Monday, May 31, 2004
I noticed when signing Patti out that her brother and family had signed her out on Sunday for a afternoon in the park and a visit to Dairy Queen.
Patti could not recall any of the weekend visits.
Sadly Patti had a bowel accident at dinner which always impacts any event.
Driving back to her care facility I asked her about quality of life article mentioned in the following entry. She stunned me by agreeing that her quality of life isn't that bad. She has shelter and food. All she enjoys is watching movies and eating. People are kind enough to take her to movies and she gets fed. -- I'm still realing from that response.
Can my perception of quality of life be that different? I feel stuck in one of those parallel universe warps I mentioned many entries ago.
The link below is WHY in part we started this journal. While there is nothing wrong with optimistic thinking sometimes I am left with my mouth hanging open... "Quality of Life for MS Patients On Par With Those Without It" ?? WebMD with AOL Health - Most With MS Still Enjoy Good Quality of Life Of course like everything with MS, everybody's story is different. As a caregiver for chronic progressive MS for 18 years I don't know if I would agree about Quality of Life being on par with those without ?? However I will be seeing Patti today and will be sure to ask her opinion. This should be choice. <grin>
Sunday, May 30, 2004
Friday, May 28, 2004
Picked Patti up for several hours of visiting at home Thursday including dinner and a good old “parents meeting” at our daughter’s school.
Sometimes I think I bring Patti as a kind of talisman to ward off over-zealous fundraiser volunteer coordinators. <grin> It works every time.
I still TRY to include Patti in what is going on. I realize she most probably cannot grasp what is being discussed and most likely will remember nothing. However, my philosophy has always been to approach this as if the roles were reversed. I believe I would want to be around even if I could not functionally participate.
At least the evening had some thrills with some more than exciting moments with a runaway chair. The school has a long beautifully sloped hall that runs the width of the building sculpted into a hill. While pushing Patti up the hall on the way to the meeting I had remarked what a breeze the return trip would be. Little did I know
Letting go of Patti’s chair on the return down the hall, I learned how fast her new racing machine can move. It did not take more than a few feet before I was in a serious foot race with gravity. Obviously both the new hallway and Patti’s chair are well aligned as she was traveling straight as an arrow and only gaining speed with every foot, something I was not.
The chair was only "runaway" to me, Patti was enjoying herself as if she was at Hershey Park.
Finally catching the damn thing I realized you can’t exactly tackle a runaway wheel chair nor lasso it like a cowboy. You can’t stop it abruptly or Patti would shoot right out. An entire new caregiving skill had to be invented on the spot. In the best tradition of TV's The Fonz, I was able to retain my cool and pretend like I meant to do the whole thing the whole time, like some amusement park ride. (Maybe I did?)
One of Megan's school mates was trying to give me a thank you card from the group for helping out the past weekend. She had approached at the beginning of the chase. I heard her clip-clopping fading in and out through the race as she was wearing flip flops. She caught up to us at our stylish finale and successfully presented the thank you card.
I worry about how a Mom so disabled with MS impacts Megan's social world when I bring her along to such events. However in this case, I suspect the teen age gossip mill would be buzzing less about MS and more about about Megan's Mom roaring down school hallways like Evel Knievel. <grin>
How we avoided running over anyone else I don’t know? I just know there are a couple dozen people who will think twice about wheel chairs being slow. <grin>
Disabled or daredevil, it's all in the eye of the beholder. And how much craziness the caregiver brings to the pit crew. <grin> Living with MS, can turn even "parent's meetings" into something unique.
Thursday, May 27, 2004
Living with MS cannot really be separated from caregiving. Depending on progression more and more centers on the caregiver. Here another unique factor enters the equation.
Every caregiver brings a different set of values and philosophy to the table. Experience and growth necessitate constant reassessment and evolution. Your core primary values have to be discovered and tested
Our American culture is not the best of environments for long term support. Hedonism is trumpeted daily while sacrifice tends to be whispered in places of worship on weekends. I believe the majority of marriages dissolve in divorce anyway without any challenge like MS. Hell, we were attacked as a nation and thousands murdered less than 3 years ago and our resolve has broken into squabbling.
Culture or society is not going to support or reinforce you. If anything the temptations of escape will grow exponentially. It’s only rational to look for the easy way to handle it.
My friend Renee kids me that my durability can be traced to a Catholic obsession with martyrdom and guilt. I was raised Roman Catholic. Today I would label myself a “depending” Catholic. It depends if God and I are speaking at the moment. I hold him responsible and some weeks I am not in a forgiving mood.
Fortunately you are too busy to have the time to ponder the meaning of your life or what’s in it for me? If you ever did, you would run out the door screaming never to be seen again. <grin>
Bottom line, it will be about you and what you are made of.
Wednesday, May 26, 2004
Whether AMA/FDA or Alternative Medicine we’ve tried what we could afford and more.
Medical insurance certainly controls the agenda with the AMA/FDA treatments. Patti’s chronic progressive MS does not always qualify for some treatments du jour.
Of the ABC’s only Avonex was tried for significant time. B (Betaseron) is a story unto itself, and C (Copaxone) is an exclusive relapsing remissive MS kind of thing.
Corticosteroids and chemotherapy have been rolled out as big guns to try and slow the progress
Never having complete faith in medical science, after all they go home at 5 PM. We explored alternative medicine in part because AMA/FDA profiteers were so adamant in their warnings not to.
From diet to clinics in Germany to honey bees we searched for hope. You HAVE to! Living with MS is also about always warring with MS.
Depending on progression the role of the caregiver spouse moves more prominently to carrying the struggle.
Chemotherapy in particular Cytoxan was tried early in Patti’s diagnosis.
I remember our daughter was in pre-school at the time because there was concern over exposure to the myriad of diseases that breed in pre-school. Cytoxan is a powerful immune system suppressant.
The principle behind chemotherapy and MS is to suppress the immune system because in a sense MS is the immune system gone amuck. That‘s the simplified two line explanation. For ‘inquiring minds’, volumes of documents are available on NMSS web site regarding chemotherapy and MS at
Did it work? NO! Patti lost hair by the handfuls and trying to increase distance from a mother already increasingly disabled with MS and a 4 year old was cruel.
MS can never be isolated from “living with MS”. The unique lives and families that surround each person diagnosed with the disease are part of the equation.
Prednisone has been the most frequent treatment throughout the 18 years
Treatments have ranged from maintenance dosages to "Prednisone Pulse Therapy". In this latter, Patti would swallow 1,200 mg of Prednisone per day over a three day period once a month. (A homecare friendly adaptation of the ‘Solu-Medrol IV Drip’ outpatient treatment.)
Prednisone was usually thrown at periods of more active exacerbations or flares. For ‘inquiring minds’ additional information is available from NMSS web site regarding CORTICOSTEROIDS as treatments for MS attacks: http://www.nationalmssociety.org/Sourcebook-Corticosteroid.asp
Did Prednisone work? It seemed to usually help with an attack. ‘Prednisone Pulse Therapy’ in particular I swear could make a corpse walk. Patti always had a few extraordinary days before the bottom fell out following ingesting 3,600 mg of Prednisone. The days that followed euphoria was caregiving hell.
Prednisone has risks. Early in diagnosis when Patti was using as maintenance self image related problems such as hair loss, weight gain, and rounding of the face developed. Osteoporosis, diabetes, cataracts, and stomach ulcers are more long term side effects and so far have not reared their ugly heads
However during scary days at home with multiple falls, Prednisone was a tried and true stabilizer.
Tuesday, May 25, 2004
A is for Avonex in the MS alphabet. Patti used Avonex for a little over 2 years.
Here again impaired vision and coordination prevented self administration by Patti. Her neurologist arranged training in subcutaneous injections for our entire family and all possible caregivers. (What a difference from the days of NO support for Calcium EAP.) Even our daughter now middle school aged was included in training.
Avonex is an Interferon and simply put is designed to prolong the time between MS exacerbations thereby prolonging functional time of life. Of course much like Betaseron it was oriented toward early diagnosis and remitting remissive MS.
Pattis neurologist went to bat with our insurance. At the time, some European trials were showing success even with chronic progressive MS. Fortunately our insurance agreed to pay and we entered the Avonex era at a more than affordable copay of $25 every three months, versus a listed price of $980 per month.
From a caregiver perspective, weekly subcutaneous injections were a breeze compared to bee stings or twice weekly intravenous injections with Calcium EAP. Side effects were non-existent. Patti NEVER demonstrated any of the flu-like symptoms.
Did It work? Not really. Maybe it slowed some progression of physical symptoms. However the onset and rapid deterioration of memory and thinking skills, quality of life issues like both bladder and bowel incontinence, and more all began and progressed during the Avonex era.
Avonex and the interferons eventually joined the ever growing junk yard of efforts to slow the beast for Patti.
For others with MS, Avonex is a license on life. MS is baffling.
Monday, May 24, 2004
When all your waking hours are spent in a wheel chair, a NEW set of wheels is a BIG DAY! Pattis new custom wheel chair arrived today and she had her final adjustment fitting this morning.
As President Bush was also in
They may have to put speed bumps in the halls to slow her down. <grin>
Saturday, May 22, 2004
Patti like so many with MS had her ABC drug era. Her neurologist fought to have her included in the original Betaseron trials to give her at least a chance of getting on the medicine ASAP. The point to the ABC drugs is to get on the medication early in MS diagnosis.
Betaseron rejected Patti repeatedly for those trials because she was already too advanced. They obviously wanted nothing to screw up their trials and only happy shiny results. With amazing audacity Betaseron assigned Patti a lottery number once approved by the FDA soliciting her to begin Betaseron immediately because of its proven results to help patients with MS. Yeah right!
At that time our medical insurance would not pick it up and at nearly $1,000 a month it was out of our budget. Especially for a drug whose manufacturer had twice rejected Patti for their FDA trials as too advanced, yet somehow when money was involved had a reversal in thinking and felt it suddenly could benefit Patti.
Dont ever think charlatans can only be associated with the world of alternative medicine. They lurk anywhere there is money and people in need.
Yet some people with MS do have positive results from Betaseron. Each patient is unique, and each family situation is unique.
Anyway B never even got off the ground A to be discussed in the future, followed a couple years later. (So much for alphabetical order, after all what is logical about MS?)
Friday, May 21, 2004
Please know there was ALWAYS hope and enthusiasm associated with the initiation of every new treatment. I may not always capture that in retelling the story. Please know and remember it was with us AT ALL TIMES. HOPE fuels the fight in living with MS.
As a caregiver you will know defeat.
Without sounding like something off the SciFi channel, its a lot like parallel universes. Your spouse with MS has one way to have to deal with it all, yet you have a parallel though no way identical path.
They have no choice. Yours is founded in choice. It can get weird!
Thursday, May 20, 2004
BEE STING THERAPY was another alternative medicine treatment we explored.
Living at the time in
Making NO ENDORSEMENT but for inquiring minds here is an additional link you can follow for more detailed information about Pat Wagner and bee sting therapy from the Discovery Channel.
Patti began a program of, at peak, two dozen bee stings every other day for almost a year and a half. Her vision and hand coordination had deteriorated beyond her ability to self administer so I had to do the stinging for her.
From a caregivers perspective this treatment took mind boggling courage. No matter how much ice and routine is involved the bottom line is you are receiving thousands of bee stings.
Some particularly frustrating days it was also caregiver therapy. Stinging Patti could have a therapeutic release <grin>.
Though it was extremely time consuming, it was never boring. The honey bee is an amazing creature and a worthy adversary. Like something out of a Kung Fu movie you have to first catch one with a pair of tweezers out of a box containing dozens of other bees. Second, while holding the captured bee with the tweezers in one hand, somehow close the box with your other hand before the others escape. Third, you have to hold the captured bee next to the patients skin at predetermined locations to sting. Fourth, you put the used bee into a container for release later. Then repeat the whole cycle over repeatedly. Periodically going back to remove any stingers left behind by some bees.
It became a family project every other evening. Patti was the stingee; I was stinger, and our daughter (at this point 8 years old) in charge of escaped bees. Amazingly neither our daughter nor I were ever accidentally stung.
Did it work? Once underway that hopeful pattern of positive immediate results occurred, followed by stability, and then after the year anniversary mark once again MS progression began to trump all. This too was chalked up to another valiant effort.
Next onto traditional AMA / FDA treatments that have also met similar fates against the relentless foe, MS
Wednesday, May 19, 2004
Battling MS is a desperate fight. You dont really leave any stone unturned if possible.
Alternative Medicine has been explored equally unsuccessfully as traditional AMA / FDA approved treatments.
The two most significant attempts were Calcium EAP and Bee Venom Therapy.
Calcium EAP involved essentially a mega vitamin/mineral program. Over 10 years ago, through the generous love of Pattis parents they accompanied her to
Did it work? Patti left the
All things considered the year that followed was good.
After about a year MS started progressing downward again. We gave Pattis calloused veins a break and chalked it up to another valiant effort against an invincible foe.
Meaning NO ENDORSEMENT but simply as an elaboration for inquiring minds, I found this link to another's story offering a more in depth related personal experience:
Meaning NO ENDORSEMENT but simply as an elaboration for inquiring minds, I found this link to another's story offering a more in depth related personal experience:
More about Bee Venom Therapy later. Stay tuned .
I wanted to follow up on a comment posted to Blood in Urine journal entry. It is indeed true that the most pragmatic and beneficial help we have ever received has come from Nurse Practitioners.
Neurologists and Medical Doctors frankly have a tendency to treat a MS Patient as some abstract enigma.
Nurse Practitioners seem uniquely founded in the understanding that a patient is a unique human being and exists within the context of a family.
Yes, these are generalizations. Im sure there are exceptions. We have however found them to be more often true than not.
MS is unique to each unique person who in turn has a unique home environment.
While Patti still sees her neurologist twice a year, we replaced family physician with family nurse practitioner and quality of life improved for all of us. Nurse Practitioner / Neurologist relationship has been exponentially better than Doctor / Neurologist relationship in terms of addressing Pattis unique needs.
Tuesday, May 18, 2004
Monday, May 17, 2004
Sunday, May 16, 2004
I rolled Patti to the park next door to care facility for an hour or so of fun before dinner while our daughter finished some procrastinated homework projects today.
Living with MS doesnt have to be always serious.
"Though nothing, will keep us together
We could steal time, just for one day.
We can be Heroes, for ever and ever
What d'you say?" David Bowie, "Heroes"
Friday, May 14, 2004
Wednesday, May 12, 2004
Megan (our daughter) and I dropped by to take Patti out to Dairy Queen for dessert.
Sometimes the problem is finding Patti. <grin>. The social butterfly was in the main lounge for movie night on the MEGA screen TV. The temptation of ice cream was sufficient to lure her away.
It was a fun though messy visit. But thats OK too as I dont have to do her laundry anymore.
Megan gave her an electrostatic voice activated lamp for mothers day which has become a big hit with the staff. Talking to Patti your voice is displayed in electrostatic patterns
This also raises yet another relationship impacted by MS in all this. Ive certainly dwelt on spousal caregiving. I touched on Pattis parents. Yet there is also Megan
Turning 16 is a world of challenges in itself. Toss in your mothers admittance to a long term care facility and we are talking uncharted territory.
You could go nuts if you let yourself. You just have to seize the moment. This moment tonight was simply about making the most of enjoying some time together and ice cream, of course.
Ice cream therapy the world needs more of it
(from Pattis Mom)
Believe it or not Patti told me you are getting the book machine repaired. She was in a very good mood after getting a perm. She rec'd a very nice letter from my former boss, Jeff Walters, remember him? He's the one that married you two...he sent Patti a CD of his wife playing some classical numbers, I brought it home to make a tape so Patti can then play it on her tape recorder when it is repaired. He also sent a book written by a friend of his...read Jeff's letter, that will better explain the book than I can. "Georgie" from across the hall came over for a short visit, a good friend of hers is in the Sweet Adelines with me....you can really see the frustration in her face when she is trying to communicate, soooo sad, BUT my Patti made her laugh!!!!!
[Note: Library for the Blind supplies an extraordinary user friendly tape player and library of tapes for blind and visually impaired people. It does periodically need maintenance which each local city branch is glad to do or supply a new machine. I took Pattis machine the night before I am amazed she remembered.
Yes, there is a hair parlor on site.
Yes, there is a hair parlor on site.
The other interesting line in Glorias note above references our marriage ceremony. A day does not go by that I do not shake my head at how hard we worked on our vows. At Pattis insistence they EXCLUDED any promise to have and hold in sickness and in health She had already been diagnosed as probable MS and did not want the future linked to MS though at the time MS was in remission.
Tuesday, May 11, 2004
Just measured paperwork and at 5.25 Im stopping for the day. Im guestimating thats about 3/4 of what is required to file for Medicaid.
Remaining is primarily computer generated financial reports, average expenses, etc. I cannot even imagine what people who are not empowered with home computers or obsessive organizational skills must face.
Had to run by care facility to pick up an invoice of physical therapy bills. A perfect example of well intended services that can get out of control if not monitored. Currently our bill stands at $3,000 and I stopped it over a month ago.
No one in the system clearly grasped MS and/or what medical insurance considers acceptable treatment for chronic progressive MS. Unlike home care and private physicians there are not the checks and balances of communication in institutionalized care. After all they are not financially responsible so why not? Any potential reimbursement by medical insurance is currently to be determined.
An institution sees money quite differently than a family.
Arrived to find two staff members working to clean up Patti who had an accident in bed while napping. Clothing, linen, even floor needed mopping. That is one function of home care I DO NOT miss! Frankly they were also a lot nicer about it than I would have been. There are also many PLUSES to a care facility. "Care" is the major one.
Can you put your hands on 3 yrs of EVERY page of EVERY bank statement? NO EXCEPTIONS.
That's just the proverbial tip of the iceberg of the additional workload expected of the caregiver spouse in preparation for application for medical assistance to pay for long term care. Compiling literally inches and inches of paperwork is what I have been up to since Mother's Day.
Sinking in medical debt you have to protect yourself and your family. As I mentioned in an earlier post you have three choices: long term care insurance, independent wealth, or Medicaid. We are not independently wealthy and with MS beginning 18 years ago long term care insurance is not available once you have such a diagnosis as MS. Applying for Medicaid for Patti or inevitable life on the streets for the three of us is the choice.
The decision to have to abandon home care is tough. The transition is exhausting. It's hard enough to ask for help; to beg is something you thought you would never resort to. You can rest assured our government guarantees that you must grovel and your family be economically disemboweled.
Facts and workload aside there are emotions associated with each step that you can't even process before moving onto another, like jumping from roller coaster to roller coaster. Are you a caregiver? Spouse? Parent? Homemaker? Head of family? How has all of this changed these? The responsibilities drive you forward deeper into unknowns.
How did it ever get so desperate? Our system is so skewed against homecare for seriously disabled people that you find yourself suddenly at the precipice of the age of institutional care no matter how well informed simply because life isn't predictable.
What is MS? We can assure it is a lot more than a neurological disease.
Monday, May 10, 2004
Im as new to this as any reader is, and that is an excellent question.
1 When you get to the bottom of this page CLICK on View Older Entries. That should automatically open the rest of this months entries.
2 To view April notes click on pull down arrow next to month in upper right corner of the view older entries page. Select April, and then click GO. April titles will display and select the ones you want to read.
3 Caregivingly Yours, journal only began in late April. Most of the background information is included in those earliest comments.
Hallmark Holidays that begin and end in long term care facilities are intensely poignant. There is no life sized scale you can counter balance with good intentions.
Most of Mothers Day was an away day with Pattis parents and family then afterward at our own home. Visiting with our cats was a special request and treat for Patti.
Patti seemed to enjoy herself outside of MS symptoms plaguing her day.
An episode of spontaneous vomiting preceded lunch (a common though fortunately intermittent symptom). Pattis stamina noticeably weakened through the day. Spasticity in her right leg was prominent by end of day. Spasticity is one MS symptom Patti has rarely manifested. ?? Bladder incontinence necessitated three Depend changes over 6 hours. Cognitive problems and mental confusion like stamina worsened with the day.
The simplest travel and activity we 'able bodied' people take for granted can take such a different and unpredictable toll on someone with MS.
Sunday, May 09, 2004
You can get a MS Ribbon Of Hope from your local chapter of the National Multiple Sclerosis Society. You can find your local chapter information at http://www.nmss.org/
Speaking of unpredictable effects, I took Patti shopping this evening for a gift for her Mom for Mothers Day. She had amazingly held the idea in her head for at least over a week as to what she wanted to buy. Yet on the drive back from shopping and successfully purchasing the gift she could not even remember what she had bought.
Friday, May 07, 2004
Pattis life long friend and unofficial sister, Sharon, was a genesis for this on-line journal when she began leaving a written journal for visitors in Pattis room. Some excepts will give you a sample of visiting:
Patrick, Megan, Harold, and Sharon visited this evening. Along with Patti, we accompanied Megan on her second driving lesson. Since I am able to write this, it means that none of us were maimed or killed we didnt even get sick!! Megan did very well indeed. We also made a trip to Dairy Queen and Patti had her first Chocolate Utopia. No, Megan didnt drive. Patrick did, and in my opinion, someone else should teach Megan to drive. Patrick aims at curbs!!! Until next time, love from best friend/sister, Sharon.
(from Pattis Mom, Gloria) April 26, Monday
Harold, Gloria, and
Pattis Depends were very wet, so I helped her change her clothing.
We walked Patti to the dinning room and then departed for home.
(from Patrick) April 26 Monday PM
Patrick wounded see BLOOD (a drop of blood was added to page for dramatic effect) measuring for wheelchair. NO first aid kit in room!
Patti had PBJ and chocolate milk delivered during visit at (bedtime snack?). Some people get treated well. <grin>
Of course, PB&J is NOT on
Ordering a custom wheel chair is a pain in the ___. However, it should be a major jump in comfort and ease to operate.
(from our daughter Megan) April 28th
Warning for all readers, there is a potential AIDs hazard on the opposing page (referring to my blood stain).
The perfect one and father have come for a visit. Found mother wandering down the hall, vehemently proclaiming how insane everyone here is.
The worlds newest room decorator has decided to spiff up the place a bit, but it is the opinion of this girl there are many others better suited to the task.
Had a lovely time with The Creature, Mothers latest bingo win. I suspect theyll turn her into a bingo addict at this rate.
New wheelchair coming soon!
PS Dad took twenty minutes to figure things out and freaked out all the while.
[Editors Note: While I encourage freedom of the press in this journal Im quite sure the founding fathers meant to exclude teenagers.]
(from Pattis Mom)
Gloria, Harold, and youngest rambunctious granddaughter Victoria .
[Editors Note: Visitor log entry ended abruptly at this point. Rambunctious was obviously an understatement.]
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- Memorial Day
- Quality of Life
- from Patti's Mom re: Saturday
- NYC 5/29/04
- Runaway Chair
- Hedonism VS Sacrifice
- The MS War in Summary
- Swank Diet
- NEW set of wheels!
- Thursday outing
- HOPE fuels the fight
- Bee Sting Therapy
- Alternative Medicine
- Nurse Practitioners
- Blood in urine?
- Medicaid application
- Sunday in the park
- An 'able bodied' day
- Ice cream therapy
- Towering paper
- Medical assistance
- What about older entries?
- MOTHER'S DAY
- MS Ribbon of Hope
- Visitors and more visitors
- Windmills and Dragons
- Low Rider
- Accidents - what a way to start a day ...
- Age discrimination?
- Elder Care Attorney
- Knowledge is power ...
- Is MS supposed to ...
- from Patti's Mom
- Family visiting
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