Disabled with Parkinson's disease!

[donjuan61]

Hi, I am new !

My name is Don De Baene ! I live in Chatham ,Ontario, Canada ! I am licensed carpenter that was diagnosed with Parkinson's Disease 32 years ago when I was 29 years old ! I had the DBS surgery in 2013 !

Thanks Don

[Hidden]

Hi, I am not new. I am retired, 69 yo and five years post dx. Tremor dominant.

[donjuan61 in reply to Hidden]

Hi,

How are you doing?Where are you located?

[Hidden in reply to donjuan61]

Long story but short version. Skin cancer, and also epidural injection for excruciating back/hip/leg pain not related to skin cancer. I have tried many different Park meds and have found no success w/ reducing tremors. I have only minor gait issues and no "freezing". I have not had any falls. They say five years are the honeymoon years. I am afraid of what my near future holds. Taking C/L 3x at 50/200 and thiamine 250mg/day and Emergen C. I use inversion table three times a day at 3-4 min each to improve blood flow to my substantia nigra and also to decompress vertebrae.

I live in Nogal,NM with my caregiver angel wife.

[donjuan61 in reply to Hidden]

HI ,

Have you tried medical marijuana for your tremor ! it also might help with the pain!

Don

[Hidden in reply to donjuan61]

I tried CBD with no benefit

[donjuan61 in reply to Hidden]

Have you thought about the Deep brain stimulation surgery? This might help !

Don

[Hidden in reply to donjuan61]

My neuro is against DBS and so am I. My condition does not warrant.

[Mlitt0818 in reply to Hidden]

Can you explain why ? Thanks.

[donjuan61 in reply to Mlitt0818]

I am not sure what you want me to explain!

Thanks Don

[Mlitt0818 in reply to donjuan61]

Why your neurologist doesn't favor DBS. Is it not effective for tremor dominant Parkinson's?

[Hidden in reply to Mlitt0818]

It was his advice the same time that I was diagnosed. He said MJF experience was not good.

[Mlitt0818 in reply to Hidden]

Ok, now I need to know what MJF means! Lol

[Hidden in reply to Mlitt0818]

Michael Fox

[Mlitt0818 in reply to Hidden]

Oh! Thanks! Lol

[Pelley in reply to Hidden]

MJF actually had a procedure done prior to the availability of DBS where the palladium area of the brain is cauterized. It was a much riskier procedure and unlike DBS it is irreversible, .....called a Pallidotomy

[racerCP in reply to Hidden]

Michael J Fox did not have DBS, he had a procedure which excises a portion of the Brain to get rid of tremors. His procedure is irreversible whereas DBS is reversible.

[stolimon in reply to donjuan61]

i get no direct relief from tremors with my use of thc and/or cbd; inhaled or ingested. i do get a lessening of stress, however, and continue daily use. however, my ability to smoke my home grown pesticide free product is limited by loss of strength in breathing and edibles make me tired and lazy. i recently quit cannabis for a month with very little difference in my symptoms, but a noticeable difference in my dreams (more vivid and unpredictable when i am NOT using thc) and i am generally more comfortable when using. it's been six years since diagnosis and c/l and other affordable meds and supplements i've tried are losing their effect. i have temporarily discontinued use of turmeric, ragawandha, k2, cal-mag; and have tried azilect, amantadine, ropinirol and atremorine without noticeable effect.

[donjuan61 in reply to stolimon]

HI,

Have you tried Rytary? It has been approved in the USA,but not Canada yet! It is a time released drug that releases when your body needs it! If you google a search on Rytary you can see for yourself!There are supposed to e less side effects too!

Thanks Don

[Danter1973 in reply to donjuan61]

I call rytary rat poison It did everything but kill me

[Donzim in reply to Danter1973]

I have heard that about Rytary but our experience was fantastic...it did a remarkable job controlling my husbands symptoms. One major problem with it is that many docs think it can be just substituted dose for dose like other drugs. NOT SO. The dosing and timing for Rytary is entirely different and there is the conversion formula is very tricky. Sorry you had such a terrible experience.

[Tiger101 in reply to Danter1973]

Danter1973 My husband was diagnosed about 2 months ago. They started him on Rytary and does not seem to be helping him. Can you tell me what happened to you when you were taking It?

[silvestrov in reply to Hidden]

RP,

What type of skin cancer do/did you have?

[Hidden in reply to silvestrov]

basal cell (arm and eye lid)

[Enidah in reply to Hidden]

Well that's the pits Roy! I've had one basal cell on my arm and I now have one on the side of my nose, it needs to be cut off, but the eyelid sounds much worse. Yep, we get lovelier every day!

[Hidden in reply to Hidden]

Inversion Table, NO!

"I use inversion table three times a day at 3-4 min each to improve blood flow to my substantia nigra and also to decompress vertebrae."

After only two weeks my back felt no better AND its use resulted in giving me an inguinal hernia.

[Astra7]

Welcome. My husband is from Brockville. Is that close?

You were diagnosed very young. How are you going?

[donjuan61]

Hi,

I am between London and Windsor! I am doing ok ! I am still walking albeit with a cane most of the time! I have trouble getting going some days! Where are you located?

Thanks for asking !

Don

[donjuan61]

Does anyone know about a drug names rytary?

[Serenity_finaly-1 in reply to donjuan61]

yes

[donjuan61 in reply to Serenity_finaly-1]

HI Serenity,

Are you on Rytary now? How effective is it ?

Thanks Don

[Serenity_finaly-1 in reply to donjuan61]

Unfortunately my insurance who paid for it last year, didn't this year. I am now taking 1 sinemet cr every 5 hours. Rytary worked really well for me but I found something to smooth out the off times. You can buy a lot of this something for the $800.00 a month for prescription Rytary.

[Danter1973 in reply to donjuan61]

I call rytary rat poison It did everything but kill me bad lower back pain bad dyskonias

[Donzim in reply to donjuan61]

See above.

[Beckey]

Hi Don, good to meet you! I'm in San Francisco, California. My doctor at UCSF has suggested DBS is probably in my future but I'm very nervous about it. Any words of advice?

[donjuan61 in reply to Beckey]

Hi Beckey,

You have nothing to worry about ! My surgery went great and I had a 12 hour surgery on a Friday and was home Saturday ! What are your symptoms ? How long ago were you diagnosed with PD and art what age?

Good Luck when you have the surgery and let me know how you make out

Don

[Beckey in reply to donjuan61]

My primary symptom has been a right hand and arm tremor. Occasionally I get night disturbances, too. In fact night before last I dreamed I was running down a hillside full of purple flowers and kabong! I hit the floor with a thud and it did NOT feel like a field of flowers. And now and then I wake up screaming or yelling, though I never have bad dreams. I started taking sinemet, which quiets down the tremor but gives me a whopping case of dystonia. I feel like the Wicked Witch of the West after the house crushes her. You know how her feel curl up? That's what it feels like, ha.

The tremor started in 2006 and affected both my right hand and foot. I saw a neuro who prescribed neurontin and it went away. So in 2010, it started up again -- but not in my foot -- and this time neurontin didn't help, and neither did a handful of other drugs. The neuro I see now said she's never seen a tremor come and go, but she has no doubt it's Parkinson's. I was hoping it might be essential tremor but no such luck.

[Enidah in reply to Beckey]

Hi Becky, I am just south of you in the Monterey area and at one of our support groups Dr Khan spoke. He is with the California NeuroInstitute in San Jose and operates out of Good Samaritan Hospital. I found it very reassuring and was able to see people in my group that had it done that are doing wonderfully. I will definitely have the surgery when I need it down the road. As far as I know UCSF is also a very good place to go. Stanford didn't get as high marks from the people I have spoken with. Keep Kahn in mind if a second opinion would be helpful for you.

[Beckey in reply to Enidah]

I sure will, Enidah. Thanks!

[Jenzo]

Hi Don - welcome! I too live in Canada, I am 46 and was only diagnosed a year ago.

[donjuan61 in reply to Jenzo]

Hi,Thanks!

How are you doing? Where are you located in Canada?What are your symptoms ?

[Jenzo in reply to donjuan61]

Hi Don I'm from Toronto. Main symptoms tremor left side, gait problems which include foot drag and very slow walking as well as general stiffness and neck/back pain. I'm on sinemet and entecapone and so far so good. Has eased my symptoms. Some days entirely seem normal, others not as effective. Learning how to live with this thing. I still work a fairly stressful high pressure full time job managing a department at an insurance company but it's all I know. I am too young to be able to retire and I find keeping busy is good. I just tire more easily but it's not yet debilitating. I am very happy to hear the DBS worked for you. Have you been active or been able to remain active most of your life with Parkinson's? I think exercise is very helpful.

[donjuan61 in reply to Jenzo]

Hi,

Yes I worked in a factory until 2008 when it closed. I have a little wood working shop in my back yard that I can go to ! I cut the grass until last year.When I was first diagnosed I worked full time as a carpenter and I built an addition on our house. I also tire very easily and have trouble sleeping at night!Staying active also takes your mind off the disease!A drug called Rytary is supposed to be the drug of the future for the treatment of Parkinson's It is a slow release tablet if they ever approve for use in Canada!If you have any more questions don't hesitate to contact me. Are you a Leaf fan?

Thanks Don

[gurdeep11]

don i m 40 from bc, can u tell more about dbs pls r u on skype?

[donjuan61 in reply to gurdeep11]

Hi,

No I am not on Skype! I had my DBS surgery done in London ,Ontario in Jan 2013 by Dr. Parent !The surgery was 12 hours long with no complications! The surgeon wakes you up about every 4 hours to ask you to move different parts of your body eg (fingers ,toes etc ) to make sure he is the right area of the brain! Then he let's you drift off until he needs to wake you again! Every thing went well and I went home less than 24 hours after the surgery!There is nothing to worry about with the surgery!

Thanks Don

[gurdeep11 in reply to donjuan61]

thanks Don, but is it worth it, i m fully disabled, no meds worked. could u guide me regarding diability benefits

[donjuan61 in reply to gurdeep11]

HI,

I am not sure how the disability benefits work! I will have my wife send some info tonight when she gets home from work!

Thanks Don

[donjuan61 in reply to gurdeep11]

Here is a link:

servicecanada.gc.ca/fi-if/i...

You will see the form(s) you need to apply. I really can't remember what I did to apply, but this is the Canada gov't website with info. In Ontario we also have ODSP (Ontario Disability Plan) for people on social assistance. CPP is if you've contributed to CPP. Also, here's a link for the disability tax credit:

cra-arc.gc.ca/disability/

Don's neurologist didn't think he'd qualify. But our accountant asked who his neurologist was and sent him the form and he had no problem qualifying. It has made a huge difference in the taxes he pays.

Also read up on tax deductions. I save all receipts - adjustable bed, mobility scooter, remodel to a washroom to install accessible shower, and right height toilet, prescriptions (balance not covered by my plan), mileage to out of town appointments, if we pay transportation to local appointments etc. I give it to my accountant and let him figure out if it's deductible. Keep anything you think is related to your disability for tax deductions.

Check with your province to see if they offer any assistance.

Hope this helps.

Maureen

[racerCP in reply to gurdeep11]

I think one of the criteria for getting the surgery is that the PD meds work, but check it out.

[pbacon2549]

How is the DBS working for you?

[donjuan61]

HI,

Before my surgery I spent a lot of the day in bed,but now I am up a lot more! After the programming I am able to turn my stimulator up when my symptoms are bad!

Thanks Don

[missybee]

You are a very brave man...all good wishes and blessings to you.

[donjuan61 in reply to missybee]

Hi,

Not really,I have just lived with this disease so long that I know what to to expect!

I have a lot of support from my best friend ,my wife which helps a great deal.

Thanks for your comments!Do you have Parkinson's Disease?

Thanks Again

Don

[Cbgs]

How was the dbs surgery ? How do u feel since ? Are u still on other PD meds ?

[donjuan61 in reply to Cbgs]

The DBS surgery went fine with no complications! I was home the next day.Before the surgery I was in bed most of the day and now I am up a lot more! Yes I am still on the PD meds.If my symptoms are bad I just turn my stimulator up!

Thanks Don