Update on Gisela

Interesting Doctor’s visit this morning.  Gisela gave our family Doctor the report from the Klinikum Christophbad and he was pleased at the results.  He made note of the change in medication, updating his files.  After some conversation he asked Gisela if she can still dance.  She said yes, I can do a waltz.  He stood up and extended his hand and they went to the back of his office as Gisela began to hum the Blue Danube as they started dancing.  Gisela’s voice got louder with the “da-da-da-dat-da, dat-da, dat-da,…”  The door to the office opened and the staff looked in watching them dance.  It was quite a scene.  It was a spontaneous thing and Gisela enjoyed it tremendously.  She left the office smiling.
Hmmm.  Now I’ll have to wonder if she plans to go dancing when she makes a Doctors appointment.

LET HER DANCE!!

God Bless

Good for her.

Don, Alice, thank you.  I think its great when a doctor does more than write prescriptions.  Doing things for the soul goes a long way to healing.  I think it was some sort of celebration that prompted this reaction.  Her report showed progress.  Dancing can be an expression of joy.

That's what I felt - joy.  Wonderful that you have such a great doctor and a wife who can appreciate the spontaneity of the occasion - now you will need to dance also....

DK.  I shall try.

I love this! She has a human doctor.  I love that even more. 
I think every girl has the dream of being a dancer once they see a ballet or watch a formal waltz.  It is the closest one can get to going to the ball and dancing like in the fairy tales.  You know, I do believe in fairy tales.
Love,
Betty

Did more searching about Immunoglobulin Infusions.  Gisela wants to know all she can about her disease and prescribed treatment.  She reads all the reports and continues to search for any new information.  It is clear that the infusions only last a short period of time.  I recall the Doctor saying that the treatments were very expensive and that not many facilities could handle it.  I searched for the cost and it floored me.
A four-dose course costs $25,000 to $26,000.  When she goes to the Klinik in Goppingen, she gets 3 infusions per day for a minimum of five days.  In my estimation, every trip she makes to Goppingen costs the Krankenkasse (Insurance carrier) approximately $100,000.  She has already been there three times for treatment.
Her next scheduled visit for treatment is on the 16^th of December.  The treatments do help, however they don’t last more than several weeks. 
It is uncertain if the same procedure will continue or if they will find another method for control.  As you can imagine, there is no way we could afford these treatments if we were personally liable. We are fortunate in many ways.

I brought Gisela home from the hospital today.  The cracked discs are healing and she's wearing a body brace.  She curled up on the sofa surrounded by our furry critters and it was a peaceful sight.  She didn't say anything about my housekeeping, however I imagined her grinning privately.  As we went through the house during the day we found much to laugh about.  Two old souls moving about trying to help each other.  Even without the nursing help, it was great to be together again.  The critters (cats) followed her around and found a place to snuggle.

Glad to hear that Gisela is home and recovering, Abe. I'm sure you are glad too!

Glad you are both together.  Enjoy

What a a lovely report of love between you two.  I see it in my minds eye and it makes me happy and smile.  Love, is all that matters. Love, Betty

10/26

             Abe..

                   That is very touching and beautiful ! You have each other and the kitties and both
of your health is improving that's all that matters.. I love Strauss I never miss New Years from
Vienna.....

                                                         Cheers........Joe..

Gisela was laughing and I wondered why.  She said: "If someone were to ask what we did this morning they would laugh too.  We both filled our pill boxes for the week."

Gisela was admitted to the clinic in Christophbad (near Stuttgart) yesterday for evaluation and further treatment.  She said that she was seen by several Doctors asking lots of questions about her condition.  After all the probing and discussions, the head of the Neurological Department said that they will be trying a different method of treatment.  We don't know what that is just yet, but she feels that she is in good hands and her spirits are high.  It was a relief for me that she is in the hospital.  Her condition had worsened.  Two days prior to her admission, she would sit and cry, feeling miserable.  As I tried to comfort her she asked me:  "Do you still love me?" 
After some discussion and reassurance, she said that she felt so helpless and thought that she was letting me down.  I believe that attitude has much to do with the "being a good wife" thing that is part of her upbringing.  Trying to do everything for her only made the situation worse. 
It has been and is a learning experience.  I believe that people want to feel needed.  Self-esteem is part of the problem.  She has been self-reliant her entire life, capable of handling any situation.  Losing that capacity can be emotionally devastating.  Feeling helpless or requiring assistance is not something seniors can easily deal with.  My daughter has been a big help in understanding the psyche of seniors since she deals with them in her work.  Unfortunately she cannot be here as often as she or we would like, however her insights and recommendations are helpful. 
I’m sharing this with the hope that it may helpful to others.  The need to feel wanted or needed is not always associated with an illness.  Allowing seniors to do what they can at their own pace without being made to feel too dependent is important to their mental health.  When my asked the question: “Do you still love me?” It hit me hard making me realize that reassurance is important and that I was failing to provide that basic human need.

6/1/2017

               Abe..

                      My heart goes out to the both of you and you are in my prayers. What you talk
about I went through for five years with my former partner who died. Now I find myself
ache, when I fell last month I knew I didn't break a bone but I hit my knee very badly , you
wouldn't believe how long it takes to get an appointment with a bone Dr., I was told 2-3 months !
That's how it has gotten , my Dr. is trying to see if he can get one sooner, I know I did damage to
my knee it aches and when you stand too long it gets painful, my Dr. kept saying it was arthritis
very sad...

                                                                 Cheers.....Joe

I'm sorry to hear about Gisela, Abe. Growing old is bad enough without illness, which makes life so much more difficult. Although Gisela can do less and less, she fulfils an important role by just being there. Life would be very lonely without her. Loving and being loved are important for mental and physical wellbeing.

Thank you all for your kind comments and understanding.  Having friends to share things with helps.
When I hear about the difficulties people have, like Joe, in getting medical help, I am saddened and angry at the same time.  While we are fortunate to have access to full and complete affordable healthcare, it does not erase the sorrow I feel for those who are suffering without good care.  That includes members of my extended family in the USA.  My anger is deepened when I continue to hear the boastful claims about America being the "best in the world" along with “America First” while the citizens of our country suffer.  Those in power seem to think that making money is more important than human lives.  That is evident in our healthcare system as well as with environmental issues.  Preserving the life of our planet goes hand-in-hand with the quality of life on this planet.  It should not and cannot be money oriented.  Money is simply a tool – a useful tool, however you can’t eat money nor can you take it with you when you die.  Thoughts of dying increases in awareness for seniors and for those who are suffering. They are further burdened with anxiety on how to pay for the care they receive.  Their security blanket is being threatened thus adding to their worries. Fending for oneself sounds good for the young and healthy.  When people can no longer fend for themselves is when they begin to realize the value of social services along with the help of family and friends. 
Thank you all for your friendship.

Update on Gisela
With all the testing, she was given a new diagnosis:  Lambert-Eaton myasthenic syndrome. 
“Anderson and colleagues from St Thomas' Hospital, London, were the first to mention a case with possible clinical findings of LEMS in 1953,^[9] but Lambert, Eaton and Rooke at the Mayo Clinic were the first physicians to substantially describe the clinical and electrophysiological findings of the disease in 1956.^[10][11] In 1972, the clustering of LEMS with other autoimmune diseases led to the hypothesis that it was caused by autoimmunity.^[12] Studies in the 1980s confirmed the autoimmune nature,^[5] and research in the 1990s demonstrated the link with antibodies against P/Q-type voltage-gated calcium channels.”
Her medication has already been adjusted.  There is the possibility that she can return home sometime next week.

Positive thoughts and prayers are sent out to you and your wife for her recovery and your ability to share many healthy years together.

Abe F. March wrote:

Update on Gisela
With all the testing, she was given a new diagnosis:  Lambert-Eaton myasthenic syndrome. 
“Anderson and colleagues from St Thomas' Hospital, London, were the first to mention a case with possible clinical findings of LEMS in 1953,^[9] but Lambert, Eaton and Rooke at the Mayo Clinic were the first physicians to substantially describe the clinical and electrophysiological findings of the disease in 1956.^[10][11] In 1972, the clustering of LEMS with other autoimmune diseases led to the hypothesis that it was caused by autoimmunity.^[12] Studies in the 1980s confirmed the autoimmune nature,^[5] and research in the 1990s demonstrated the link with antibodies against P/Q-type voltage-gated calcium channels.”
Her medication has already been adjusted.  There is the possibility that she can return home sometime next week.

That's great news, Abe! Scientists have just discovered a way of killing drug-resistant bacteria, so maybe this new treatment will be much more effective. Drugs are improving all the time.

Thanks, Shelagh.  Whether we like the word "drugs" or not, they are important and can save lives as well as take lives.  Having access to "proper" treatment with qualified-experienced physicians is necessary.  Some doctors are prone to write prescriptions in a "trial and error" mode much like a mechanic working on a car.  When someone takes multiple tablets, the interaction of these various medications must be evaluated by experts. The list of “Side effects” that accompanies prescriptions should be read by all those taking medication and adverse reactions reported to the doctor and/or the pharmacist.  The information on “Side effects” is updated as they receive feedback from patients. 
With rare diseases, one cannot assume that one will receive proper treatment when seen by a new doctor or being admitted to a hospital.  This is especially important as we discovered on her last hospitalization.  The information about her disease was not relayed to the doctor before they began treatment and she was near death until the doctor was informed about her disease and the medication she could and could not take.  Gisela now carries this information in her purse in the event of an emergency to alert medical personnel.
 
When a diagnosis is made, it does not always mean it is the correct one.  The patient must inform themselves.  One should not assume that just because someone has a title of “Doctor” that they know everything.  Questioning the doctors concerning the treatment they are giving and the drugs prescribed must become habit forming.  We hear much about “fake news” and why critical thinking is important. That is even more important when it comes to your physical well-being.  If doctors wish to experiment, and they do, it should not be done as an outpatient, but as an inpatient in a controlled environment.  
When Gisela informed me of the new (updated) diagnosis, she asked me to do a search on the I-Net and let her know what it says.  I did that and relayed the information to her.  Part of that information I included in my post about the disease.  I know that she will pose many questions to the doctor about this.

We received a delivery today from the Apotheke (pharmacy).  Among the prescriptions they filled was
“Firdapse®, currently approved in the European Union, is the first and only approved drug for the symptomatic treatment of Lambert-Eaton Myasthenic Syndrome (LEMS) in adults, a rare autoimmune disease with the primary symptoms of muscle weakness. In LEMS, the body's own immume system attacks connections ...”
Included in the packet was the cost receipt.  The Firdapse showed the cost as 2860 Euros for the 100 tablets.  It will last her for 60 days.  Dr. Sommers said that the dosage will be increased on her next visit to Goppingen.  I mention this only to say how fortunate we are to live where we do.  The cost to us is zero.  I never added the cost of all prescriptions she takes or has taken, but the cost to the TKK (our insurance provider) is considerable for drugs alone.

The last conversation I had with my brother, Richard in Florida, he asked me if I planned to return to the USA.  I told him that I couldn’t afford to live in America.  He didn’t ask why and I didn’t explain


I continue to push for the single-payer program in America and support any candidate that has this on his/her agenda. 

Phooey.

Much happening since my last post - personal issues have taking priority. Gisela was hospitalized with initial diagnosis of a Kreislauf (circulatory) collapse.  Once in the clinic, the diagnosis was changed to a heart attack and she was transferred to the Heart Cliniic in Landau.  Initially she was placed in the closely monitored“Watch Room”.  When her BP went over 200 she went into Intensive Care where she has been for the past 3 days.  Thankfully, they were able to get the BP down.  Yesterday she had an Ultrashall in preparation for a Catherization procedure.  With her improvement, that procedure was delayed.  Subsequent evaluation of events showed mistakes in diagnosis.  She was in a Myasthenia crisis that triggered misleading symtoms.  The next step will be transferring her to the Neurological clinic specializing in the treatment of Myasthenia and LEMS.  I am fortunate to have Christine with me who took charge, making phone calls and being in consultation with the medical staff.  She questioned everything and didn’t tolerate BS from anyone, including the doctors with their uninformed guesswork.  Few in the medical profession are familiar with the disease and thus make mistakes, including the medication she requires. 
In the meanwhile, Trump is beating the drums of war and the UK is planning another vote re. Brexit.  The more serious of the two is the potential for war in the M.E., with Trump fabricating events about Iran similar to what happened leading to the invasion of Iraq.