Thank you for posting that link. I have been trying to follow her progress and feel a bond with her like a Sister being just over the Ohio/Pennsylvania border and around the same age! Hope someone is telling her that it takes time and she will get better slowly and not to over do it! Her rest is very important!

What a great piece, thank you for posting that Aimee.

Even Kass is in there! I wonder why they are keeping her ‘progress’ so close to their chests. I just dont see how it could be for security reasons, I think it has something to do with re-election in a few months time.

Has anyone heard any updates? Don’t forget that GBS is so different for everyone that it is hard to guess how much the family and doctors are releasing because of just the lack of knowing how things will turn out. I hope she is making progress in the right direction.

My opinion:

Because this is a person in a political position the full impact of GBS is being downplayed (my opinion). Certainly everyone wishes the Ohio State Auditor, and Attorney General candidate a full recovery with record speed. However, statistics show that 30% or more are left with residual effects…and it isn’t just fatigue, which affects nearly everyone.
[QUOTE]Virtually all who get the disease are hospitalized, as the disease can rapidly affect nerves leading to the heart and lungs. Yet even in the most severe cases, [U]most patients fully recover.[/U] However, many patients continue to have residual effects such as fatigue.

Only 5 percent of patients die from the disease, and those cases usually occur in the elderly as a result of complications such as blood clots or pneumonia, said Dr. Gareth Parry, a neurology professor at the University of Minnesota who serves on the GBS foundation’s medical advisory board.[/QUOTE]

This is what Dr. Gareth Parry stated in a [I]GBS Communicator [/I]article (Spring 2000) [url]www.gbs-cidp.org/news/2000/index.html[/url]

[B]Residual Effects Following Guillain-Barré [/B]

Gareth J. Parry
Consultant Neurologist
Auckland Hospital

Professor of Neurology
University of Minnesota
[QUOTE]Guillain-Barré syndrome is a disorder whose excellent prognosis is invariably emphasized. Widely accepted figures suggest that 75%-85% of patients make a complete recovery. However, many of my patients have complained to me of minor but annoying persistent symptoms continuing for years after the initial paralytic event. Although I have made no systematic study of the proportion of patients with these residual complaints it is certainly more than the 15%-25% that the figures in the literature would suggest….[/QUOTE]
Regards to all.

Jethro

I totally agree with you on the privacy that she is receiving due to the campaign.

I am recovering from a severe case of GBS that hers seems to parallel, from what I have been able to read in news releases. I am 7 months today from the onset and am doing very very well. But as far as holding a full time daily job I am not able to do that. Exhaustion is still a major effect. Keeping up with daily routines is impossible. Strenght wise I am not able to pick up stuff and move it around the house. A reem of paper would take a horrible toll on my day. I hope that her staff is well aware of the effects of this illness. We all know it is an individual thing but we have to listen to our own bodies. We can not go by what the Doctors or Rehab tells us will be happening. They just don’t know either! I hope her Staff is not in charge of this decision and push her too far. I would hate to see anyone have a relapse!

Kit,

Recovery depends on damages to the myelin sheath, and nerve axons…and how quickly the body heals. And, we all know there is not a time table on GBS recovery; myelin regeneration and nerve regeneration, which takes even longer.

Myelin does not always regenerate properly — like a string of pearls. Sometimes there are long gaps (nodes) between the pearls (myelin), and the myelin does not always form like a pearl…it may regenerate elongated and flat. When these complications happen, the body expands twice the energy because the electrical impulses are slowed from the normal speed of about 120 mph to about 60 mph causing rapid fatigue.

Axons transmit impulse signals from one nerve cell to other nerve cells, muscle, and release neurotransmitters that influence those cells. So axonal nerve damage does not allow 100% communication flow of the nerve cells and the release of neurotransmitters that help muscles function properly. Therefore, the muscle must support itself — working harder without nerve cell support. This also causes the muscle to weaken more quickly, also causing fatigue.
[QUOTE]We all know it is an individual thing but we have to listen to our own bodies. We can not go by what the Doctors or Rehab tells us will be happening. They just don’t know either![/QUOTE] There is not a doctor or therapist in this world that can predict a GBS patient’s outcome!

Best regards.

Jethro

For those of you who dont know me, I have been dealing with CIDP since 1984. I wrote a letter to the editor of the Columbus Dispatch in regard to Betty Montgomery’s illness. It was published the other day. A medical reporter for the paper called me and came out to do an interview with me. It is supposed to be published this coming Sunday. It is a shame that only when a well known person is affected, will the media look into it. I have been trying for a number of years to get someting published during awareness month with no luck.

Ron

I just hope that the article will shed some light on our illness.

Ron

Aimee, Ron, and all:

I send a letter to the Editor of my local newspaper at least twice a year, usually every May (GBS awareness month), and again in September, just prior to the flu shots. I find this a very effective way of spreading the word about GBS. Just after the letter below was published last month I got a phone call from the aunt of a young man that had GBS.

[B]May: Guillain-Barre’ Syndrome Awareness Month[/B]
After the near eradication of polio, Guillain-Barre’ Syndrome (GBS) is now the most common cause of acute flaccid paralysis worldwide. GBS is a rare inflammation of the nerves, caused by the patient’s body producing antibodies against the peripheral nerves (all nerves outside the brain and spinal cord). The syndrome is typically observed after an infection in the lungs, diarrhoea, vaccination, surgery or childbirth. Patients generally experience one or more of the following symptoms, caused by nerve damage: Pain, sensory irregularities, progressive weakness leading to paralysis or irregular function of the body’s autonomous functions. The disorder is characterised by progressive symmetrical paralysis and loss of reflexes, usually beginning in the legs.

The inflammation damages portions of the nerve cell, resulting in muscle weakness and paralysis with sensory disturbances. The damage usually involves loss of the nerve’s myelin sheath (demyelinating), which slows the conduction of impulses through the nerve. The damage may also involve destruction of the axon part of the nerve cell (denervating), which blocks conduction through the nerve. This damages the nerves that affect the patients legs, arms, lungs, throat, heart or eyes. Severe cases of GBS require a tracheotomy with a respirator for breathing and must be in ICU. Many patients are paralyzed for many months and require many more months of physical and occupational therapy.

GBS is an autoimmune disorder typically causing rapid weakness and people generally have a good recovery, usually with some residual nerve damage. One of the main problems is the lack of experience of general doctors, emergency doctors, and some neurologist in recognizing the symptoms of GBS quickly so that treatment of either IVIG (Intravenous Immune Globulin) or plasmapheresis (a blood “cleansing” process) can be started to slow/stop the autoimmune attack on the myelin sheath and shortens the course of GBS. GBS affects about 2 to 4 in 100,000 people each year.

The key point is that people with GBS can look many different ways and there is not one GBS picture. Doctors need to be made aware of the presentation of GBS through education. For information about Guillain-Barre’ Syndrome just Google up “all about GBS”. There are thousands of people that get GBS each year, or the chronic type of GBS called CIDP: Chronic inflammatory demyelinating polyneuropathy. This web site can help doctors and other health providers learn to recognize the symptoms of GBS, treatments, and residual complications of people with GBS.

I got GBS after a flu shot in 1996, and during complications with my poor recovery it was determined by University of Louisville Neurologist that I had chronic GBS, or CIDP. My immune system is still producing antibodies that attack my myelin sheath today and I get regular treatments of IVIG that stop the autoimmune attack. Researchers from the University of Texas determined in 2004 that it was probably GBS, and not polio as thought, that paralyzed President Franklin D. Roosevelt.

Jethro

After Ms Montgomery was dx the foundation was called for information. She and her office wants her condition to stay a private matter. The foundation supports her wishes. It was in the press that she is home. I know she is improving daily.

I too have tried for years to get something published. It has been very difficult. After Ms Montgomery was dx all the papers in OHIO that turned me down contacted me for an interview or information. I referred them to the office and Barbara. The Beacon Journal wanted a story about me and since it’s my local paper I agreed. I don’t believe in self promoting but this was important.

Many of these reporters researched GBS and had the facts right. Now that they have written about it they are interested in keeping in touch and doing follow up articles.

It has been a very busy few months. Thank you to Erin Tully our Columbus liaison. She was on top of the story from the beginning. She was interviewed by the papers and on radio. Erin took the opportunity and ran with it. The hospitals who didn’t give her any time now opened their doors to her. She has logged many hours dropping off materials and setting up appts. for in-services.

I encourage all to get our information posted in as many laces as we can. We are all in this together.