Update als clinic today

[Blackpool]

Well I have a diagnosed at the Als clinic today, it is confirmed Als ,the diagphram was the start site and now upper and lower limb weakness I will be going to the Hospital for a Bipap machine ASAP but no later than next Wed. Barry you where right about the clinic wonderful people an d Dr. Wendy Johnstone is very straight forward and answers every question. The patients that she has treated with breathing onset have generally had a year or so.Niagra Falls here we come , it has been on my bucket list since I was ten and I am 63 now.We have to deal with what life gives us, the hardest thing is my grandaughter who is seven ,she and her Mom live with my husband (40years married) and I (No Dad in her life)

 

[lydia]

Oh I am so sorry to hear about your diagnosed. I just responded to your thread on the other forum. I know the people here will be a source of comfort and support as you move forward.

Lydia

 

[Zaphoon]

I am sorry to hear that the clinic confirmed ALS. Here's hoping the progression slows way down for you!

Zaphoon

 

[laurel]

Blackpool, I am so sorry to read of your diagnosis. Fulfilling your dreams sounds like an excellent plan--something we all should do. May you have love and support in your journey ahead.
Laurel

 

[BarryG]

Hello again Blackpool. First off let me say how very sorry I am about the bad news, I know how devastating it is to be told something like that. You and Laurel are right, it is important to do what you want while you still can but I hope that you don't give up. I know that there are a lot of people here on this forum who have defied the "odds" and haven't believed everything that was supposed to be in the cards for them. Take care of yourself and your family and maybe we can meet at the clinic someday (hopefully in about 5 or 10 years)

Barry

 

[Blackpool]

Thank you all for your support, I am going to take the new drug ? it begins with R my brain isn't to sharp tonight,too much to think about.Has anybody out there taken it .I will give myself a little while to absorb this and cry a little and then put in the closet close the door and live life to the best of my ability. I know some days will be bad but mind over matter.

 

[kylisa]

Well I have a diagnosed at the Als clinic today, it is confirmed Als ,the diagphram was the start site and now upper and lower limb weakness I will be going to the Hospital for a Bipap machine ASAP but no later than next Wed. Barry you where right about the clinic wonderful people an d Dr. Wendy Johnstone is very straight forward and answers every question. The patients that she has treated with breathing onset have generally had a year or so.Niagra Falls here we come , it has been on my bucket list since I was ten and I am 63 now.We have to deal with what life gives us, the hardest thing is my grandaughter who is seven ,she and her Mom live with my husband (40years married) and I (No Dad in her life)

Go to Niagra Falls and anywhere else you want to while you are able. Just be sure you do everything the clinic suggests. Do not fight everything tooth and nail. And just for the record, my mother lived for 2 years with bulbar.

 

[beverly rees]

Dear Blackpool,
I am so sorry that the als diagnosis was confirmed. Just remember alot of people have lived alot of years with this disease and still can have a decent quality of life. Every individual in different and know one knows why some people progress quickly and others very slowly. When I asked our neurologist from all his experience with als patients what is the one thing that it the most helpful- he said that having a good support system with family and friends is the most important thing along with a good spiritual life. We are blessed to have both those things in our life which makes life good. He also advised to reduce stress in your life as much as possible and maintain good nutrition and avoid weight loss. I know how hard it is when you are intially diagnosed but please know that you can still have joy in your life. We will keep you in our prayers. Bev

 

[Al]

Hi Blackpool. Sorry about the diagnosis. I wanted to see the Grand Canyon. We went in 2005. Went skydiving too. We've had people here with bulbar 6 years and more. Docs are guessing. They really don't have a good handle on how long any of us will last. Don't believe them and wake up every day and tell yourself yes another day to feel good about being here. Attitude counts.

AL.