Sister Died of ALS BULBAR and Now Brother has it too

[KathyR]

Hi everyone, my name is Kathy and I had a sister who died of ALS back in 1999 she had Bulbar, she lived about 4 yrs. We sent blood to the ALS clinic to have them tested to see if they could find anything that might have caused or if the rest of us have the same whatever it is they call it, as my sister. but they tested hers and not ours, they said that they didn't find this whatever it is in her blood. So they said it was Sporadic. Now my brother has been diagnosed with ALS Bulbar, like my sister was. So now the tables have turned. So we let them know at the ALS clinic, so that they would test all of our blood to see if they can find something there that shouldn't be there I guess. Anyway, my brother does alot of excerises and his wife makes him chew gum to keep is strength up which seems to be helping. She also massages his back, sholders, legs and arms after they walk. which seems to keep the twitches at bay. My brother works out at the gym too. All I can say about Bulbar is make sure they excerise and eat plenty as you don't want them to lose any weight. If they choke on water which is what my sister did, then you need to get the thickener for it. Keep them alevated when they sleep also. Don't let anyone tell you that excerise doesn't help them, because it does. My brother Sonny has been slurring since last summer. He found out that he has ALS just last month. The ALS doctor said he didn't think my broth had ALS because he was stronger then both my brothers wife or himself. But he started to lose muscle tone in his tongue, so he chews gum. I'm the baby of the family and of course the worrier. My brother is doing great with his diagnoises. I read that Al lost 14 members in his family to ALS. I just can't even fanthom that. I'm not very good at doing this on the internet. I hope it is ok with everyone. As I have no one to vent my worries to. I apologise. and thank you for listening to me rattle on.
THank you,
Kathy

 

[Al]

Hi Kathy. Sorry about your luck for having to be here. I think I'm the only Al here so was just wondering where you read I had lost 14 family to ALS. Or was it some other unfortunate soul on another forum? I have heard of a family with 5 people that have or have had ALS but that's the most I know of.
Having 2 people in the family with ALS gives you the right to vent. I wouldn't think one person will be upset.
We really are here to help if we can. Don't be a stranger. Take Care. AL.

 

[Granny]

Dear Kathy,
Welcome. Don't need to apologize for venting here, we all do it once in awhile! Each post seems to have something to help someone, as well as the person who writes it.
I also have bulbar ALS, my tongue muscles are all gone, but like your brother, the muscles in my limbs are very strong.
Must be so hard with more than one member of your family having ALS, and all the uncertainty that brings. Hang in there and contine to post.
There as so many people here who bring a lot of help and comfort.

 

[me]

hi kathy - welcome and don't be afraid to vent. This is the place to laugh, yell, cry etc.

 

[TBear]

Hi Kathy:
Sorry that you are here... what they were looking for is a specific genetic structure that is indicative of familial ALS. If they didn't find it before and are assuming that it is sporadic... yours would be the second set that we've seen here in the past month. Certainly an anomaly.
Vent away!

CHeers

T.

 

[jenner]

Hi all,

My brother had either bulbar ALS vs. PLS, depending on who he went to. He was 43 when he passed away in May 2010 and his symptoms started with slurred speech. No one else in our family has had ALS, though we do have motor neuron diseases on both sides (MS and myasthenia gravis). Even still, it appears to be sporadic with no other cases in the family. It is awful and I don't know how I will ever be OK with this awful disease.

Still just trying to hang in there,

J.

 

[LornaDoone]

Hi Kathy.. glad you found us. Venting is what we do best. Many are super supportive and I'm sure you'll fit right in.

My husband's family has ALS. His mother has ALS, her sister passed away with ALS. Two of my spouses cousins have ALS. All of them tested positive for the SOD1 gene mutation. Apparently it's the only one that can be currently tested. There are several other discovered gene mutations, but are not able to test for them yet. And it is assumed that there could be more undiscovered gene mutations that would indicate familial ALS. So, we have 4 family members with the disease. There is a sibling of my spouse that we think has it, but it's at the very beginnings and nobody is talking abuot it. It's currently being ignored.

I'm super scared what this could mean for my children.. but can't waste my life worrying right? LOTS of awesome years left. Trying to simply give praise to God for all that He has done for me and my family. And trying to enjoy everything that He still has left for us.

I'm here for you.. I totally get it!

 

[KC2U2]

this thread was from 2005

 

[LornaDoone]

this thread was from 2005

HA HA HA. That's funny. If there's a current reply, I just assume the whole thread is current. I need to pay closer attention!

 

[abbas child]

But, Mandolyn, your reply to Jenner is appropriate... and she is new here. And, it helps us know you better. All good!

Jenner, I'm so sorry about the loss of your brother. I hope that the forum can help you in some way as you continue to grieve for your loved one. We have some awesome caregivers including some who also recently lost their own PALS.

Kevin, great catch!

Grace to all,
Ann