Saying "Hi"

[lauras5469]

Hi all, my name is Laura and my boyfriend was diagnosed yesterday. He is 42 and not terribly computer savvy - which is probably good for him because I've spent the last 48 hours researching worst case scenarios, treatment options and disease prognosis. His primary symptom now is loss of movement/weakness on his right side and slowness. Reading posts have really helped to see that I/we are not alone and this isn't the 'end of days' like I felt yesterday. So I just wanted to introduce myself so I could feel a little more like part of the community and not so much an outsider looking in. Thanks in advance for any advice or info you can give.

[Hidden]

4g thiamine HCL day, divided two doses, am and pm

[faridaro]

Laura, your boyfriend is very fortunate to have you and all of us here are very fortunate to live in such time and age that we can share our knowledge and experiences from around the globe. There is wealth of information on this site (you can do a search on any subject) and a lot of good people willing to share their experiences and encourage you. Just get a notebook and start taking notes to share with your boyfriend. See if there is a support group in your area or an exercise program for PD patients which can help in many ways. Will be looking forward to hearing from you.

[park_bear]

Welcome Laura!

There many good ideas to be found here. Exercise is very important, and I am finding the thiamine helpful

[ramondo4]

Hi Laura, welcome to our site , how fortunate your boyfriend is to have you behind him , exercise is undoubtably important but you will get a lot of medical advice from helpful Parkinson sufferers that may be confusing to you both. I try to keep my medication prescribed by my neuro to a minimum in case of unwanted side effects and I do not take any other supplements. Just my way of handling PD, we are all very different, good luck on this journey.

[rhyspeace12]

My husband has been helped by thiamine too.

[laglag]

Hi. I was diagnosed at 46,14 yrs ago & am doing fairly well. The 2 most important things that help me are keeping stress at a minimum & exercising. I've been doing Rock Steady Boxing for 12 yrs. It's strictly for PwP's & it's non-contact. See if there is one close to you. rocksteadyboxing.org

[lauras5469 in reply to laglag]

Thank you so much! I never would have guessed that there was this option in our relatively small area but there is! 2 actually. Definitely looking into it.

[laglag in reply to lauras5469]

There are over 500 affliates all around the world. Some are more expensive than others, but because you are a caregiver, you can workout with him for free.

[lauras5469 in reply to laglag]

Awesome - the one here is in the same block as where I work! I emailed them for info so hopefully it works out.

[Ratzkywatzky]

Lot's of really useful stuff on here and lot's of 'theories' which should be further investigated and not taken at face value! Personally I echo the common belief on this site that exercise is key and that seems to be backed up by many experiences here. A range of exercises to include fast repetition, large movements and strenuous enough to cause a rise in heart rate and to break a sweat all good and some reports say as effective as medication.

[ddmagee1]

Welcome! This will be very helpful, in your journey, for information about PD, from people who live with it on a daily basis. Initially, many people, and their loved ones, feel overwhelmed when hearing a diagnosis of Parkinson's. Because neuro-degeneration of Parkinson's works a little different for each person, in terms of timing, of when and what is affected ( example: muscle stiffness or tremor ), and severity, each person's experience is different. I have found that exercise, and being positive, and taking it one step at a time, so to speak, helps. It is a chronic condition that affects people in different ways. What works for one person, may not work for another. One can live with mild symptoms for a long time, before advancement of more symptoms. There are medicines and treatments that are very helpful. Good luck to you and your boyfriend.

[alaynedellow]

Hi Laura, welcome to our world. This forum is brilliant , we are all different and this disease is unique to us all. Exercise is paramount as is relaxation and stresslessness. I am keeping clear of prescrip meds at the moment as i am only 55 and aim to be around for a while I have just started taking Mannitol (plant based sugar) and i have found it amazing. You can research all of our tips, medicines and herbal supplements on this forum and be as informed as you can be about making your own choices. Good luck to you both its very scary at the moment but knowledge is empowerment.

[Theyak]

Just been told I have PD. Being 46 I hope I have a while to go. Where does one obtain Mannitol? Thanks

[faridaro in reply to Theyak]

I got Mannitol sold by Bulk Supplements on Amazon, but there are probably other brands on the internet.