Some of the reasons

A forum to talk about the general challenges of daily life with MS.
robbie
Family Elder
Posts: 1285
Joined: Thu Jan 27, 2005 3:00 pm
Location: Northern Ontario, Canada

Some of the reasons

Post by robbie » Fri Jun 07, 2019 10:03 am

One of hardest thoughts for me is missing the golden years and all that goes with it. I know the golden years can not always be so golden but we all want a chance at it. If only it stopped and you got to be healthy , after so long what a wild ride that would be , hard to imagine:)



"Suicide remains highly stigmatized,” Dr. Patten says. “What often happens is people have those thoughts, and there’s a sense of shame or failure that goes along with that. So they don’t reach out for help from others.”

The study found that the following factors predicted suicidal thoughts in people with MS

Older age. In the study, people aged 65 and older with MS were four times as likely to engage in suicidal thoughts (sometimes called suicidal ideation) as younger people with MS.

Bowel and bladder problems. The study found that participants who reported bowel and bladder symptoms as a complication of their MS were more than twice as likely to have suicidal thoughts.

Low self-efficacy. Participants in the study were given a quiz and asked to rate their ability to perform difficult tasks or to deal with unexpected events. Those who gave themselves lower ratings were more than three times as likely to have suicidal thoughts. Speaking and swallowing problems.

People whose MS symptoms involved trouble with swallowing or talking were almost three times as likely to experience suicidal ideation.<br>

Emotional coping style. The MS patients in the study were given a questionnaire to determine how they dealt with adversity. Patients who said they coped with difficulty in an emotional way were more likely to have suicidal thoughts than those who dealt with problems in a task-oriented manner.
Had ms for 27 yrs, taken a different approach to treatment I call it the FUMS treatment
DISCLAIMER anything posted by me is purely made from anger and disdain for ms,
Regime
2 cigars a day
4 beers
6 or more codein
2 valium
Pot as needed

ElliotB
Family Elder
Posts: 1931
Joined: Mon Feb 03, 2014 4:08 pm

Re: Some of the reasons

Post by ElliotB » Fri Jun 07, 2019 1:11 pm

Not sure if you are looking for advise or not or just venting, but I will share some with you anyway with the hope you will at least consider implementing the ideas. And from personal experience within my family, I do fully understand your situation.

1. Call the National Suicide Prevention Lifeline
The Lifeline provides 24/7, free and confidential support for people in distress, prevention and crisis resources for you, and best practices for professionals.

1-800-273-8255

Calling is probably not something you want to do. You probably think they cannot help you. You may be right. But it is possible they can help you. And this is exactly why you should make the call immediately.

2. Read about people that have had success with their advanced stage MS issues and from others who have had some success in battling MS and follow their suggestions. There are some people who have documented their successes in book form and through video. Dr. Terry Wahls and Matt Embry come to mind. There are others. Gristy56 who posts here on this site regularly is another.

3. This is another important suggestion. And will likely be difficult for you to do and your first thought will likely be that you cannot do it - exercise, exercise, EXERCISE. I know that exercise may be the last thing on your mind, and the last thing you feel like doing. You will have to force yourself at first, and then perhaps as you improve and you definitely will improve, you will feel more enthusiastic about doing it. The funny thing about exercise is when you feel like doing it the least is probably when you need to do it the most. And amazingly, once you start doing some, within minutes you start to feel better, both physically and mentally.

Apparently depression is the cause of over two-thirds of the 30,000 reported suicides in the U.S. each year. (White House Conference on Mental Health, 1999). Regular exercise can help ward off the effects of depression and enhance one’s mood. Amazing positive things happen within our bodies when we exercise. Research studies over the years have consistently found this to be true. Any form of physical activity can be beneficial.

I am fully aware of your physical condition and how difficult exercise will be at this point both physically and mentally, BUT it is something that will help you tremendously and quickly both physically and mentally. If you force yourself at first, you will be able to do some, and you will feel better in so many ways in a very short period of time that you will look forward to doing it!

Even in your situation, there are many exercises you can still do from a seated position in a chair and from a lying position in bed, simple exercises at first and then as you improve, graduate to more challenging ones. You will likely need assistance at first. Again, any form of physical activity can be beneficial.

There are many, many suggestions on the web similar to this one:

How to Exercise if You Have Limited Mobility
https://www.helpguide.org/articles/heal ... itness.htm

4. And finally, get an emotional support dog. The benefits of having a dog are documented. For those that need one, an emotional support animal will really help. Dogs give unconditional love. And provide an endless supply of it. And then give even more love. The love never stops. In simple terms, emotional support animals give back a lot of what MS takes away mentally, and is basically the opposite of MS! Aside from eating and going to the bathroom, giving love is basically all they do. And why so many people (including me) rely on them. The positive effect on your life will be amazing beyond anything you can imagine.

I truly hope you will at least consider implementing some or all the above.
and that these simple suggestions will help you. You have everything to gain and nothing to loose. So please seriously consider these suggestions and the tips others have given you in some of your other threads. Your golden years truly can be filled with more gold but it is all up to you!

robbie
Family Elder
Posts: 1285
Joined: Thu Jan 27, 2005 3:00 pm
Location: Northern Ontario, Canada

Re: Some of the reasons

Post by robbie » Sat Jun 08, 2019 1:01 pm

But it's not up to me Elliot theres a point that ms tips the scale in its favor and it's not up to you. I tried suggestions from tims, interferon , eat right , tested for CCSVI exercised regularly, had a pic line put in for 8 months of intravenous antibiotics. At times I really thought I was on to something, feeling better up and down up and down now i wonder if any of it helped. I can't transfer my ankles are locked inward on their side hurt like hell was just outside for a couple hours didnt even like that .Not being able to transfer I went from existing and doing my best to a burden. I'm done with ms it can do what it wants I'm done worrying about what might happen in the future. I'm there. Just trying to limit my thinking too a day at a time :)
Had ms for 27 yrs, taken a different approach to treatment I call it the FUMS treatment
DISCLAIMER anything posted by me is purely made from anger and disdain for ms,
Regime
2 cigars a day
4 beers
6 or more codein
2 valium
Pot as needed

Anonymoose
Family Elder
Posts: 1155
Joined: Tue Oct 09, 2012 6:33 am

Re: Some of the reasons

Post by Anonymoose » Sun Jun 09, 2019 5:30 am

robbie wrote:
Sat Jun 08, 2019 1:01 pm
But it's not up to me Elliot theres a point that ms tips the scale in its favor and it's not up to you. I tried suggestions from tims, interferon , eat right , tested for CCSVI exercised regularly, had a pic line put in for 8 months of intravenous antibiotics. At times I really thought I was on to something, feeling better up and down up and down now i wonder if any of it helped. I can't transfer my ankles are locked inward on their side hurt like hell was just outside for a couple hours didnt even like that .Not being able to transfer I went from existing and doing my best to a burden. I'm done with ms it can do what it wants I'm done worrying about what might happen in the future. I'm there. Just trying to limit my thinking too a day at a time :)
Hey Robbie,

The ankle thing sounds like all kinds of suck. I’ve read they can do surgical interventions to help kids w cerebral palsy overcome spasticity problems, including pain. Do doctors ever discuss this kind of thing w you? It’d be nice to get some relief and not have to be stoned out of your mind 24/7.

I feel like there’s an unwritten rule about this end of life thing. In order for things to be right w your family and the universe, you gotta do everything you can to juice more time (and quality) out of your life. Scott1 has posted about successfully managing spasticity...have you tried botulism injections or that muscle relaxant he takes/took? I’m guessing you have but thought I’d ask anyway.

‘Moose

User avatar
jimmylegs
Volunteer Moderator
Posts: 12047
Joined: Sat Mar 11, 2006 3:00 pm

Re: Some of the reasons

Post by jimmylegs » Sun Jun 09, 2019 8:02 am

heya robbie, can we assume all this trouble is in the context of tip top high normal healthy controls nutrient levels?
if memory serves you had no interest that kind of investigation a decade ago but i wonder if you've ruled out essential nutrient contributions to your condition at any point since?
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

robbie
Family Elder
Posts: 1285
Joined: Thu Jan 27, 2005 3:00 pm
Location: Northern Ontario, Canada

Re: Some of the reasons

Post by robbie » Sun Jun 09, 2019 8:11 am

Hi JL no eating and nutrition where never one of my priorities, should have been better.
Had ms for 27 yrs, taken a different approach to treatment I call it the FUMS treatment
DISCLAIMER anything posted by me is purely made from anger and disdain for ms,
Regime
2 cigars a day
4 beers
6 or more codein
2 valium
Pot as needed

User avatar
NHE
Volunteer Moderator
Posts: 5290
Joined: Sat Nov 20, 2004 3:00 pm
Contact:

Re: Some of the reasons

Post by NHE » Sun Jun 09, 2019 8:17 am

Anonymoose wrote:
Sun Jun 09, 2019 5:30 am
Hey Robbie,

The ankle thing sounds like all kinds of suck. I’ve read they can do surgical interventions to help kids w cerebral palsy overcome spasticity problems, including pain. Do doctors ever discuss this kind of thing w you? It’d be nice to get some relief and not have to be stoned out of your mind 24/7.

I feel like there’s an unwritten rule about this end of life thing. In order for things to be right w your family and the universe, you gotta do everything you can to juice more time (and quality) out of your life. Scott1 has posted about successfully managing spasticity...have you tried botulism injections or that muscle relaxant he takes/took? I’m guessing you have but thought I’d ask anyway.
The muscle relaxant Scott uses for spasticity is called dantrium.

User avatar
jimmylegs
Volunteer Moderator
Posts: 12047
Joined: Sat Mar 11, 2006 3:00 pm

Re: Some of the reasons

Post by jimmylegs » Sun Jun 09, 2019 8:22 am

could be worth seeing what if anything could still be reversible. or just mitigating the nutrient hit you take via smoking and drinking if nothing else.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

robbie
Family Elder
Posts: 1285
Joined: Thu Jan 27, 2005 3:00 pm
Location: Northern Ontario, Canada

Re: Some of the reasons

Post by robbie » Sun Jun 09, 2019 8:24 am

Hey Moose i didn't even think the ankle problem was part of ms but they just keep coming. I have had a sore jaw for months and the ach moved up the side of my head, for a time I thought it was a wisdom tooth but just for fun I googled jaw pain/ms and there it was, I laughed😊
some wouldn't no matter what, for me its about lines in the sand, if I get this bad I'm done ! I would always say that from the time I was diagnosed I think my first red line was loosing my job but you figure it out. You can't judge someone on this issue unless you've walked in their shoes or rolled in their chair . Baclofen, Clozopam help
Had ms for 27 yrs, taken a different approach to treatment I call it the FUMS treatment
DISCLAIMER anything posted by me is purely made from anger and disdain for ms,
Regime
2 cigars a day
4 beers
6 or more codein
2 valium
Pot as needed

User avatar
jimmylegs
Volunteer Moderator
Posts: 12047
Joined: Sat Mar 11, 2006 3:00 pm

Re: Some of the reasons

Post by jimmylegs » Sun Jun 09, 2019 10:21 am

one example:
  • Acute effects of alcohol ingestion on the human serum concentrations of calcium and magnesium (1991)
    http://citeseerx.ist.psu.edu/viewdoc/do ... 1&type=pdf
    The presence of alcohol in the blood was associated with a diminution of serum concentrations of calcium and magnesium.
    ... The increase in serum alcohol ... exerted a proportional hypomagnesaemic effect (r = - 0.35, P <0.05, Fig. 2.) There was no difference between the results obtained from the occasional or chronic regular alcohol abusers.
  • Evaluation of the effect of smoking on complete blood counts, serum C-reactive protein and magnesium levels in healthy adult male smokers (2015)
    https://www.jpma.org.pk/PdfDownload/7134.pdf
    Table-2: Comparison of serum C-reactive protein and magnesium levels between healthy adult male smokers and non-smokers.
    Serum variable...........Normal range........Smokers (n=48)..........Non-Smokers (n=48)............P value
    Magnesium................(1.8-2.6mg/dl) ......1.09±0.38.............2.52±0.18....................<0.001
  • Assessment of serum magnesium, copper, and zinc levels in multiple sclerosis (MS) patients (2007)
    https://pdfs.semanticscholar.org/e509/b ... 67d0b9.pdf
    Table-1: serum magnesium level differences according to sex in MS patients referred to neurology clinics of Kashan 2004-2005
    Group..................................#...............serum Mg...........p value
    Male.............MS Patient..........7..............2.01 ± 0.41
    ................................................................................0.0001
    ...................Healthy.............7..............2.42 ± 0.16
  • Subclinical magnesium deficiency: a principal driver of cardiovascular disease and a public health crisis (2018)
    https://openheart.bmj.com/content/5/1/e ... xed-text-3
    Box 3 Potential clinical signs of magnesium deficiency
    Less severe signs

    Aggression.
    Anxiety.
    Ataxia.
    Chvostek sign (twitching of the facial muscles in response to tapping over the area of the facial nerve).
    Confusion.
    Cramps (spontaneous carpopedal spasm or painful cramps of the muscles in your hands and feet).
    Disorientation.
    Fasciculations (‘a brief, spontaneous contraction affecting a small number of muscle fibres, often causing a flicker of movement under the skin. It can be a symptom of disease of the motor neurons)’.91
    Hyper-reflexia.
    Irritability.
    Muscular weakness.
    Neuromuscular irritability.
    Pain or hyperalgesia (decreases the nociceptive threshold).
    Photosensitivity.
    Spasticity.
    Tetany (involuntary muscle spasms).
    Tinnitus (ringing in the ears).
    Tremors.
    Trousseau sign.
    Vertigo.
    Vitamin D resistance.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

Anonymoose
Family Elder
Posts: 1155
Joined: Tue Oct 09, 2012 6:33 am

Re: Some of the reasons

Post by Anonymoose » Sun Jun 09, 2019 6:15 pm

robbie wrote:
Sun Jun 09, 2019 8:24 am
Hey Moose i didn't even think the ankle problem was part of ms but they just keep coming. I have had a sore jaw for months and the ach moved up the side of my head, for a time I thought it was a wisdom tooth but just for fun I googled jaw pain/ms and there it was, I laughed😊
some wouldn't no matter what, for me its about lines in the sand, if I get this bad I'm done ! I would always say that from the time I was diagnosed I think my first red line was loosing my job but you figure it out. You can't judge someone on this issue unless you've walked in their shoes or rolled in their chair . Baclofen, Clozopam help
Not judging at all, Robbie. It just seems like you’re decision making. I think (often) about when I’ll have to make the call...usually for financial/logistical planning (newly, HAPPILY divorced). Thats one of the “rules” that have been born of all that mulling. Rules for *me* and a discussion point if you want to talk about the whole thing.

I’ve drawn lines and moved them further along already. They could move back. I’ve also got my “Switzerland” already. I’m 100% in the “it’s your choice camp.” It still breaks my heart to see people throw in the towel (but I’ll do it and break other peoples’ hearts someday too...unless I get hit by a bus...make plans and God laughs).

Do you have rules about making the call? How does your wife feel about making the choice (other than the obvious—shattered)?

I’m w jimmylegs re: nutrition. Most of my MS annoyances are greatly relieved w supplements (and I do mega rituxan every few years). It’s a relatively inexpensive/easy approach to explore.

Can you call your doc and request Botox/dantrium (thanks NHE) to help w pain? Life is so hard w pain. Your docs gotta get that under control. Seriously. Have your wife do one of those Terms of Endearment Shirley MacLaine “get my daughter (husband) her (his) pain killers!!” scenes for you.

‘Moose

User avatar
jimmylegs
Volunteer Moderator
Posts: 12047
Joined: Sat Mar 11, 2006 3:00 pm

Re: Some of the reasons

Post by jimmylegs » Mon Jun 10, 2019 5:28 am

glad to see attention to nutrient status gives you some relief anon

when george ended his life a few years ago now, he was bedridden, wracked with spasticity and his serum mag level was 0.66 mg/dl. he was taking some magnesium daily, but it wasn't enough, and probably wasn't timed right either, to handle the 10,000 iu of vitamin d3 he was also taking daily.

i remember over a decade ago now, having weird symptoms i thought were going to kill me without any extra help. pretty glad that one pharmacist pointed out my likely mag deficit issues and how to fix them. two days of trialing his advice with symptoms abating, and then another couple days of reverting to my status quo with their prompt return, made it was clear he was right. then it took me ages to figure out how to do it properly (he'd skipped a couple key details), and get my tissue magnesium stores topped back up after years of depletion. now i enjoy knowing by feel when i could probably use a little extra mag. the body is a complex and amazing thing.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

robbie
Family Elder
Posts: 1285
Joined: Thu Jan 27, 2005 3:00 pm
Location: Northern Ontario, Canada

Re: Some of the reasons

Post by robbie » Mon Jun 10, 2019 7:07 am

That's amazing JL your so disaplined, what would you say your worst ms symptom is ?
Had ms for 27 yrs, taken a different approach to treatment I call it the FUMS treatment
DISCLAIMER anything posted by me is purely made from anger and disdain for ms,
Regime
2 cigars a day
4 beers
6 or more codein
2 valium
Pot as needed

User avatar
jimmylegs
Volunteer Moderator
Posts: 12047
Joined: Sat Mar 11, 2006 3:00 pm

Re: Some of the reasons

Post by jimmylegs » Mon Jun 10, 2019 10:32 am

hi robbie

re discipline, in the food dept it definitely has varied over time. right now yes i'm eating carefully, plus once a week i fill up a mon-fri vit/min dosette and leave it out in plain view where i'll see it every time i have any food or fluids. re exercise not so much - lately the pool is basically it and i probably would not get there AT ALL if i hadn't made it into a weekly appointment i have to keep with my friend.

re worst symptom, probably the heat/exertion sensitivity with transient paralysis, which always used to kick in after a few hours or so, but got dramatically worse after a flu beginning of 2018 (i had been undisciplined on the self care front for a few years - learned my lesson AGAIN). gentle aquafit seems to be helping with recovery - at least you can't fall over in the water!

although it didn't last forever, i think the double vision in early 2018 was in some ways more limiting than the transient paralysis. couldn't drive. no input from any doc other than the ER ophthalmologist who dxd internuclear ophthalmoplegia (ie brain damage). literally nothing in the ms literature related to INO hints at the potential for physio that has been trialled successfully in the context of traumatic brain injury. luckily if you can find it (which i did) and have access (which i do), you can apply that same protocol to MS INO (which i did).

overall it has been interesting teasing out which problems will respond to nutrition and which are more likely to benefit from some kind of physiotherapy.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

robbie
Family Elder
Posts: 1285
Joined: Thu Jan 27, 2005 3:00 pm
Location: Northern Ontario, Canada

Re: Some of the reasons

Post by robbie » Mon Jun 10, 2019 1:03 pm

Thx JL it was nice just to hear about you ,no nutrition talk just you 😊
Had ms for 27 yrs, taken a different approach to treatment I call it the FUMS treatment
DISCLAIMER anything posted by me is purely made from anger and disdain for ms,
Regime
2 cigars a day
4 beers
6 or more codein
2 valium
Pot as needed

Post Reply