Caregivingly Yours,

Sometimes a frightening subject, but one that must...

2012-05-31T12:09:58.066-04:00

Sometimes a frightening subject, but one that must be known. Ironically, I have an ongoing draft on this subject. I add to it, mentally and physically, when I feel up to it. I guess I need to post it.
Thanks for all the info -- I'll print it out and put it with my "affairs in order" envelope.
Peace,
Muff

David Summers, a 37 year old MS patient from Murfr...

2012-05-31T05:49:26.387-04:00

David Summers, a 37 year old MS patient from Murfreesboro, Tennessee was a score of 8.0 on the Expanded Disability Status Scale (EDSS) when he had the Combination Liberation Therapy and Stem Cell Transplantation at CCSVI Clinic in March of 2012. Having been diagnosed in 1996 he had been in a wheelchair for the past decade without any sensation below the waist or use of his legs.
“It was late 2011 and I didn’t have much future to look forward to” says David. “My MS was getting more progressive and ravaging my body. I was diagnosed as an 8.0 on the EDSS scale; 1 being mild symptoms, 10 being death. There were many new lesions on my optic nerves, in my brain and on my spinal cord. My neurologist just told me: ‘be prepared to deteriorate’. I knew that he was telling me I didn’t have much time left, or at least not much with any quality.” David had previously sought out the liberation therapy in 2010 and had it done in a clinic in Duluth Georgia. “The Interventional Radiologist who did it told me that 50% of all MS patients who have the jugular vein-clearing therapy eventually restenose. I didn’t believe that would happen to me if I could get it done. But I have had MS for 16 years and apparently my veins were pretty twisted up”. Within 90 days, David’s veins had narrowed again, and worse, they were now blocked in even more places than before his procedure.
“I was so happy after my original procedure in 2010. I immediately lost all of the typical symptoms of MS. The cog fog disappeared, my speech came back, the vision in my right eye improved, I was able to regulate my body temperature again, and some of the sensation in my hands came back. But as much as I wanted to believe I felt something, there was nothing below the waist. I kind of knew that I wouldn’t get anything back in my legs. There was just way too much nerve damage now”. But any improvements felt by David lasted for just a few months.
After his relapse, David and his family were frustrated but undaunted. They had seen what opening the jugular veins could do to improve him. Because the veins had closed so quickly after his liberation procedure, they considered another clinic that advocated stent implants to keep the veins open, but upon doing their due diligence, they decided it was just too risky. They kept on searching the many CCSVI information sites that were cropping up on the Internet for something that offered more hope. Finding a suitable treatment, especially where there was no known cure for the disease was also a race against time. David was still suffering new attacks and was definitely deteriorating. Then David’s mother Janice began reading some patient blogs about a Clinic that was offering both the liberation therapy and adult autologous stem cell injections in a series of procedures during a hospital stay. “These patients were reporting a ‘full recovery’ of their neurodegenerative deficits” says Janice, “I hadn’t seen anything like that anywhere else”. She contacted CCSVI Clinic in late 2011 and after a succession of calls with the researchers and surgeons they decided in favor of the combination therapies.For more information please visit http://www.ccsviclinic.ca/?p=904

Thanks Betty for the heads up about the document n...

2012-05-31T00:45:10.793-04:00

Thanks Betty for the heads up about the document not coming through. (PDF, Google Doc., it's all Greek to me. I was trying something above my skill level.) I think for us it was the media hype over Terri Schiavo that got us talking about end of life decisions and paperwork, which frankly I am soooo glad we did before Patti's cognitive health dramatically declined.

not sure if there should have been something more ...

2012-05-31T00:15:30.927-04:00

not sure if there should have been something more with this Patrick, but I have to say unfortunately it is a fact of life that we are all born to die literally. I think we all need to have these discussions about end of life no matter what disease or illness we might be diagnosed with or contract or whatever. And I think the earliest the discussions the better. We are in 'perfect' health but we have had discussions, especially after the events that took place with his parents' passing (especially his mom's) I really think it so imperative to have discussions, plans and then follow through (sadly) when the time comes. Something I'm very passionate about, being realistic about the inevitable no matter how sad it is to deal with......

betty

Few people realize that an untreated neck or back ...

2012-05-30T07:55:47.345-04:00

Few people realize that an untreated neck or back injury from a car accident is likely to develop into arthritis in later years adding more pain and debilitation to the situation. The most common symptoms of a whiplash injury are pain or stiffness in the neck and shoulders, recurring headaches, numbness in the arms and fingers, irritability, back pain, and dizziness. Don’t wait to get checked out by a specialist in Personal Injury. greenville sc chiropractors

Interestingly I've since learned that Memorial...

2012-05-29T16:56:38.260-04:00

Interestingly I've since learned that Memorial Day graveyard picnics at veterans graves were once quite the norm for Memorial Day before we became a nation that cannot leave our video games, TV's, pools, parades, etc. Patti and I were the only living picnickers then again it was an OLD graveyard in an OLD farming community and the Memorial Day 'concert' in the cemetery kind of counted 'like' a picnic. :)

That's a beautiful way to spend this holiday! ...

2012-05-29T16:48:08.610-04:00

That's a beautiful way to spend this holiday! All of my ancestors came from the other side of the pond, but my lineage is well-documented.
Peace,
Muff

Oops, I refuse to be unknown...though...meant for ...

2012-05-29T13:37:18.903-04:00

Oops, I refuse to be unknown...though...meant for your post perhaps!

This is what I used to do too. Several vets of WWI...

2012-05-29T13:35:10.882-04:00

This is what I used to do too. Several vets of WWI and II and civil war, in my family.

Wow, Patrick, how neat to spend the day like this!...

2012-05-28T21:16:10.303-04:00

Wow, Patrick, how neat to spend the day like this! Humbling to be in the presence (so to speak) of someone who had served the country so many years ago!! Seemed like a nice touch too with the music and other celebrating going on!

except for the heat, it did seem like a great Memorial Day!

betty

While a certain amount of training is needed to me...

2012-05-24T06:28:35.750-04:00

While a certain amount of training is needed to meet job specifications, home medical service services must also have other natural features that enable them to compassionately perform job features, as per individual desires and the desires of their loved ones. This article investigates care provider features that are necessary for offering crucial services within homes and areas everywhere.
Home Care

Its quite disappointing how much our loves ones no...

2012-05-23T12:46:36.234-04:00

Its quite disappointing how much our loves ones not regarded well. But if you can put your love ones in the hands of Fountain Valley Care Giver, you highly appreciate them.

People really need caregiver support. It sad to kn...

2012-05-23T12:43:14.056-04:00

People really need caregiver support. It sad to know that there are many who are not taken well. If you like your patient to be in good hands, the http://www.phcsicare.com is the one.

Patrick, I love your sense of normal because as we...

2012-05-19T13:09:59.468-04:00

Patrick, I love your sense of normal because as we all know, normal is what you make it. The challenges of healing never overcame your determination to keep things normal. You are an amazing caregiver and an awesome dude. God Bless. Donna (MScaregiverdonna)

Hurray that you have healed. It almost seems mirac...

2012-05-18T22:52:00.544-04:00

Hurray that you have healed. It almost seems miraculously fast. And miracles are always welcomed.

WTG Patrick that you were able to return to "...

2012-05-18T21:28:31.644-04:00

WTG Patrick that you were able to return to "normal" in a relatively short period of time too!! hoping the weekend is a nice on for you guys!

betty

Sounds as if you're well-healed, Patrick! With...

2012-05-18T16:18:32.427-04:00

Sounds as if you're well-healed, Patrick! With MS, we're constantly redefining our 'new normal,' and your return may find the same changes.
Peace,
Muff

We create our own "normal" Sometimes re...

2012-05-18T15:19:56.383-04:00

We create our own "normal" Sometimes re-creating it every day as circumstances change. No two "normals" are the same I suspect.

So glad you have healed and can resume your "normal"!

So true.

2012-05-16T09:34:26.963-04:00

So true.

I agree with you that these facts are more than en...

2012-05-16T02:28:10.557-04:00

I agree with you that these facts are more than enough for better caregiver support at Federal, state, and even local levels. Although there are some funding available through community organizations to provide some respite care, they are only limited in some areas.

Well said, Rob. 'Unaffected on a personal leve...

2012-05-15T20:21:41.663-04:00

Well said, Rob. 'Unaffected on a personal level' does make for such a different perspective.

Sepkowitz speaks like a man unaffected by these is...

2012-05-15T16:23:14.119-04:00

Sepkowitz speaks like a man unaffected by these issues on a personal level, and would likely expect society to move heaven and Earth if his life ever was affected.

Hi I’m Heather! Please email me when you get a cha...

2012-05-14T15:16:46.330-04:00

Hi I’m Heather! Please email me when you get a chance! I have a question about your blog. HeatherVonsj(at)gmail(dot)com

Glad you're healing process is almost complete...

2012-05-14T11:55:04.308-04:00

Glad you're healing process is almost complete Patrick! Sometimes I think having each day as a do over can be somewhat of a gift. My brother greets each experience with such gusto because for him it is a first whether he's done it a million times or not. Something to be said for that!

Thank you all for the kind compliments and thought...

2012-05-13T23:44:26.258-04:00

Thank you all for the kind compliments and thoughts.

Caregivingly Yours, Patrick