Mimi On My Mind

NO BACK PAIN

2010-05-14T06:04:00.000-07:00

I got the most wonderful piece of information from Mom yesterday when I asked her how her back was feeling. Her answer? "It doesn't hurt anymore. There's no pain AT ALL." I can't tell you how happy I was to hear her say that. When Lyla and I visited last month, her pain was obvious and it hurt me to watch her struggle to move, etc. I am looking forward to our next visit later this month because I just know she will be able to enjoy our company so much more.

We thank the Lord for continuing to work in Mom and Dad's life and for the healing we have already seen. With HIS help, we know Mom is going to get stronger and stronger and her quality of life will improve.

Mom is out of Surgery

2010-05-07T12:59:00.000-07:00

I just talked to Dad--Mom is out of surgery (they were late in starting) but it will take an hour for the cement to set up and before he can go back with her. They were able to repair all four fractures. The doctor warned Dad that because of the brittle condition of her bones, these probably won't be her last fractures like this. The dr said Mom should be able to do more in a couple of days but will be sore and have low energy at first.

Thanks so much, as always, for your prayers.

Surgery Today

2010-05-07T05:43:00.000-07:00

Mom checks in to the hospital at 10am Friday. Please remember her in prayer this morning. Lift up Daddy, too, as he will be sitting alone in the waiting room. They both find their strength in the Lord and continue to feel the prayers you are sending on their behalf.

Thank you.

Pray for Mom's Anxiety

2010-05-06T05:43:00.001-07:00

Mom is very nervous and anxious today as she anticipates her surgery tomorrow. Please lift her up in prayer today. Pray that God will give her peace and calm her nerves.

Thank you so much.

Kyphoplasty this Friday

2010-05-03T12:26:00.000-07:00

This is an email from my dad:

Saw Dr. Michael Schaufele of Emory University this morning. The MRI showed two compression fractures (L1 and L4) and two beginning compression fractures (T12 and L2). The procedure called Kyphoplasty will be performed at 9:30 this Friday for the L1 and L4. If she is doing OK then they will perform procedure Vertebroplasty on the other two. If she is not doing well enough then at a later date she will have to go back for the other two. I hope all can be done at the same time. She will be able to come home Friday afternoon. The Kyphoplasty uses baloons to put in the cement. That expands the vertebrae more. The Vertebroplasty does not use balloons.

Kyphoplasty is what was done while she was in Kentucky last November. You can read more about both procedures here.

Another Compression Fracture

2010-05-03T06:07:00.000-07:00

Mom's MRI last Thursday showed another compression fracture...this time it is the 4th lumbar vertebrae. She also has some swelling. She is meeting with an orthopedic surgeon this morning to discuss what the next step will be.

MRI and FORTEO

2010-04-20T14:07:00.000-07:00

Mom has continued to be in pain...both in her back and on her left side. We wondered if the pain in her left side might be due to over-compensating but there might be another problem. My brother's father-in-law (an orthopedist in Florida) asked to take a look at Mom's most recent cat scan and his opinion (in my dad's words) was as follows: He thinks Mom may have a herniated disk. He also suggested she have an MRI of the lumbar and pelvic. Also, he said that she has a cyst on her left side.

So, Dad called about getting the MRI and it has been scheduled for April 29 at 10:45(Lumbar) and 11:30(Pelvic). Please pray that they are able to identify exactly what is causing Mom so much pain.

Also, you may remember that I told you about a drug called Forteo that Mom's orthopedist wanted her on. The insurance company denied it because her bone density was 0.5 better than it needs to be to qualify for that type of drug. Dad sent this email today: I faxed the rejection letter from the insurance company to Dr. Bowen, the endocrinologist and he appealed the rejection. He probably used the latest problem that Mom has for the appeal. Got a letter today from the insurance company stating that they had reversed the rejection and now approved the new medicine. Dad has already picked up the medicine and will begin giving her the injections tomorrow.

I will post again when I know the results of next week's MRI.

Another Possible Fracture

2010-04-06T08:08:00.000-07:00

In Dad's words:

The rheumatologist, who has been trying to get an answer about Joyce's pain, called last night. He said that the CT scan showed a possible fracture of the sacrum, which is a bone next to the pelvis. This is not definitive, but the scan showed a place on the right side, which is the side about which Joyce has complained. Unfortunately, there is no surgery that can be done for this type of fracture. It will get better but will take a while. Just have to treat with pain medicine. This is good and bad news. We now know that it was not just muscle spasms but also that there is not anything medically that can be done at this time. Hopefully, it will begin to heal quickly.

From Ashley: Lyla and I drove down yesterday in time to celebrate Dad's birthday. We are enjoying our visit. Lyla (who gets just about anything she asks for) is especially enjoying herself.

Cat Scan Today

2010-04-01T07:49:00.000-07:00

It's been a rough couple of weeks for Mom and Dad. After being sent home from the ER (re: the last post), the pain killers and muscle relaxers didn't seem to do the trick. In fact, they just seemed to knock Mom out. Dad was unable to get her in to see her orthopedic doctor so she went back to the ER last Saturday, March 27th. Once again, they sent her home with more pain meds saying it must be muscular. Thankfully, Daddy didn't accept this and kept pushing her doctors to see her or at least truly find the root of her pain. Her vasculitis doctor spoke with her orthopedic doctor and they agreed that Mom most likely has a fracture that just wasn't detected by the x-ray. Her bone density problems make it difficult for x-rays to pick up fractures.

Mom is having a catscan today at 11am. Please pray that they find what is causing her so much pain.

Muscle Pain

2010-03-17T06:58:00.000-07:00

Mom's hip began to hurt toward the end of last week. She was trying to treat it with pain medication but that wasn't cutting it. By the weekend, she was having trouble getting up and down. The home health nurse came over the weekend and noticed some knots in the area. She massaged the knots which seemed to relieve the pain, but only temporarily.
Monday, the pain wasn't only in her hip but also in her back and it got so bad that Dad took Mom to the ER yesterday. After a long wait to see a doctor, they did x-rays of her lower back and hip. The x-rays didn't show anything and they think it's just muscle spasms. Dad will get percocet and a muscle relaxer for her today.

Doing well

2010-03-09T11:14:00.000-08:00

Mom is doing really well. She has an oxygen machine at home that she is only supposed to use at night. Also, she has an appointment with a pulmonary specialist that can hopefully get to the bottom of all this--they still don't know what last week's "episode" was or what caused it. Dad says Mom is a little slow-moving (compared to before last Wednesday) but we are very thankful that this does not appear to have set Mom back mentally.

Will post later in the week about Thursday's appointment.

Mom is going home today

2010-03-05T05:28:00.001-08:00

Mom is being released today. They couldn't find anything wrong with her and are puzzled over what happened the the dr's waiting room. She sounds great, like nothing happened and was walking around fine yesterday. The doctor did increase her steroids back up to 15 mg just as a precaution. He still doesn't think last week's decrease to 10 mg is to blame but thought it was wise not to take any chances.

Thanks so much for your prayers. Dad said yesterday that he knows the prayers are working. He couldn't get over the drastic difference in Mom.

Low Oxygen Levels

2010-03-04T07:05:00.000-08:00

Mom is back in the hospital today, she checked in yesterday evening. When she woke up yesterday, Dad said her legs just weren't strong and weren't working right. She was very shaky and weak. He called her dr but he wasn't available. The nurse told Dad to bring Mom on in. While she was in the waiting room she had a seizure-like episode but they don't think it was a seizure. They think it was due to low levels of oxygen--the doctor does not think it has anything to do with her recent reduction in steroid dosage. In fact, the hospital neurologist doesn't think it has to do with her brain at all. They ran several tests yesterday and did a ct scan last night but we haven't gotten the results yet. Mentally, Mom is doing well. I spoke to her this morning and she was in good spirits and said all the nurses were very nice and taking good care of her. I don't know when we can expect to hear from the doctor or anything. I would just appreciate your prayers.

An Update

2010-02-25T07:11:00.001-08:00

Mom has been doing so well. Her physical therapy is going so well...she is even able to outside, down their steep driveway and walk up and down their street (with the therapist, of course). She has been doing her pt exercises on the days the therapist doesn't come which is great, too.
Dad is substitute teaching again and Mom is doing great on her own. For her own safety, she doesn't not shower if she is home alone but last week she was telling me that she really wanted to wash her hair in the kitchen sink. She was concerned that she wouldn't have time after Dad got home and before my nephew's orchestra concert. I suggested she place a kitchen chair in front of the sink so she could sit down immediately after and she did. It was very freeing for her to be able to do that for herself without help. Dad said her hair looked great, too. :)
She saw an orthopedic surgeon recently who did a bone scan, checking her bone density. He was pleasantly surprised that her bones were in better shape than he expected--considering how long she has been on steroids. He has suggested that she go on a drug called Forteo. She will give herself injections every day for the next year. It has been shown to be the only drug that can repair bone loss. Since Mom is still on steroids and will be for a while longer, he feels this is her best defense against future fractures.
Mom will see her neurologist and vasculitis specialist today. We are hoping they will decide to reduce her steroid dose even more. She has done so well with the dosage decreases lately. She will also learn how to give herself the Forteo injections. I will post again tomorrow with details of today's appointments.

Physical Therapy

2010-01-22T13:13:00.000-08:00

Mom has had a great week this week. She was able to walk (with her cane and physical therapist) down their steep driveway, walk down their street & back and back up the driveway. This is HUGE! You should hear her tell it really...she was so excited about it. She kept saying, "I didn't even get winded."

The fall last November was quite a setback for her but she seems to be doing better now than even before that fall. God is so good. We are just so happy to see Mom's improvement.

Just thought you would want to hear this good news. Thanks for your prayers and encouragement.

Happy New Year!

2010-01-19T12:18:00.000-08:00

Sorry for the delay in posts...my hard drive crashed January 1st which has delayed a lot of things. Also, there wasn't much to really post about before today. Mom saw Dr. Waltuck today (her vasculitis specialist) and he, like the rest of us, was very impressed with Mom's progress. As of tomorrow, she will be on 15 mg of prednisone a day. He will see her again in a month to discuss reducing her dosage even further. We are very encouraged by how well Mom is handling the lower doses of steroids and have hope that one day she may even be off of them completely.

Details about Mom's progress: She no longer needs her walker, is getting up and down out of bed and out of chairs much more easily AND on her own. She has in-home therapy that comes several times a week and she is enjoying the exercises her physical therapist is teaching her. She is even doing them on her own like she is supposed to.

Dad said today that he feels like Mom really does want to get well. I agree. There is something that has changed in her that seems to be causing her to push herself. We are all so thankful for that.

We are also very thankful for all of you. You have been so faithful in your prayers for Mom and for our family and it is evident in how well things are going. We are hopeful that 2010 will be an incredible year!

Christmas

2009-12-30T06:07:00.000-08:00

We had a wonderful Christmas at Mom & Dad's house this year. Mom seemed to feel better and she looked a lot better than she did when they left Kentucky last month. The picture below is taken in the new sunroom Mom & Dad had added to the house. just in time for Christmas...literally. The painters and carpet-installers were there while we were driving down Wednesday. It is beautiful and was the perfect place to eat our big meal, open gifts or just hang out together. It also kind of became a playroom for Lyla while we were there!

back: Seth, Lyla, Ashley, Kendall (holding Zoe), Alison Joy, Jesse, Jessica, Justin, Jared, Alison, Andrea, Ken
front: Dad & Mom

I will be posting more pictures later this week at: The Martin Messenger

No Change in Mom's MRI

2009-12-21T11:22:00.000-08:00

Mom received good news the day after her MRI. The doctor so no change since the last one which was done this summer. She will see that doctor again in January. She also saw Dr. Lava, her neurologist, who feels like she is doing pretty well. She continues to have various therapists come to the house and seems to be getting up and down more easily on her own. She tripped going into Steak & Shake last week but THANKFULLY was no injured AT ALL. We are extremely glad about that. Her back pain seems to improve with some ibuprofen which makes me think it's muscular and not related to the compression fracture. She will follow up with an orthopedist soon, though.

We are all looking forward to being together for Christmas this week...Mom is especially excited, of course. Mom & Dad have been busy getting things ready for a full house for a few days.

Merry Christmas to you and your family and God Bless.

MRI Today

2009-12-09T05:48:00.000-08:00

Mom is having an MRI today at 2 pm. Please pray that it looks the same or better than the last one she had which was in June. She will see Dr. Waltuck at 1 pm tomorrow to discuss the results.

Also, a Home Healthcare representative visited yesterday and evaluated Mom's needs. She is suggesting the following for mom: a nurse to come and check her blood and physical & occupational therapy. Mom is also experiencing severe back pain again and struggles to get out of bed. Once she is seated or standing, she seems to be fine but the "sitting up" causes her a lot of pain. So, a hospital bed has been ordered so that she can get up more easily. She begins physical therapy today and will also follow up with a back doctor to make sure the pain is just the kyphoplasty healing.

Back in Georgia

2009-12-02T12:15:00.001-08:00

Mom & Dad had a smooth trip back home last weekend. Thank you for lifting them up in prayer.

After arriving home, though, Mom seemed to have some trouble finding the leg-strength to get up from a seated position. She had this problem a few times while up here in Kentucky but we always seemed to do it together. On Sunday afternoon my sister, Andrea, was able to work with Dad in getting her up but Sunday evening, she slid down to the floor of their bedroom and Dad had to call 911 to get some help with her. Three fireman came and helped her back into the bed. Needless to say we were more than a little concerned with this drastic drop in her strength.

Andrea & Dad took Mom to her appointment with Dr. Waltuck Monday afternoon. After reviewing all of the events of the past month and taking into consideration the rough weekend she had, he decided to keep her medication as it is for another two weeks. At that point, he wants to do another MRI & see her again. He believes that the fall, the surgery, the bleeding ulcer, her having been away from home, etc, could be part of her problem. He wants to see how she does once all the other stuff is out of her system and now that she is home.

Unless something changes, I will post again with her MRI results and the doctor's thoughts in two weeks.

God Bless.

p.s. I have to share a side story from today. Today Lyla told me her back was hurting and said she needed me to put a patch on it. She knew her Mimi wore a patch because her back hurt. She doesn't miss anything.

On the road again...

2009-11-28T10:49:00.000-08:00

After a good week at home with us, Mom & Dad are on the road back to Georgia. Unfortunately, because of the Thanksgiving holiday week, the physical therapist was unable to visit the house but Mom had a great session with the occupational therapist. We were also visited by a nurse a couple of times which was reassuring. They tested her blood--both her hemoglobin level and sugar levels were normal.

Mom is doing well. The back procedure seemed to have worked. In the past few days, she has complained of back pain but it isn't the same as before. I think she might have a strained or pulled muscle from using different muscles to get up and down. She is using a walker...most of the time but is beginning to feel stronger. She hasn't felt like using the walker lately but I made her (that went over well with both parents) because I didn't want to risk another fall.

They left Kentucky around 11 this morning. The Occupational Therapist suggested they stop about every hour & a half so that Mom can stretch so the trip may take a little longer than the usual six hours.

I will posting more details & pictures of their visit here in Kentucky at The Martin Messenger.
Here's a picture from Thanksgiving, though.

Also, Mom sees her Vasculitis specialist, Dr. Waltuck this coming Monday. I will be sure to let you know what he says. Thanks for your prayers and hope you had a wonderful Thanksgiving!

Mom is heading home...well, my home!

2009-11-20T10:56:00.000-08:00

Mom is doing much better today. She isn't in any pain and is moving around much easier. Time to move my car out of the garage. Can't wait!

No pain but some confusion

2009-11-20T05:30:00.000-08:00

We think Mom's back pain is gone. She is able to move around much easier and isn't complaining of the pain. Also, the endoscopy yesterday looked the same as last week--they found an ulcer but it was not bleeding. They will keep her on some stomach-coating medicine until she can follow up with her GI specialist in Atlanta.

Mom was very confused all day yesterday. She knows who we are but isn't sure where she is or what's going on. It is difficult to talk to her because she rambles on about things that make no sense. The doctors/nurses say that could be due to the anesthesia. She was put under two days in a row and could still have it in her system. She is off the pain medication now so hopefully today will be a better day.

Also, Mom and Dad will be staying up here for Thanksgiving. We are moving the feast to our house so it will be easier for Mom and are looking forward to both families celebrating together. In spite of a rough year, we still have so much to be thankful for.

Surgery & Two More Transfusions

2009-11-19T05:58:00.000-08:00

Yesterday morning, the found that Mom's hemoglobin leveled had dropped significantly again causing her to need 2 more pints of blood. Also, she is having another endoscopy right now so they can check to see if the ulcer is bleeding again.

As for her back surgery. Yesterday was a long day of waiting. Mom was asleep almost the entire day which was actually good because she has to keep her arm perfectly straight during the transfusions and when she was awake, she was moving all over the place and setting off the machine. I finally asked the nurse if I could push the "restart" button instead of calling him every time. He said he didn't mind doing it but then the next time I called he said "you push the button." After a while when Mom would hear the beep, she would immediately straighten her arm and say, "sorry, honey."

First we were told the surgery would be at 10am then "late morning" then 1pm then around 2pm we were told 5pm. Well, they finally started the surgery at 6:15pm. The surgeon came to see us in the waiting room around 6:45 to tell us he was done. He told us that the bone was very soft, as they suspected.

She was knocked out from the anesthesia for the rest of the night last night but Dad said she was wide awake and alert this morning but still confused. As I said, she is have an endoscopy right now. I am glad it's being done early because she hasn't eaten since Tuesday night. They are supposed to get her up at least 3 times today. The internal medicine doctor told us yesterday that their goal is to release her by the weekend. We would really like that, too, as long is she is more mobile and the GI problems are under control.

Thanks for all your prayers, well-wishes, calls and even visits. I ran into an old friend at the hospital yesterday and he said something about how that stinks that my parents are not home where "their" friends can see them. I was happy to tell him that MY friends and Seth's family have stepped in by visiting them and even sending flowers. That has meant so much to them and also to me. God is good and continues to amaze me.

Surgery this afternoon

2009-11-18T05:03:00.001-08:00

They have moved her surgery from 10 to 1ish. She will be unable to eat before the surgery which would make anyone irritable. Please pray that Mom has a good day and of course, that the surgery is successful. We are hoping this procedure takes care of the pain which then causes her to get back to where she was before this fall. She has not gotten to spend much time with Lyla (the main purpose for their trip) so hopefully, she will be released soon and get a few days home with us before heading home.

Thanks for your prayers. I will be away from the computer today but will post an update when I can.

Surgery is Wednesday at 10 am

2009-11-17T05:46:00.000-08:00

Thanks so much for praying for Mom and for your support of our family. I had kind of a rough night with Mom on Saturday. She just gets confused sometimes and isn't herself. It's hard to take. Last night, I hung out with her so Dad could do some things he needed to do online and also so he could spend some quality time with Lyla. I am thankful for the time Mom and I spent together. She had moments of confusion but not like Saturday. We watched some of her favorite shows then flipped channels and watched the last hour of Dancing with the Stars. I sat on the side of her bed and she scratched my back. I joked about lying with her in the bed and going to sleep and she thought that would be a funny joke to play on Dad when he came back. :) I did lean back with her a little while. It was a good way to end my day.

Her surgery has been scheduled for 10 am tomorrow. We are praying that this procedure is so successful that her pain actually goes away immediately. That's not unrealistic either. The sooner she gets off all the pain meds, the better.

Hope you are having a great day!

Surgery to be scheduled

2009-11-16T06:27:00.000-08:00

Mom had a pretty good weekend and has been getting up and about more frequently. She is also sitting up for longer periods of time which is good. Dad spoke to Mom's vasculitis specialist in Atlanta this morning and he agrees with the neurosurgeon that surgery is the best option for Mom.

Here is an article I found that discusses Mom's compression fracture and also the surgery options.

Vertebroplasty & Kyphoplasty

I will let you know when the surgery has been scheduled. It is supposed to be a pretty simple procedure that "could" take away her pain immediately. The surgeon said it takes about an hour from start to finish and can actually be done as outpatient.

The Weekend

2009-11-15T05:06:00.001-08:00

Mom's back seems to be feeling much better. No decision has been made about possible surgery. We are hoping the neurosurgeon here in Lexington can talk to Mom's neurologist in Atlanta before proceeding. Mom has been very confused this weekend. We aren't sure if the pain meds are to blame or if the confusion could be due to her recent steroid dose reduction.

As always, thanks for your support of our family.

New CT Scan

2009-11-13T20:55:00.000-08:00

So, it's a good thing Dad and I pushed for her to stay another day because a pain specialist was brought in and ordered another CT scan. (Apparently, the one done the evening of the fall was not of the entire back.) The new scan was done this morning and showed a "compression fracture." Can you imagine if they had released Mom two days ago?

The pain management specialist felt like pain medication and physical therapy could be affective but when we spoke to the neurosurgeon this evening, he seemed to think surgery would be a better option for Mom. He wants to see how she handles the pain meds and physical therapy over the weekend and then evaluate her again.

That's it for now. Thanks for praying.

NO Early Release

2009-11-12T08:14:00.000-08:00

They tried to release Mom from the hospital yesterday because the ulcer is no longer bleeding and "that" is under control. However, she is still on LOTS of pain meds because of her back pain and can't sit up, stand or walk without feeling nauseous. Argh. So, when they said she could go home, we said, "...um, no she can't." They planned to keep her another day and would evaluated her today. They are going to do more test on her bowels today and also make sure she gets the two sessions of hard physical therapy today, too. We really want her to be able to move around more easily before we feel like we can handle things on our own. Dad is also going to ask about lessening her pain medication to see if the nausea subsides.

Transfustion Monday...Endoscopy Tuesday

2009-11-11T04:55:00.000-08:00

PART 1 (Written Monday but not posted...oops)

Mom's pretty much the same. They put her endoscopy off from this morning to this afternoon. Then had to move it to tomorrow because the doctor had to go home sick. Her back pain is under control and they plan to start physical therapy tomorrow after the endoscopy. They are giving her a transfusion later this afternoon because her hemoglobin levels are so low. My friend, Teresa (a nurse), said that a transfusion might be one of the best things for her because getting that new blood should make her feel better pretty quickly. So, pray that goes well and the endoscopy happens tomorrow.

PART 2

I was able to spend the day with Mom yesterday and Dad was able to go for a good run. Mom seemed to be doing better. I think the transfusion really helped. They did find ulcers yesterday but they were not bleeding anymore. The doctor said prilosec should prevent them from bleeding again. She was supposed to start pt yesterday but was in too much pain. She did get up a couple of times, though, so that's a start. The doctor said she could be released today but I doubt that since pt didn't get to do much yesterday. She will have pt at my house for a few days until she feels up to the trip home.

That's it for now. Sorry for not posting yesterday

Endoscopy today

2009-11-09T05:10:00.000-08:00

They have Mom's back pain under control while they run tests on the suspected reason for her fall. She is having an endoscopy this morning to check for bleeding ulcers in stomach (most likely caused by the steroids she has been on for so long). They think the bleeding has caused her hemoglobin levels to drop which has been causing her to feel light-headed after being seated for a while. Once they get that under control, they will begin physical therapy and make her back pain the priority. Thanks for the prayers. We really do feel them and appreciate them.

Fall in Kentucky

2009-11-07T19:32:00.000-08:00

Mom fell today at my house here in Kentucky. She had been seated through a whole movie and we believe she was light-headed/wobbly when she stood up and then fell. EMS came and took her to a local Ambulatory Center where they did a CT Scan and thankfully found no fractures or new damage.

Unfortunately, she still cannot sit up without severe pain so she has been transferred to a local hospital where they will keep her for physical therapy and treatment. The goal is to get her mobile again so that she is able to travel to Georgia without pain/discomfort. Once back home, she will see her specialist to try to find out why she gets these weak spells as often as she does.

Thanks for praying for Mom, Dad and our family. This has been a long year for all of us. God continues to be faithful and we know He is in control and by Mom's side every step of the way.

Dosage Change

2009-10-06T11:09:00.000-07:00

As of yesterday, Mom began an increased dosage of the drug Methotrexate from five pills to eight pills (four in the morning and four at night). If she is able to tolerate the increase of Methotrexate then they will begin to reduce the steroids (Prednisone). He will still have her take it every day and not do like it was reduced before. Before, it was reduced from 30 MG a day to 15 MG every other day. He thinks that her body could not take being without any for a day. The doctor considered prescribing Cyclophosphomide(Cytoxan) for Mom. It has been used in treating some Wegner's Vasculitus. But, he thinks it is too toxic for treating Mom's Vasculitus.

Mom's next appointment is scheduled for Monday Oct. 26 at 1:40. At this point, Dr. Waltuck will evaluate how she has handled the increased dosage and hopefully make a plan for reducing the steroids.

The Dr Called Tuesday

2009-09-24T05:45:00.000-07:00

This email is my dad's summary of his conversation with Mom's Vasculitis specialist:

Dr. Waltuck called me late today. The protein, Amyloid, is not only in her blood stream but some spots are on her brain. This protein is thought to cause Alzheimer's disease. Drug company are now researching ways to reduce this protein which could reverse the Alzheimer's effect. He will present Mom's condition to a panel of doctors tomorrow without using her name. Then, Friday, he will go over slides with Dr. Hunter, who analyzed her biopsy. He has already emailed the doctor at the Cleveland clinic. This doctor in Cleveland has had some good results with Cyclophosphomide(cytoxan) in some patients but none in others. This medicine can be very toxic and you have to be very careful about what is done. But he wants to reduce the steroids as quickly as possible due to the side affects. This is mostly what I got out of our conversation. Hope this is of some help to all of you. Will not know anymore until he gets back with me.

My words now...

All of this began close to a year ago. Mom came down with the flu the day before she was supposed to get her flu shot for the season...and the rest is history. So, Dad called the doctor's office yesterday to make sure Mom could get the flu shot with everything she is on right now and the doctor said YES. Dad got his flu shot yesterday and Mom is getting hers tonight.

Appointment with the Specialist

2009-09-21T11:47:00.000-07:00

Below is my brother, Ken's summary of Mom's appointment with the Vasculitis specialist. He and my sister, Alison, were able to go with Mom and Dad to the appointment. They were all felt like the doctor had done his homework and were encouraged that he was going to do even more research before just "trying" something else.

Ken's Summary

Mom’s case is very rare – less than 10,000 documented cases – due to the presence of amyloid protein deposits in the blood vessels of her brain. The deposits of amyloid protein are likely the catalyst for causing Mom’s vasculitis. Mom’s body perceived the amyloid protein deposits in the blood vessels of her brain as harmful and, therefore, began to attack the deposits which resulted in the inflammation in the blood vessels (vasculitis). Consequently, the presence of the amyloid protein complicates Mom’s treatment because simply addressing the inflammation in Mom’s brain doesn’t eliminate the circumstances that caused the autoimmune reaction of Mom’s body.

The vasculitis specialist, Dr. Waltuck, which Mom met last Monday (September 14, 2009) will be consulting with other doctors to determine the best course of action regarding Mom’s medications, treatments, therapies, etc. He stated that the initial objective will be to decrease, if not eliminate entirely, Mom’s need for Prednisone (which has serious side effects after long-term use) by using different medications to control the inflammation in Mom’s brain and to at least maintain Mom’s current stable condition. Decreasing or eliminating the Prednisone should minimize some of the side effects that Mom is currently experiencing such as fatigue, weakness, irritability, loss of appetite, and weight gain – particularly around the face.

Apparently, the report following the February biopsy of Mom’s brain revealed the presence of amyloid protein but previous doctors either overlooked it or didn’t recognize its significance to Mom’s condition.

Mom's New Neurologist

2009-08-26T11:21:00.000-07:00

Dad's email concerning Mom's appointment with the new neurologist last Friday, August 21st:

We had a good visit with the new doctor, Neil Lava, today. He would like to possibly put Mom on another drug to work with the Methotrexate called Cyclophosphomide (cytoxan). He also said that he may recommend increasing the dosage of Methotrexate. But he wants to wait until after the appointment with Dr. Jonathan Waltuck (the Vasculitis specialist) before any change is done. He knows Dr. Waltuck and they will confer about Mom's treatment. He wants to decrease the steroids because of all the side effects. So, we are hopeful that after the next visit we will have a different plan.

We are all encouraged that both doctors will be working together--what a BRILLIANT idea! Mom's appointment with the specialist is September 14th and I will let you know more after that.

As always, we appreciate your prayers.

Not much to report...but I will anyway

2009-08-01T12:48:00.001-07:00

I haven't said much lately because there really hasn't been anything to say. Mom is doing pretty well. She has an appt at the end of the month with a different neurologist because Dr. K feels like she has done all she can do and wants Mom to get a 2nd opinion. Each time Dr. K has decreased Mom's steroids, we have seen a change...all of us, including Mom. So, it will be good to see what another doctor says. To be honest, I am looking more forward to hearing what the Vasculitis Specialist says when Mom sees her at the end of September.

As for how well Mom is doing, she and Dad (a longtime runner) have volunteered for several years at the Peachtree. Mom was able to do that with Dad this year and enjoyed it. She got a little tired but was able to walk back to their hotel and wait for Dad to finish the race. Later that week, they traveled up here to Kentucky for Lyla's 2nd birthday party and then just last weekend, she and Dad when to a family reunion in North Georgia. She may get tired a little easier (due to her medication, we believe) but she is still doing really well.

I will write again after her neurologist appt at the end of the month, unless something changes before then.

Thanks for continuing to pray. Have a wonderful weekend!

The Past Month...

2009-04-22T13:18:00.001-07:00

I have been "called out" for not posting on this blog and I would like to apologize. To be honest, there really just hasn't been much to report and I have to admit that I think that's a good thing! Mom is doing so well! She started physical therapy a few weeks ago at a different facility. She is so pleased with her therapist and is feeling more and more confident every day. She is working on her balance and control and still uses a cane. This past weekend, she was able to attend an annual event at Brenau College (her alma mater) where she reunited with several sorority sisters and friends...and even got her picture in the local paper. :) She saw her neurologist Tuesday and was once again encouraged by the appointment. I misunderstood something before...she continues to be on steroids along with the new drug, Methotrexate. However, over time, they will be decreasing the steroid dosage while increasing the other's dosage. The doctor told Mom that the swelling in her face, due to the steroids, should go down as they decrease her dosage. I was so proud of Mom's outlook as she told me "I don't mind if my face is full as long as I don't have any more seizures." She truly has had the best attitude through all of this. She is eating well, drinking only water and making every effort to do her physical therapy exercises just as she is instructed. I am looking forward to her visiting me soon so we can go to a Mother's Day Luncheon at my church. There will be so many people there that have prayed for her and will be happy to see her for the "walking miracle" that she is.

2009-03-24T11:56:00.001-07:00

I am sure you will forgive the delay in posting updated information. It has been a busy week but Mom is handling it all really well. It is hard to imagine that just a week ago, she was on her way to visit her mother who was sick.

Last Wednesday, Mom saw her neurologist who felt like she is doing really well. The doctor is taking her off of the prednisone and putting her on Methotrexate which is a common treatment for vasculitis. Mom will continue to be on Keppra (anti-seizure medication) for the rest of her life. The doctor has decided that Mom will only require physical therapy.

While in the rehab center, Mom played some Wii games and loved them. So, in the name of "therapy," Mom and Dad bought one. I am sure the Wii was not created for therapy purposes but several games really are good exercises for the brain. Mom is even better at some of them than we are. We are all having fun with it and have also enjoyed creating mii characters for everyone in the family.

Grandmother's funeral Sunday was beautiful and she would have loved it. My brother, Ken, did the eulogy, truly capturing the spirit and personality of Grandmother while making us all laugh and cry.

Thank you so much for your continued prayers. We, too, are praying for you that God will bless you as well.

All 4 Kesler children: Phillip, Susan, Joyce and Gary

Grandmother is Home

2009-03-19T08:32:00.000-07:00

Mom, Alison & Grandmother, May 2008

Joyce's mother, Margaret Kesler went to be with Jesus while she slept peacefully last night. We know she and her husband, B.A. are happy to be together again. My sister, Andrea, suggested that Grandmother was simply waiting to see Mom as they were able to have a good visit Tuesday afternoon. Grandmother was 90 and had lived a good life for the Lord. She loved her family very much and was proud of us all. We are all handling it rather well, including Mom. Our family appreciates your prayers throughout the coming days and weeks.

More news of Mom's appointment with the neurologist is to come later.

Going Home

2009-03-17T06:47:00.000-07:00

Today is the BIG day that we have all been waiting for...Mom gets to go home! It has been a long week for her. Since finding out that she only had more week at the rehab center, staying there has been that much harder. She sees her neurologist tomorrow so they can go over the plan of action.

While Mom is excited about getting to go home, her heart is also heavy for her mother. While she was in the hospital last month, her mother was in a different hospital suffering with a blockage in her gallbladder. The pressure from the blockage was relieved using a stint but Grandmother has also been diagnosed with pancreatic cancer and does not have long to live. So, Mom and Dad are going straight from the rehab center to visit with Grandmother at her home. Please pray for Mom this afternoon as she sees her mother who is quite thin and weak these days. Please also remember my grandmother in your prayers as well--pray for her to be comfortable and comforted right now.

Prayer for Patience

2009-03-14T08:06:00.000-07:00

Please pray for Mom's patience these next few days. She just really wants to go home and is struggling with depression. We have all been trying to call her through the day and give her encouragement but she just seems to have a negative attitude right now. Also, if you are a close friend, she carries her cell phone with her and I am sure she would love to hear from you.

Meeting with the Doctor

2009-03-10T10:41:00.000-07:00

Mom, Dad, Andrea & Ken T met with Mom's rehabilitation doctor this morning. He told them that they believe the vasculitis is a byproduct of the encephalitis (viral infection) she had last year. The immune system was attacking the lesions on her brain and also the blood vessels. She is currently on high doses of prednisone (a steroid) and will be on some sort of strong steroid for at least the next six months, at which point another MRI will be done to see how she is doing. She is also taking aricept (also used to treat alzheimer's) to help with her cognition and short-term memory. She is no longer on the anti-seizure medication as the seizure was a result of the swelling. Now that she is on steroids, the swelling/seizures shouldn't be an issue. The really good news is that she will get to go home next Tuesday. Once home, she will not require home health care as she did last time but will start outpatient therapy right away.

The doctor pointed out one big difference between last time and this time. In November, she had trouble "processing," meaning it was more difficult to make her body do what it needed to. However, this time around, he said she is perfectly fine from the neck down and has little trouble following instructions. One downfall in this is that she "thinks" she can do anything and doesn't like to be told not to. This explains why she is much more frustrated this time around--she thinks she is fine and doesn't like being treated as a child, since she is an adult. She doesn't see that she jumps from topic to topic and can't stay on one task. Her short-term memory still isn't what it should be and her order of recent events is a little off. She speaks and moves very well but will just need more work to get her cognitive abilities up to par.

A Little Background...

2009-03-09T07:45:00.001-07:00

Mimi became sick in October of 2008. Her symptoms were flu-like but medicine didn't seem to work because she wasn't getting any better. She went to the emergency room twice in a 6-week period. The second time she went to the ER was for a severe headache (Saturday, November 15, 2008). After an inconclusive cat scan, she was diagnosed with a migraine and sent home. By Monday morning, she was incoherent and was back at the hospital. Her MRI showed lesions on her brain and her spinal tap had signs of infection. The doctors began treating her for a brain infection with steroids. She stayed three weeks at a rehabilitation center where our family spent Thanksgiving together and was home by mid-December.

She received some in-home therapy and then went back to the rehabilitation center for some outpatient therapy. She was released from occupational therapy rather quickly and could handle most day-to-day activities. Mimi's physical therapy was going well, as was her speech therapy. In fact, she had recently been released from all therapy by her neurologist. However, she had been taken off all steroids and other medication and had regressed slightly in those few weeks. The doctor assured us that this was normal because she was "on her own" now but also stressed the importance of taking her off of steroids, as they are not intended to be taken long term.

Mimi enjoyed a nice Valentine's Day weekend with my dad but was once again incoherent Monday morning. While Dad was getting her ready to go to the hospital, she had a seizure. Her MRI showed more lesions but this time, the spinal tap showed NO signs of infection. The doctors were stumped. After much discussion, everyone agreed that a brain biopsy was the only way to effectively figure out just what was causing all of the problems. So, Friday, February 20, the brain biopsy began at 10 am and the surgeon came to talk to us around 11:45. The preliminary results looked good. The surgeon said the brain and its vessels were very swollen, leading him to believe it could be vasculitis--an inflammation of the blood vessels of the brain. If this is the case full recovery can be achieved after 6/12 months of strong steriods and other meds. Slivers of her brain were sent to 7 or 8 specialists and we expect to learn the test results tomorrow, Tuesday, March 10 in a meeting the doctor is having with Dad, Andrea and Ken (Joyce's oldest daughter and her husband).

Mimi has been back at the rehabilitation facility for a little over a week and is doing well. She is walking better and talking well, too. I don't think she fully understands why she is there again and she is definitely beyond ready to go home. I can't imagine how frustrating it all is for her. I keep trying to remind her that she is being taken care of by people who know best how to get her well quickly so that she can go home...so she should just try to be patient with them. She is such a good-natured person, I have no doubt that she IS very kind to everyone; she just vents about it to us. There's nothing wrong with that.

Dad has been so strong through all of this. It has been hard on all of us to see her so close to full recovery just a month ago...just to see her back at square one. But I know it is ten times harder on Dad. I am so blessed to have parents that love each other they way mine do. In fact, they are celebrating 44 years of marriage this summer. They have taught me so much about marriage and just what unconditional love means. I believe that this has made their love for each other grow and will continue to bring them closer together.

Thanks for caring so much about Mimi. Thanks for praying for her and for all of us. God has always been faithful and we know He will continue to be.