Day 94

Hello Everyone,

My dad began to feel a bit worse as he neared the tentative check out date of December 24th. They kept him in the hospital to administer a second round of the plasmapheresis treatment. This second round seemed to help quite a bit. He's gone through a lot of ups and downs during the last several months. He gets better, plateaus then gets worse. Hopefully, the downs are over and it's only ups from now on.

Last night, Wednesday, January 7th, my dad was released from the hospital. He will continue Physical Therapy three times a week as an outpatient. He can stand, open a water bottle, snap his fingers, and even walk unassisted for a few paces. He mainly gets around with a walker or crutches. Naturally, since he's stubborn and impatient, he tries to struggle around without the crutches/walker when he thinks he can. He's very unstable without support of some kind however. One day about three weeks ago, he was on a day pass from the hospital and was walking in his garage (without any support equipment) and he lost his footing and fell. He bruised his ribs quite badly with the fall and since has been slightly more careful when walking around.

I spent most of the day driving him around to do several errands. I am out in L.A. visiting for a week. I had to insist that I drive today - he doesn't have great control of his feet, so I don't want him to drive around. As I'm typing this, I am hearing him drive back from the gas station - he snuck out. Grr. He looks a lot better than when I last saw him in mid-October. He's gained back most of the 30 lbs that he lost while in the hospital. He is still very shaky, but that seems to be a lingering side effect of the plasmapheresis treatment. He still has the catheter in his chest - his last plasmapheresis treatment is tomorrow.

It will take some time for his nerves to heal and for his coordination to return. He said that before he got sick, he could do a bicep curl with 45 lb dumbbells and now he struggles with 8 lb weights. In PT, they also work with him on heel raises. He sits in a chair and puts a 12 lb weight over his knee and tries to lift his foot up onto his toes. His ankles are very weak - the extremities are the last to heal as they are the first to deteriorate with this ailment.

Right now, the plan is to just take it easy, go to the PT sessions, and build strength back up. He's still interested in taking some Yoga classes for the overall fitness benefits. His body is very stiff and all of the stretching done in Yoga would be perfect for him. It's just a matter of pulling the trigger and going to some places to try out their Yoga classes. I worry about him with the "taking it easy" directions from the doctors. He's been known to be stubborn and impatient at times. I had to insist several times today that I would drive him or otherwise help him in situations.

It is good to see him though and he is doing so much better. It's been over 3 months since he was first checked into the ICU at the hospital. As these cases go, he's been very, VERY lucky. Some patients are in the hospital for several months. Some patients must be put on a ventilator and other forms of life support at the beginning stage. I believe it helps that he's in relatively good shape. He's always been athletic. His eating habits have improved over the years. He takes vitamins/mineral supplements everyday.

He is in the fast lane on Recovery Road. I recently became engaged and told my dad that he needs to take it easy and practice his walking for the big day. I'm very excited to get to walk with him and I hope he will viewthis traditional duty as additional motivation to reach a full recovery.

To all of his supporters, friends and family: thank you so much for all of your continued support and well wishes. It has made all the difference in his speedy recovery. He is very blessed to have you all in his life and I believe he knows that too. He's not big on emotional expressions, but I know that he appreciates all of you and was very touched to receive your emails, phone calls and cards. My brother, Matt, and I truly appreciate all of your support and kindness as well.

Have a Healthy and Happy New Year!!!
~The Dymond Family

Day 65

Hello Everyone,

My dad is feeling so much better.  He's been doing very well in physical therapy and has made large improvements.  He can get to and from the bathroom completely on his own.  He can stand and lock his knees out fairly well, although not 100% yet.  He's been walking along the parallel bars and achieving longer distances with each attempt.  

Weekends are typically light days for physical therapy.  Saturday has one session and Sunday is a day off.  My dad was able to go home for the day on Sunday!  He loved it!  This weekend, he will go home on Saturday morning and come back on Sunday evening.  I'll bet he's already making plans of how to fully take advantage of the home time.  

Best of all... they've given him a tentative check out date!  Assuming he continues to progress at his current rates, he'll be able to go home and continue his physical therapy on an outpatient basis by December 24!!  Great news!

My dad is able to get around using a walker for extra support.  They have given him a special model of walker that my dad calls a "turbo walker."  It has 4 wheels and hand brakes.  He said it works very well on carpet as well as hard floors.  He takes this walker home with him and it helps him get around.

How great is it that he'll be able to go home before the end of this year?!  How exciting!!

Thank you all again for all of your support.  We recognize it an appreciate it.

~The Dymond Family

Day 56

Hello Everyone, 

I'm sorry I have not written in a while.  I spent a lot of time with family over the Thanksgiving break.  

I am happy to report that my dad also had a great Thanksgiving dinner away from the hospital!  The doctors gave him a day pass and he was able to spend the day at home and at Naz's sister's house for dinner.  

In other good news, my dad is able to use the restroom facilities without assistance.  They have some special equipment for him to hold onto with his upper body strength and he has his own wheelchairs - manual and electric!  

He also reported that physical therapy is going very well!  He said he's been walking further and further along the parallel bars with a PT staffer trailing him with a wheelchair just in case.  He also said he can operate a walker all by himself.  He sounded very happy with his recent accomplishments.  

It's been almost two months since he was first checked into the hospital.  It seems like it's been an eternity.  He is on good terms with all of the nurse staff and orderlies and he even gives his newspapers away to neighbors to read.  Things are looking up.  

If he continues taking things slow and gradually getting better, he may be able to go home within a few more months!  Once he's able to really get around on his own, he can transition to "home study" with several weekly visits to an outpatient PT program.  

Thanks again for all of your well wishes!  Keep checking back for more posts.  Please email me with any questions.  

~The Dymond Family

(Jenn)

Day 45

Hello Everyone,

Today, my dad had his 4th round of plasmapheresis.  He has not noticed any significant improvement but has also not noticed any decline.  He feels as though he has been on a plateau since they began the plasmapheresis treatment last Friday.  His days are filled with physical and occupational therapy, cruising the hospital floor in a motorized wheelchair, and trying to catch sports on TV.  

He does 6 sessions of 45 minutes with PT and OT.  Most of the exercises are done in the bed while others are done in a chair.  If he is feeling well enough, they have him try to stand and even walk a bit.  He cannot do anything unassisted yet.  The walking is done along a set of adjustable parallel bars with a PT person walking behind him with a wheelchair in case he loses his footing or gets too tired.  

My dad has his very own hospital-issued motorized wheelchair.  He operates it with a joystick, it can decline/adjust electronically and can do a 360-degree turn in its own axis.  It tops out at 15 mph and he's only run the chair into the walls a couple of times - hee hee.  And he calls me a "lady female" driver??  He cruises all around the rehab wing and the hospital.  He spends about an hour to an hour and a half a day cruising around to see the sights and avoid boredom.  

The doctors advise him to stop paying so much attention to his level of numbness.  My dad says sometimes the numbness increases and sometimes it goes away.  The doctors say the numbness factor is not an earmark of any progress.  They tell him to look at his progress in PT to give an indication to how his body is fighting off the GBS disease.  My dad has noticed (and the PT staff has as well) notable improvements in his strength and stamina.  He also has not had any shortness of breath in the past week.  He had been having trouble breathing after very small amounts of activity.  Last Wednesday, after the pool therapy, he felt as though he was having an asthma attack.  He has not been back in the pool since, but he cannot go into the water until they remove the catheters needed for the plasmapheresis.  He may get to go back for pool therapy on Monday. 

He was really looking forward to spending time in the pool because he thought that the weightlessness would help him walk in the water.  But he said he has zero ankle strength and at any point could find himself walking on the side of his foot and ankle.  Remember, he is still almost completely numb in the hands and feet.  He is moderately numb from the waist down and from the shoulders down to the wrists.  

I asked him today how he was feeling and he said, "I'm in pretty okay good spirits."  

I also asked him if he had anything he'd like me to add to today's posting and he said the following:

"I'm looking forward to watching the Texas Tech vs. Oklahoma game on Saturday.  I think Texas Tech is going to win by probably 12 or so points.  Every once in a while, I get a craving for odd things, like one Arby's potato cake or homemade pico de gallo.  Austin came by last night with some Italian pizza from CiCi's and it was delicious, but I could eat only one piece before I got full.  I saw previews for the movie Australia and it looks pretty good.  I'm glad I don't get to surf the net so much so that I don't have to see how bad the stocks are doing.  In the short term, I'm looking forward most to being able to get to the bathroom on my own or even sit up in the bed on my own.  I may be able to get a day pass from the hospital to go off campus for Thanksgiving, but we'll see how I'm doing next week.  I appreciate everyone who has been following Jenn's blog and I'll let you know when I'm feeling up to phone calls."  

He sounds like he's doing much better!  I had asked him if he had any messages to send out over the blog, and of course he said no.  So I asked him some questions, and look at all the stuff he had to say!  He just doesn't like to call attention to himself so much.  

As always, thank you all so much for keeping The Old Man in your thoughts and prayers.  

~The Dymond Family

Day 40

Hello Everyone,

My dad is on his second day of plasmapheresis.  This procedure cleanses the blood that houses the attacker cells that are damaging his nerves.  He is feeling very downtrodden and weak.  He is low on energy and it is difficult to stay positive when you always feel bad.  They can give him medication for the pain - all he needs to do is ask for it.  

I have some good news.  My boyfriend, Corey, and I hosted our 2nd Annual Chili Cookoff tonight.  The way the cookoff works is that anyone can compete, but each batch of chili has a $10 entry fee.  Competitors can bring as many crock pots of chili batches as they want, but each batch costs $10.  You do not need to prepare chili to come to the Cookoff.  Non-competing guests are asked to bring a side dish or beverage to share and encouraged to donate.  We had a turnout this year of 25 guests and 6 batches of chili.  Each guest voted but could not vote on their own creation.  The rules state that the winner gets to choose which charitable organization would receive the collected donations.  Last year, Amanda and her boyfriend, Chad, won the Cookoff with their "Chamanda" chili.  They sent the American Heart Association $100 last year.  

This year, I am proud to announce that my chili creation, "Sweet Revenge," won the Best Chili vote!  We collected $120 which was submitted online tonight to the GBS/CIDP Foundation International.  Yay!  Here is their website:http://www.gbs-cidp.org/

Thanks,

~The Dymond Family

Day 38

Hello Everyone,

My dad is having a difficult time in rehab.  He has been feeling weaker and he said he feels that the numbness is spreading.  The doctors had given him a second 5-day round of IVIG (intravenous immune globulin) which ended yesterday or the day before.  My dad can't talk for very long on the phone, so I'm unable to get a lot of good information.  

The doctors are not confident that the second round of IVIG is working.  They will begin the plasmapheresis treatment.  The plasmapheresis treatment is the removal, treatment, and return of (components of) blood plasma from blood circulation.  The aim is to reduce the amount of autoantibodies in his blood that are attacking his nervous system.  The Guillain-Barre Syndrome is an autoimmune disease where the autoantibodies in the blood can attack other necessary functions in the body.  The doctors will administer the plasmapheresis for 5 days.  

His spirits are lower now.  He feels as though the weakness and numbness is spreading and that it will keep attacking his body until it kills him.  He is depressed and afraid.  He isn't one for positive thinking - he chooses to expect the worst and if it never happens then it's a pleasant surprise.  I've mentioned to him countless times (and so have the doctors, nurses, etc.) that records prove that having a positive attitude is a factor in a speedy recovery.  Conversely, having a negative attitude lends to a slower recovery and many setbacks.  

He wants to get up and walk out of the rehab clinic.  But the truth is that he is several months away from that.  

Again, if you would like to send him any words of encouragement or anything, please send correspondence to the house and my brother will take it to my dad.  The address is 22736 Erwin Street, Woodland Hills, CA  91367.  

I'll let you know when he's feeling up to phone calls.  Right now, it tires him too much to talk on the phone.  

Thank you all for your continued support.  It means a lot to our family.

~The Dymond Family

Day 37

Hello Everyone,

Instead of blasting emails every so often, I have decided to upgrade to a blog.  Please bear with me -- it is my first blog.  You may email me at dymonduga@gmail.com if you have any questions.  If you would like to share your comments, please click on "Comment" below.

My dad was transferred to the Northridge Hospital's rehab facility on Tuesday, November 4.  He has a private room and he has reported that the food is better at Northridge.  

Each day is filled with a lot of hard work for my dad.  It is difficult for him to perform various normal daily functions that the average person does without much effort (blowing your nose, going to the bathroom, sitting up in bed, etc.).  The key is to be patient with the recovery process.  If he chases after the recovery date, it will drift further away.

He becomes very tired from the workouts.  This may be a sign that he is pushing himself too hard.  He said that his PT personnel are consistent from one day to the next.  So at least there is continuity among the healthcare professionals.  Two separate members of the PT staff at Tarzana told us that a sign of pushing too hard will result in a dramatic reduction of energy for the next day.  

My dad likes the new facility.  He was able to enjoy Pool Therapy today.  They have a slightly heated pool that is 4.5 feet deep and has parallel bars for support.  My dad said he felt exhausted after that.  

He and the doctors thought that perhaps some of the symptoms had begun to come back.  The doctors have restarted him on the IVIG treatment and he'll have it for a total of 5 days.  If they do not start noticing definite improvements after the second round of treatment, they will begin plasmapheresis, where they run his blood through a cleansing machine.  

He is in good spirits, all things considered.  I think he understands that this will be a complicated recovery process in the beginning.  He is learning his body limits, but is still working on the discipline to prevent overworking.  

He said he has more weakness and numbness in his hands and arms, so simple tasks are becoming very difficult.  I try to call him for updates everyday, but usually he can only stay on the phone with me for a few minutes before he gets tired.  I wish I could talk to him more.  

Please keep to emails only at this point.  Either he or I will let you know when it's okay to call his cell phone again.  He is able to check his email every couple of days or so using the computers at the hospital for patients.  

Thank you all for your support,

The Dymond Family