What's the deal?

[Marie12]

I am now thinking you are very intelligent

We need to find ways to do the things we would normally do, if we didn't have MS. Or think of things to do, that we wouldn't have thought of, if we didn't have MS.

I know, I'm glad I was at Disney World three tigmes before the MS left me unable to leave my home. But it's something I wanted to do, when I wasn't dealing with this nasty disease.

Now, since I have about a half hour of strength daily, I try to think of half hour things I can do.

It is even more difficult, because I used to have an hour of strength daily, now half hr

[JerryD]

Marie12, I think you and I are seeing the same things. kittysmith, no need to apologize. You have not offended me. I used to do network news field reporting (ABC, NBC, CBS you know the legitimate news networks). I was threatened with bodily harm, many times. There is almost nothing that you can post that will offend me.
To the contrary, your correspondence has been delightful and welcome. This board has been a lifeline to me. Anyway, this disease sucks and NO ONE ( short of the Pope, himself) can dissuade me of this opinion. ( I hope that I have used this expression correctly).

[Nicoly3467]

Hi Jerry,

This disease can be very frustrating, depressing at times, and the acceptance is hard. I am still working on that but have improved. This is a big loss for most of us whether it is physical challenges, cognitive, emotional or a combo, somehow through all the symptoms we have to keep trekking along!

If there is a hobby or something you enjoy and you are physically able to do it, do it! I am trying to follow this same advice now. I need to maintain the things in my life that make me happy that I can still do or even a modification is great.

I used to be a marathon runner years ago but running is not possible anymore. Instead I ride a bike, walk the dog and on bad days with reduced leg strength, I sit on my electric Segway scooter to take the dog out. It is not the same, but I don't want to feel robbed by MS so I have to find joys that make me feel good everyday. Getting back to my jewelry making is the next big step. Oh boy!

Anyway, hope this helps and take it a day at a time. My MS support leader was told in 1986 when she was Dx, to go home and rest cuz there was nothing the doc could do. I cannot even imagine that! She waited 7 years until first inteferons came out. 25 years later-she is doing great physically but surely has her challenges. I am glad we live in this time where we atleast have some choices of meds to help with this disease or even baclofen and provigil!

[JerryD]

Hi Nicole3467,
Thanks for the encouraging words. If only my hands and fingers still worked well enough to play my guitars and electric basses, or if I could still have the stamina to work in the field, I wouldn't feel so 'robbed'. That's the thing that gores me. There are too many of these life altering deficits that have been stolen from me by the MonSter. I will continue to seek advice and counseling to help me adjust. I hope my attitude will improves. Thank you for your suggestions.

[Nicoly3467]

Jerry-I am really sorry that you have a lot of difficulty with your hands. That makes it very tough on a daily basis.

I hope you don't mind me asking, but what were some of your first MS symptoms you experienced before you got diagnosed?

[pennstater]

Jerry,

Most of the permanent damage I have is in my hands and right arm, which is in addition to fatigue and cognitive issues. So I get your frustration. It takes so long to do things, and the quality is so different.

Hang in there. Be patient with yourself. Acceptance does not have to mean giving in to MS. I have found flexibility the key to my mental state. Good luck.

[dyin_myelin]

Jerry,

I don't think it is a sign of weakness or denial that you are impatient for a cure. I think it is a sign of wanting your life back, and wanting to live. I never stop researching, debating, and considering the most aggressive treatment possibilities/opportunities, and wish options like anti-LINGO and HSCT could be fast tracked. The positive attitude cult has its signals crossed a bit when it preaches acceptance. What could be more positive than wanting to be able to enjoy life and all it offers?

[Thinkimjob]

Well, Jerry D, I can only agree. I was assured when I was diagnosed back in 1997 they were confident there would be a "cure" within ten years. I didn't really believe them, but it was a comforting thought.

And life was okay once I got over the initial shock, because I was basically okay. Walk, run, dance, work etc - just a wee tad numb here and there.
The side effects of Betaseron were bad, but not too bad. It was easy enough to put MS in the background.

Now, alas, that's not possible. Every time I move, every time I try to do something, such as type, or read, or clean my teeth, or watch TV, let alone walk, whoops, there it is.

And wheelie-walkers might help you move, but they do nothing for your numb feet, or your dragging leg, or your basic feeling of nausea and mild panic in a crowd. Won't even mention having a shower.

Praise the Lord I gave up smoking years ago, because I don't have enough energy or balance to stagger to go shopping. Time was I'd walk ten kilometres to buy a packet of "durries" as we call them down here.

Even lying down in bed - tingly fingers, numb legs, sheets too heavy, weird feeling of vertigo and so on.

I do try not to think about it, but it is hard not to. Told the doctor; she recommended and prescribed Prozac. I asked why, because I'm not depressed, just realistic.

She said, "Why not feel better?" Well, dull the pain? There are better drugs than that...

There will be a cure of sorts one day, but I'll be long gone.
I don't begrudge the researchers.

When they find the cause and the cure, it will be available, and there will be much celebration, because they'll be able to fix Alzheimer's, and dementia, and motor neurone disease and so on.

[pennstater]

dyin_myelin,

I may be part of the positive attitude cult you are referring to. I haven't given up on finding a cure or treatments to reverse damage. My acceptance just means that right now, I have limitations and have lost part of my prior life to MS. But for me, if I don't find a way to accept that and live with it, my days are going to be much harder, more frustrating, more angry, etc...

I have to accept it to live the best life I can. It doesn't mean I don't feel the loss & am angry at times, but I just can't let that control and dominate me. For other people, they may need that anger to motivate them and to fight, I am just not like that.

I don't think that being positive and acceptance is mutually exclusive with finding a cure.