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[Binger52]

I was diagnosed with MSAc about a year ago still finding it hard to come to terms with it. Be very interested to hear what other people’s experiences are

[binnyrox]

Hello Binger52

I am a 65 year old male , diagnosed similarly with MSA-C last year. We probably have similar symptoms but I would encourage you to press on - trying to not let the situation deteriorate as rapidly

I have managed to do and hopefully some of these tips may be useful to you.

1. Get BP sorted out. I find my standing hypotention throws my life in disarray. So with the Florinef/Potassium and Midorine, I kept vigilant records so that I have figured out the ideal dose . In that way, with normal standing BP, I can be active without the giddiness and loss of balance. That truly makes a world of difference daily

2. Brain Fog. I take Mucuna Puriens - which is the natural substitute from the dopamine that your doctor may have prescribed. I have taken it for almost a year now and it truly helps. Without it, I am just 'all over the place"

3. Activities. I have been advised to do 'exercise snacks' and its works well for me. I now focus on the following every day for just a few minutes for each and rest an hour before the next few minutes of the next. I'd be honest with you that I was a complete crumple when I first started out and it took a while to do it - build it up very slowly. I refused to be discouraged

a. Walking ( with walking poles), or stationary bike or stairs ( assisted)

b. Strength - Sit to Stand exercise ( very important that) , some dumbells for biceps and triceps and calves raises

This is basic for me to maintain mobility and the arms are important as I need to use arms strength to get up from bed, chairs etc

c. Speech - I have been taught swallowing and voice exercises to prevent choking and make myself heard

d. Balance - the single most important for me is the clock exercise to prevent falls. I do others but started with this

4. Verdiperstat . Apparently this drug is in phase 3 trials for MSA (first ever) and so I keep myself as good as I can while awaiting for the results. Failing which, I didn't do any harm with activities that surely am impeding the deterioration of MSA

Before I embarked on the above, I could barely speak above a whisper, was falling several times a day ( stitiches and bruises), choked on my food.

I just came back from a 10 minute walk in the sun, could drink water, after the break I will do my strength routine. I am much slower from a few months back but I can at least do the activities. It took me many months to get to this stage.

It takes resolve, perseverance and support from my wife helps.

Hope this is useful - take good care

[Oliverwindsor in reply to binnyrox]

Hi, I found the information you chatted about most interesting, like most on this site the problems are similar. Can you give me any more info on the Mucuna Purines please. Seems to be a choice, clearly the one you use works for you.Thanks for your help.

[binnyrox in reply to Oliverwindsor]

HiI have posted a lengthy reply to Binger52 which should also hopefully answer your question. Please let me know if you have any problem locating it

[Binger52 in reply to binnyrox]

Thank you very much indeed for all your very informative information. I will definitely look into the Mucuna Puriens and try the exercise snacks that you talk about. Regards Binger52

[Binger52 in reply to binnyrox]

Just looking at the Mucuna Purien and there seems a lot out there. Which one do you take? Many thanks

[Helenhooter in reply to binnyrox]

Hiya, I am still in the process of being diagnosed but have become progressively worse in the last few months so I will make a note of your tips and see if the neurologist will help with some prescriptions. Thank you so much ☺️💪

[binnyrox in reply to Helenhooter]

Hello

I became absolutely convinced that exercise therapy helps when I was first diagnosed and had almost lost my voice. After a few weeks following exercise from the speech therapist - (which I did daily) I regained my voice. Following the logic that voice muscles can improve - I took it upon myself that leg, arms, etc muscles could as well.

I worked on my gait, strength etc and it surely did improve

However, the disease does progress but what I am doing is to slow it and keep a better quality of life. As with neuro diseases, there will be good and bad days, but I keep going even on the rough ones albeit easier a little on myself . Movement is very important; in fact, its been clinically studied that exercise is medicine.

But if you do have postural hypotention - you may want to consider getting that looked. I dont have any kidney problems so I also take a big glass of salt water in the morning with my BP meds. Otherwise its quite impossible to attempt any form of exercise/ movement safely

Good luck and all my best

[Helenhooter in reply to binnyrox]

Thanks for replying. I have been an exercise instructor for nearly 40 years and like you I am convinced that exercise helps. I take ages to change positions, probably longer than completing the exercise itself but I have all day and I enjoy the music. I use light weights, an exercise ball and bands as well as my spin bike which has been a blessing. It almost makes me feel normal! Tomorrow I'm trying swimming. I used to swim regularly before covid so it'll be interesting to see how I get on. Yesterday I went to the gym and have lost a bit of strength but not too bad😊. Last night I was asleep by 9pm! I know when I first felt unwell a lot of my friends and family wondered if I was doing too much. I tried having spells of being lazy and it definitely made me worse 🤣. Use it or lose it, I reckon but I have to take my time and stay safe which means I've modified a lot of exercises.Keep in touch

Helen

😊

[mandg in reply to binnyrox]

Hi binnyrox, you seem to have had a lot of help from your GP re medication, my husband has not been offered anything at all, and the speech and clock exercise you mention, never heard of that either. Interested to hear about that.

[binnyrox in reply to mandg]

Hello mandg

Balance

The National Ataxia Foundation has 11 decent exercises to help with balance

ataxia.org/11-exercises-for...

The clock exercise I mentioned can be found here

m.facebook.com/thomasphysic...

Swallowing

The Swallowing Disorder Foundation has a set of good instructions with videos

swallowingdisorderfoundatio...

Overall treatment approach, I found the following useful

mayoclinicproceedings.org/a...

Medication

The neurologist has given me 2 kinds of medication to help increase my BP

One is Midodrine that works by constricting (narrowing) the blood vessels and increasing blood pressure.

The other is Florinef - (Fludrocortisone) which is an off label use to raise blood pressure in people with postural hypotension. It’s works by raising blood pressure by increasing sodium (salt) levels and affecting blood volume.

It’s dispensed with Potassium

Hope this helps

[binnyrox]

Whilst I take Mucuna pruriens, I do not consider myself an expert but I'd be glad to share my experience.Mucuna has L-dopa in it, which is what doctors give to some MSA patients. However, when you get L-dopa as a prescription (eg Rx Sinemet) a chemical called carbidopa has been added to it. When you take Mucuna there is no carbidopa in it.

It has been reported with the prescription drug, the effects can be initially be helpful only to wane later in effectiveness as the disease progresses. However, I have been on the non prescription Mucuna for a year and it still helps and hopefully continues to do so. I also have not had any side effects

Another thing to be concerned about is that not all brands of supplements have inside the bottle what is advertised on the label. So what I am mentioning is based on my experience with these 2 particular brands of Mucuna — Barlowe's Herbal Elixirs 40% L-Dopa Mucuna Pruriens (WHITE) Extract. I also use Herbal Island - it's organic, has 20% L-dopa and also pure mucuna in tablet form. So depending on the dosage, I will use a combination to get the L-dopa I wish

The amount needed varies. For instance I take 2 tablets of Barlowes 40% in the morning and 1 tablet of Barlowes and I tablet of Herbal Island's 20% in the afternoon. I understand some people may need may need to take more or less.

I started on low dosage and worked up to what seems to help my symptoms

Also, it should be taken on an empty stomach as it competes with protein for absorption. Unfortunately, it can cause nausea when taken on an empty stomach . So I take it with a bit fruit or a small biscuit

Hope this helps

[Binger52 in reply to binnyrox]

Very helpful thanks very much