Diagnosis confirmed

[JC2024]

Hi All,
Originally I was diagnosed with Hereditary spastic Paraparesis which I have been going to PT and OT for 18 months on and off. I have been hospitalized for a DVT in my leg. I have had a baclofen pump implanted. When my pump Dr. noticed my lack of improvement and speech starting to slur she referred to a ALS specialist who did a EMG and a brain neuron MRI which confirmed ALS I am in a wheelchair now and starting to loose function in my arms. I am a 63 year old male who like all of you life will never be the same. So I joined this fourm for support and undrstanding. I'm still processing this.

Thank you

 

[lgelb]

I'm very sorry. We will support you however we can.

It is a shock to hear "ALS" even though you already were diagnosed with a serious condition. Give yourself time to grieve and process, as you say.

As to your to-do list, you may want to consider voice banking since your speech is becoming impaired.

 

[Nikki J]

I too am sorry. I agree that if you want to use your own voice start banking asap. It only gets harder sadly. I hope you have lots of real life support including a good clinic You must feel like you are playing catch up having planned around hsp only to have the rules changed. Please let us know if any questions. You can also “vent” here when needed

 

[Mana]

I am also sorry to welcome you here, but you have found a safe place for support, information, and unconditional acceptance. If you have a caregiver, they would also find this forum helpful. I wish you the best.

Mana

 

[Marnes77]

I am so sorry. You have come to the best place. Everyone here understands and will help you in any way they can.

Sending love from Ireland.

❤

 

[JC2024]

Thank you all so much. This is so new to me I don't what to say. I find out Monday what my prognoses is and what my treatment plan is going to be.

Bless you all

 

[Firefighter58]

Hi there JC don't look at our situation as a downhill slide but as a fork in the road you are being forced to take as you have no choice sit back and try to make the best of the ride. I have lived with the disease for years and I would have not chosen to be here but I am . I now live in a nursing home, and I am confined to a wheelchair but life is still good. My wife comes in for the afternoon every other day and I see more of the kids than I did before the disease.


Al