Sunday, July 30, 2006

Sunday Scribbling- My Two Cents

I was recently asked to participate in a ALS Advocacy Community online. After reading the profiles of patients and caregivers I was outraged! ALS does not get much money for research because the majority of patients die in 1-3 years, yet 1 in 1000 will be diagnosed in the world. When a family member dies a lot of families give up the fight for the cure, but not all. I have had a slow progression and have learned a lot about ALS and the medical community. I never realized how much I had learned until I read of their pain and suffering.

Neurologists are going to get my two cents worth today. They are good at diagnosis and things they can fix through surgery but stink at helping ALS. They only see you on a "as needed basis" and for me that is once a year. Many who progress swiftly are left to their regular doctors who know very little about ALS and are left to suffer. Neurologists , in my opinion, wash their hands of ALS because they cannot fix it. These patients have side affects and don't know they can control them with drugs giving them a better quality of life. Better quality of life helps with the will to live and hope. I would be in agony with muscle cramps, wear diapers, drool and be in a wheelchair if not for the help of drugs. Their family doctors just give them a pity look and try to make them "comfortable."They are not given hope they are given time frames.

I was told I had 3-4 yrs to live, 16yrs ago. I had a family doctor that tried to say "I'm sorry but it looks like it's finally affecting your lungs" three times, which is the beginning of the end. I have gone home many times with the attitude of preparing to die because of a well intentioned doctor. I demanded a lung function test every time and every time it was allergies. I joined a drug trial and learned a lot about ALS and had great care for those two years because I was able bodied enough to get in. Not all ALS patients are able bodied enough to get in a trial. There are ALS clinics but only a small number have access to them because they don't live near big cities.


I'm outraged that there is needless suffering caused by doctors who won't take the time to do a little research, call the experts or help their patients live a better quality of life for as long as they can. They are doped up and sent on their way not understanding what's happening. I hope I can a least help one person in this new online community to have hope and not suffer. It's not easy asking questions of strangers online much less one who has made it in the 1% group of people with ALS. Doctors need to step up!

I'm way behind on my blogging and I can't wait to see other entries. The heat wave is over and I can get back to the gym :)

27 comments:

Cynthia E. Bagley said...

Tammy...

I am sorry to hear about what you have been dealt with ALS. I also have a chronic disease. I have survived about 3.5 years so far. I hope to live another 20.

Keep up the good work. :-) We also have troubles getting funded for our disease because this disease is so rare. What has saved us is that some medications for Rheumatoid Arthritis can help us control our disease.

Belle said...

Tammy,

That was very informative. People who have the disease need to know these things. I hope you have an impact, with your knowledge , you should have.

You go, Tammy!

Star said...

You truly are a warrior, Tammy.

One of the columnists for our newspaper suffered with ALS and shared the entire journey from the shock of diagnosis through to his last article, which was published about two weeks before his death. Because of his courage to share his struggles, all of his readers were granted a first-hand account of this puzzling disease and its affect on his life. Keep fighting for the rights of those who are less informed; they need you!

bella said...

Tammy, through reading here, I know you have suffered with ALS. I know that with your fiery spirit and your courage, you can reach so many people with your healing hands and words.
My luck to you always.

Deb R said...

I had no idea doctors knew so little and did so little for patients with ALS. That's appalling. (Although I'm not as surprised as I wish I was, since my opinion of Western medicine isn't the highest! Appalled yes, surprised no.)

I hate the way doctors do their time frame predictions too. It's one thing for them to say that people at a certain stage of a certain disease have say a 1 in 10 chance of living 5 years (pulling numbers out of thin air here just as an example), but they have no way of knowing WHO is the one and who are the nine, so it seems to me that those numbers mostly just hurt people's hope. Bah! Men with god complexes!

Sorry, Tammy, didn't mean to turn a simple comment into a rant. Thank you for a thoughtful and interesting post!

betty said...

Tammy, when you have time, check out the journal Caregivingly Yours. It is on my list of other journals in my journal. I don't know how to add a link here. Anyway, he wrote a similar entry tonight; his wife has MS. Very insightful; both yours and his.

betty

Chris said...

I don't like the fact that doctor's give timelines. Who made them God? My brother had a great oncologist and when my brother asked him how long he had, he said he had no idea and the only person who knew that was God. They would just be a team and take it day-by-day. I honestly think this kept my brother alive even longer than he expected. Doctors need to be educated before they treat someone with a disease. You are just the person to bring this to light for ALS. You are a walking miracle!

bonnie said...

You are an amazing woman! More support groups for people with chronic illnesses need an advocate like you. And you going to the gym!?! Blessings to you for a long and healthy life!

paris parfait said...

Tammy, thank you for this informative, powerful post. I've seen examples time and time again where people struggling with serious illness and medical conditions have to become their own advocates, simply to get the treatment they need and deserve. The work you're doing helping others while actively fighting your own battle is courageous and inspiring.

Becca said...

Tammy, thank you for having the courage to speak up about this situation. All too often patients must struggle to become advocates for their healthcare, all at a time when they and their families are at their most vulnerable points. You are so right - doctor's need to step up and continue to provide the utmost effort for every patient, and certainly not just for the ones whose diseases are curable.

Tabor said...

Your experiences really open the eyes of those of us who do not see this disease on a daily basis. Your advocacy is the reason you have been given more time. Only the strong survive and you are certainly strong. I am now much more understanding if I see someone amiss when they are out in the great about.

AscenderRisesAbove said...

Grrrrr.... agreeing so so much about doctors who won't research; won't read a lousy article; intimidated about helping with something there is no cure for; doctors who make you beg; doctors who abandon; doctors who tell patients to be their own advocate - then resent it. So difficult not to curl up in a ball of rage. Admiring your positive attitude and the constant love of your husband and friends.

acumamakiki said...

Wow Tammy, I didn't know you've had ALS for 16 years.....you're amazing! I love that you advocate for yourself and I'm only sorry that you have to do so. It's embarrrassing and shameful that our country does so little in the way of medical research.
You truly inspire me.

bb said...

Tammy you ARE a warrior - and your desire to help others is the highest expression of compassion. You are beautiful and brave. Sending you much love x x x

Amber said...

It is funny, because as I clicked on to your blog, I thought again abotu how much I love the title you gave it. "The Daily Warrior". It is such a great name! And then I read this, and I see how PERFECT it is for you, and your amazing spirit! I just love people like you. I love people who grab life by the balls, no matter what comes their way. You are so inspiring.

:)

Madeleine said...

Tammy i really do find this abhorrent. it mortifies me to hear the little that is done of behalf of these sufferers.
you are little piece of dynamite in all of this. it's people like you who can really help others through your extra kind efforts.
can you feel the admiration coming through the screen, hon?

love you just a bit more- again.xx

ps i would have commented earlier but your post did not come up. :(

Ally Bean said...

your two cents is a whole lot more than 2¢. thanks for telling us this info.

Madeleine said...

pps. can you give me your email address please as my mac does not read yours for some reason??

Kim G. said...

Thanks for this powerful post! I love how you are taking your two cents beyond the page of your blog and using it to help others. Blessings to you on this great new role for you!

chiefbiscuit said...

Information is power - you are doing a good thing.

mikim said...

Tammy, this is an empowering piece! - thank you for this.

Kamsin said...

I've never had a massive amount of faith in doctors. I guess most doctors either want an easy life or they want the glory from cases they can fix in an obvious way. Maybe that's being unfair. Anyway, it's a good job the world has people like you to speak up for those who are weaker and need your help.

Turquoise CRO said...

Thank God, You were able to be in that ALS trial Tammy! LOVE and PRAYERS for you sweetie to stay strong and keep the faith! You are on my mind this month as you get ready for your daughter's wedding! xoxooxxxo ps. get plenty of rest!the word verification is jibSPA! SOOOOO don't forget to treat yourself to relaxation!

Clare said...

Great stuff Tammy. This is the best use for a blog and you write so clearly and so well - it makes you a powerful advocate.

Patrick Leer said...

AMEN! http://journals.aol.com/daddyleer/CaregivinglyYours/

V said...

Hear, hear!
Hugs,
V

~ Lori said...

This is outrageous and I totally agree that not enough attention is given to ALS. Don't ever give up or believe what the doctors say. They told my grandmother she'd never walk again at least 3 times in her life and she proved them wrong as you are each time. Let me know if there's anything I can do to help get the word out. Hugs, ~ Lori