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Kim N Cherry

New member
Joined
May 19, 2012
Messages
7
Reason
PALS
Diagnosis
11/2011
Country
US
State
Idaho
City
Star
I am a 64 years old man (do't let the name "Kim" fool you). I was diagnosed with ALS after over a year of tests, treatments, and bad guesses, which included open heart surgery, and diagnosis of Asthma, and possible Emphazema. The official ALS diagnosis came with the explanation that there was no cure, no treatment, and the only option was the drug, Rilutek. I was told, and my research confirmed, it offered perhaps two or three months of life extension in "some" ALS patients. I was told by my Neurotogist and my phycian that all they could offer was hospice. My diagnosis was confirmed by two other neurogist, as well as my phyician and another so called ALS specialist that oversees the ALS Clinic in Boise Idaho. I was told I should have a feeding tube inserted as soon as possible and that I was immediately eligible for full disability. I was also prescribed a Bi-Pap machine.

I forgot to ask if I could still receive disability while running my company, and working 50 to 60 hours a week.

My neurologist would not give me a time line for my disease. She said teh average was 3-5 years. My physician said I had a year, maybe two. They also indicated I could be gone in much less time. My major issues were my breating and my swallowing, which indicate the most sever ALS.

My wife and I decided we were going to fight this disease. We started researching, and tried numerous unorthodox treatments. After reaching a low in January of 2012, we started a turn-a-round. The first thing we dumped was the by-PAP machine. I told my doctors that if they were not only willing to help me fight, with the expectation that I could win, they would not be a part of my team. I have not been back to one, which also includes my Pulminologist and Cardiologist.

I thought I had played my last game of golf in December of 2011. I now play every chance i get, and hope to play daily, if I so choose. I have the strength and energy to do so. All I need is time, but that will come as I move toward retirement.

No one shoud ever receive a hopeless death sentence, as I did. I am not only doing better than I have in a year, I fully expect to beat this thing. I believe any of you that have had the experience I have had, can beat it too.

I know how scary it is. I have had nights that I didn't think I could possibly make it to morning. I no longer have them.

I discovered I had gluten sensitivity, mercury poisoning, and other things. As we addressed those issues with diet changes and herbal and vitamin supplements we saw a significant improvement. Our treatment program now includes hyperbarics, and ozone therapy. and the changes been nothing short of miraculous. And yes, I believe faith and prayers have played a huge part.

I am happy to share my experiences with any that wish to listen. The doctors say they don't want to give false hope. No hope is much worse.

I believe my mission is to now give hope to other ALS sufferers. God bless all that have this disease.

Kim
 

Mac1788

New member
Joined
Aug 11, 2012
Messages
4
Reason
Learn about ALS
Country
US
State
NC
City
Mooresville
Hi Kim,
I started having difficulty holding my head up about 7 months ago. I thought I was just tired but I got so bad that I was admitted to ER when I was traveling in Michigan. They said they could see my symptoms, but did not know what could be causing them. About two months ago, I was in Joplin, MO working on a machine. My legs started buckling while standing and resting didn't seem to help. I have continued to get weaker. I can now barely walk without asstance and my chest is starting to get heavy. This has been very frustrating for me since I do not like lying around doing nothing. As far as my brain is concerned, I should be able to get up and go. I just can't make my muscles listen.

After 20 years Navy and 7 years as a field service technician, I feel God has placed me on this Journey for a reason. I have not been formally diagnosed yet. My Primary Care physician says it looks like ALS to him but he doesn't want to make that diagnosis. I have been referred to the ALS clinic in Charlotte and I am waiting on an appointment. We hope to hear something soon. Without a diagnosis, I cannot get support from VA.

Thank you for your encouragement to fight! I have recovered from double pneumonia in the past and I know what it is to be really sick. With this, I don't FEEL sick.

Take care and God Bless!

Michael
 

HelenL

Very helpful member
Joined
Dec 17, 2010
Messages
1,583
Reason
PALS
Country
US
State
MA
City
Southborough
Hi Kim, glad to see yout positive attitude! Glad whatever you're doing is working! Keep us posted. I don't use a bipap, but am in a pwc these days, with more hand issues.

Mac, are you getting an EMG done? That's the major test that can indicate if its ALS or not, but in some rare cases (if you have mostly upper motor signs which it doesn't test for) it won't pick up on it.

Good luck, and keep us posted.
 

jamiem

Distinguished member
Joined
May 4, 2012
Messages
147
Diagnosis
08/2012
Country
US
State
TX
City
Mabank
Kim, I hear you. I believe my attitude and my strong faith in God is what will let me live well with this disease. I will not give up and like you I don't put a lot of faith in a Dr. that gives me no hope. I rely heavily on my PCP who is very encouraging and optimistic. Thank you for sharing.
 

nightwolf_mk

Distinguished member
Joined
Aug 1, 2007
Messages
107
Diagnosis
05/2012
Country
BR
State
SP
City
Gru
I hope you continue improving...
What kind of diet changes and/or supplements do you get for mercury poisoning?
 

Al fox

Active member
Joined
Aug 11, 2012
Messages
35
Reason
PALS
Diagnosis
06/2011
Country
Cad
State
Ontario
City
Toronto
Kim

I don't visit this sight all that often because it tends to depress me. I am 40 years old with 3 young children and was diagnosed with bulbar onset ALS in June of last year. I have been fighting like hell since my diagnosis. I also have a regiment that I go through daily that involves supplements, herbal tea, and meditatin. I would love a chance to speak with you at some point to compare notes.
 

Mac1788

New member
Joined
Aug 11, 2012
Messages
4
Reason
Learn about ALS
Country
US
State
NC
City
Mooresville
Hi Helen,

Thanks! Yes. The EMG was negative. My Neurologist first thought I had Myastenia Gravis. He seems stuck on that right now. However, I have no signs of it other than fatigue. I don't respond to MG medications either.

Take care and God Bless!

Michael.
 

Toto's Dorothy

Very helpful member
Joined
Jan 31, 2012
Messages
1,016
Diagnosis
11/2008
Country
US
State
Kansas
City
Emerald
Kim,

Positive thinking is a great attitude to have. We all say we are living with ALS. I don't use a bi pap either, only had 1 minor breathing episode after an illness. Don't plan on having anymore. Please keep us posted.

Mac,

I'm with Helen on the EMG. I'm praying that its not ALS, but if it is, we will follow the yellow brick road together. Good luck with your testing and keep us informed.
 

johnnyliverpool1

Distinguished member
Joined
Jul 5, 2011
Messages
473
Country
uk
State
moved back to blighty
City
britain
kim..you can play golf....am staggered and just dont get it..amazing.johnny
 

Toto's Dorothy

Very helpful member
Joined
Jan 31, 2012
Messages
1,016
Diagnosis
11/2008
Country
US
State
Kansas
City
Emerald
Michael,

Did not see your post. Sometimes it takes me forever to finish and I miss them. Good news on the EMG. I don't remember their names, but we have had a few come with the MG di ag no sis before. Hopefully, Sadiemae with her impressive memory and impeccable computer skills can step in and find a few older posts.
 

skipper66

Very helpful member
Joined
May 20, 2012
Messages
1,478
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
IL
City
SMALL TOWN IN
I am so glad that you posted Kim. One thing that has annoyed me since my dad was diagnosed this spring was the No Hope stigma associated with the disease. I think this causes alot of patients with ALS and their caregivers to give up the fight way too early. A positive attitude does wonders and so does prayers. We all have to live each day to our fullest potential rather we have ALS or not. God will decide when it's time for us to go to heaven and recieve our final reward. God, may not cure us or our loved one's but if we have faith in him he will stand by us and give us courgage as we face the journey. Just because you have ALS doesn't mean you'll pass away tomorrow. It just means you have a major fight on your hands. So, put on your boxing gloves and fight it!
 

edwards5257

Distinguished member
Joined
Jul 16, 2012
Messages
159
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
KY
City
Paducah
I am so glad that you posted Kim. One thing that has annoyed me since my dad was diagnosed this spring was the No Hope stigma associated with the disease. I think this causes alot of patients with ALS and their caregivers to give up the fight way too early. A positive attitude does wonders and so does prayers. We all have to live each day to our fullest potential rather we have ALS or not. God will decide when it's time for us to go to heaven and recieve our final reward. God, may not cure us or our loved one's but if we have faith in him he will stand by us and give us courgage as we face the journey. Just because you have ALS doesn't mean you'll pass away tomorrow. It just means you have a major fight on your hands. So, put on your boxing gloves and fight it!
Skipper, good advice tonight![/B][/I]
 

Kim N Cherry

New member
Joined
May 19, 2012
Messages
7
Reason
PALS
Diagnosis
11/2011
Country
US
State
Idaho
City
Star
Kay Cherry (wife) replying for Kim:

I am not positive if any of the supplements we received from Dr. Nielson in December addressed mercury poisoning. I do know that having dental fillings that have mercury in them helps, but you have to have it done by a biological dentist so it is done safely. We may get a chance to have that done this fall. I have had some heavy metal poisoning, more lead for me than mercury. I had a urine test that determined my metal levels. I have been taking supplements. I take 10 pills, 3 times per day, 20 minutes before meals. I can tell you that it gets quite tedious. A second test in May show the levels falling, the mercury as well as the lead, but it could take a year.
Kay for Kim
 

Kim N Cherry

New member
Joined
May 19, 2012
Messages
7
Reason
PALS
Diagnosis
11/2011
Country
US
State
Idaho
City
Star
Hi Kim,
I started having difficulty holding my head up about 7 months ago. I thought I was just tired but I got so bad that I was admitted to ER when I was traveling in Michigan. They said they could see my symptoms, but did not know what could be causing them. About two months ago, I was in Joplin, MO working on a machine. My legs started buckling while standing and resting didn't seem to help. I have continued to get weaker. I can now barely walk without asstance and my chest is starting to get heavy. This has been very frustrating for me since I do not like lying around doing nothing. As far as my brain is concerned, I should be able to get up and go. I just can't make my muscles listen.

After 20 years Navy and 7 years as a field service technician, I feel God has placed me on this Journey for a reason. I have not been formally diagnosed yet. My Primary Care physician says it looks like ALS to him but he doesn't want to make that diagnosis. I have been referred to the ALS clinic in Charlotte and I am waiting on an appointment. We hope to hear something soon. Without a diagnosis, I cannot get support from VA.

Thank you for your encouragement to fight! I have recovered from double pneumonia in the past and I know what it is to be really sick. With this, I don't FEEL sick.

Take care and God Bless!

Michael
Kay Cherry (wife) replying for Kim:

I would recommend you get a book written by a neurologist, Dr. David Perlmutter. His book is called "BrainRecovery.com". You can find it on Amazon.com. He has a whole chapter on ALS and some very good suggestions. The book is about 12 years old, and I have not found anything newer yet. You can find web sites on David Perlmutter, MD on line. He is very knowledgeable. We have added ozone treatments and hyperbarics to his protocol. Feel free to contact us again. According to the doctor's, Kim was suppose to be bedridden by now, but he worked outside all evening, something he could not have begun to do just a few months ago. He keeps getting better. Kay Cherry
 

Kim N Cherry

New member
Joined
May 19, 2012
Messages
7
Reason
PALS
Diagnosis
11/2011
Country
US
State
Idaho
City
Star
Kim

I don't visit this sight all that often because it tends to depress me. I am 40 years old with 3 young children and was diagnosed with bulbar onset ALS in June of last year. I have been fighting like hell since my diagnosis. I also have a regiment that I go through daily that involves supplements, herbal tea, and meditatin. I would love a chance to speak with you at some point to compare notes.
Reply by Kay Cherry, Kim's wife.

At first, our search was just to find something to help stop the progression of the disease. But as Kim continues to improve, we are now believing that he can continue to improve until all the symptoms he is experiencing disappear. We are sure that the important thing is to continue the treatments that have worked - one being the elimination of gluten and excess sugars. Also we have quit using Kim's toxic shampoo - Pert +. I had no idea that the first ingredient was toxic and that it would absorb into your head. Seems like the head (brain) is the source of trouble for ALS.

We would be happy to talk with you. I am still working part time and Kim is working a little more part time than I am. We have sold our business, but are helping out the new owners. You can reach Kim at [email protected]. If you can catch us at home, our number is 208-286-7323. We live in Mountain Time Zone.

As Kim has improved, he as been frustrated that he could not help others find the improvement he has. We hope to be able to give others hope.

Kay Cherry
 
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