AngelManFL / Don

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prayers

Prayers for you and your mom - I'm glad you have replied - Ihave been concerned about your appointments. Take it day by day and do your best - we are here for you - come talk anytime.
{{{HUGS 4 U}}}
 
hey Don, keep us posted. Hope your mom is feeling better.
At least Mayo clinic is doing everything they can for you, hopefully you will get answers after all your tests.
I guess I'm aliittle lost do they not think it's ALS....
 
Thank you to all of you - when I say you give me strength, man I really mean it. As far as ALS, they just won't say yes or no - just that when all is said and done they will give me an answer... which is understandable I guess - it just hard to wait. I go back again the first week of March for more test (swallow study and dysphagia) and maybe a nuerosurgeon. A few of Dr.'s want me to go to Rochester, MN Mayo for about 3-4 weeks! I told them that right now that is just not possible - it would be all outpatient, which means a month in a hotel - I just can't afford that right now, not with Mom the way she is and the business struggling.. I know most of you are thinking my health should come first, but my Mom and my finances are just possible right now. Maybe in a couple of months if my is more stable and I can save up more trips... It was 250 a night in Jacksonville... I just pray that they can give me an answer in March so I can at least stop fighting the unknown.

You all mean so much to me, thank you for support and well wishes...
Goodnight
 
glad to hear your back Don. why do they want you to go to MN? have they given you any results of the tests they have already done? hang in there. i understand about needing to be there for your mother, but you do need to take care of you so you will be able to take care of her.
kmgy
 
still here- still praying

thinking of you - let me know if you decide to head for MN. i may be able to hook you up with a living situation.... depends on timing...Please stay in touch!
 
Hey Don. If they want you to stay 3-4 weeks there is no test in the world for ALS that they need you for that long. Either you've got something weird or a big wallet. Either way I'd be asking a whole lot more questions before going anywhere. By the way, I've been to Jacksonville and there ain't a room in that town worth 250 bucks. You got screwed.
AL.
 
Hey Don just wanted you to know that i am still thinking about you and praying for your return to good health....gotta luv a man who cares so much for his mother !Dont ever give up hope!Take care of you and we are all here for you !Your courage and compassion and strength are an inspiriation to all....gnight my dear friend and i want for you to be rewarded for your openess and spirit if anyone deseres a miracle it is you!I pray everynight for a cure for this horrible disease and always include you in my prayers ...whatever it is that you have we do not want to loose you! Gina
 
Hi Don! Nice to hear from you, I was thinking about you last night, as a matter of fact! Don, I see where you are from Tampa Bay, Fla. area, that is not a 2 horse town, is it? Why in the world would they want to send you to Mayo Clinic in Rochester, Minnesota or whatever? Don't they have neuros with savvy in Tampa Bay, or some other bigger city in Florida? I know Florida cannot be that bad! You being from Florida, why would they want to send you to Minnesota? When my son was diagnosed'ed, it was done here in Houston, he didn't have to go to Mayo Clinic in Minnesota, or Sinai Hospital in LA, what is their problem? Don't they have specialists where you live? My Goodness!

Irma
 
Don,

Are they telling you why they think you should go to Minnesota for 3 or 4 wks. Don't go anywhere until they can tell you why. What tests do they have there that they don't have in jacksonville. Maybe they really don't think you have ALS and can't figure it out. (I THINK YOU NEED DR. HOUSE) Hopefully after all this and all your pain they will figure it out. Hang in there and try and stay positive.
I forgot what your other post say about your emg results and reflexes, etc.
 
Details from Don

I'm sorry for not being more specific in my earlier post.. One of my greatest concerns I expressed to the Mayo was the amount of narcotics I am on - I wear a Duragesic 100mcg patch every 2 days, take four 4mg Dilotid a day, two 20mg Oxycotin, 20mg of Baclofen 3x a day, Valium 5mg 3x a day, Limbitrol and Gababentin on top of those.. They do not take my pain away or seem to help in any way. Every Dr I have seen in the Tampa Bay area just want to increase them or give stronger ones - and no one seems to want to help me decrease anything! To me they are just a bandaid - not a solution, and I want a solution. They said at the Mayo that at this moment I am somewhat stable and they don't want to change that my changing my meds... The reason for going to Rochester is enter a 3 week program designed to help my body get off these @$#^&* drugs! They say it is too dangerous at this point due to the fact how long I have been on them - they make me feel sour and cloud my judgement (at least my opinion). I hate the way make me feel and I want off most of them - the Baclofen is the only one I can tell that helps me the most. They did find 2 disc in my spine that nearly gone - so I am supposed to see a neurosurgeon when go back in March. It is difficult trying to keep my hopes at even keel - I just pray to God the disc trouble could be the root of all of it! Wouldn't that be wonderful! But like I said, I'm trying to keep it real because that doesn't explain my lung capacity now at 39%, inability to swallow without choking and so on and so on... But it does give me a spark of hope that the Dr's here locally are wrong about ALS.. They did help me get the mask adjusted to the right point - so I am able to use it and makes a world of difference on how I feel in the morning. In March I have the swallow studies and will the results of everything and hopefully have an answer. It would certainly help to just know what it is I have to face and deal with so I can get on a course to do so. The worst is the unknown. My days are filled with ups and downs, I just so tired of being in pain and losing physical abilities is frustrating the life out of me. Of course the ten days I was gone - NOTHING at work was done! Of course I was only suppposed to be up there one day.. But my year is almost closed, which takes a huge weight off my shoulders. I so badly want my life back...
Well I'm too tired to keep typing, so I hope this explains a little more...
Goodnigh my dear and precious friends.
 
Hey Don. Any chance you can get someone to buy the business? It's just dragging you down.
AL.
 
don,

Did you talk to your family dr about wanting to get off all the narcotics. I'm sure he can help you with a program where you live.
 
Hey Don just wanted to tell you that i am still praying for you and hoping that the disc problem is the root of it all!I just dont understand how or why they would want to take you off pain medications without first finding the cause of the pain.Are they going to put you on some other drugs that are less harmfull and dangerous?This is just so confusing to me i dont understand and im sure even more confusing for you to be living this nightmare.....God Bless you Don !...Gina
 
2 cents

My mom went through this whole disc issue and became comletely incapacitated - even incontinent - she could barely even move before they finally did back surgery - fusing some ofthese vertibrae - she was SO UNcompfortable - Pain through out her whole body - they Just kept trying more Rx too - finally they did surgery - se never regained the strength that she had lost but the pain was greatly reduced - this sounds so much like what my mom went through - besides the extra ALS type symptoms -

{{{ HUGS N PRAYERS}}}
 
Hi to all and thank you for all your prayers - my Mom is doing a little better, she will be getting an injection of Procrit to increase her red blood cells every 2 weeks for the rest of her life.. they won't say it is lukemia or not - just that her bone marrow is not producing enough red blood cells.. at least she is feeling better and that is what counts. I slept the entire day yesterday - just needed the rest after the last couple of weeks. Al, the hotel was actually attached to the Mayo itself - thus the price, it was worth it for Uncle, he is 68 and had to do a lot of walking - it was just him and I the last time and he was an incredble support to me and the room had an adjustable bed for me and a fully stocked kitchen.. Prayerfully I can get our yearend finished this week - we file taxes in seven states and had to reconcile seventeen accounts - a tremendous amount of work - but we got it almost finished.. As for me I just don't know what to think. I am getting physically weaker still, it is such a struggle to get out of bed in the morning and go to work - but it is what I live for.. I love my job, my company, working with my brother - and can't even fathom giving it up. I am afraid it would cause me decline a lot faster without it. I know it is stressful and takes a toll on my body - but emotionally it is what keeps me going. I have always been a workaholic and just couldn't imagine how giving it up could help me... I honestly believe without it I just spiral downward.. I pray I will never have to make that choice - at least not anytime soon. Without a paycheck how would I be able to take care of my Mom - nevermind myself? It is just not a possibility - at least not while my Mom is still here. She could never survive it if we had to move.. she will not be here much longer and I want her to be as comfortable as possible while she still is.. I am still suffering pain along my spine- the tens unit they gave me does help alot, and I pray so hard they will be able to fix something in my spine - I'm just not ready or prepared for any other answer right now.. I know this sounds like denial, but right now it is all I can handle. I have so much on my plate right now, I just pray they find something.. I have to hold on to hope as long as I can.. I'm probably getting ahead of myself - but it is just so hard to wait and not have answers or even know what it is I am up against. I want to thank all of you for the support and care you have given me, please keep praying and I'll to be more patient - but I must admit it is not strongest suit... Good night friends.
 
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