Feeling Low

[Chloeandcarolyn]

Hi, I just joined. This is part of my trying to get a grip and pull myself up out of the doldrums. You see, I have Parkinson's AND Multiple Sclerosis. Lucky me. I'm so low right now. I know I over-did it last week and I'm trying to fight off a MS relapse by resting but it doesn't seem to be working. I just made an appointment with Dr. Laurie Mischley, a naturopath. But she is booked two months out. I just cried and cried after getting off the phone. Glad to have finally taken the long-intend step, but also, bummed that I could become disabled from one or both of these diseases. I just happen to have a regular appointment with my MS doctor this week, so that's good. I was diagnosed with MS 13 years ago and I appear normal, which makes these relapse times hard. I don't know if people think I'm faking it. I'm really scared of the PD progression. I was diagnosed 3 years ago. I'm buying Mischley's book on Amazon as part of my 'getting a grip.' It's just so hard to keep pushing myself. Today my tremor seems inside the core of my body, not just hands. I don't know that any of you can do anything for me but it does feel better to share. And to join this group. I know exercise seems to be the key to slowing this stuff down, but can't seem to get myself to be a regular exerciser. Intellectually, why wouldn't I just jump (!) at exercising. Thanks for listening!

[park_bear]

High dose B1 helps Parkinson's and according to this study biotin helps with MS: msard-journal.com/article/S...

" Biotin activates enzymes involved in energy production and myelin synthesis.

•91.3% of SPMS or PPMS patients improved clinically with high doses of biotin.

•Improvement concerned chronic optic neuropathy, homonymous hemianopia or myelopathy.

•In all cases improvement was delayed from 2 to 8 months following treatment׳s onset."

Likewise people taking it here report improvement: bulksupplements.com/pure-bi...

[MBAnderson]

Yes, exercises is probably better than any and all other combination of therapies combined and yes, most of us have motivation problems doing it, so you're not alone on that score. Actually, you're not alone on any of the issues you mentioned. You'll find many people on this forum have Parkinson's as well as MS, cancer, and other chronic illnesses. My advice; start reading. Enter keywords in the search engine on this website to focus your research. You will learn more from this forum then you will from a traditional doctor or neurologist since they are not educated or trained in alternative or complementary therapies. Many of us believe you really can slow or stabilize your progression if you work aggressively at it. Did you ask Dr. Mischley if she can work with you via video-conference sooner than 2 months? She does most of her consultations via video-conference anyway. An often used cliché around here is, 'it's not a death sentence - it's a wake-up call.'

[Chloeandcarolyn in reply to MBAnderson]

Thank you for this. I live in Seattle so I can see her in person. Her aid said that was the soonest for video too. I will take your advice and keep reading. My friends have been very helpful since I wrote. It is a turning point for me, though. thanks.

[parkie13]

Welcome, I have two diseases too, one is insulin dependent diabetes 2 and of course Parkinson's. Mary

[Celtis in reply to parkie13]

Diabetes 2 is often improved by a ketogenic diet. I know several people who are no longer diabetic after a few months on the diet.

[parkie13 in reply to Celtis]

Thank you for replying. I did try it for a while with no results in my diabetes. I could use a very small amount of insulin but it never went away. I wish I could say that I did notice positive results on Parkinson's, but again I did not

[M-o-ggy]

Hi there. At the moment mine are Parkinson’s (stage3), Frontal lobe epilepsy, MGSU ( bone cancer) , Forminal Narrowing of the Spinal coloumn, Reflux , , Allergy to cows milk and gluten and a dangerously low level of Vit D. Now the Vit D prob has been discovered and I have a supplement my life long bone/ joint pain has greatly reduced and my balance has greatly improved. The exercise helps but it is not easy.

The journey since diagnosis has been immense but life can still be good. The end will be difficult but then the end usually is.

This forum is brilliant , so knowledgeable,but you might feel overwhelmed to start with. I know I did.

Through the forum information I take black cumin oil, a very good multi vitamin, curcumin, magnesium , Lions mane mushroom powder and through other inf Hot cupping with a Chinese practitioner.

Interestingly my PD seems to run on somewhere just overv a three week cycle which I truthfully don’t understand but I keep recording good and bad days and some day the light bulb will light up.

My specialist prescribes Sinimet but regards the forum as an unreliable source of information and refuses to test for B vitamins.

I will start Vit B1 soon.

Keep investigating.

[hanifab23]

please tell me if Dr L M does phone consultation

[Chloeandcarolyn in reply to hanifab23]

I believe so. The scheduler said most of her consultants are not in person.

[rhyspeace12]

The leader of our Parkinson's support group has Parkinson's, and now is in remission from Leukemia.She is an amazing person who never stops fighting what she was dealt and is always smiling. I doubt I could ever be that cheery. It's my husband who has Parkinson's and he is very grumpy about it.

[Chloeandcarolyn in reply to rhyspeace12]

She sounds courageous.

[Juliegrace]

You'll love Laurie Mischley, she's worth waiting for. If B1 is not contraindicated with any of your MS meds it is a good place to start. It's helped me with energy and anxiety.

[Bridielena in reply to Juliegrace]

I’m on B Complex and definitely feel better. Also on weekly injection of Exenatide. All this started together about 4/5 months ago. Started on Extended Release Madopar last night and have had the best sleep in years. Almost feel ‘ normal’ as I write. Daily on Madopar and my ‘on’ time has increased from 2/3 hours to 5/6 hours. Can still have rotten days but I put that down to stress or wrong diet .....can forget the Protein connection.

Sending good Karma

HGE

[Chloeandcarolyn in reply to Bridielena]

Thank you. I'm taking B and D. I hit a streak for a few months late last year through January where I felt normal for the first time in so many, many years. Maybe I overdid it because I felt so good. I guess I thought I would stay that way.

[Chloeandcarolyn in reply to Juliegrace]

I'm taking B and D but I think it's B12. I'll check out B1. Glad to hear youor opinion of Mischley.

[Juliegrace in reply to Chloeandcarolyn]

I live in WA and saw her in person for a couple of years early in my diagnosis. Her energy is amazing. I see someone closer to home now.

[PDConscience]

C&C, Consider the following for your MS:

"Doctors are hailing a new stem cell treatment for the degenerative disease multiple sclerosis, after trials showed it to reboot patients’ immune systems, halting the disease.

"The treatment, called haematopoietic stem cell transplantation (HSCT), was trialled in a group of 100 patients with relapsing remitting multiple sclerosis – the most common form of the disease.

"In the trial, 110 patients who had two periods of relapse in the past year were registered at hospitals in Sheffield and Chicago, as well as Sao Paulo in Brazil and Uppsala in Sweden.

"Professor Basil Sharrack, who was also part of the Sheffield team, said: “Almost all patients receiving HSCT showed no signs of their disease being active a year on from having the treatment."

Source: independent.co.uk/news/heal...

[Chloeandcarolyn in reply to PDConscience]

That sounds amazing. I'll check it out. Thanks

[JohnPepper]

I met Dr Mischley last August in Seattle, when her little dog sniffed my Pd. May I suggest that you look at my profile and contact me via my Website - reverseparkinsons.net if you are really serious about wanting to reverse your symptoms.

[Chloeandcarolyn in reply to JohnPepper]

I'll take a look at your website. Thanks.

[CplParkinson]

I'm sorry you feel that way, it can be tough. See if you can find some support groups. I go to the YMCA each day and work out. There's a great older lady with MS, and I think those around help. I see how strong she is with it and it helps me with my feeling down at times. We usually talk a few minutes and compliment each other. A great gym or local YMCA might be good.

[Chloeandcarolyn in reply to CplParkinson]

Good suggestion. thanks.

[Allyn]

Two things. Valerian root is very beneficial to me for "internal" tremors. I use a liquid form by Nature's Answer that I purchase from Vitacost. And I use a stationary little set of pedals "Exercycle" while I sit at my computer - seems to help. Very inexpensive on Amazon (under $100). It is electric and rotates the pedals - you just hang on!

[Chloeandcarolyn in reply to Allyn]

Thanks. I'll check out both.

[Ann8Cr]

I was diagnosed with PD just over a year ago. I was a lifelong “human slug” who also has chronic depression.

I joined a Rock Steady Boxing Group at the local YMCA. It provides exercises specifically for those with Parkinson’s. We do non-contact boxing and crossfor 90 minutes three times

[Chloeandcarolyn in reply to Ann8Cr]

Thanks.

[Celtis]

There are many stories of people with Ms being helped by LDN - Low dose Naltrexone. If you Google LDN and LDN Science you can read about it. Some people report a nearly total turnaround. What it does or doesn't do for pd I can't say.

[Ann8Cr]

Oops! Need to complete last post! To find a class, go to rocksteadyboxing.org

[ddmagee1]

Thanks for sharing your story and communicating how you feel. I find this forum to be very helpful to me, when I am in need of a little bit of understanding and advice from people that have to deal with medical problems, like mine.Unfortunately, a symptom of PD I'd feeling down at times. I have that problem more times than I'd like to admit. I, too, have several neurological issues that have been diagnosed, and are, at times, problematic for me. I have been diagnosed with Cerebellar Ataxia, Parkinson's Disease, Seizure disorder, and Migraines. For 4 years I lived with a diagnosis of suspected MS. Finally, that was changed to Cerebellar Ataxia, after MRI's and vascular intervention procedures proved that it was not MS. The road to diagnosis, for me, was not easy, and took a number of years, in terms of the PD and Ataxia diagnosis. Therefore, there have been lots of ups and downs. Because of balance issues, and orthostatic hypotension, there are some exercises that are recommended by people on this forum, for those with PD, that just wouldn't work for me, as an example. Exercise and range of motion is important, so I modify some exercises to help myself. Exercising is good medicine when one is feeling down. Another problem that I've had, is that very few people could care less what my problems are, because they have their own problems, and don't want to hear my complaints or issues. Some people don't like to be around others, who are perceived as being ill, so sometimes, even within my own family, I am labeled "off limits". People that used to call and visit no longer do so. Many people feel uncomfortable when anything is brought up about a person having a "serious" or a " dreaded" Disease. So, most of the time, I try to act as normal like as I can and just don't complain. If you are able to get around reasonably well and are having a decent day, be thankful for that, is my policy. Relapsing is very difficult to deal with, I know. At this stage, I have more bad days than good days. Wishing you the best!

[Chloeandcarolyn in reply to ddmagee1]

Thank you for this note. I'm sorry doctors took so long with your diagnosis. I know what you mean about not wanting to be around people who are sick. My mom doesn't want me around people with MS who have visible impairment. I think she is afraid I'll 'let myself go' and become visibly impaired. Instead I like to talk to people with my diseases. We have a lot in common. No one but someone with MS can know what the fatigue feels like. I don't like to talk about it to others either. Boring. I'm sorry about the progression. That's what scares me most.

[M1tz1 in reply to ddmagee1]

Sad for you ddmagee1. You're very brave and doing wonderfully well in the circumstances.

[Jmk54]

I think everyone can relate. You've recognized it's a low point. Anyone can have a bad day. Rest today .....tomorrow is a new day. Stay strong!

[Chloeandcarolyn in reply to Jmk54]

You're right. Thanks. Better already.