Cramps

[upila]

Hi TBear,
It's the particular hospitals (2) that he went and the individuals he was seen by that so completely turned us off, the manner and really, there was no concern to speak of, or any advice. The bills, however, (in huge amounts) came very promptly...We live far a way from any centers and for now, there is nothing we can do. He is not angry at the messengers for his illness. But, depending where you go, in the US (perhaps it's everywhere) one is not at all asured of actual care-on the medical or human level.
On the cramps, such as you speak woke up your wife, yes, he has had them no less than 3 years ago, but we assigned them as being work-related. They probably were not. Those have gone away almost entirely, perhaps due to the number of antioxidants/supplements/vitamins he has been on since diagn. My mom gives him daily massages as a preventive measure, and as additional muscle stimulation. When he has "bad"days, he gets some stiffness if stretching, but seldom cramps. Depression seems to bring the worst of everything on. And no matter how hard he tries, these dark days days are numerous. As is today.

 

[TBear]

I'm sorry to hear that. Our experiences with neurologists at both hospitals that we went to were both very good (despite the reality of the diagnosis). Gerry Goldman, who wrote a four part article in the Toronto Sun also spoke of being poorly treated by his first neurologist. Fortunately, he managed to get to the ALS Clinic in Toronto where the treatment was better. We were there as well and found it to be exceptional. Of course the price was right too. With luck, maybe you will eventually be able to get your dad to an ALS clinic where they may be more sympathetic.

Strangley enough, its common both here and in the States to trash our health system. Our experience was positive. Maybe we were the exception.

Good Luck

T.

 

[upila]

You are kind, and I am grateful for your "nudge."

 

[TBear]

... and I was trying so hard not to be transparent!

T

 

[upila]

...As a matter of fact, not only were you fully visible, but I heard you all the way here!

 

[TBear]

... indeed! Welcome then to this den of not-so-politically-correct nut bars! From time to time we attempt to amuse... often times unsuccessfully. What part of the USofA are you from?
T.

 

[upila]

Northern VT.
Sense of humor should be treasured. Without, we are a sorry lot.
TBear, do you know of any PALS having lost their sense of salt/sugar taste? We are again completely stressed: dad definitely can not taste salt, and almost same for sweet. In reading the web, couple of possibilities stand out: 1) the checmical reaction between some of the supplements he is taking or 2) nerve damage has affected the taste buds' neurotransmitters. I realized that he has not been taking B12(or Bcomplex) vitamin, and lack of same may result in taste loss. Makes me feel so stupid and inadequate, as I should have thought about it, but gradually I too am losing my mind with the stress of it all. We decided to eliminate some of the supplements, keep the creatine, Q10, and replace the other with a mega multi-vitamin. He took today B-complex, hoping...If I could only convince him that he should consider looking for a primary doctor, so we have some contact when sudden questions arise. Difficult task, mom is not fearing any better.

 

[TBear]

... sorry no, I only have experience with how my wife travelled through this... and I don't recall her having lost her sense of taste of either salt or sugar. If you understand the bio-chemical realtionships between that and vitamin supplements you are way beyond my understanding of how this stuff works... not that that is difficult! Good luck getting your dad to an appropriate facility.

CHeers

T.

 

[upila]

No cheers today, TBear, only tears.

 

[Carol Deboer]

Hi Uplia,

Henry did not lose his sense of taste either. I have not really heard of anyone that has. Again, each case is different as Ted said. I have however heard that a rigid regimen of supplements can alter the taste buds, but to lose them altogether is something new to me too. I hope that he gets it back. It is awful enough not to enjoy the tiring task of eating, but not being able to taste is awful. I hope that he can find some sense of resolution with this als thing. You have to go through all of the stages of emotions before you can find some sense in it all. And really, you never find any sense in this horrible ailment. You just learn to live with it. We found that it got easier as time went on. I know that sounds kind of funny with all of the modifications you will have to make, but believe me it does happen. Ted will probably tell you the same thing. Never lose the sense of humour, if you do, your days are much longer and greyer. You can laugh and find humour in such silly things, but I think that your Dad is still having a very difficult time dealing with the diagnosis. God knows that it is very hard, but he will see you through. Your Mom will have to be strong as well. I really don't know how we did it, and looking back over the years, I remember some really awesome times. There were terrible times too, but when your lives are immediately put on a time limit, you have to embrace what is left, and what you have. Keep as much of a normal regimen as you possibly can, given the circumstances, and that will help you out a lot. I do know that there are a lot of different side effects with non traditional meds as well as the others, and maybe this loss of taste is one of them with his bio-chemical makeup. Who knows. Lets hope it is temporary. Good luck dear, and if you need anything, just ask. We will be here for you all.

Have a good night, and stay strong.

Sending you a big hug. Love, Carol

 

[upila]

Carol, thank you.
I could not sleep so came to check the posts both for information and support. My hope is too, that this is a chemical reaction. Dad was so angry yesterday, he was in a state of total despair, as the reality of the future is starting to set in. The anger did not help, it trigerred bad cramps, first in 5-6 months, and was literaly in paid all over with violent fasciculations. Until the last few days, his pH was 7.5, and had been at this level for the last 5-6 months, which is a good level. Yesterday, when I checked it, it was 6.8-7. So something has started acidifying his system, so have to go back and see what have we done diferrent recently. Will stop the supplements for few days, to try and clean the system, see if the taste sense improves, then will start again adding back one by one. Does this make sense?

 

[TBear]

Hi Upila... and the rest of you night owls!
It make sense to me to start off fresh... although it will probably take some time for his body to equilabrate.
We didn't rely heavily on supplements for my wife's treatment although we did use some creatin, grape seed extract, vitamin E (mixed) and vitamin C. We were prescribed baclofen for the muscle issues, amitryptilene for the saliva issues and riluzol. We also did a trial at Dr. Strong's clinic in London withi BRDF, which didn't pass proof. Of course we did continue to have a glass or two of wine with each meal... for medicinal purposes only!
Carol, I talked it over with the girls and I think I'm going to send Mary's picture in to George for the March of Faces. I see that Downtown Johnny's is in there now. Good to put a face on that one... he was truly a trooper and a real force in opening up this site!
Have a good day.... or better one as is appropriate Upila!

Cheers
T.

 

[upila]

It is a little better day TBear, thanks. It's the calm after the storm. (Not only have I started to talk often medical giberish, but obviously am heavy on the clishes...) If I could drag a smiley face here from the ones on the side of the screen, I would.