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HelenL

Very helpful member
Joined
Dec 17, 2010
Messages
1,602
Reason
PALS
Country
US
State
MA
City
Southborough
I think Reiki is a wonderful idea, I learned it from my SIL and it's very relaxing... I also sort of smile when I do it on the top of my head and think "good mitocondria, good mitocondria..." (Not that I think THAT will help, but it makes me smile when I think it.)

I would recommend taking a daily dose of Vit D, as it may help stop some of the twitching. I started at a higher dose and now take 2,000 IU daily. Not many twitches anymore, but everyone's different. Also, try adding Magnesium bath salts to your bath, as it can be absorbed through the skin.
 

LauraW

Distinguished member
Joined
Sep 27, 2008
Messages
421
Reason
CALS
Diagnosis
09/2008
Country
US
State
New York
City
Fishkill
Oh yes I forgot about the salt. Daphne....I make bath salts with dead sea salt and himalaya salt with lavendar and bergomot. If you send me your address I will send you some as a gift! Please let me share them with you!
 

evansmom99

Member
Joined
Jun 15, 2011
Messages
26
Reason
PALS
Diagnosis
06/2011
Country
US
State
CO
City
Denver
I am so happy to see this post, I too all the sudden would panic if I got a muscle twitch or drop something. So now I can attribute it to the bed bug or lice theory. You hear a story or have contact with some one who has em, even talking about em makes you start itching and you start looking for them.
 

Daphne

Active member
Joined
Dec 23, 2009
Messages
30
Reason
Loved one DX
Country
US
State
Missouri
City
St. Louis
Thanks, everyone, for sharing your experiences. It makes me feel so much better to know others are experiencing this. My OB/Gyn even recently did a hormone test to see if I was in perimenopause! (I'm not.) With every clean bill of health I get, the more worried I am, but I have to get a grip, I suppose.

We buried my brother on Friday after 2-1/2 years of his suffering from ALS. His throat collapsed and cut off his breathing, but he died unconscious, so there was no struggle.

You can bet that all through his death week, I have been twitching madly.

I sat next to his cold body in his hospice bedroom for 3 hours while people said their goodbyes, and I watched while the funeral director bagged him up and wheeled him away. I taught class the next day. I made it through the arrangements, the wake, the funeral, the burial, out-of-town houseguests, a luncheon in my home, etc. (my mother is a widow and I'm the nearest sane relative, or maybe not so sane). I comforted my 4 sons (ages 9-17), I ate very little (my throat kept feeling like it was clogged), and I slept poorly.

I'm relieved it's over. I feel as though the sun is shining again, as much as I already miss my brother. And I'm still twitching madly, even as I type this!

I'll keep you updated on whether my symptoms fade, and I send out love and best wishes for those of you who are still watching the pain of your PALS. I know my brother is in a better place, and I have to believe that once the strain of these last few years passes, I can regain control of my body.
 

LauraW

Distinguished member
Joined
Sep 27, 2008
Messages
421
Reason
CALS
Diagnosis
09/2008
Country
US
State
New York
City
Fishkill
Keeping you in my prayers!
 

kmendsley

Distinguished member
Joined
Feb 19, 2010
Messages
434
Reason
PALS
Diagnosis
04/2011
Country
US
State
CA
City
Highland
Daphne, sorry again for the loss of your brother.

In answer to your question yes it is very common for people going through caregiver position or even being in the medical care field to get symptoms of a disease because they are either seeing it everyday, or they are studying it. One example is fathers getting preganancy symptoms(morning sickness, cravings...etc.) the same as their wives..obviously they are not pregnant, but they are feeling left out or are in sympathy mode. Another is medical students who are in the 1st year studying all of these different rare diseases for their exams. Surprisingly high rate of them go to the ER in that first year with symptoms of some rare disease or another but they are fine. You could have a severe headache, unable to move neck up and down and have your body produce a rash yet you could be completely clean from a menigitis diagnosis because your body made you think you were sick though you were not.

Anyway, it is common esp. in stressful situations...such as being a caregiver for your brother who had ALS....the body is a funny thing. Hope this helped!
 

artist09

Member
Joined
May 29, 2011
Messages
18
Reason
CALS
Diagnosis
06/2011
Country
Uni
State
TN
City
Memphis
Loralie, yes, I don't recall getting twitches with my anxiety in the past....but maybe that is just it.....they were insignificant at the time, so I didn't even notice nor think about them. Maybe we have always twitched a little with anxiety and never noticed it. I hope your twitching gets better. The more I try not to focus on mine, the milder and less frequent they seem....again....must be the mind control.
 

blazonr

New member
Joined
Jul 31, 2011
Messages
8
Reason
CALS
Country
CA
State
BC
City
Maple Ridge
whew... I thought I was becoming a hypocondriac... or having sympathy pains for my husband. So there is some reality to this sense of having similar symptoms. Maybe it is stockholm syndrome of some sort. As a caregiver we have to learn so much in a short amount of time and are always focused on the patients physical health and needs, usually not our own. Thank you for bringing this subject to light.
 

Gentleman Jim

Distinguished member
Joined
Dec 28, 2010
Messages
208
Country
US
State
Indiana
City
Fort Wayne
I am a caregiver also. The only realities Eddie and I share are the fact is, we are both
going to die.

Having said that, the power of suggestion is a strong component, else advertising would
be futile. There is a India' proverb that says. "When you are bumped, that which you
are full of, comes out." paraphrased.

We are constantly being bumped if you will. Cradle to grave. Us being healthy doesn't
change the ALS. We live in a world that is growning.
If you put a rotton apple in a bushel of good apples it will speed the deteriation of the
other apples. If you put one good apple in a bushel of bad apples, that won't make
the others good.

So, practice good hygiene, wear the gloves, wear the mask, wash your hands, wash
the bed cloths and garments often. etc. For both of your sakes. You've done your
part. Please don't go off on a tangent here. I only wear a mask when I have a
cold. However, that said, be smart, live each day like it is your last.

Try to leave nothing left unsaid. No one, no one, is exempt from falling short
in the areas of life that demonstrate finger pointing.

We all arrived into this world via the same ship. We are all in the same boat.
All the water in the world won't sink your boat unless it gets inside.

I know that these ideas are like a blind man in a dark room looking for a
black cat that isn't there. However, what ever is pure, honest, noble
praise worthy, think on these things. Sorry for going long.
 

Atsugi

Moderator emeritus
Joined
Jan 11, 2011
Messages
5,921
Reason
Lost a loved one
Diagnosis
12/2010
Country
US
State
FL
City
Orlando
Jim, just how OLD are you, anyway?
 

TomsSIL

Member
Joined
Jul 26, 2011
Messages
28
Reason
Loved one DX
Diagnosis
04/2011
Country
US
State
PA
City
Shinglehouse
Daphne, my sincere condolences on the loss of your brother. Stress can do some really terrible things to the body. I hope your symptoms calm down in the next few weeks. Try deep breathing when you go to bed. Focus on something very pleasant that has nothing to do with your brother. Just try to visualize something very relaxing and peaceful. Try to empty your mind. Hopefully, you can induce some really good sleep, and your body can heal from the stress you have been through.
 
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