January 6, 2015
In September, Akhil began the Deanna Protocol, a supplement regimen which shows promise in slowing the progression of ALS. When he began the protocol, Akhil was confined to his powerchair and unable to move other than his head and squeezing his knees together. After one month on the protocol, Akhil had regained the ability, with much effort, to move his hands to his lap from his armrests and also to lift his legs while sitting. Although these motions may not seem like much, they provided us with great encouragement. We were anxious to see what other, however minor, movements could be regained; but then we had a setback last month.
Akhil began getting sick at the end of October with a cough which evolved to a cold which led to two hospital stays and one brush with death. ALS compromises all the muscle functions in the body including the diaphragm which is engaged in breathing. Since Akhil's diaphragm doesn't work well, he cannot take a deep breath, nor can he cough deeply to clear his lungs. As a result fluids that we would easily cough away, accumulate in his lungs and breed bacteria. That fluid is what led to his hospital stays where the staff tried to remove it through deep suctioning and bronchoscopies, both very unpleasant procedures.
The doctors didn't think Akhil would be coming home from the hospital so they had us saying our good-byes. Much to everyone's amazement, Akhil did get his lungs cleared and make it home (Yay, God!). The doctors told us that ALS patients typically only recover to about 40% of where they were prior to a setback like this. Akhil is fully recovered and able to move his hands and legs just like he could in October!
We are continuing with the Deanna Protocol and prayers for healing. There are many exciting things happening in terms of ALS research so we are hopeful that prayers and the protocol will get Akhil to the point where he can experience one of these medical breakthroughs on the horizon!
Akhil began getting sick at the end of October with a cough which evolved to a cold which led to two hospital stays and one brush with death. ALS compromises all the muscle functions in the body including the diaphragm which is engaged in breathing. Since Akhil's diaphragm doesn't work well, he cannot take a deep breath, nor can he cough deeply to clear his lungs. As a result fluids that we would easily cough away, accumulate in his lungs and breed bacteria. That fluid is what led to his hospital stays where the staff tried to remove it through deep suctioning and bronchoscopies, both very unpleasant procedures.
The doctors didn't think Akhil would be coming home from the hospital so they had us saying our good-byes. Much to everyone's amazement, Akhil did get his lungs cleared and make it home (Yay, God!). The doctors told us that ALS patients typically only recover to about 40% of where they were prior to a setback like this. Akhil is fully recovered and able to move his hands and legs just like he could in October!
We are continuing with the Deanna Protocol and prayers for healing. There are many exciting things happening in terms of ALS research so we are hopeful that prayers and the protocol will get Akhil to the point where he can experience one of these medical breakthroughs on the horizon!
August 27, 2014
One year later! Akhil is doing fantastically, overcoming adversity with a positive spirit. The Ice Bucket Challenge is helping with his attitude.
The ALS association has raised almost $100,000,000 at the time of this post. Amazing. Akhil's voice is a little weaker but this may be a side effect of his sleeping pills. He is confined to his power chair but he can still steer it. Akhil's standing has actually improved and he is now completely off all medications with the exception of sleeping pills on occasion. He has been having much more restful nights as well.
The ALS association has raised almost $100,000,000 at the time of this post. Amazing. Akhil's voice is a little weaker but this may be a side effect of his sleeping pills. He is confined to his power chair but he can still steer it. Akhil's standing has actually improved and he is now completely off all medications with the exception of sleeping pills on occasion. He has been having much more restful nights as well.
August 11, 2013
Akhil had minor surgery on Tuesday to place a feeding tube. Having the tube does not mean he has to use it; he can still eat regular food as long as he is able to do so. He had the tube put in now because his breathing is compromised and if he were to wait until he needed the feeding tube to get it, he may not be up for the surgery. Everything went smoothly and he came home from the hospital on Wednesday. He is glad the procedure is over and says it was not as bad as he thought it would be!
July 23, 2013
We visited the ALS Clinic yesterday. It has become like a reunion of old friends - one should not have relationships like this with one's medical team! Too much familiarity is a sign of too much sickness but we do love all the professionals at the ALS Clinic.
Overall, the various specialists Akhil saw reported no major changes since our last visit three months ago - to me, that was positive! There was one test though that indicated more degradation had occurred and that was the test that measures Akhil's vital lung capacity. I can't recall the exact number but it is in the 40% range. That was not the number we were hoping for. What does it mean? It means decisions about placing a feeding tube and whether or not Akhil wants to consider a tracheotomy tube must be made sooner than expected.
We continue to fight this battle as hard as we can. We live each day expectantly awaiting some form of healing. We do all that is medically possible to help Akhil. Most importantly, we keep smiling!
Overall, the various specialists Akhil saw reported no major changes since our last visit three months ago - to me, that was positive! There was one test though that indicated more degradation had occurred and that was the test that measures Akhil's vital lung capacity. I can't recall the exact number but it is in the 40% range. That was not the number we were hoping for. What does it mean? It means decisions about placing a feeding tube and whether or not Akhil wants to consider a tracheotomy tube must be made sooner than expected.
We continue to fight this battle as hard as we can. We live each day expectantly awaiting some form of healing. We do all that is medically possible to help Akhil. Most importantly, we keep smiling!
May 12, 2013
We visited Akhil's neurologist last week to have his breathing ability remeasured. Unfortunately, the tests confirmed that his vital capacity has plummeted to 54% of normal. His doctor was concerned about the sudden decline so she suggested Akhil stop taking the Low Dose Naltrexone he had added to his regimen since that is the only thing that has changed over the last few months. Since his breathing has declined, it necessitated some uncomfortable conversations. The doctor would like Akhil to consider having a feeding tube inserted before his breathing capacity dips below 50% just because it would be safer to do it sooner rather than later. Also, she suggested Akhil be placed on a machine to help him breath at least four hours per day or night. Both topics were hard to digest since Akhil thought he would have a lot more time before having to make these types of decisions. These conversations evolved into the discussion of "What happens when I don't want to do this anymore?" Suffice it to say that there are options.
April 16, 2013
We went to the ALS Clinic yesterday at Providence Hospital in Portland. The day started off positively as we visited with Akhil's neurologist, nutritionist, speech therapist, physical therapist and occupational therapist. All had fairly good reports. Dr. Goslin even thought she some some mild improvements over her last visit with Akhil. (We will celebrate any level of victory!) Unfortunately, the celebrating stopped when the respiratory therapist measured Akhil's lung capacity. The last time she had measured it in December, it was at 90% which is virtually normal. Yesterday, he tested at only 53%. That little number dealt a devastating blow to us. At 50%, patients require breathing assistance so the doctors talked to us about getting a breathing machine to use at night. Akhil was confident he would do well on his breathing test so all of this news was shocking to say the least. Dr. Goslin's nurse suggested we come back in a few weeks to have Akhil retested so we can see if that was a legitimate reading or just a fluke. Such a significant drop in just four months is alarming so we will be praying that when he is retested, the numbers will be more encouraging.
Akhil has been taking a new drug (Low Dose Naltrexone) for almost a month now. In some patients, it has slowed or even stopped the disease progression. Other than Akhil's breathing, he doesn't seem to have deteriorated over the last couple of months. His walking is slightly better (with a walker) and he can lift his legs higher off the floor than he has been able to in a while. He will continue taking this medication to see if he can continue to experience mild improvements.
Akhil has been taking a new drug (Low Dose Naltrexone) for almost a month now. In some patients, it has slowed or even stopped the disease progression. Other than Akhil's breathing, he doesn't seem to have deteriorated over the last couple of months. His walking is slightly better (with a walker) and he can lift his legs higher off the floor than he has been able to in a while. He will continue taking this medication to see if he can continue to experience mild improvements.
January 30, 2013
Akhil with our good friend, Cecelia.
We visited Akhil's neurologist on Monday for a routine follow up visit. She said overall, Akhil has not markedly deteriorated since his last appointment with her in November. She did notice some increased weakness in his shoulders but overall, gave him a good report - no new breathing or swallowing issues and his weight is steady, all very important indicators for ALS patients. His next appointment with her will be in March.
January 18, 2013
We went to Providence Hospital in Portland yesterday so Akhil could be measured for a Power Chair - one of those fancy wheelchairs that is controlled like a video game. The ALS Association delivered a power chair for Akhil to use until he gets his own. The upside is that insurance will potentially cover 80% of the cost. The downside is that we don't have a way to transport the 200 pound beast anywhere. Another project for another day...
January 5, 2013
For those of you following Akhil's health, I just wanted to give you an update. Since we last posted, we have been to the ALS Clinic in Portland where Akhil sees up to ten specialists in one afternoon. It is a great way to get all of our questions answered about all aspects of his care at one time.
Overall, it was a good visit. Akhil's health is declining but his spirits are good and he is more determined than ever to see how exercise may help him.
- The MRI results showed no new lesions and the lesion that was new on Akhil's previous MRI is gone - good news (MS activity)
- Akhil's weight is stable - good news because ALS burns a lot of calories in the body so patients tend to lose weight.
- Akhil's breathing is good although his coughing ability is compromised. Good news because breathing issues can easily lead to pneumonia. We were provided a Cough Assist machine to use to help Akhil with coughing. Akhil said it is like riding a roller coaster because it forces air into his lungs and then sucks it back out.
- Akhil's diet got good ratings from the nutritionist - nothing to improve upon!
- The physical therapist is going to see if she can find a pool therapist in the Vancouver area so Akhil can do water exercises.
- Akhil's swallowing abilities have been affected so he needs to avoid multiple texture foods like soup - his body doesn't respond appropriately so the liquid goes down his airway.
- We met with a Hospice counselor who began talking to us about this aspect of care.
- The neurologist recommended that we begin equipping the house with ramps in preparation for a wheelchair. :(
- The social worker gave me a book to read about a program called "Share the Care". It is going to be a sanity saver. In the next few months I will be calling friends to attend a meeting to learn about how this program works. Basically, anyone willing to help will be put on a list for a coordinator to contact when I need help with things ranging from keeping Akhil company so I can run errands to taking care of things I just can't find the time to do like washing my car and pulling the weeds in my yard. If you are in town, let me know if you want to be on "the list". If you are out of town, you can still help by coordinating the volunteers or simply staying in touch with us to encourage us and let us know you are in this fight with us.
Overall, it was a good visit. Akhil's health is declining but his spirits are good and he is more determined than ever to see how exercise may help him.
December 12, 2012
Last night I fell in my bed room. This was a scary fall because I had my walker, orthopedic shoes and was staying focused. I find this fall particularly frightening because it seemed unavoidable. Falls like this make me become more sedentary. I know that if I don't move, what little ability I have will be compromised.
I will try to overcome my nerves! No pun intended. ;)
I will try to overcome my nerves! No pun intended. ;)
December 7, 2012
Akhil had his most recent doctors' visits yesterday. Here is the update:
- We met with an ALS physical therapist who worked with Akhil on strategies for getting in the van. Akhil has some difficulties getting in the van because he has to lift his leg up and, due to the thigh weakness, he has a hard time. Getting in and out of a car is even more of a struggle so when he needs to go somewhere, we tend to use the van. The therapist also worked with Akhil on fall recovery and gave him some exercises to do to see if he can increase his upper body and core strength. We left with some new ideas and a gait belt so I can help lift him if necessary.
- We went to a specialist to try a Functional Electrical Stimulation device. Akhil's difficulties walking are mainly due to spasticity of the muscles in the ankles which makes it difficult for the foot to flex. When walking, this inability to flex leads to the toe catching and falls. The device worked on Akhil by sending an electric current through his leg to make his ankle flex as he took steps. Note, these steps were taken either with a walker or by holding on to parallel bars; Akhil cannot walk unassisted. The good news from this experiment is that the therapist who worked with him said that it appears his ALS is not very far progressed because the periphery nerves in the leg do not seem to be affected. In other words, his walking issues seem to be caused by his MS rather than the progression of ALS which is good news! We also learned of a couple of devices that may help with the muscle spasticity - a foot brace he could wear at night to keep the foot in a flexed position and a hand brace to straighten the fingers. He is excited to try these devices to see if some of the flexability in the ankle and fingers lost due to the MS can be regained.
- We were also supposed to see his neurologist but she was sick today. Since we were already at the hospital, we visited with her nurse. She conducted a breathing test to see how the ALS is affecting Akhil's ability to breathe. This is important because the eventual cause of death in ALS patients is respiratory-related. Akhil's lung capacity is still excellent - that of a healthy human. Another test showed that the muscles that help him breathe have been slightly affected; last time he did a breathing test about a year ago, he was at 92% and this time 85%. The test showed a decline but nothing terribly alarming.
- All-in-all, it was a good day of doctor visits. We received no devastating news and left with a lot of helpful and encouraging information. We still need to hear from Dr. Goslin regarding the results of a brain and cervical MRI that was done last week. That will tell us if there are any new or active MS lesions.
