introduce myself

[anna grace]

Hi, I am anna grace, my husband who is 65 was diagnosed with bulbar ALS 6 mo.ago. It is difficult to find a whole lot out about particular type. I would welcome all the info anyone has to help us through this difficlt time. Thanks so much.

[Al]

Hi Anna Grace. Welcome to the forum but I am sorry about your husband and the reason you are here. If you use the search feature and type in bulbar I am sure there is quite a bit of information there. You could also read back on the PBP topic as well.

[BEVERLY PARRISH]

Jackie, I Know You Feel Fearful And Scared, Wondering If Horace Has Six Days, Months Or Years ,but You Do Know That He Is Ready,if And When His Time To Get His Winds .
You Buried Dr Paul And He Said To Me ,jackie Will Be Ok, She Is Braver Than She Knows. You Are ,loyal And Brave And With Your Faith You Will Get Through All That Is Put On You, The Scarry Part Is Not Knowing What To Do, But If You Try To Stay Calm, That Will Help Horace, As He Wont Feel So Anxious If He Sees You ,doing What You Can Calmly, I Love And Admire Your Strength, You Are No Alone, Let Go And Let God, And He Will See You Through The Rough Days And Nites, Mly Means Me Loving You, Beve ,your Big Sister

[Cherrish]

Hi Everyone;
Been wandering the halls for many months now...I'm not quite sure I'm doing this the right way but...after months of getting such helpful info I thought I should introduce myself I'm a working Mom of 3 beautiful girls 15, 17 & 20 and a husband of 24 years who was diagnoised after 2 years of suffering with ALS...long story for our struggle to get to this point and being a very private person this is very hard to do...from being diagnoised to now he has progressed daily to what I can't describle...I'm dealing with a father who has cancer in Toronto and alone cause my mom passed away with cancer so for 4 years of my life I'm dealing with taking care of "my loved ones" ...I have however held a fundraiser in Brampton which raised over $2.000.00 for the fundation and my hubby just had a article written on him in the Trucker News....I don't know how to inclucled these articles ....so I would love to know how to attach things. Such as pics from the events, and the article...any help would be appreciated....Not sure what else to say....other then I'm sorry it's taken me so much time to write!

[Al]

Hi Cherrish. Welcome. I'm in Orangeville too. If you call anyone at the als ontario office they'll give you my phone number. I've heard about your husband and would like to talk if you'd like.
AL.

[Thumbs Up]

Hi Cherrish. Yes I have the article and I was trying to figure how to get it to Al. My husband is a trucker and was amazed by your husband will to fight. I lost my mom and sister to ALS. I live in Brampton and hope to get to the next support meeting and certainly look forward to meeting all of you. God bless and take care.

[Suzan Williams]

Hi I'm Suzan from outer Melbourne, Australia. I have a rose between two thorns and they are aged 14, 16 and 19 - (the thorns are the boys, but at the moment my rose is a massive thorn, but loved dearly). About 3 months ago I became aware of fasics and twitches all over my body, cramps and muscle soreness, vibrations, tiredness and numb spots - my doctor sent me to a Neuro. I then had an EMG and NC which they say came back negative (yet I clearly saw a fasic reaction on the EMG). I then saw the specialist who said nothing to worry, but has referred me for another EMG, NC in 4 months. I am not sure what he is up to because I am sure if there is nothing to worry about he would not have re-referred me. So all the above symptoms continue to get worse, but what I am most annoyed about is that I cannot find a specialist MN centre in Melbourne, Australia via the internet. I thought I would get my local doc to send me there or do you think I should just wait and see. Your opinions would be greatly appreciated.

[sepidehrx]

Hi, I am Samantha and am new to this site! I was diagnosed with ALS 6 years ago. I need to know if anyone knows about travel requirements for moderate to severe restrictive respiratory dysfunction. I have heard about using/carrying Bi-pap and C-pap machines but need more info. Thanks.

[CindyM]

Quadbliss, a regular poster here, has tips on traveling with a bi-pap. Try a search from the tab at the top of htis screen.

Hope this helps, Cindy

[les2410]

I am completely new to this so please bear with me.
My Dad was diagnosed with ALS in September. I feel asthough my whole world has been turned upside down.
His speech has already deteriorated, he has difficulties swallowing and chokes constantly.
I believe that he has already given up as he no longer speaks to friends or family, he has become an unrecognizable person to myself, my sister and my mom. I can not begin to pretend that I understand what he may be going through, but I need help in coping with his drastic change in personality. He always loved life and everything about it, and now would rather be alone and not speak to anyone.
What do i expect in the future

[BarryG]

les2410,

Hello and welcome to the forum. I am very sorry about your dad's diagnosis and I think that I can comment about what is happening with him as I have struggled with the same issues since being diagnosed with bulbar onset ALS in January 2008. My speech has been steadily deteriorating to the point where now almost no one can understand me and it has become almost impossible to swallow food. While I don't know your dad I do know that even though I try to maintain a positive attitude it is sometimes very difficult to get out of bed in the morning. When it is hard to talk so much of your life is taken away and it very discouraging to not be able to have a regular back and forth conversation. And eating with others is so important, as much for social needs as it is for nutrition. The only thing that I can say is that your dad needs to talk to a speech language pathologist to get help with talking and eating strategies that can make it easier for him (and others) to cope. Is there an ALS clinic that your can dad go to where he can get advice on the disease and how it affects not only him but his family? Thanks to the professionals at my clinic (and the advice from the great people on this forum) I have various electronic speech devices that help me still be part of things and a feeding tube that allows me to get the nutrition I need without choking.

I hope that your dad can come to realize that although his life has changed it is not over and that his family still needs and loves him. I am still trying to be useful in any way that I can and even though I don't seem to accomplish much each day I still look forward to doing what I can. Talk to him and tell him what you are feeling, he can still hear you just fine even if he can't easily reply.

All the best and we're here if you need to talk.

Barry

[hopingforcure]

Barry,
what a helpful and caring post, I think this would be a good one for so many people who come on board with bulbar symptoms, and cals, it was so true, and really will help people understand. You are sure one of the good guys.. glad you are with us...