A New Treatment…

Jim getting fitted for his "helmet" to use in the hyperbaric chamber. Aug. 2013

Jim getting fitted for his “helmet” to use in the hyperbaric chamber. Aug. 2013

Last week Jim started a new treatment. Hyperbaric Oxygen Therapy.

To explain it best, I have copied a description from the Mayo Clinic website:

Hyperbaric oxygen therapy involves breathing pure oxygen in a pressurized room. Hyperbaric oxygen therapy is a well-established treatment for decompression sickness, a hazard of scuba diving. Other conditions treated with hyperbaric oxygen therapy include serious infections, bubbles of air in your blood vessels, and wounds that won’t heal as a result of diabetes or radiation injury.

In a hyperbaric oxygen therapy room, the air pressure is raised up to three times higher than normal air pressure. Under these conditions, your lungs can gather up to three times more oxygen than would be possible breathing pure oxygen at normal air pressure.

Your blood carries this oxygen throughout your body, stimulating the release of substances called growth factors and stem cells, which promote healing.

Jim during the treatment session.

Jim during the treatment session.

 There is no real “proof” anywhere that this treatment will heal Jim of his Alzheimer’s.  But, we have been fortunate that a local healing center, Renova Wellness, heard our story and asked us if we would like to try a new approach. What do we have to lose? As we have been told by every doctor, every article, every news story and by every bit of research we have done, there is NO CURE.
So, Jim has agreed wholeheartedly to try this. He will have to go everyday for long periods of time. Each session is 90 minutes and they suggest starting with 20 days, take a week off, then another 20 days. They have had some patients with dementia that have recovered enough to stop asking the same questions over and over and have stopped repeating themselves. We have not been promised a cure. We have not been told that Jim will go back to his old self. But, we are hoping that these treatments will help stave off the disease, give us more time together as a family and possibly help with his short term memory that seems to be failing more often than not.

The Hyperbaric Chamber.

The Hyperbaric Chamber.

It is really sad how desperate and willing to grasp at anything that gives the slightest hope of some sort of reprieve from the steady decline a family can be. Like so many, we are that desperate. We want Jim to have time with the kids. We want them to have time with him; while he is still him.
I remember quite clearly going through all of the testing when we were first trying to figure out what exactly was wrong with Jim. It got to the point where I was disappointed it wasn’t a stroke, a brain tumor, depression or one of the myriad of things we eventually ruled out. All of those have either a treatment, a definitive diagnosis, a game plan of what to do and very seldom result in a possible 10 year decline of all mental skills associated with being a Dad, a friend, a lover, a husband, or a functioning member of society. Please do not misunderstand me, I do not think having a stroke or brain tumor is a cake walk. I am just relating how desperate and warped your views and desires can become as you slowly start to understand the daunting undertaking you and your family are about to begin.
Jim is still on his medication. He is still exercising. He has stopped reading. I am thinking I should try to find some short stories. Long novels are difficult and he was having to take notes so he could remember what he had read. He just finished his follow up testing at the NIH for the diagnostic study. We are participating in our Walk to End Alzheimer’s. We are gearing up for our family vacation next week….FAMILY CAMP. We are ALL very excited. We go the same week every year….
So for the most part, Jim is still Jim. Except when he isn’t. While we were at the NIH, we ate lunch in their cafeteria. I was in line for pizza and he went over to get a sandwich. I was watching to make sure he found his way and he seemed fine. When I walked over and stood with him as he waited, one of the ladies behind the counter asked him if he would like something. He said he would like a Reuben. The second lady behind the counter looked up and said, “I already helped him.”
Jim replied,”No, I haven’t ordered yet.” She argued back she had helped him. He had already ordered. I asked him if he had ordered a sandwich but just hadn’t gotten it yet. He was adamant he hadn’t been helped yet, but at the same time, I could tell he was a little confused and off.
Sure enough, she pulled his Reuben out of the oven and wrapped it up for him. There were no words said by either of us. I didn’t know what to say, since my heart was again breaking and I was no longer hungry. I have no idea what he was thinking….he almost didn’t seem to really understand and realize what happened. But I wasn’t mad or frustrated with him. It is becoming our new normal.
So, if the hyperbaric chamber can help Jim remember what he has ordered, I’ll take it.  If it will help him recall what positions the kids played in their games and if they got hits and runs and outs, I will take it. If breathing in some pure oxygen will give me a little more time with him, I will take it.
Jim and I were able to enjoy a nice lunch in Bethesda, MD after finishing up at the NIH.

Jim and I were able to enjoy a nice lunch in Bethesda, MD after finishing up at the NIH.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (7)

7 Responses to “A New Treatment…”

  1. Melissa says:

    Hi dear, I hope the treatment ends up doing some good–actually, a lot of good! Just keep us posted (I’m sure you will) on how it all goes. Crossing my fingers and sending lots of love. xo

  2. Michelle Fox says:

    I hope this works for you. Is there any empirical data that shows the end result of patients at the end of the trials? I know you are grasping at straws but feel that if it was a bomified tx plan, it would be out there. Never heard of it. You can throw all the O2 into his brain but what dissolves the plaques and what untangles the plaques…much more research. I understand it is a trial, but, oh , my dear, I hate too see Jim’s dignity compromised. My best to both of you, God Bless!!

  3. Mary says:

    I completely understand every word you write. (((HUGS))) Please keep us posted as to whether the oxygen helps. I believe my husband has had some success with a Tumeric (a natural spice) drink he has been taking. Like you, I know it’s not a cure, but we will take every little bit we can, right? The ironic part is the drink has made him more engaged for sure but, unfortunately, his social filter did not manage the same come back :0 It’s been interesting! It also seems like his problem solving skills have improved. I think you can click my name and get to my blog if you are intesrted in the recipe (it’s all natural and had many other health benefits, too). Prayers for you and your family…

  4. Ray Wiseman says:

    I have been reading your blog “missing Jim”. I have a book titled, The 36-Hour Day.A Family Guide toCaring for people who have ALZ, related Dementias,and memory loss By: Nancy L. Mace, MA and Peter V. Rabies, MD, MPH. It has been very helpful to me.lv your Blog, and you certainly have been very helpful to a lot of people going through this awful disease. My wife has ALZ going on 6 yrs. I am a retired from the Air Force, the book mentioned above will tell how you can receive finances from the VA that a lot of people probably do not know about. A spouse can get finances even if her husband served in the service a short time. Hope this will be helpful to those who reads your Blog. Prayers to you and your family.

  5. Ray Wiseman says:

    I forgot to mention our Grandson is a Doctor and he told me to put Grandma on a medicine, “Exelon Patch”. This.medicine contains 30 Systems. To the Brain. I makes the Patient remember to daily things. It seemed to work for awhile, she has used it for @ 8 mos. but doesn’t seem to be doing good now. We see the Doc for 6 mos. check- up tomorrow. He does pray for us in his office if we ask it , and being a Christian that is only thing going for us now. I am praying that our President will do as you requested in your letter. WBC praying for you. Love in Christ (TSGT Ray Wiseman,USAF Ret.

  6. chris says:

    we treat alzheimers continually always with some degree of success…..ALWAYS !

  7. chris says:

    we treat alzheimers continually always with some degree of success…..ALWAYS ! hyperbaric chicagoland.com

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