Monday at 10am, my care management and nurse will be here. What I've been fighting against for so long, will arrive, Assisted living. I know I need the help, it's still a bitter sweet sort of situation. More bitter than sweet for me. I know I will adapt, in a way I feel so defeated. I've given it all I had but I've finally been brought to my knees and said uncle, uncle ... uncle. MS is kicking my tail.
The day is at hand: Monday at 10am, my... - My MSAA Community
The day is at hand
Written by
Allen5280
To view profiles and participate in discussions please or .
71 Replies
•
Oh, I am so sorry to hear. I am just starting this but live alone and not sure what the future will be. My prayers are with you.
Allen5280 in reply to
Thank you Hidden for you prayers and I will be for you as well.
I don't know how to "follow" you on this site.....but would like to. Please chat and vent anytime.
Allen5280 in reply to
You found it! 😁
Wishing you the best. I know that this isn’t what you really wanted but it’s probably for the best. I know it’s easy for me and others to say that but I really hope and wish you the best. Keep us posted.
Roy
Hang in there Allen. We all want to be as independent as possible, but sometimes we just have to give in. I'm sure all will work out for the best. Stay strong and keep us posted.
You're getting help and that is good.
With this, I hope you are able to devote time to interests that make you happy or find new things.
Thank you falalalala
You're welcome.
I forgot you played harmonica. I have one myself but don't have the skill.
I am envious.
It is really good for breathing exercise. One company called Seydel (the oldest harmonica manufacturer, now my favorite) makes a pulmonocia for pulmonary therapy and treatment of copd. It's for the non musician and its tones are designed for a soothing sound on the out blow and the draw in. It's not only for a hobby but also for my health. Everytime my O2 levels are checked I'm at either 97 or 98% only once was I at 96%
That's interesting. I'm glad it has helped.Now for a random question...
On shows like Petticoat Junction, was there a bass harmonica used in some of the background music?
Yes, this is the BS I think about. lol
There are alot of different harmonicas. I have a set of 12 major keys Dd,Ab,Eb,Bb,F,C,G,D,A,E,B(H) and F#, of the Hohner Special 20's. Then there are low keys (most likely the one you are referring to) there are minor keys, country tuning, orchestra, symphony and soloist tuning as well. Then there are the chromatic harmonicas where as there is a slide button to pick up the full scales of notes. There are the standard 10 hole diatonic harmonicas that I prefer. There are 12 hole and larger which I prefer "cupping" with my hands so they are to large for me to use that technique. The larger styles such as a tremelo Harp which I have not had much luck with. My plan is to change out (over time) to the Seydel Blues session Steel harmonicas. I got one in the key of C and absolutely love it! Oh and it's got a orange Comb (the center piece of the harmonica) I felt that was quite ironic myself!
I wish you could post a video of you playing!
That is one thing I've been working on trying to figure out. I am musically dyslexic. I've been musically trained since child hood but no matter how hard I try I am unable to read music at much more than the equivalent of a snails pace. I am also dyslexic in the written word, however I had teaching to help overcome most of that. It still messed me up at times and takes me forever with writing, especially when I get hit with cog fog. Seems to trigger those old issues. I have to read things several times to make sure I didnt misunderstand things. Often times my brain sees a word and jumbles it up and changes it into something else close. I just have to remember that I have to double check. So when it comes down to it, I play by ear. I also play alot of harmony so when I play a song without accompaniment, it does not sound right. I'm trying to rework a few songs that I've done to be just harmonica but I'm not very happy with them. I have to find at least one other musician to play with so I can avoid breaking the copyright infringement.
Dude, I am so sorry to read this. The whole “MS doesn’t have me” is crap. Maybe not today but it will some day.
I agree it's more like MS hasn't got me.... yet. I hope and pray for others to not have to find the yet part.
Allen, you have been on my mind all day today, now I know why. I hope and pray that this move will be good for you and that you will get the best possible care. Please continue to play your harmonica, and make lots of new friends and I hope that you find someone you can have a good laugh with. Take care my friend, in my prayers as always, Blessings Jimeka 🤗 🙏
Thankvypu jimeka , in a good not I have the option to have it at home. We are going to take a trial period to see if I can keep up enough with help. In certainly going to try for I dont know that living in a community would not cause me issues with my anxiety disorder. I tried visiting a complex where I could have lived a few years back and I could not then so will just have to see. Some situations have changed such as the legality of my medications so it may be different but we are doing the "at home" trial first.
I pray that this transition will go well, that you adapt quickly, and that the needed help will give you peace and much needed rest. God is with you in this change. I hope that by having help with physical things, you can use your energy for your music and any other outlet. I think you will be a fabulous blessing to those around you there in your new place.
Thank you greaterexp , we are trying Assisted living at home first. Anxiety disorder keeps me pretty isolated. It probably won't be long before I put a for sale sign on my teavelteailer and am going to be looking into new places closer to the Oklahoma city metro so I can be closer to my Mother. For now the assistance will be right here in my place as long as it is manageable. Not long ago the village people put in a ramp for me.... I've been waiting so long to say that. The park where I live is called a Mobil village. The park manager put a ramp in for me. They are kind people.
Thanks for clarifying that for me. I'm so happy to hear you are surrounded by some great people there who obviously care about you.
Wow, look at you venting! I’m proud of you 🥰 👏🙌🏻
I’m sorry that this is happening to you. It sucks, but I’m also so relieved that you will have some help soon. Eventually you may even feel blessed for it, but now is more of a time to feel all the bad feelings and get it done. It sucks!
Let us know how moving in goes and about the people you meet.
Thank you kdali , I will be starting with assisted living at home and see how it goes. Hopefully that will be enough
Oh, I see, that’s probably what I would prefer. I hope so! Sometimes a little help goes a long way.
wishing you the best hang in there Allen5280
Allen, my hope for you is that you will look at this new phase in your life as an opportunity to explore and share your talents, learn some new things, become a blessing to others and hopefully meet some new friends to cherish along the way. Maybe you will even find someone to swap flying stories with.
You have not been defeated! You recognized that your needs have changed and took action to me those needs.🤗
Sorry to hear Allen 😣 I have been thinking about moving back to my home town in Pocatello. One of my friends asked me if something happened and I went to a rest home who would come see me where I am? Great question, nobody. In Pocatello I have a brother and probably over 20 close friends. Really gave me something to think about 🤔🤷. Hope things work out for you 👍🐾🐾😉🙏😊 Ken
When the time comes, I'm looking at places in the metro to be closer to family. I'm not so fond of city life but the public transportation and family will be closer. Most of the friends I once had have left me to my own devices so that's s bog part of my need for assistance. I will have to make new friends either way and with my anxiety disorder that wont be happening any time soon. I'll most likely need a caregiver to help me to the city ms support group so that will be a good place to start once I get settled. It will be awhile before that.
God’s got ya brother. Seek His will for you and you alone. No matter what our situation...we have the ability to influence others in a way that leads to love, joy & peace beyond our realm of comprehension.
Sending you strength and hoping the transition is positive 🙏
Hey Allen! Good things come when we least expect them, maybe this change will be like that. We have chatted enough over the years for me to know how very much you love your privacy. Remember they are there to help you, so do not go scrubbing your house for hours before they arrive like I used to do when I had help with all my kids years ago. She was the housekeeper and I was doing her job! I love you so dearly. Let me know how it goes! Love, Kelly xxx
I have to do some stuff cause they only do light housework so I've been trying to straighten up a bit before. It will be nice to have clean laundry for certain. No matter how hard I try, I cant be happy about this. I'm alone is why I need assistance. People have to be paid to care about me. I'm 46 going into assisted living before my parent's do? I know I dont have a choice, I just hope it goes quickly.
What are those old lyrics, know when to hold 'em, when to fold 'em, and when to walk away. You have a responsibility to your self, to make choices that are the best for you. This will also reassure those of us who care for you,who worry when you are silent or write of falling, and who embrace your presence here. For someone as independent as you are, the transition will be difficult but at the same time, I am certain that you will be able to maintain a great deal of agency: to do as much as you wish/are able for yourself, to express your likes/dislikes clearly, to respect others and expect/request it for yourself.
As I see it, the main differences between assisted living and a cruise ship is the food, the less expansive vistas, as well as the lessened risk of picking up a virus from other passengers! So, Bon Voyage!
I wouldnt be caught dead aboard a cruise ship.... so what does that say about my transition? LOL😂😋😂🤣😂 sorry I couldnt resist. Seriously though, I have never, ever, ever had the desire to step aboard a cruise ship. They go only where they want to go, not necessarily where I want to. I will be starting with independent living at home do that is much better for me.
I hope that the Calvary arrives on Monday morning and your life becomes so much better that you wonder why you fought this for so long!!! My thoughts and prayers are with you! Please let us know how you make out!
so sorry for you but happy that you will have the assistance you need when you need it!1 Mary
Allen5280 PERHAPS, as you adjust to this new help, you can focus your energy on fighting MS in other ways, and also on your harmonica playing.
This is a new chapter for you and one I know you’ve resisted. It’s hard to admit we need help and allow it but, as others have said here, it will free up your time for more enjoyable pursuits. Wishing you well in this transition. We are all rooting for you.
Allen, MS doesn't have us, we just have to do what's more convenient for us. Hopefully you will meet some interesting people. Good luck, and keep us posted!
If it were not for MS, I would still be flying, if it were not for MS, I wouldn't be in this place, this space, this . . . Disaster, this nightmare, this pain.... it has broken my body, mind and spirit, I am unable to say st this juncture that MS does not have me, it's got me by the .....
Allen, there is truly worse stuff to have. I am sure my dad who died at 39 of pancreatic cancer would have preferred MS. Get some help, you are in the right place.
Sorry to hear about your Dad.
He left a pregnant wife (my parents were divorced), and he really loved me. Yes, I am sure he would have preferred MS. It's not lethal. Think about it! Yes, we could have been climbing Mount Everest, but we could have been dead. Please don't lose sight of that.
That's not entirely true. MS isn't normally lethal, in ny case it sure as hell is trying to kill me. MS has taken everything from me and I've been fighting taking my own life day in and day out praying for it to end. I was trying to be polite but you have no idea the suffering I endure or have any right to compare me to someone else's circumstance for you do NOT know mine.
I sure hope you find it to be better than you think. I know a couple who just moved into assisted living and one of the positives I really noticed is the number of friends they've made already. I hope you find your niche there as well. Prayers for an easy transition.
carolek572CommunityAmbassador
I do get down every once and a while, but I do get back up again because I am certain that there is help (and sunnier days), right around the corner. Approach this new chapter in your life as a welcomed change. I will keep you in my prayers, always Allen5280 
Unfortunately I am no longer able to see the Sun. I've slipped back into a rabbit hole and the closer the tines comes the more apprehensive I become. In trying to hold the positive attitude but to be honest, in faking it. Reminds me of some antidepressants commercial with the white smiles on a stick.
so sorry you feel that way it is for your better good ..you will find a lot of enjoyment from it if you get some great people to work with ...they can make your life so much happier ...just take it slow and learn to find new solutions to some of the things you have been having problems with or they can help teach you for better ways of doing things ...do enjoy this ....
I know it is necessary, doesn't mean I have to be happy about it. I've been fighting for so long to maintain and it's the failure that stings
When I placed my parents in assisted living, my father greatly enjoyed it, not having to worry about the little stuff, or coming out of his Parkinson's brain fog. He was happy to meet new people, and participating in new activities. Please do not look down on assisted living, for many it is a joy! You also have my complete attention and prayers!
I'm 46 and not have to go ahead of my parents. I'm not talking down about assisted living um venting because I have to do it now! I'm upset because I'm LOOSING my battle with MS. I'm upset because it has taken every bit of joy from me and this is taking my HOPE as well. My hope for any kind of better life any hope of change and it's so downhill so fast I want it to END.
🙏🤗♥️🌹
Thank you RoseySawyer
Allen5280 I feel your pain in your words I am praying for you I was diagnosed in March of 94 I turned 41 April of 94, I have been knocked flat of my back & came back fighting more than once. God is in charge of all things whether you believe it or not & I am living proof of that.
Yes you have been handed a package you didn't ask for same as I was & many others too. Grab your big boy pants get up & ask God for his help you won't be sorry I promise. Mary
Not what you're looking for?
You may also like...
Hands
go away. My hands have been killing me cuz i have tendonitis so the cold has been making it worse....
Strange feeling hands
get that right feeling. I know they aren’t dry so I’m concerned. I’ve been under a good amount of...
PPMS - hand stiffness
After many visits to neuromusculars, the CIDP has been ruled out. We now believe I am battling a...
Anyone else have an issue with cold hands?
Stiffness, rigidity, no flexibility and pain in fingers/hands
Small bumps on fingers, hands, lower arms
My weird right hand
