Howdy : Hello! I hope all is well (so to... - My MSAA Community

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Howdy

BobIah profile image
20 Replies

Hello! I hope all is well (so to speak) with everyone.

I have the wonderful secondary progressive MS. If you have RRMS I would say your fortunate . Take your meds and enjoy yourself. As we know, we don't always known what tomorrow may bring. I sure did not expect SPMS.

Anyway, my question, I've gained weight and lost my core control. If I exercise could I get core control back?

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BobIah profile image
BobIah
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20 Replies
Fancy1959 profile image
Fancy1959

Hello and good morning Boblah, it's Fancy1959. First and foremost I would like to welcome you to this awesome chat room. We promise to provide you a safe place to come and ask questions, like you just did, voice concerns, or simply speak to others who truly understand what you're going through. We are glad you have found us! You are now part of our extended family!

I, too, have progressed to Secondary Progressive MS. Most neurologist tend to think that if you have MS long enough, the odds are you will progress from Relapsing and Remitting MS to Secondary Progressive MS. The Unlucky Souls of the one who start with primary progressive MS and keep getting worse from day one steadily. I am 59 now and I pray that the DMT I am on will kick in shortly and start to improve my disability. I am on ocrevus and there are very promising results coming out of the clinical trials group that have been on the drug from 2 to 4 years.

About your weight gain, join the club! I can no longer be the Active Athlete I was for 53 years of my wonderful life. I am now a basic couch potato. And boy has the weight gone on because I still have to eat. I'm getting ready to start water exercise classes and I've been back on my recumbent bike also so I pray I can start to see some positive results with my weight. As far as your core strength have you ever done physical therapy? If not I would encourage you to do so because they will teach you basic exercises that you can then continue at home to build up not only your core strength but your arm your leg in your grip strength not to mention your balance and walking. Nothing is impossible with increasing your strength at least to some degree you just need to know how to go about it safely. And physical therapy will teach you how to do it right.

I hope this helped. I can't wait to get to know you better because I am certain we can learn much from each other. Until we speak again please take care and remember together we are stronger! Fancy.

BobIah profile image
BobIah in reply to Fancy1959

Fancy,

Thank you for the information.

I did not know there is a drug for us to use. My primary loss has been on the left side. I can no longer walk.

Since my family can not take care of me, and m in a nursing home, at the ripe old age of 53.

I'm holding on to my sanity 🙂

Jazzyinco profile image
Jazzyinco in reply to BobIah

Boblah, a very, very warm welcome to you to the most awesome, friendly Family on the web!💗❤💚💙💛 being in a nursing home you should be able to ask for rehabilitation, Physical Therapy, as I was studying to be an RN BSN, but now in Colorado here, they make us take CNA classes, I was a Rehab Aid for a couple of years, then M.onSter had kick in & i had to stop it all. So, definatley try to ask around, maybe ask charge nurse or your director. Hope this helps, please keep us posted!!🙏💪👍❤💗💙💚💛Many Prayers, Blessings & Love to & For ya!---Jazmine🌹💜Rose

BobIah profile image
BobIah in reply to Jazzyinco

Jazzyinco,

Thank you for the warm welcome.

I was getting therapy then discharged now only restorative.

It's all good, I'll be leaving here for a group home with 2 other people. I'm expecting better assistance with care, food, and. PT.

Jazzyinco profile image
Jazzyinco in reply to BobIah

Oh well that's great news Boblah, good to hear, what a Blessing 😍 Have a great day! & Many more to come your way! 💗❤💚💙💛🙏Prayers For ya!--Jazz🌹💜

BobIah profile image
BobIah in reply to Jazzyinco

Thanks

Blessings to you and you family.😇

dogdaddy profile image
dogdaddy in reply to BobIah

So sorry to hear you are in a nursing home Boblah...that sucks! Don't they offer physical therapy at the nursing home? Can you stand up from a sitting position even though you can' walk? Just doing that repeatedly throughout the day can help with building core strength. So can leg lifts laying on your back in bed. Welcome to our little group :)

BobIah profile image
BobIah in reply to dogdaddy

Hey Dogdaddy.

I can not stand. That really sucks. My left leg can't move. I'm getting restorative therapy. That's laughable! My only real therapy is what I do on my own.

dogdaddy profile image
dogdaddy in reply to BobIah

I'm almost in the same boat as you. I can't walk at all but I can stand up to climb onto the toilet and transfer to bed with help. I was able to walk with a walker up until last sept/nov when I had my 1st relapse after my initial onset of this horrible disease that had me in hospital for 2 months then rehab and then a nursing home. I broke out of the nursing home after 3 days...it was horrible...I was 53 at that time. I'm 59 now! This disease hit me totally out of the blue..no warning signs and took everything away from me overnight! My problem is my right leg.

BobIah profile image
BobIah in reply to dogdaddy

OMG! I need your left side lol.

I'm 53 now. I've been living with this since I was about 24.

At least I "lived" my life before the wheels came off. I did not take my DMD everyday 🤔 So please take your meds you never know what's around the corner.

Sorry dd for going rouge on you. Have a good day!

dogdaddy profile image
dogdaddy in reply to BobIah

I don't take any DMD's because they don't cure MS. I haven't use DMD's for years! and you can't have my left side because I need it to drag my right side around :) Stem cells are the way to go instead of DMD's which is just a way to keep us trapped in this disease even though they know stem cells work much better! Which is why I am currently raising money for stem cell treatments! gofundme.com/deniseneedshelp

BobIah profile image
BobIah in reply to dogdaddy

I didn't know there was stem cell options in US.

Good luck on raising funds.

BTW , how much does it cost?

greaterexp profile image
greaterexp

Welcome!

I would imagine that any careful exercise we do to strengthen and stretch our muscles is a good thing. Our expectations have to change due to aging and the MS, so we can’t expect rippling, firm muscles in 6 weeks. I think our goal is to maintain strength and tone and mobility for as long as possible.

With fatigue issues and all the other problems we have, we tend to enjoy more calories than we can burn, so weight gain can be a problem. When we can’t increase our activity, we have to adjust our food intake a bit.

BobIah profile image
BobIah in reply to greaterexp

Thank you for replying.

My last ripped muscles are nothing but a memory. LOL

Currently at I'm in a nursing home. Husband left PDQ. Younger brother is "Living his life" and mother in her 70's about 100 miles. She's not interested in being a caregiver.

I have given up sugar and the big one for Texans...DP😀

My how things change.

greaterexp profile image
greaterexp in reply to BobIah

You have amazing self control to kick the sugar habit! Good for you!

I’m so sorry that you don’t have supportive family. They can be such a blessing when we face struggles. I do hope you get good care in the nursing home. There are some very good ones, despite the stereotypes.

I used to have much more strength, tossing around 50-pound feed bags, but though I can’t do that anymore, I also don’t need to since we sold the farm. You’ve reminded me that I need to get back to my stretching and strengthening exercises again. Thank you.

BobIah profile image
BobIah in reply to greaterexp

My how times change. Have a good stretch!

Iona60 profile image
Iona60

Hi! Welcome to our family!

Peruzzot profile image
Peruzzot

Welcome to the group. Sorry you don't have a more supportive family. Ask around to see if your nursing home offers any rehabilitation services. They should be able to help you build up your core muscles.

BobIah profile image
BobIah in reply to Peruzzot

They gave me a few weeks of PT the discharged me "not really improving". Now I get a few minutes in the gym to do restore energy.

Have a good day!😄

lbenmaor profile image
lbenmaor

Exercise helps your whole body including your core. It also raises your endomorphines.

Leslie

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