeah, all the testing can be a drag especially for 72 weeks, eh?!  What an unpleasant surprise that 72 weeks was for you, yes?

Do you get your test results by mail or once a month when you go back for more tests?  Sending you and your wife lots of strength for those 50 mile road trips!  Is that one way?

Lots of Love.....

[jody13]

Dragoon, Yes it is 50 to the edge of Lincoln, then there are all of those stores that my honey has to stop at, whew! It is an all day trip. We leave at 7 in the morning and get back about 5 in the evening. I'm starting to get good reports on my book which is a good feeling.  Any way I got the chat room thing figured out. Missy did it. Jody13

[jody13]

On the 28th we go up for another testing and meds. I will let you know what shows up. they don't tell you any thing much. . I think I have been on Placibo the last month??? I do notice a difference in several things. Not to the better. Jody