Exercise 🏋️‍♂️

[bandicoot1987]

Hey all!

Anyone have any tips for gentle exercise for my partner to try, he is suffering from aching legs and his balance is getting worse but sitting around isn’t helping his mental health. It’s a struggle for him to find any interest in doing anything at the moment.

We do go on walks daily, only for 40 minutes though as his speech gets affected badly the longer he walks.

We need to get in touch with a doctor really but he has no up coming appointment booked and no contact number for any doctors or his ma nurse apart from his local GP who said they were going to step in and help before Christmas and we’ve never heard a thing.

He hasn’t spoken to anyone about his ms in a year now 😔 I know I’ve said in my past posts I don’t feel like he is getting the treatment he needs. We’ve been waiting for something to be done about speech therapy for 2 years now too.

Anyway, for now I would just like for anyone in a similar situation to give us some tips on some gentle exercise, maybe some you tube videos you have used and can recommend.

Any help greatly received.

I hope you are all keeping well, looking after yourselves and staying safe in these strange times 🌈 xxx

[Iona60]

If he is a member of Silver Sneakers, they have an excellent chair yoga class that you can stream. Hope that he finds some help soon.

[bandicoot1987 in reply to Iona60]

Thank you xx

[twooldcrows]

has he mad you his care person then you could take over making apts. for him and ask to get help for him from the MS members to get him help also...don't let him just sit and let it get worse...good luck ...

[bandicoot1987 in reply to twooldcrows]

We don’t want that as it’s ruined our relationship, it’s hard to be someone’s carer and partner, it’s taken away any sentiment our relationship once had so much so I don’t ever think we’re getting it back xx

[twooldcrows in reply to bandicoot1987]

i am sorry ...i know what you are talking about ..they don't like not being this big strong man that is going to care for you ....hang in there and know he stills cares alot but it hurts that you have to do for him ....just remind him you love him just the same ...find something that the two of you can do together ....love and much happiness for both of you....

[Humbrd]

Maybe call msaa and see if they can refer you to a local MS neurologist. Contact MS organizations and speak with a nurse for tips on obtaining medical care. I have to say if he is doing 40 mins a day of walking that I am very impressed. Some people without a medical condition don't do that much. Best of luck.

[bandicoot1987 in reply to Humbrd]

We can only walk as an option as we’re in lockdown xx

[Midgey_Midge06 in reply to bandicoot1987]

Walking 40 minutes at once may have his body over heating which would make his symptoms worse. Maybe break up the walks into 10 - 15 mins a couple times a day.

Maybe play cards? Or something that will keep his mind going.

Also - ask the GP about depression meds. I wud be lost without my prozac. Something herbal maybe in the meantime. You may wanna google what he can take. Do not do saint johns wort. It interferes with most meds

[rjoneslaw]

As for exercise go to the ms gym they have 2 free exercise program sites Facebook and YouTube they have a paid membership which I do and you can get feed back and there is community you can talk to as well the website

themsgym.com

I have been doing the gym for a year and my dr has seen improvements.

Also for neurologist go the MSAA website they have a list of doctors you can choose from.

Also you can become his caregiver or get power of attorney and you can set up his appointments for him and talk to Dr on his behalf

The neurologist would send him to pt for speech physical therapy and occupational therapy as well.

The dr you really need to depend on with MS is the neurologist

[bandicoot1987 in reply to rjoneslaw]

He already has a neurologist here but only seen him twice in 6 years. Hasn’t seen his ms nurse in over a year, he has a new one, don’t even know her name that’s how bad it is!! Xx

[rjoneslaw in reply to bandicoot1987]

U need to reach out to them. They may think you moved on since they haven’t heard for you. Just call the office your file would have everyone’s name. U may have to start over since it’s been so long since you’ve seen anyone

[Sandydemop in reply to bandicoot1987]

I’m interested in knowing why he is avoiding treatment.

[bandicoot1987 in reply to Sandydemop]

We’re not avoiding treatment, he was diagnosed 6 years ago and has been on medication, had 2 mri scans and has always had follow up appointments most of which get cancelled on a regular basis.

When we last saw the neuro a year ago we were told an appointment would be sent through and we’ve still not heard anything.

We have been in touch with the GP who said they would send an email and sort it and we are still waiting xx

[Sandydemop in reply to bandicoot1987]

Hmmm. How are the follow ups getting cancelled? If the doctor is not following up or constantly cancelling that’s a problem either with him/her or their office. Can you switch docs or let the doctor know what’s going on?

[goatgal in reply to bandicoot1987]

Perhaps a new approach would be helpful? Start badgering, bandicoot! Like many of us here, you may need to learn, as I have, that in order to be heard, sometimes we have be much more assertive and persistent than we are in ordinary circumstances. If constant reminders don't result in changes and follow through, find doctors who will help.

[bandicoot1987 in reply to goatgal]

Thank you xx

[kdali in reply to bandicoot1987]

His medications are being refilled without follow up neuro exams and annual MRI’s with a neuro exam?

[bandicoot1987 in reply to kdali]

Basically yes. He’s had 2 scans in 6 years x

[Peruzzot]

Is there a pool nearby? He could do water aerobics classes or just swim laps.

[bandicoot1987 in reply to Peruzzot]

We’re in lockdown so we’re not allowed to go anywhere xx

[goatgal]

Call around. Through large in person classes may be cancelled, for example, I know our local Y pool is still open and providing opportunities for lap swimming, and lessons for people who bring a parent or partner. The instructor stands in the water nearby and gives instruction to the parent/partner.

[goatgal]

And physical therapists may also be able to help. Their facilities are also still available.

[Elizt3]

msdreamcenter.org

They offer their programs nationally, obviously online. They have a chair Zumba class and other programs throughout the week

[Jer29-11]

Yoga is a great exercise! I do videos on YouTube. My favorite is Sarah Beth’s yoga. She has all levels and also offers an online paid membership. But, I must say, walking is a great exercise too! My nuero recommended walking for an exercise.

[Jesmcd2 CommunityAmbassador]

bandicoot1987 you should talk to jimeka as she is from across the pond, and might be able to help you a bit more with the Dr things. As far as doing exercises, you can make anything an exercise... Doing dishes, practice standing on one foot.. sweeping.. bending over at the waist... Lift cans of soup as weights... Just some ideas my friend!🤗💕🌠

[Midgey_Midge06 in reply to Jesmcd2]

Also great advice

[bandicoot1987 in reply to Jesmcd2]

Thank you x

[Humbrd]

Besides msaa you might want to call your local Health Department and ask to make an appointment with a nurse or case manager to discuss everything and see if they can direct you in the right way to find care for him. They could be a support system.

[Midgey_Midge06 in reply to Humbrd]

Great advice

[Brindisi1]

I dont know circumstances, but 2 visits in 6 yrs & speech deteriorating. If on meds, at least yearly followup pretty std.

I would encourage you to be proactive and get another neuro asap.

I know difficult. If you are in houston, always waiting period, but they should know what is going on so they can work him in.

Maybe some depression & 'lockdown" doesnt help

I follow exercises on computer. Can he do light weights also

Prayers for things moving forward

[IFwczs]

I swear by MS Workouts on the Internet. Remember - he needs at least 1.5 hours a week of exercise. They have seated and wheelchair exercises, as well as standing. You can pick your own exercises and their level of difficulty. I think it's $30 a month after the free 30-day trial. MSGym is the same price, but didn't work for me.

I too didn't go to back to my neurologist when I was on Tecfidera for a couple of years. MS had progressed during that time. I could no longer walk without assistance. And when I finally went back, there was Ocrevus, and I was put on it. Now I wish I had not taken such a long break.

If you are in England, I understand you cannot easily switch doctors like here. But make your own appointments, don't wait for them to schedule you.

[positiveness]

I don’t know if MSAA still does it, but they gave me a free stationary bike several years ago that I still use now.