Unusal onset?

[Blackpool]

I am hoping that somebody out there has had similar onset,July 9th at the Als clinic I was told I had different onset with resportary first and then partal loss in limbs legs and arms.I went to the hospital yesterday and met my team and the resportory Doctor.I was tested blowing etc. sitting in a chair intake of oxygen 97% out co2 72% they figured this was great and I was delighted,but my problem was still not being able to sleep and lie down, they brought the girls back and tested serpentine 35%not good ,which muscles did Als get? I am sleeping upright in a recliner untill I get in sometime next week for a bipap machine.
The Doctor mention Trache at future date also how my directive should read ,example if I get pnemonia an emergency trache could be performed and bring me back to nearly what I was before the incident, but it would take longer.Lots to ponder, if any one has imput ,I appreciate it thank you. I know these decision are personal but I like to look at both sides of an issue.

 

[BethU]

Blackpool, I believe Marjorie's husband had respiratory onset, so hopefully she'll be able to answer some of your questions.

As to the decision about a trache: some people are thrilled with theirs and advocate them for everybody, but for me, the decision (like so many in ALS) comes down to logistics.

In my case, I don't have family members to provide 24/7 care (round-the-clock care is a requirement in California), and my speech is gone, so finding good caregiver(s) for what I am able to pay and training them would be an insurmountable challenge. It is difficult for me to even communicate with home care nurses sometimes, or the cleaning lady! People simply are not trained to listen patiently and carefully, especially to someone who is typing out an answer.

The final consideration for me is, if you have a trache, you cannot get on hospice, so my destination would quickly be the "trache ward" in a nursing home and I know from personal contacts that it would not be a pleasant experience for me. Others might love it to pieces, but not me.

If my situation were different, I would no doubt make a different decision. A lot of PALS turn this into a moral choice and use inflamatory rhetoric about "quitters," "suicide," etc. My best advice is to simply ignore all that, and evaluate your own personal situation and your own personal feelings about quality of life.

As to the wording in an advance directive, I believe there's a standard way to put it to OK an emergency trache but reject long-term. Somebody is sure to know on the forum.

 

[Erica]

Blackpool,
I'm so sorry about your diagnosis. Did you get the Spirometry testing done in February 09? or just now?
I was told that progression of the Respiratory onset is well monitored by FVC.
I met a lady with respiratory onset of ALS, who monitors her breathing function at home with inexpensive device called Peak Flow Meter.
I'll be thinking of you,Cookie

 

[agneta526]

I do notpost very often because I realize my attitude is different than most. I have lived with this for almost 3 years, got officially diagnosed in November 0f 08. Cannot walk, talk, eat, swallow or do anything on my own. I spend my day in front of the computer, never leaving the upper floor in my house. It is too hard to go on a stair slide with the wheel chair, too hard to transfer me. I am on hospice, have a supportive family but feel only like a burden to all of them.Have a lot of pain and as I used to spend my time researching "cures" and progress all over the world I am now more interested how to leave it all behind without causing trouble. I am not having a bad day, it is my first thought when I wake up and my last before I close my eyes. I have been outside 3 times since Christmas. This is not enough of a life for me and I wish I lived in a state where I had some rights. depression are we not all depressed and why take pills to "feed" the ALS? I wish they were allowed to discuss this on the internet because I thinkmany of us feel the same way. I just want to make sure that it is done permanently and correctly.

 

[Blackpool]

Thank you all for your input it is welcome and as I said in my post I do like to look at both sides.Agneta526 may you be granted peace in both mind and body it was kind of you to share your feelings even thou you know it might not be the majoritys feelings.Cookie the spirometry testing was done yesterday. Bethu today I called the Als clinic(what a god send they are and so nice) and they will send out a directive for me that is just for Als and we will be able to register this through my Als Dr.I believe they mentioned the peak flow meter Bethu and will most likly find out when I go for the bipap next week.Never heard of rhe Trache ward that is something I will need to look into as I will probably spend my final days in some "institution" even thou I have a wonderful and supportive husband and family, it wouldn't be vaible.It is a beautiful dayand I will go and watch the mother nuthatch (bird) teach her babies how to get the peanut butter of the large pine cone we hung in the tree, they are so funny to watch they keep fallling down., after 3 tries momma bird will feed them.