AngelManFL / Don

[swmn]

Don, We are all so worried - we need a post to know if you are Ok - many prayers coming your way - God Bless - and we hope to hear from you sooon:-D

[Gina]

Yes Don i am worried too.I know you are probably just busy delegating and taking care of business which is time consuming.Just a short though for us worriers here!!!prayers ....Gina

[AngelManFL]

The two of you have become my best friends and have given me so much encouragement and strength and the ability to keep my self strong enough inside to get up in the morning and keep fighting.. I am sorry for not being able to post more often, but leaving the Mayo Clinic without a Dx just left me devastated to the core... The initial examination went ok I guess, painful, the test were thorough but also very painful - then had to leave with no Dx or answers - drove all the way home Wed, went straight back to work Thurs and Friday and just slept all day today... The weather here is very damp and cold and has been for about ten days.. I have to go back to Mayo for testing all day Monday 2/4 (Pulmonary testing), then leave and come home and don't go back until March 4th for 3 days of testing - that is when I will finally meet the Neurologist - then leave again (or just stay depending on work) to finally get a Dx on March 10th..... at least that is the plan as it stands.. I never expected to have to wait a month and a half for any answers.. Gina you have been on mind every day - I pray to God you are holding up well and standing strong, I also have been praying for your children and their families - I have just been so worried about you... SWMN - you have just been a rock for me... your pm's have kept me going - especially when I was at the Mayo and was so discouraged after receiving my 'schedule' - you truly were threr when I needed you the most - Thank you.. you certainly were never bothering me - you were giving me strength and hope.. I am so scared and at the same time praying for something they can fix... The pain in spine is increasing on a daily basis, I already take so much meds - it just frightens me when the pain is spreading so quickly throughout my legs, shoulders, hands... I am just so tired of suffering for so long - every morning it is so tough to get out of bed... I feel like am whining and I am sorry for that, but the waiting is killing me and the pain isn't helping.. I just can't fathom not working and giving up my company which I have worked so hard for.. I am grown man and it lay here in tears.. I'm very tired and must sign off, hopefully tomorrow will be a better day. I could have never made this far without all of you on this forum - AL, CindyM, Irma and all you others who given me so much support - I just want to thank all of you for being there for me.. I have so much love and deep deep appreciation for this forum and all of you.. thank you.

[swmn]

Hey Don -
I am so sorry that this process is being drawn out - Mayo may have some other experimental projects for you b/c you are reletively young - I'm sorry you are experiencing so much pain as the muscles begin to decline - but you have a strong mind and heart! you hang in there - You will be so sad at times - but keep doing what you love: If you can "compartmentalize," you will be able to handle the struggles better - My friend John can really do this well and b/c he has continued to work and isolate his thoughts from the ALS all the time, he has done a great job in his fight against this Nasty disease - I only hope you - and john continue to fight and work as long as you love what you do - you will find respite from the disease.
God bless you and all the PALS out there... prayers and hugs to you all

[Gina]

Don, as the song goes "Thier are angels among us" AND i truly believe that you are one of them!I feel so fortunate to be a part of your life and struggles and you are never very far from my mind or heart.You have given so much love and support also to me and others and your courage is so inspireing!One thing i do not understand is why you are having such horrible pain.Even though my husband suffered so from breathing difficulties he never complained of pain at all and most with als says besides the emotional and discomfort of breathing issues for the most part the pain you are describing is either absent or not near the severity.I am praying for you that it will turn out to be something other than als...something that can be treated to restore your health!You are so passionate about your work and i love to see that in anyone as i feel that if in life you have found your passion you have found one of the true meanings of life........prayers and hugs for you .....Gina

[Icanmanz]

Hi Don, hi! I just read your post. I have been gone all day. Went to see my sis's husband, he is a pretty sick man. I spent the day with them, and just got back.
Don, you have been, and will be in my prayers. God bless!

Irma

[Al]

Hang in there Don. Wish I could say things will get better. But then, who knows? Maybe they will.
AL.

[AngelManFL]

Well, today was definitely a better day.. I think the initial shock of leaving the Mayo w/o a Dx and having to wait 2 months - is beginning to wear off.. It definitely seems that the breathing machine is what makes or breaks my day. Last night I was able to sleep most of the night with it on, it just makes such a big difference. I have had such a hard time adjusting to the mask - mostly just the pain it causes on the bridge of my nose, I mean sometimes it wakes me up and it hurts so bad I just can't put it back on! I spoke to the Respiratory people and they suggested putting a pad under the forehead pad - little did I know that there was a forehead pad - it wasn't even touching my forehead!!! (duh!) She suggesting using a Makeup sponge to help - well I never really got out of bed yesterday so I just used a folded up paper towel and it made the world of a difference - I guess before, the entire weight of the mask and hose was just hanging on the bridge of my nose.. Well today I got the pads and pray they will help even better.. I am trying to be strong and keep a positive face on - hoping it will help my Mom cope and eventually help me feel strong and more positive!! :? I just guess it certainly can't hurt to try.. I have missed you all so much.. I head back to work for a full week tomorrow, praying I have the stamina to get thru it.. If nothing else - it is a wonderful distraction from my own issues - and that has to be a positive thing!! I was up and out of bed almost all day spending the day with my Mom and even a surprise visit from my neice and Great nephew, he is just 2 yrs and such a wonderful child and just loves rides in my chair too!! Again - thank you so much for being here with me through all this and if nothing else - just listening (or I guess reading) my ramblings... Goodnight my friends.

[Icanmanz]

Don, happy to hear you are doing better!

Irma

[kmgy]

yay, glad to hear from the angelman. I knew you had your appointment at mayo - I am sorry that they could not tell you much. I think its awful that you have to wait so long to go back, and then it is multiple appointments. good luck. glad your mask is working better and you are feeling better with it. sleep is everything.

kmgy

[AngelManFL]

Hi Irma, I hope that you are well.. AL, it is always great to hear from you. and Thank you kmgy..

Last night I thought it would help to sleep with one of those curved tempurpedic pillows - NEVER again!!! to boot - I had tightened the straps way to tight! I woke up with a 1/4 inch dent along the back of my head, just below the 'bulb' - it is still there 14 hours later! All day it felt like I had vice around my head - Has anyone else ever had such an experience?? I take alot of pain meds and it is still very painful to just lightly touch the back of my head... I'm not sure if I can bear to wear it tonight... Any input or suggestions would be greatly appreciated.

Otherwise it has just been a long day - 11 hours at work (closing the year, trying to avoid filing for an extension..). I pray to God that tonight will go smoothly, my head is just to sore to wear that mask again - the dent is just too deep and dark red.. I jsut never imagined that type of pillow would cause such awful pain, of course it doesn't help that I don't move an inch in my sleep either - am I alone in this? Sorry to be so negative, it has just been a long tough day... Goodnight all.

[Jamiet]

Don,

Have you thought about taking about two weeks off of work. I sound like you, very hard working and dedicated. I know it seems you could never do that, but i did it....two weeks, no contact, no work...just relaxed.

I was suprised at how much i was able to recharge my batteries.

Just a thought. I have alot of pain also.

Rgds,

Jamie

[swmn]

Only you know what is ultimately best - but I do know that if you go without your mask you will feel like Sh@#$ tomorrow - the lack of O2 will no doubt, take away from the recovery that your body is trying to get while sleeping -

Do what you can to get comfortable - but dont cut off your head pain to spite your breath - if you know what i mean - may be you could lay differently... I just get scared for you when you say you will go w/o the machine...

[AngelManFL]

Hello to all,

I have not used the BiPap the last 2 nights... it has really taken it's toll on me. There is still a 3inch wide by half inch welt on the back of my head that has hurt awful - it has been three days.. tomorrow morn I see my Dr(Gp). I have used many ice packs but they don't seem to helping.. I will take extra meds and try to stay up late and will try to wear the BiPap - I just can't get over the difference w/o it.. Work is just nuts and stressful - year end and financial worries, it just so demanding - there is no chance of taking time off any time soon.. I am taking time to go to the Mayo as it is.. I leave Sunday again for one day of testing on Monday and come back again - travelling is not easy to say the least. I pray to God I can at least get a few hours w/BiPap on - that welt is just killing me though.. it is also still red and warm to the touch... we'll see what the doc says. I'm so glad you all are here for me - I have been so down lately and feel weaker everyday, actually just really tired.. You all are so kind and so supportive and I just really need you now - I feel like I sliding down hill and can't just can't seem to stop - I guess to be truthful - I am frightened. Having a hard time typing, so will call it a night. Good night my precious friends.

[Gina]

Don ,please dont go without the bi-pap it is crucial right now that you wear it.I am praying so hard for you ....please dont let the stress and demands of your work come before your health.!!!!I am so sorry that you are having such problems ajusting to the mask ...this welt on the back of your head could be another piece of the puzzle....an allergic reaction or just that the mask dosnt fit properly i dont know!Hang in thier and we will all be pulling for you.....you have allready been through so much it is heartbreaking to even read your posts now this problem has become so rediculously out of hand i cannot believe it......prayers your way ....Gina

[swmn]

Ok Don - bear with me
I dont get it - the bipap should have been fitted for you -Mayo is anal retentive about this - I know it's your own business you are trying to run - but how can you work if you dont get any sleep???
- not to be morbid - but going without the bipap - well - you are spending much of your night on the verge of death.... I know b/c my mom stopped breathing 66 times in 1 hour - that is pretty dead to me.... and she is ony on a c- pap...
I am really concerned that you would even consider sleeping w/o the machine -

Hey - you might as well stay up all night and work then - at least You'd be breathing.... - ok - that was harsh - but WOW - time to do a reality check on priorities! We want you to do as well as you can to fight this F@#$ing disease - but you have to help yourself - use the bipap -readjust it as much as you need to - but make it work - your life depends on it!!
We love you {{{HUGS}}}

[Icanmanz]

Hi Don, sorry that you are having a hard time. Don, why is that welt on the back of your head? Is it the elastic that is attached to the face mask that is causing that, or what? Have you tried to apply some Hydrocortisone cream on it? That Hydrocortisone ointment is good for just about anything! I will keep you in my prayers. You won't see me posting tomorrow night, I am spending the night at my son's and his family. You take care, and God bless! It is always so nice to hear from you. God bless!

Irma

[Gina]

HEY DON, i second what swmn said ....you need to reconsider your priorities....I know you love your work but sad to say we can all be replaced !I have never heard anyone say on thier death bed that they wished they would have worked harder!!!!!!!Your familly and friends and relationships are what you will have the most regrets about so please reconsider connecting to them and taking care of yourself so that you have time to build on those precious gifts.......Gina

[CindyM]

I agree. Any machine that allows us to get a good night's rest is worth the effort. Sometimes I wish I could just lie down and sleep like I used to, but proper breathing at night keeps my symptoms under control. I just have to face the fact that my days of living like I used to are over. This is my new reality. JMO, Cindy

[AngelManFL]

Hi to all of you - your care and concern for me so overwhelming and so encouraging to me. I have spent my entire life caring and taking care of others and in my family's case - even being their keeper... I want to thank all of you for 'tough' love and advise..

SWMN - our conversation last night worked very well - I used a washcloth under the straps as you suggested and was able to adjust it and as soon it was comfortable I was out cold! Still a little too tight on the bridge of my nose, it also still hurts...

It turns out the welt on the back of my head is now infected from being so inflamed and for so long (4 days now), my Dr also thinks the bridge of my nose could be too... Has anyone ever heard of such a thing?? I am on a really strong antibiotic I've never heard of Septra DS 800/160 for the next ten days..

As far as the Mayo Clinic, I leave Sunday again for Jacksonville - Monday morning I will be seeing the Pulmonary Dr and having some kind of tests done.. Trust me - I will definitely be bringing my mask with me!! the one I have now is supposed to be the best one available - or at least available by my insurance?? I will certainly find out..

Swmn - I just can't thank you enough for our pm's last night, you are the reason I was able to sleep.. My Aunt and Uncle are going with me again - I just don't know what I would have done w/o them last time.. They are both so very helpful and so kind to me - I was devastated when I found out I would have return 3 more times before a Dx... they really helped me stay focused on the moment and to take it as it comes, one step at a time. You also in all your pm's and this very thread - honestly gave me the strength to get thru it all and to this very moment help to keep fighting.

Gina you are right also - I need to focus more on taking care of myself and healing relationships too.. I think about you every day and pray that you are healing and just that you OK...

Let's pray tonight will even be better and a little easier for all of us...
Goodnight

[Gina]

DON,thank goodness you got yourself some sleep and help from the doctor...do you think that you could have some kind of allergy to the material in the mask.My Husband had irration as well on his face from the mask and when i mentioned to the nurse she asked if i had been putting any lotion on his face.....and yes i had b/c his skin was very dry...apparently that was a big no no b/c it interacted somehow with the silicone,or whatever it is the face part is made of to seal it and caused irritation.After that i would just wash his face with a little soap and water and the rash all but dissapered.I think also if you have oily skin that might be a factor but i am just guessing thier!Anyway just wanted to tell you that i am thinking of you and am glad that you have familly to go with you to the clinic.We always took some familly members when we went as well and it was very helpfull.....Good luck and please take care of yourself!!!!!luv&prayers

[swmn]

Hey Don!
Thank you for your sweet thank you's - you are such a thoughtful person.

I hope Mayo can make adjustments to your mask so you are as comfortable as possible.

The biggest way you can thank us is just by using that Bipap; making it as comfortable as possible - could you use a little gauze pad at the bridge to eleviate pressure the same way the wash cloth worked? - just an Idea - worth a try....

{{{ HUGS & PRAYERS}}

[Al]

Hey Don. Glad the washcloth idea worked but that also made the straps tighter. Bet you a nickel you never thought to loosen them did you? That would make the nose tighter. Hopefully you'll see an RT soon that knows how to fit the mask properly.
AL.

[kmgy]

I agree, hopefully the rt at mayo will get that mask to fit properly for you. good luck on monday, will be thinking about you.

[swmn]

actually, Don and I did discuss the need to loosen the bands and he did so - but the nose pc has been a problem from the start.... don't understand why this wasn't fitted appropriately in the first place.....

[Gina]

Hey AL did yah send Don a nickel????????hehehe!!!

[Al]

At least now a nickel is a nickel. Send me your address Don and I'll pay up. Costs 60 cents for a stamp though to send a nickel so how bought I owe you one. That way you'll never be broke. LOL.
AL.

[AngelManFL]

Hello to all,

I'm very tired - but will do my best.. I was only supposed to be there one DAY!!! I don't even know how mant tesy they did or the name of most of them, I'll have to look them up and get back to you.. I saw the pulmonary Dr 1st and it went from there - she thought I had some sort of lung cancer!!! it turned out I did not - but my God did she scare us - like I said, only one day.. we got late last night - I was out of meds and my mom was in the hospital. Most of you may know by now, I am her caretaker - she lives in my home, she is not well - her bone marrow is not producing enough red blood cells, kidney disease, congestive heart failure and she is bleeding internally... and they sent her home. As for me - they have no idea - they did find 2 spots in spine that the disk are nearly gone, I leave again early Mon. morning for 2 more appts Mon afternoon and one Tues morn. and hopefully can come back home again to return to work - been doing it over the phone... They did give me a tens unit to take home and it does help some.. I just can't go on anymore tonight - too tired.. Hopefully tomorrow will be stronger and my mom stable. Thank you so much for your support and pm's - they just keep me going. Goodnight my friends.

[kmgy]

thanks for the update don, i was thinking about you. keep us posted.

kmgy

[Gina]

Hey Don, also have been thinking about you please as kmg said keep us posted ! you and your poor mom are in my thoughts and prayers.I so admire your courage and spirit i am praying that what you have will be treatable.You have suffered allready too much and i want so much for your spirit and courage to be a testimony for all that still suffer on this journey and that you will always be thier to encourage all of us.!!!.....Gina

[swmn]

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}}}

[crystalkk]

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....

[AngelManFL]

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

[kmgy]

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

[swmn]

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!!

[Al]

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.

[Gina]

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

[Icanmanz]

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 dx'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

[crystalkk]

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.

[AngelManFL]

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.

[Al]

Hey Don. Any chance you can get someone to buy the business? It's just dragging you down.
AL.

[crystalkk]

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.

[Gina]

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

[swmn]

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}}}

[AngelManFL]

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.

[Icanmanz]

Angelman, hi Dear! How are you?

Irma