Dealing with a parent with MS.

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Dealing with a parent with MS.

Postby kulasa » Fri Aug 02, 2013 12:35 am

Hello,

I have read many posts from this website for quite a while now, and finally decided to sign up and connect with those who have been impacted in some shape or form from this illness.

MS has impacted my life tremendously, as my Dad was diagnosed when I was only 3. I am 21 now. Initially my Dad tried to hide it from everyone, but with a secondary progressive diagnosis, it became apparent to me when I was about 10 and noticed his balance getting worse and worse. He went from chasing me on my bike to walking with a cane, to using a segway to get around, to now a scooter which even then seems like a struggle now a days. I think I have always tended to be an 'avoider' on this subject, mainly because it is painful to talk about. As my parents marriage ended last June, I have seen a steady decline in my Dad as he has had additional help, that although they are helping, I feel like they are enabling.

I guess where my frustration is coming from is to what extent do you enable a person you love who has this disease to no longer do anything for themselves anymore? While I feel like having someone assist my Dad with getting into bed and getting his pills is a good thing- I also feel like it is detrimental to him as well. I feel guilty, because I feel like I don't know if he is getting worse because of his illness, or because he is no longer using the muscles he once was by allowing others to fully assist him in every day activities that he once did on his own.

The worst part is, is that I am 15 hours away from my Dad. That is another frustration. While I know that he would want me to go out and live my life, I feel horrible and obligated to be there with him. At what extent do I put my own life on hold to take care of him and be with him? Not only have I see a decline physically, but particularly emotionally. He is extremely bipolar, I mean I would be too. But I think the worst part is that he honestly says he wants to die. I know this is heavy for my first post, but I have been struggling with this thought for quite some time.

I feel bad sometimes, because I feel like I am making this all about me. I would like to have a father figure that supported me and showed me that he cared, but his illness has taken over essentially his life, and our relationship.


Does anyone on here have any advice on how I can help my Dad and support him?



Thanks
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Re: Dealing with a parent with MS.

Postby jimmylegs » Fri Aug 02, 2013 4:19 am

welcome to the forum k :) sounds like you're having a sad time :S I am not an ms caregiver (well.. except here) but there are plenty on the forum and I am sure they will contribute to the conversation.

it's hard being away from your dad I can imagine. personally, I don't think you should put your life on hold. be supportive as you can without giving yourself the feeling of being an enabler.

I don't have spms so I can't really relate but I agree with you that this is definitely a case of use it or lose it. but it really is a struggle when your limbs don't do what they're told. I had to do a LOT of work to get the cement block feeling out of my legs.

I think attitude has a lot to do with chances of success fighting a chronic illness of any severity.. you can't make your dad do anything, but maybe you can give him information, perhaps motivate him via written info, things to read so that the message comes from an authoritative third party, about positive outcomes and ways to achieve them.
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Re: Dealing with a parent with MS.

Postby lyndacarol » Fri Aug 02, 2013 2:04 pm

Welcome to ThisIsMS, kulasa. I am the person with MS in my household; my son was 10 when I was diagnosed; I am not in your same position, but hope I can add my perspective.

Your life has been greatly affected by your dad's situation. From "chasing you on your bike" to avoiding discussion of his MS, I'm sure your dad has always thought to do the best for you, I'm sure he wants the best for you now. For most this disease has a natural progression, it is not easy for you or for him (or any of us) to deal with. Most of us will physically do as much as we can, as long as we can. After 18 years, he may simply be at the point where he greatly needs assistance. He may simply be unable to do everyday activities on his own. This is not the arrangement he wants, life is not fair.

I think all parents would like to have their families living closeby; but I am sure your dad wants you well and happy wherever you are – and if that is 15 hours away, he will accept that. I understand your sadness at his situation, there are seasons of sadness for all of us – it is the human condition. I think the best way to help your dad is to incorporate your life experiences and even the sadness into becoming the best, most compassionate human being that you can. You have been thrust into the adult, supportive role early in your life at age 21 (and earlier); use frequent phone calls to be supportive of your dad and tell him often that you love him. That emotional connection is the most important.

You have found a community of friends here who listen and offer advice when asked. The best to you.
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Re: Dealing with a parent with MS.

Postby leetz » Sat Aug 03, 2013 1:07 am

wow...some great advice! well same here I got diagnosed when my daughter was 12 or 13...she has been right here with me...18 now and she is staying close to home for college. I think as parents with this horrible disease, we do depend on those that are closest to us. I think this disease has brought both devastation as well as many many laughs into our household. For example: when I fall I usually say ouch before hitting the ground very lightly...my daughter will come running in the room and tell me I need to be louder and help me up (which usually ends up in laughter)..keep in mind that is only one example. I am blessed with help. A lot of the time we may not ask for help because it seems like that is all I do (speak for myself here). No-one "enables" me...this is the disease course and BELIEVE me I would so much rather be "normal" to do for MYSELF! There has to be some more understanding involved, simply because you are not there with him on a daily basis so really do not know what he might go thru every day. I do understand that you can't be there with him to really see what is going on...but I believe he would do for himself if he could. Having this disease is a VERY humbling experience EVERY SINGLE DAY... I am 35 well educated, and in a wheelchair with bladder/bowel problems, memory, coordination, cognitive, as well as pain, fatigue, sore butt lol...I know you may not really like what I am saying here, but truth be told: unless you suffer from this disease you really can only understand but so much... God Bless you and your Dad :)
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Re: Dealing with a parent with MS.

Postby katie45 » Sat Aug 03, 2013 11:36 am

Hi dear, believe the worst part of this is we want a reason ...I sure did, two small kids,told ms...no cause no cure...geez..I was 28, I tried to hide it too...spent all these years looking /researching...I'm 58 now and my siblings and mother have just been diagnosed (because of that research) as either carriers or having full blown HH..






The Irritable Bowel Syndrome (IBS) - And The Iron Connection

Leslie N. Johnston, DVM © 1997

Abstract: The purpose of this paper is to show that Hemochromatosis which means too much iron or iron overload, is the cause of many - far too many cases of IBS and may be the leading reason to test for iron overload or hemochromatosis in patients presented with IBS. Until now there hasn't been a cause of IBS stated, the way I understand it. Now in more and more cases, iron overload will be determined to be the cause of very many cases of IBS and a lot can be done about this iron problem in these patients to what most would call a complete 'cure', if too much iron is found to be the cause - and then a diagnosis of the cause will be known. This should prove that in many cases, there is a specific cause of IBS and that is iron overload where the entire body is overloaded with iron or it could be where the lumen of the gut itself is overloaded with iron.

We can see the wave on the ocean, but we don't see the wind behind it, and we can see the pathologies that too much iron causes, but we have failed to see the iron that cause them in far too many cases. The velocity of the wind can be and is now measured. The amount of iron in our body tissues can now be measured and it can even be seen if properly stained for - the problem is that neither of these procedures are done as they should be. Testing for too much iron or even giving it consideration for it being done and the problems that too much iron causes, is neglected or never thought of in treating disease conditions much too often; or even taken into consideration how much iron is in the diet or medications (supplements) that the patient is taking.

People having been treated for hemochromatosis have taught us a lot about iron and what removal of excess iron from the body will do to improve one's health and greatly prolong his or her life, and the lack of proper treatment for iron overload has shown the deadly results of the neglect to do so.

It is rather strange that the symptoms or pathologies of both hemochromatosis and IBS overlap almost completely.

The chronic fatigue symptom may be the first to show up in either of these two conditions - I prefer to call hemochromatosis a condition for if not diagnosed in time and properly managed, it will lead to all kinds of pathologies, and the same could be for IBS if iron overload is found to be the cause of IBS.

Actually, if you have been diagnosed for IBS, you have only been told you have a bunch of symptoms and together they are called IBS with no specific cause. Now if you can prove that you have too much iron, you do have a cause and something can be done about your IBS, - and the number of people with IBS would no doubt be found to have a much higher percentage of hemochromatosis or iron overload, than would be found in the general population.

It is rather strange that the symptoms: fatigue, diarrhea and sometimes constipation, chronic abdominal pain, bowel disturbances of bloating, cramps and nausea; dumping syndrome, mental distress, depression, hysteria, obsessive compulsive traits, loss of appetite, heart burn, hypothalamus - pituitary - (glands) axis, back pain, weakness, faintness, palpations, diagnostic confusion, physical deteriorations, myalgia, lactase deficiency which may masquerade as IBS, sleep difficulty, white blood cell influence and immune dysfunctions are all symptoms of IBS and hemochromatosis also. This is rather strange to have so many overlapping symptoms and there not be a connection between the two - there is in very many cases. These are of course not all of the symptoms or problems associated with both.

FATIGUE: This is a lot of times the very first presenting symptom of both H and IBS. This is enough in itself to warrant testing for iron OVERLOAD or iron deficiency.

ABDOMEN: Bloating, nausea, and severe cramps are common to both.

HEARTBURN: Very common to both - Dyspepsia, very common to both.

DUMPING SYNDROME: Common to both.

DIARRHEA: Of course this is the name of the game for IBS and H; although sometimes the patients will complain of constipation. This is where we find that hemochromatosis is America's most hereditable disease, for it works just like the cowboy diarrhea, it runs in the genes, and literally this is the way it works. You can't believe the very explosive and painful diarrheas with both conditions.

ABDOMINAL PAIN: This is very common in both conditions; H patients complain of pain in the upper right quadrant but the pain can be from any part of the abdomen for both conditions.

MENTAL: Depression, mental distress and hysteria, are common to both. Vertigo is common in H

LOSS OF APPETITE: common to both.

PITUITARY GLAND: No doubt about this most important gland being involved and iron is known to be the culprit in at least the case of H. The pituitary is very sensitive to iron and is damaged severely by too much iron and the damage does not repair itself even after the patient is de-ironed in too many cases - by association, iron has to be involved with the pituitary in IBS.

BACK PAIN: common to both.

WEAKNESS, FAINTNESS AND PALPATIONS: All are common to both.

DIAGNOSTIC CONFUSION: The patient will have so many and confusing symptoms that the doctor may want to send him or her to a shrink. This happens frequently - and lots of times before any iron studies are done - what neglect to fail to test any patient for iron levels.

MYALGIA: common to both and you can also add fibromyalgia and chronic fatigue syndrome (CFS) to this list

LACTASE DEFICIENCY: This is very common to both and is a most interesting aspect of both to connect the two together.

SLEEP DIFFICULTY: Common to both IBS and H, and you can add CFS and fibromyalgia to this also.

THERMAL REGULATION: Night sweats may be common - low grade infections enhanced by iron probably play an important role in this.

WHITE BLOOD CELL INFLUENCES AND IMMUNE DYSFUNCTIONS: Common to both.

It is amazing that the incidences of H, fibromyalgia and chronic fatigue syndrome increase with age and patients with these three conditions much too often complain of IBS symptoms. Iron buildup in the body also increases with age.

LACTOFERRIN: This is a very important iron binding protein found from the eyes, nose, mouth and all the way through the alimentary canal; also in some white blood cells. This is what helps to keep iron bound up and manageable until it is properly utilized or passes through the alimentary canal. The supply or amount of lactoferrin is limited and if there is too much iron in or added to the diet, this leaves free unbound iron to play havoc all the way through the canal. If you didn't have lactoferrin in your tears, how long do you think your eyes would last from being overwhelmed by infection? - and the same goes for your gut.

INFECTION IN THE GUT: Let us start with the stomach or duodenal ulcers. We use to think that ulcers were caused by a bad wife or a bad job; a bad husband couldn't have anything to do with them! Well, iron is the culprit for the cause of too many ulcers. I take my hat off to Dr. Barry Marshall from Australia who discovered that Helicobactor pyloric is the germ that causes the ulcers or causes the infections of ulcers. Which comes first, the ulcer or the infected ulcer? I say the ulcer comes first and Helicobactor pyloric being the opportunist that it is just takes over the opportunity presented to it. E. coli lives in the gut of most people and I think Heliocobactor pyloric does the same, both taking advantage of available opportunities. I take my hat off to Dr Marshall for his work about ulcers, but in all his writings that I have read, I never found one mention of iron being involved with the gut physiology, good or bad, in his writings. Iron is necessary for nearly all infective organisms to grow and cause infection. Vibrio vulnificus, theshell fish poisoning germ, is a prime example of this. Those people with full blown iron overload (hemochromatosis), would be lucky to make it to a hospital if they are exposed to this germ. The body must be able to withhold iron from infective organisms to combat infection. - if the body is overloaded with iron, it cannot do this and infection takes over.

Iron is necessary for nearly every cell in our bodies up to a point. Up to a point, iron stimulates and maintains - after that it retards, causes mutant changes, causes break down of the cells and death of the cells. Iron is the principal catalyst involved in the production of detrimental free radicals.

Nearly all of the bacteria, friendly and unfriendly, that inhabit the gut are stimulated by iron. One exception are the lactase producing bacteria in the gut. You see, these lactase producing bacteria do not use iron for their vital functions as most other cells use iron; they use cobalt and manganese. This is where iron plays havoc with these important and friendly bacteria. Iron is a much stronger metal than either cobalt or manganese and in a chemical reaction, the stronger metal will take over and mess up everything in this case. -- Iron also influences the unfriendly bacteria in the gut supplying them with the most important nutrient they need and they grow and prosper, and are able to also influence your lactase producing bacteria - this is the case of unfriendly bacteria taking over and killing off your much needed lactase producing and friendly bacteria - just because there is too much iron present for these germs to take advantage of. Without an adequate supply of lactase, you really have problems, especially if you are going to eat ice cream or drink milk - I mean very serious and painful problems. I know several people who were 'cured' of milk intolerance by being de-ironed down to normal levels - just as simple as that.

I have three very well written medical books on my shelf that were thrown out of a very good near by medical library of a major hospital. The deal is , the surgical procedures described in these books to treat IBS symptoms DIDN'T WORK EITHER. I never saw iron mentioned in these books one time.

As mentioned, iron enhances the growth of unfavorable bacteria in the gut also and if the body cannot withhold iron from these germs, then you can have all kinds of problems including gut and systemic infections. This could account for a lot of the night sweats that go along with H and IBS - and many sicknesses caused by infection. Too much iron deposited within the gut wall, can and does influence all of the cells there in and especially your host defense cells (some of your WBC's.) They become overloaded with iron and dysfunctional.

Iron taken into the gut can stay suspended in the ingesta, it can ADSORB to the gut lining, it can be ABSORBED into the gut wall and it can pass on into the blood stream and from there to all parts of the body. Problems can be had from any place or part of the body that has a concentration of too much iron.

In the lumen of the gut excess iron causes disturbances in the bacterial (micro flora) flora usually in a detrimental way to the body. When adsorbed to the gut lining, iron is causing free radical production (oxidation/reduction) that affect the gut cells just like the hot sunshine shining on your tender skin. Then when it gets into the gut lining, the same process occurs if this iron is not bound (controlled) and is in too much abundance.

The gut lining is shed off or exfoliated and rebuilt completely about every 10 days the way I understand it. Too much iron can speed up this process to our detriment. Shed off enough stomach lining cells , fast enough and deep enough, and down to the blood vessels, and then you have a bleeding ulcer.

IRON DOES CAUSE SOME ULCERS. In a study of about 5000 cases (specimens) of ulcer tissue, stainable iron was found in about 10 percent (500) of these cases. It was also found that adding iron salts to a culture of Helicobactor pyloric enhanced the growth of this bacterium, and several others in the same experiments. All of these organisms tested were unfriendly to the gut. - and to the body.

Iron plays a very important role with the pancreas. It influences the production of digestive enzymes and the production of the bicarbonate radicals (acid neutralizers) produced by the parietal cells lining the ducts from the pancreas to the gut. Without the proper amounts of pancreatic digestive enzymes and the bicarbonate (acid neutralizers), I would say you will have all kinds of digestive problems including abdominal pain, diarrhea, constipation, vomiting, dumping syndrome, and you name it. From this one aspect, the term IBS (irritable bowel syndrome) could be born. The iron causing this aspect of IBS would have to be absorbed and deposited in these pancreatic cells mentioned and in excess to cause these problems.

You will be told that if there is excess iron in the lumen of the gut that it will not hurt you for you will not absorb it unless you need it. The fact is, the more iron there is in the diet, the more iron that will be absorbed. Once absorbed, the body does not lose iron unless there is bleeding - one milligram a day excepted. As explained, if not absorbed, the iron is still in the gut until it passes through that most posterior aperture causing problems all the way along the entire length of the gut. A lot of the problems come from the free radical production and in the colon I can't think of a better place for free radical production than in the colon. What goes on in the colon reminds me more of a political convention that winds up being a big political blow out - you know, kinda on the democratic side.

Excess iron in the colon sure would not help colitis or diverticulitis. Infective organisms must have iron to function.

You don't have to have full blown H to have an iron problem that would cause IBS symptoms; just too much iron floating around in the gut can do it or elevated iron levels in your body between what is considered normal and what is considered diagnostic for full blown H can do the trick. If your IBS symptoms are caused by too much iron in the gut from iron supplements or iron rich food, it will take time for this iron to get out of the gut before improvement is shown even if corrective measures are taken.

I can see absolutely no reason for any IBS or fibromyalgia or chronic fatigue syndrome patient to take any iron supplement what-so-ever. The only exception to this would be if the patient had a full blood work up and found to be iron deficient before doing so. A simple hematocrit or hemoglobin reading would not do the trick. Serum iron, TIBC and or UIBC, ferritin, and hematocrit or hemoglobin readings would be necessary to determine the need for iron supplements.

People get these conditions and think they need vitamins; so what do they do, they go get a multiple vitamin or mineral tab that is loaded to the hilt and especially with iron. The pill will usually have 18 mgs of iron in each. Eighteen mgs of iron is 100 percent of the USRDA (or daily value) for some people, but for most of the people taking this much iron, it is 180 percent of the USRDA for iron. The USRDA for iron for men above 19 and women above 50 years of age is 10 mgs. The same applies to a lot of the breakfast cereals you eat. To put this much iron in food products and vitamin pills without the very serious warnings that should accompany such products SHOULD BE CONSIDERED A HEINOUS CRIME.

How does one find out if iron may be the cause of these problems - IBS, fibromyalgia, and chronic fatigue syndrome? A blood work up including serum iron, TIBC and or UIBC, and ferritin tests are necessary. If you just have too much iron in your gut floating around causing the problems, then you would have to check on what you are taking or eating. This would get you started. You need a doctor who is at least interested in the iron subject. If your doctor tells you this is not necessary or that you don't need all of this, then I suggest you change doctors - pronto.

These iron tests mentioned are necessary in any blood work up for any patient for any condition now days! - more important than your cholesterol tests and they are important too.

It would be most interesting to know what percentage of people who have been diagnosed for IBS, chronic fatigue syndrome, or fibromyalgia have none or either one or both of the genes for hemochromatosis as is compared to the general population. This would be real easy to find out now that the genetic test for hemochromatosis is available and really is not too expensive. All it would take is to run these genetic test on one hundred, 500 would be better, people diagnosed with IBS and ditto for CFS and fibromyalgia and compare these findings with the same tests run on a group of people from the general population. I am 'sure' the results of this research would be astounding. The genetic test for the hemochromatosis genes cost about $135.00 per person and this times 500 is only $67,500.00, and compared to most research, this is chicken feed. The thing is, most people with the symptoms of any of these conditions, should have all of these tests run at any rate - regardless.

The treatment for iron overload is donating blood (phlebotomy) and you may think to yourself: being sick and donate blood? - yes, dat is de way it tis.- To get rid of that excess iron that you have that is causing so many of your problems.

How many cases of IBS, CFS, and fibromyalgia are just cases of full blown hemochromatosis just waiting to be diagnosed.? Have your iron levels checked and then donate blood to keep from ever developing full blown hemochromatosis. Keep your ferritin levels down below 50 and your percent of saturation of your transferrin below 30.

There are about 1,250,000 people in our country who have the double genes for hemochromatosis and the potential of developing full blown hemochromatosis. There are about 30,000,000 people in our country who have the single gene (carriers) for hemochromatosis, and some of these do develop full blown hemochromatosis. It would be very interesting to know what percentage of those people who have CFS, IBS, and fibromyalgia also have either one or have the double genes for hemochromatosis and compare these with the population who have neither gene for hemochromatosis.

Why the copyright? I had a paper stolen from me and plagiarized to the tune of about 99 percent, and that person attached his name to it, and he didn't give any credit. Permission is granted for use of part or all of this paper for quotes or reproduction if you desire. Please leave my name on it so that I can be in on the cussing and discussing of what comes from it..

This is really just one narrow aspect of the iron (hemochromatosis) topic.

My best selected references for this paper are:

1. Weinberg, Eugene D., Ph. D., Cellular Iron Metabolism in Health and Disease, Drug Metabolism Reviews, 22(5);531 - 579 (1990)
2. Weinberg, Eugene D., Ph. D., Iron Withholding: A defense Against Infection and Neoplasia, Physiological Reviews, Vol 64, No 1, January 1984. 65 - 102.
3. Emery, Thomas F., Iron and your Health, Boca Raton, Boston, and Ann Arbor: CRC Press Inc., 1991. 

For more information or to obtain this booklet, you may reach Dr. Leslie Johnston at LJohnston@gorilla.net
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Re: Dealing with a parent with MS.

Postby kulasa » Sat Aug 03, 2013 11:45 pm

Thanks everyone for your advice and kind words. Makes me feel much better.
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